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1. General practitioners may improve cervical screening equality in France

Author: Vladimir Druel, Cyrille Delpierre, Lisa Ouanhnon, Marie-Eve Rougé Bugat, and Pascale Grosclaude
Subjects: Screening, Cervical cancer, Public health, Social inequalities, Health care access, Public aspects of medicine, RA1-1270
Abstract: Abstract Background Vulnerable social groups have greater difficulty in accessing care and a lower quality of care. Health systems focused on primary care appear to be more effective, efficient and equitable. However, difficulties in accessing primary care are persisting. We focused on primary care screening for cervical cancer through Cervico-Uterine Smear (CUS), which has been shown to be effective in reducing disease incidence and mortality. In this study, we aimed to investigate the characteristics of women who undergo CUS according to the category of health professionals (general practitioners or gynaecologists) performing CUS and to analyse potential differences in access to care in terms of socioeconomic and geographical characteristics. Methods This was a retrospective observational study based on data from the main health insurance schemes in France, allowing analysis of health care consumption according to socioeconomic levels and proximity to health care services. We included women aged 25 to 64 years in 2012 for whom CUS would be a relevant procedure (695,694). The sociodemographic and territorial indicators were age, geographical area deprivation, and the availability of gynaecological care. The analysis was performed using multinomial logistic regression. Results A total of 202,271 (29%) patients underwent CUS; of whom 68% underwent CUS administered by gynaecologists and 28% were administered by general practitioners (GPs). However, inequalities in CUS screening rates were observed, with a decrease in the number of CUSs performed with increased age, a rural location, deprivation, and sparse health care provisions. Deprived people seemed less penalised by GPs. Conclusions Involvement of General Practitioners may improve cervical screening equality in France. The organisation of health systems around primary care may allow a better access to care and to account for the specific needs of deprived populations.
Published: 2024
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2. Increasing access to fertility preservation for women with breast cancer: protocol for a stepped-wedge cluster randomized trial in France

Author: Maria Claudia Addamiano, Camille Joannes, Leslie Fonquerne, Charlotte Morel, Delphine Lauzeille, Lorène Belkadi, Fabienne Empereur, Pascale Grosclaude, Eric Bauvin, Cyrille Delpierre, Sébastien Lamy, and Marie-Anne Durand
Subjects: Fertility preservation, Breast cancer, Combined intervention, Information, Practitioners training, Social inequalities in health, Public aspects of medicine, RA1-1270
Abstract: Abstract Background With the increase in the number of long-term survivors, interest is shifting from cancer survival to life and quality of life after cancer. These include consequences of long-term side effects of treatment, such as gonadotoxicity. Fertility preservation is becoming increasingly important in cancer management. International recommendations agree on the need to inform patients prior to treatments about the risk of fertility impairment and refer them to specialized centers to discuss fertility preservation. However, the literature reveals suboptimal access to fertility preservation on an international scale, and particularly in France, making information for patients and oncologists a potential lever for action. Our overall goal is to improve access to fertility preservation consultations for women with breast cancer through the development and evaluation of a combined intervention targeting the access and diffusion of information for these patients and brief training for oncologists. Methods Firstly, we will improve existing information tools and create brief training content for oncologists using a qualitative, iterative, user-centred and participatory approach (objective 1). We will then use these tools in a combined intervention to conduct a stepped-wedge cluster randomized trial (objective 2) including 750 women aged 18 to 40 newly treated with chemotherapy for breast cancer at one of the 6 participating centers. As the primary outcome of the trial will be the access to fertility preservation counselling before and after using the combined intervention (brochures and brief training for oncologists), we will compare the rate of fertility preservation consultations between the usual care and intervention phases using linear regression models. Finally, we will analyse our approach using a context-sensitive implementation analysis and provide key elements for transferability to other contexts in France (objective 3). Discussion We expect to observe an increase in access to fertility preservation consultations as a result of the combined intervention. Particular attention will be paid to the effect of this intervention on socially disadvantaged women, who are known to be at greater risk of inappropriate treatment. The user-centred design principles and participatory approaches used to optimize the acceptability, usability and feasibility of the combined intervention will likely enhance its impact, diffusion and sustainability. Trial registration Registry: ClinicalTrials.gov. Trial registration number: NCT05989776. Date of registration: 7th September 2023. URL: https://classic.clinicaltrials.gov/ct2/show/NCT05989776 . Protocol version Manuscript based on study protocol version 2.0, 21st may 2023.
Published: 2024
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3. Identification and Economic Evaluation of Differentiated Thyroid Cancer Care Consumption Patterns Using Sequence Analysis

Author: Romain Demeulemeester, Pascale Grosclaude, Solange Grunenwald, Philippe Saint-Pierre, Nicolas Savy, and Nadège Costa
Subjects: differentiated thyroid cancer, costs, care consumption patterns, optimal matching, clustering, Public aspects of medicine, RA1-1270
Abstract: Objectives: This study aims to assess the impact of care consumption patterns and individual characteristics on the cost of treating differentiated thyroid carcinoma (DTC), in France, with a specific emphasis on socioeconomic position.Methods: The methodology involved a net cost approach utilising cases from the EVATHYR cohort and controls from the French National Health Insurance database. Care consumption patterns were created using Optimal Matching and clustering techniques. The individual characteristics influence on patterns was assessed using multinomial logistic regression. The individual characteristics and patterns influence on care costs was assessed using generalised estimating equations.Results: The findings revealed an average cost of €13,753 per patient during the initial 3 years. Regression models suggested the main predictors of high DTC specific care consumption tended to include having a high risk of cancer recurrence (OR = 4.97), being a woman (OR = 2.00), and experiencing socio-economic deprivation (OR = 1.26), though not reaching statistical significance. Finally, high DTC-specific care consumers also incurred higher general care costs (RR = 1.35).Conclusion: The study underscores the increased costs of managing DTC, shaped by consumption habits and socioeconomic position, emphasising the need for more nuanced DTC management strategies.
Published: 2024
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4. The Influence of Sex and/or Gender on the Occurrence of Colorectal Cancer in the General Population in Developed Countries: A Scoping Review

Author: Amalia Martinez, Pascale Grosclaude, Sébastien Lamy, and Cyrille Delpierre
Subjects: gender, sex, incidence, colorectal cancer, nursing, Public aspects of medicine, RA1-1270
Abstract: Objective: Gender as the “sociocultural role of sex” is underrepresented in colorectal cancer incidence studies, potentially resulting in underestimated risk factors’ consequences and inequalities men/women. We aim to explore how literature focusing on differences between men and women in the incidence of colorectal cancer interprets these differences: through sex- or gender-related mechanisms, or both?Methods: We conducted a scoping review using PubMed and Google Scholar. We categorized studies based on their definitions of sex and/or gender variables.Results: We reviewed 99 studies, with 7 articles included in the analysis. All observed differences between men and women. Six articles examined colorectal cancer incidence by gender, but only 2 used the term “gender” to define exposure. One article defined its “sex” exposure variable as gender-related mechanisms, and two articles used “sex” and “gender” interchangeably to explain these inequalities. Gender mechanisms frequently manifest through health behaviors.Conclusion: Our results underscore the need for an explicit conceptual framework to disentangle sex and/or gender mechanisms in colorectal cancer incidence. Such understanding would contribute to the reduction and prevention of social health inequalities.
Published: 2024
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5. Link between the referring physician and breast and cervical cancers screening: a cross-sectional study in France

Author: Lisa Ouanhnon, Marie-Eve Rouge Bugat, Vladimir Druel, Pascale Grosclaude, and Cyrille Delpierre
Subjects: General practitioners, Continuity of patient care, Early detection of cancer, Uterine cervical neoplasms, Breast neoplasms, Socioeconomic factors, Medicine (General), R5-920
Abstract: Abstract Background The aims of the “médecin traitant” or referring physician (RP) reform, introduced in France in 2004, were to improve the organisation and quality of care and to allow for greater equity, particularly in terms of prevention. The objective of our study was to evaluate the effect of having a declared RP on the uptake of screening for breast and cervical cancers, and to explore the mechanisms involved. Methods We used an existing dataset of 1,072,289 women, which combines data from the Health Insurance information systems, with census data. We built multivariable logistic regression models to study the effect of having a RP on the uptake of mammography and pap smear, adjusted for age, socio-economic level, health status and healthcare provision. We secondarily added to this model the variable “having consulted a General Practitioner (GP) within the year”. Finally, we evaluated the interaction between the effect of having a referring physician and the area of residence (metropolitan/urban/rural). Results Patients who had a declared RP had a significantly higher uptake of mammography and pap smear than those who did not. The strength of the association was particularly important in very urban areas. The effect of having visited a GP seemed to explain a part of the correlation between having a RP and uptake of screening. Conclusions Lower rates of gynaecological screening among women without an RP compared to those with an RP may partly reflect a specific behaviour pattern in women less adherent to the health care system. However, this result also shows the importance of the RP, who assumes the key role of relaying public health information in a more personalised and adapted way.
Published: 2023
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6. Access to information and oncofertility consultation for young women with breast cancer: a population-based study

Author: Florian Martinet-Kosinski, Sébastien Lamy, Eric Bauvin, Florence Dalenc, Charlotte Vaysse, and Pascale Grosclaude
Subjects: Medicine, Science
Abstract: Abstract Non-menopausal women with breast cancer treated with chemotherapy are at intermediate risk of post-treatment amenorrhea and decreased fertility. Although they should receive appropriate information, studies until now show that this is inadequate. We investigated the proportion of women who received information about this risk during the pre-treatment consultation, and those who received an oncofertility consultation to preserve their gametes. We also analysed the medical and non-medical factors influencing the transmission of information to patients and their uptake of oncofertility consultations. We included women aged 18–40 years treated with chemotherapy for breast cancer between 2012 and 2017 in the Midi-Pyrénées region (ca. 3 million inhabitants), France. Studied variables were included in a multilevel model. Among the 575 women, 41% of the women received information and 28% received an oncofertility consultation. These two steps on the care pathway were significantly influenced by the type of care structure, the woman's age, her parity at the time of diagnosis, and the metastatic status of the cancer. Female oncologist gender was significantly associated with higher transmission rate. We found no association between neoadjuvant chemotherapy status, level of deprivation (EDI), triple-negative status, marital status, and first-degree family history of cancer and information transmission or uptake of oncofertility consultation. Our study shows that not enough women are informed and have recourse to an oncofertility consultation. Despite a legal obligation, the health care system does not offer the necessary conditions for access to oncofertility care.
Published: 2023
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7. Experimental system of care coordination for the home return of patients with metastatic cancer: a survey of general practitioners

Author: Laëtitia Gimenez, Vladimir Druel, Anastasia Bonnet, Cyrille Delpierre, Pascale Grosclaude, and Marie-Eve Rouge-Bugat
Subjects: Care coordination, Cancer, General practitioner, Satisfaction, Medicine (General), R5-920
Abstract: Abstract Background To promote improved coordination between general practice and hospital, the French clinical trial CREDO (“Concertation de REtour à DOmicile”) is testing an innovative experimental consultation for patients with metastatic cancer who are returning home. This consultation involves the patient, the patient’s referring GP (GPref) and a GP with specific skills in oncology (GPonc) in a specialized care center. The objective of our study is to explore the satisfaction of GPsref about this consultation, in the phase of interaction between GPonc and GPref. Methods This observational, cross-sectional, multicenter study explored the satisfaction of GPsref who had participated in this type of consultation, via a telephone survey. Results One Hundred GPsref responded to the questionnaire between April and September 2019 (overall response rate: 55%). 84.5% were satisfied with the consultation, and the majority were satisfied with its methods. Half of the GPsref learned new information during the consultation, three-quarters noted an impact on their practice, and 94.4% thought that this type of coordination between the GPref and the oncology specialist could improve general practice - hospital coordination. Conclusions For GPs, the CREDO consultation seems to be practical and effective in improving the coordination between general medicine and hospital. GPs would benefit from such coordination for all patients with cancer, several times during follow-up and at each occurrence of a medically significant event.
Published: 2022
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8. The stake of informing patients of the risk of hypofertility after chemotherapy for breast cancer

Author: Florian Martinet-Kosinski, Sébastien Lamy, Eric Bauvin, Florence Dalenc, Charlotte Vaysse, and Pascale Grosclaude
Subjects: oncofertility, breast cancer, information—access and interaction, social inequalities, woman health, Public aspects of medicine, RA1-1270
Abstract: IntroductionToo few women with invasive breast cancer are informed of the risk of hypofertility after chemotherapy. However, this risk can be prevented by offering gamete preservation by a specialized team. We believe that if more women were informed about gamete preservation, more of them would accept it.ObjectivesThe primary objective is to describe each step of the oncofertility care pathway from provision of information to gamete preservation. The secondary objective is to estimate the impact of not receiving information by determining the proportion of women who would have undergone gamete preservation if they had been informed.Method575 women aged 18–40 years treated with chemotherapy for breast cancer between 2012 and 2017 in the Ouest-Occitanie region (~3 million inhabitants) were included. We first constructed a multivariate predictive model to determine the parameters influencing the uptake of the offer of gamete preservation among women who were informed and then applied it to the population of uninformed women.ResultsOnly 39% of women were informed of the risks of hypofertility related to chemotherapy and 11% ultimately received gamete preservation. If all had been informed of the risk, our model predicted an increase in gamete preservation of 15.35% in the youngest women (
Published: 2023
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9. Study protocol of the CREDO randomised controlled trial: evaluation of a structured return home consultation for patients suffering from metastaticcancer

Author: Cyrille Delpierre, Laetitia Gimenez, Jean-Pierre Delord, Laurent Molinier, Nadège Costa, Pascale Grosclaude, Marie-Eve Rougé Bugat, and Vladimir Druel
Subjects: Medicine
Abstract: Introduction Patients suffering from cancer are often managed by multiple health professionals. General practitioners with specific skills in oncology could facilitate care coordination between hospital and general practice in the management of these patients. To explore this hypothesis, we run a randomised clinical trial, called ‘Concertation de REtour à DOmicile, CREDO’. The main objective is to explore the effectiveness of a ‘return home’ consultation compared with standard care. The number of unscheduled visits to care centres is used to evaluate the effectiveness of the treatment.Methods and analysis CREDO is a multicentre, randomised, open-label, prospective trial. It takes place in two specialised cancer care centres in southern France (Occitania region). Patient inclusion criteria are: be over 18 years old; be treated with a first cycle of metastatic chemotherapy in a specialised cancer care centre; have a metastatic solid cancer and be returning home after treatment. Patients are randomised in two arms: standard-arm (conventional management) or intervention-arm (CREDO management). In the intervention arm, a ‘return home’ consultation is carried out in three steps. First, the investigating GP (GP with specific skills in oncology) from the specialised care centre collects information about the patient and patient’s management choices. Then, the investigating GP conducts an interview with the patient’s referring GP to quickly communicate and discuss information about the patient. Finally, the investigating GP summarises these exchanges and transmits this information to the care centres chosen by the patient.All the patients are followed for 1 year.Statistical and medicoeconomic analysis are planned.Ethics and dissemination This clinical trial is registered under ClinicalTrials.gov identifier and was approved by the ethics committee of South-Western French Committee for the Protection of Persons (number: 2016-A01587-44) and from the French National Drug Safety Agency (ANSM, number: 2016111500034).An international publication of the final results and conference presentations will be planned.Trial registration number NCT02857400.
Published: 2023
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10. Impact of a health literacy intervention combining general practitioner training and a consumer facing intervention to improve colorectal cancer screening in underserved areas: protocol for a multicentric cluster randomized controlled trial

Author: Marie-Anne Durand, Aurore Lamouroux, Niamh M. Redmond, Michel Rotily, Aurélie Bourmaud, Anne-Marie Schott, Isabelle Auger-Aubin, Adèle Frachon, Catherine Exbrayat, Christian Balamou, Laëtitia Gimenez, Pascale Grosclaude, Nora Moumjid, Julie Haesebaert, Helene Delattre Massy, Julia Bardes, Rajae Touzani, Laury Beaubrun en Famille Diant, Clémence Casanova, Jean François Seitz, Julien Mancini, and Cyrille Delpierre
Subjects: Colorectal cancer screening, Health literacy, Intervention, General practitioner training, health disparities, Public aspects of medicine, RA1-1270
Abstract: Abstract Background Colorectal cancer (CRC) is a leading cause of cancer burden worldwide. In France, it is the second most common cause of cancer death after lung cancer. Systematic uptake of CRC screening can improve survival rates. However, people with limited health literacy (HL) and lower socioeconomic position rarely participate. Our aim is to assess the impact of an intervention combining HL and CRC screening training for general practitioners (GPs) with a pictorial brochure and video targeting eligible patients, to increase CRC screening and other secondary outcomes, after 1 year, in several underserved geographic areas in France. Methods We will use a two-arm multicentric randomized controlled cluster trial with 32 GPs primarily serving underserved populations across four regions in France with 1024 patients recruited. GPs practicing in underserved areas (identified using the European Deprivation Index) will be block-randomized to: 1) a combined intervention (HL and CRC training + brochure and video for eligible patients), or 2) usual care. Patients will be included if they are between 50 and 74 years old, eligible for CRC screening, and present to recruited GPs. The primary outcome is CRC screening uptake after 1 year. Secondary outcomes include increasing knowledge and patient activation. After trial recruitment, we will conduct semi-structured interviews with up to 24 GPs (up to 8 in each region) and up to 48 patients (6 to 12 per region) based on data saturation. We will explore strategies that promote the intervention’s sustained use and rapid implementation using Normalization Process Theory. We will follow a community-based participatory research approach throughout the trial. For the analyses, we will adopt a regression framework for all quantitative data. We will also use exploratory mediation analyses. We will analyze all qualitative data using a framework analysis guided by Normalization Process Theory. Discussion Limited HL and its impact on the general population is a growing public health and policy challenge worldwide. It has received limited attention in France. A combined HL intervention could reduce disparities in CRC screening, increase screening rates among the most vulnerable populations, and increase knowledge and activation (beneficial in the context of repeated screening). Trial registration Registry: ClinicalTrials.gov. Trial registration number: 2020-A01687-32 . Date of registration: 17th November 2020.
Published: 2021
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11. Cross-sectional nationwide mixed-methods population-based study of living conditions, and identification of sexual and fertility profiles among young women after breast cancer in France: the Candy study protocol

Author: Anne-Valérie Guizard, Michel Velten, Patricia Delafosse, Sandrine Plouvier, Agnes Dumas, Anne-Sophie Woronoff, Brigitte Tretarre, Marc Colonna, Florence Molinie, Simona Bara, Benedicte Lapotre-Ledoux, Sylvain Ladoire, Gautier Defossez, Pascale Grosclaude, Isabelle Desmoulins, Charles Coutant, Juliette Plenet, Gaëlle Coureau, Jacqueline Deloumeaux, Emerline L F Assogba, Caroline Mollévi, Tienhan Sandrine Dabakuyo-Yonli, Karima Hammas, Laetitia Daubisse-Marliac, Anne Cowppli-Bony, Tania d'Almeida, Clarisse Joachim-Contaret, and L Manuella Imounga-Desroziers
Subjects: Medicine
Abstract: Introduction At the end of the treatment, many young breast cancer (BC) survivors face difficulties related to fertility and sexuality, mainly due to the side effects of treatment. Integrating patient needs into medical decisions is becoming increasingly essential for high quality care. To this end, there is a compelling need to elicit patients’ perspectives through qualitative studies, to understand their experiences and needs in the aftermath of cancer. We aim to: (1) identify clinical, social and economic determinants of sexuality and fertility, and describe other living conditions of young BC survivors in France; and (2) explore young women’s experience after BC in relation to clinical and information needs about fertility preservation and sexual health.Methods and analysis This is a mixed-methods, cross-sectional, population-based study. In the quantitative component, women diagnosed with non-metastatic BC between 2009 and 2016 and aged 40 years or younger at diagnosis will be identified through the French network of cancer registries (FRANCIM). Participants will complete self-report questionnaires including standardised measures of sexuality, health-related quality of life (HRQoL), anxiety, depression, social deprivation and social support. Fertility and professional reintegration issues will also be assessed. Sexuality profiles will be identified by ascending hierarchical classification and fertility profiles will be identified by latent class models. Determinants of sexuality, fertility and HRQoL will be identified using a mixed regression model. Subsequently, semistructured interviews will be performed with a sample of 30 women who participated in the quantitative study. Interviews will be recorded, transcribed synthetically and content analysis will be performed, with the aid of NVivo software.Ethics and dissemination This study will be performed in accordance with the declaration of Helsinki. The protocol was approved in October 2020 by the Committee for the Protection of Persons North-West III (20.07.16.44445) and by the French national data protection authority (CNIL-MR003 No1989764-v0).The results of this project will be communicated to the scientific community through publications in international scientific peer-reviewed journals and communications to national and international congresses. Popularised results will also be provided to patient associations. The results of Candy project will also be published on the website of the sponsor, www.cgfl.fr.
Published: 2022
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12. Improving communication between the general practitioner and the oncologist: a key role in coordinating care for patients suffering from cancer

Author: Vladimir Druel, Laetitia Gimenez, Kim Paricaud, Jean-Pierre Delord, Pascale Grosclaude, Nathalie Boussier, and Marie-Eve Rougé Bugat
Subjects: Cancer, Communication, Disclosure, General practitioner, Oncologist, Neoplasms. Tumors. Oncology. Including cancer and carcinogens, RC254-282
Abstract: Abstract Background Patients suffering from cancers are increasingly numerous in general practice consultations. The General Practitioner (GP) should be at the heart of the management of patients. Several studies have examined the perceptions of GPs confronted with the patient suffering from cancer and the relationships of GPs with oncologists, but few studies have focused on the patients’ perspective. We studied the three-way relationship between the oncologist, the GP, and the patient, from the patient’s point of view. Methods A questionnaire validated by a group consisting of GPs, oncologists, nurses, an epidemiologist and quality analyst, was administered over a three-week period to patients suffering from cancer receiving chemotherapy in a day hospital. Results The analysis was based on 403 questionnaires. Patients had confidence in the GP’s knowledge of oncology in 88% of cases; 49% consulted their GP for pain, 15% for cancer-related advice, and 44% in emergencies. Perceived good GP/oncologist communication led patients to turn increasingly to their GP for cancer-related consultations (RR = 1.14; p = 0.01) and gave patients confidence in the GP’s ability to manage cancer-related problems (RR = 1.30; p
Published: 2020
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13. Social and territorial inequalities in breast and cervical cancers screening uptake: a cross-sectional study in France

Author: Cyrille Delpierre, Sebastien Lamy, Pascale Grosclaude, Lisa Ouanhnon, Marie-Eve Rougé Bugat, and Vladimir Druel
Subjects: Medicine
Published: 2022
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14. Health care expenditures among long-term survivors of pediatric solid tumors: Results from the French Childhood Cancer Survivor Study (FCCSS) and the French network of cancer registries (FRANCIM).

Author: Daniel Bejarano-Quisoboni, Nathalie Pelletier-Fleury, Rodrigue S Allodji, Brigitte Lacour, Pascale GrosClaude, FRANCIM Group, Hélène Pacquement, François Doz, Delphine Berchery, Claire Pluchart, Piere-Yves Bondiau, Julie Nys, Angela Jackson, Charlotte Demoor-Goldschmidt, Agnès Dumas, Cécile Thomas-Teinturier, Giao Vu-Bezin, Dominique Valteau-Couanet, Nadia Haddy, Brice Fresneau, and Florent de Vathaire
Subjects: Medicine, Science
Abstract: BackgroundChildhood cancer survivors (CCS) may require lifelong medical care due to late effects of cancer treatments. Little is known about of their healthcare utilization and expenditures at long-term especially in publicly funded health care system. We aim to estimate and describe the health care expenditures among long-term CCS in France.MethodsA total of 5319 five-year solid CCS diagnosed before the age of 21 between 1945 and 2000 in France were identified in the French Childhood Cancer Survivors Study cohort (FCCSS) and the French cancer registry. Information about health care expenditure was taken from the French national health data system between 2011 and 2016, and was described according to survivors' characteristics. Generalized linear models were used to determine associations between health care expenditures and survivors' characteristics.ResultsMean annual amount of healthcare expenditures was € 4,255. Expenditures on hospitalizations and pharmacy represents 60% of total expenditures. Mean annual of healthcare expenditures were higher at increasing age, among women survivors (€ 4,795 vs € 3,814 in men) and in central nervous system (CNS) tumor survivors (€ 7,116 vs € 3,366 in lymphoma and € 3,363 in other solid tumor survivors).ConclusionsChildhood cancer survivorship is associated with a substantial economic burden in France. We found that female gender and CNS primary cancer were associated with increased healthcare expenditures.
Published: 2022
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15. Using ecological socioeconomic position (SEP) measures to deal with sample bias introduced by incomplete individual-level measures: inequalities in breast cancer stage at diagnosis as an example

Author: Sébastien Lamy, Florence Molinié, Laetitia Daubisse-Marliac, Anne Cowppli-Bony, Stéphanie Ayrault-Piault, Evelyne Fournier, Anne-Sophie Woronoff, Cyrille Delpierre, and Pascale Grosclaude
Subjects: Social inequalities, Methodology, Cancer, Population-based data, Deprivation, Public aspects of medicine, RA1-1270
Abstract: Abstract Background When studying the influence of socioeconomic position (SEP) on health from data where individual-level SEP measures may be missing, ecological measures of SEP may prove helpful. In this paper, we illustrate the best use of ecological-level measures of SEP to deal with incomplete individual level data. To do this we have taken the example of a study examining the relationship between SEP and breast cancer (BC) stage at diagnosis. Methods Using population based-registry data, all women over 18 years newly diagnosed with a primary BC in 2007 were included. We compared the association between advanced stage at diagnosis and individual SEP containing missing data with an ecological level SEP measure without missing data. We used three modelling strategies, 1/ based on patients with complete data for individual-SEP (n = 1218), or 2/ on all patients (n = 1644) using an ecological-level SEP as proxy for individual SEP and 3/ individual-SEP after imputation of missing data using an ecological-level SEP. Results The results obtained from these models demonstrate that selection bias was introduced in the sample where only patients with complete individual SEP were included. This bias is redressed by using ecological-level SEP to impute missing data for individual SEP on all patients. Such a strategy helps to avoid an ecological bias due to the use of aggregated data to infer to individual level. Conclusion When individual data are incomplete, we demonstrate the usefulness of an ecological index to assess and redress potential selection bias by using it to impute missing individual SEP.
Published: 2019
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16. Assessment of the ecological bias of seven aggregate social deprivation indices

Author: Josephine Bryere, Carole Pornet, Nane Copin, Ludivine Launay, Gaëlle Gusto, Pascale Grosclaude, Cyrille Delpierre, Thierry Lang, Olivier Lantieri, Olivier Dejardin, and Guy Launoy
Subjects: Ecological social deprivation indices, Social inequalities in health, Aggregate-level, Individual-level, Public aspects of medicine, RA1-1270
Abstract: Abstract Background In aggregate studies, ecological indices are used to study the influence of socioeconomic status on health. Their main limitation is ecological bias. This study assesses the misclassification of individual socioeconomic status in seven ecological indices. Methods Individual socioeconomic data for a random sample of 10,000 persons came from periodic health examinations conducted in 2006 in 11 French departments. Geographical data came from the 2007 census at the lowest geographical level available in France. The Receiver Operating Characteristics (ROC) curves, the areas under the curves (AUC) for each individual variable, and the distribution of deprived and non-deprived persons in quintiles of each aggregate score were analyzed. Results The aggregate indices studied are quite good “proxies” for individual deprivation (AUC close to 0.7), and they have similar performance. The indices are more efficient at measuring individual income than education or occupational category and are suitable for measuring of deprivation but not affluence. Conclusions The study inventoried the aggregate indices available in France and evaluated their assessment of individual SES.
Published: 2017
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17. Disentangling the influence of living place and socioeconomic position on health services use among diabetes patients: A population-based study.

Author: Sébastien Lamy, Denis Ducros, Chloé Diméglio, Hélène Colineaux, Romain Fantin, Eloïse Berger, Pascale Grosclaude, Cyrille Delpierre, and Béatrice Bouhanick
Subjects: Medicine, Science
Abstract: This research investigates the influence of place of residence and diabetic patient's socioeconomic position on their use of health services in a universal health care system. This retrospective cross-sectional population-based study is based on the joint use of the Health Insurance information systems, an ecological indicator of social deprivation and an indicator of potential spatial accessibility of healthcare provision in the Midi-Pyrénées region. Using French healthcare insurance population-based data on reimbursement of out-of-hospital care during the year 2012, we study the use of health services among patients aged 50 and over (n = 90,136).We built logistic regression models linking health services use to socioeconomic position by geographic area, adjusted for age, gender, healthcare provision, information regarding patients precariousness, and long-term condition, used as proxy for the state of health. After adjustment for healthcare provision, the lower population density in the geographical area of concern, the lower the access to specialised care, independent of the patients' SEP. General practitioner attendance was higher among the patients with the lowest SEP without being clearly influenced by their living place. We found no clear influence of either patients' SEP or their living place on their access to biological follow-up. This study is an attempt to account for the geographical context and to go further in studying the social determinants of health among diabetes patients.
Published: 2017
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18. Contamination in control group led to no effect of PSA-based screening on prostate cancer mortality at 9 years follow-up: Results of the French section of European Randomized Study of Screening for Prostate Cancer (ERSPC)

Author: A. Villers, M. Soulié, Eveline A.M. Heijnsdijk, X. Rebillard, L. Daubisse, Brigitte Trétarre, S. Malavaud, Faiza Bessaoud, Pascale Grosclaude, Bernard Malavaud, H.J. de Koning, Monique J. Roobol, François Iborra, Jonas Hugosson, Pascal Rischmann, Urology, and Public Health
Subjects: Male, medicine.medical_specialty, Randomization, Time Factors, Urology, 030232 urology & nephrology, Rate ratio, law.invention, 03 medical and health sciences, symbols.namesake, Prostate cancer, 0302 clinical medicine, Randomized controlled trial, SDG 3 - Good Health and Well-being, law, Internal medicine, medicine, Humans, Poisson regression, Early Detection of Cancer, Aged, business.industry, Incidence (epidemiology), Prostate cancer mortality, Prostatic Neoplasms, Middle Aged, Prostate-Specific Antigen, medicine.disease, Cancer registry, symbols, business, Follow-Up Studies
Abstract: Summary Introduction European Randomized Study of Screening for Prostate Cancer (ERSPC) mortality results were reported for 7 European countries (excluding France) and showed a significant reduction in Prostate cancer (PCa) mortality. As those results have not been part of the global ERSPC results, it is of interest to report PCa mortality at a median follow-up of 9 years for French section of ERSPC. Material and methods Two administrative departments were involved in the study. Only men after randomization in the screening group were invited by mail to be screened by PSA testing with two rounds at 4–6 year intervals. Biopsy was recommended if PSA > = 3.0 ng/mL. No information other that the French Association of Urology recommandations on the use of PSA was offered to the control group (own decision of physicians and patients). Follow up was based on cancer registry database. Contamination defined as the receipt of PSA testing in control arm was measured. Poisson regression models were used to estimate the Rate Ratio (RR) of PCa mortality and incidence in the screening vs. control arm. Results Starting from 2003, 80,696 men aged 55–69 years were included. The percentage of men in the screening arm with at least one PSA test (compliance) was 31%. Compared to the control arm, PCa incidence increased by 10% in the screening arm (RR = 1.10; 95% CI = [1.04–1.16], P = 0.001), but PCa mortality did not differ (0.222 and 0.215 deaths/1000 person-years; RR = 1.03[0.75–1.42], P = 0.9). Discussion Limitations include low participation rate. PSA testing in the control arm was observed in 32% of men (contamination). Conclusions Contamination in control group led to no effect of PSA-based screening on prostate cancer mortality at 9 years follow-up. Level of evidence 3.
Published: 2020

19. Registration of Urothelial Tumours in Cancer Registries: How to Improve and Make It More Useful?

Author: Laetitia Daubisse-Marliac, Pascale Grosclaude, Marià Carulla, David Parada, Loreto Vilardell, Alberto Ameijide, Rafael Marcos-Gragera, and Jaume Galceran
Subjects: Urologic Neoplasms, Urinary Bladder Neoplasms, Health, Toxicology and Mutagenesis, Urinary Bladder, Public Health, Environmental and Occupational Health, otorhinolaryngologic diseases, Humans, urothelial tumours, bladder cancer, recording, reporting, registration practices, cancer registry, Neoplasms, Glandular and Epithelial, Registries
Abstract: Due to the differences in the definition, criteria of inclusion and coding of urothelial tumours (UTs), data of different cancer registries (CRs) are not comparable. The aim of this work is to study current practices of registration of UT in the European CR of the GRELL countries in order to propose new registration rules to correctly describe incidence and survival of progressive tumours like UT. A questionnaire was sent to 91 CRs to assess whether non-invasive (NI)UT, multiple UTs, UTs occurring outside or before the operating period and time between UTs are currently considered in tumour recording and reporting. All participating CRs (n = 42) record a NI bladder UT in sole occurrence. In case of progressive bladder UT, 98% of the CRs record at least one NIUT but 19% don’t record the invasive progression. 17% of the CRs don’t record an invasive pelvic tumour that occurs after a NI bladder UT. 19% of the CRs don’t record an invasive bladder UT that followed a NI tumour occurring outside the zone or period of time. The recording of two synchronous UTs is carried out with a grouping topography for 36% of the CRs. The same analysis conducted on the reporting of the incidence of UT also shows heterogeneity. We conclude that there is an urgent need to define clear rules for the registration of UT.
Published: 2022
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20. Adapting patients' oncological treatment through remote participation of general practitioners in multi-disciplinary consultation meetings: A feasibility study.

Author: Druel, Vladimir, Gimenez, Laetitia, Tachousin, Paul, Boussier, Nathalie, Bauvin, Eric, Pascale, Grosclaude, Beyne-Rauzy, Odile, and Bugat, Marie-Eve Rougé
Published: 2022
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21. Physician practice variation in head and neck cancer therapy: Results of a national survey

Author: Emilien Chabrillac, Agnès Dupret-Bories, Pascale Grosclaude, Pierre Bories, Sébastien Lamy, Fanny Cros, Sébastien Vergez, Antoine Nebout, Service d'otorhinolaryngologie et chirurgie cervico-faciale, Hôpital Larrey [Toulouse], CHU Toulouse [Toulouse]-CHU Toulouse [Toulouse], Centre d'Epidémiologie et de Recherche en santé des POPulations (CERPOP), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Registre des cancers du Tarn, 1, rue Lavazière, BP 37, 81001 Albi cedex, France, Institut Claudius Regaud, Centre régional de lutte contre le cancer, IUCT-O, Registre des cancers du Tarn, 31059 Toulouse, France., Groupe de recherche et d’analyse en santé des populations, Institut Claudius Regaud, Alimentation et sciences sociales (ALISS), Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), IUCT Oncopole - Institut Universitaire du Cancer de Toulouse, Réseau régional de cancérologie Onco-Occitanie, Institut Universitaire du Cancer de Toulouse - Oncopole (IUCT Oncopole - UMR 1037), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-CHU Toulouse [Toulouse]-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-CHU Toulouse [Toulouse]-Institut National de la Santé et de la Recherche Médicale (INSERM), Groupement InterRegional de Recherche Clinique et d'Innovation SudOuest (GIRCI SOHO), CHU Toulouse [Toulouse], CHU Toulouse [Toulouse]-Université Toulouse III - Paul Sabatier (UT3), and Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM)-CHU Toulouse [Toulouse]-Université Toulouse III - Paul Sabatier (UT3)
Subjects: Male, Cancer Research, medicine.medical_specialty, Head and neck oncology, Decision Making, Specialty, Functional impact, Affect (psychology), Medical Oncology, 03 medical and health sciences, 0302 clinical medicine, Medicine, Humans, Practice Patterns, Physicians', 030223 otorhinolaryngology, Patients' socioeconomic status, Socioeconomic status, Head and neck carcinoma, Oncologists, National survey, Practitioners' specialty, business.industry, Head and neck cancer, Medical decision-making, medicine.disease, [SHS.ECO]Humanities and Social Sciences/Economics and Finance, 3. Good health, Cross-Sectional Studies, Surgical Oncology, Oncology, Head and Neck Neoplasms, 030220 oncology & carcinogenesis, Family medicine, Marital status, Female, Oral Surgery, business
Abstract: Objectives Choice between surgical or medical treatments in head and neck cancer depends of many patient-related and disease-related factors. We investigated how patients’ socioeconomic status and practitioners’ specialty could affect medical decision-making. Materials and Methods We conducted a cross-sectional online, nationwide survey, send to surgeons, oncologists and radiotherapists specialized in head and neck oncology. We collected data on medical decision-making for seven clinical scientific scenarios involving head and neck carcinoma and physicians’ demographic data. Patients’ gender and socioeconomic position were distributed across scientific scenarios using a Latin square design. The scientific scenarios were grouped into several categories according to the prognostic and functional impact of the therapeutic choice. Results We obtained 206 assessable answers. Surgeons seemed to propose surgery in 49% of cases, whereas oncologists and radiotherapists opted for it in 34% of cases only. This was particularly relevant when the oncological result of surgery and the medical approach were equivalent, and when the surgery appeared to be superior in terms of curative potential but was burdened by a large functional impact. Patient's socioeconomic position also influence therapeutic decision. Among surgeons, the “single male manager” had significantly more chance of being offered surgery than the “married male blue-collar worker”. Among oncologists and radiotherapists, the “single male blue-collar worker” had the lowest probability of being proposed surgery. Regarding gender, surgeons tended to offer surgical management more to women regardless of their clinical profile. Conclusions Patients’ sex, marital status, socioeconomic status, practitioners’ specialty affect therapeutic management decisions in head and neck oncology.
Published: 2021

22. Rare ovarian tumours: Epidemiology, treatment challenges in and outside a network setting

Author: Ray-Coquard, I., Annalisa, Trama, Seckl, Mj, Fotopoulou, C, Pautier, P, Pignata, S, Kristensen, G, Mangili, G, Falconer, H, Massuger, L, Sehouli, J, Pujade-Lauraine, E., Lorusso, D., Amant, F., Rokkones, E., Vergote, I., Ledermann, J. A., Rarecarenet, Wg, Monika, Hackl, Elizabeth, Van Eycken, Kris, Henau, Nadya, Dimitrova, Mario, Sekerija, Ladislav, Dušek, Margit, Mägi, Nea, Malila, Maarit, Leinonen, Michel, Velten, Xavier, Troussard, Veronique, Bouvier, Anne-Valérie, Guizard, Anne-Marie, Bouvier, Patrick, Arveux, Marc, Maynadié, Anne-Sophie, Woronoff, Michel, Robaszkiewicz, Isabelle, Baldi, Alain, Monnereau, Brigitte, Tretarre, Marc, Colonna, Florence, Molinié, Simona, Bara, Claire, Schvartz, Bénédicte, Lapôtre-doux, Pascale, Grosclaude, Roland, Stabenow, Sabine, Luttmann, Alice, Nennecke, Jutta, Engel, Gabriele, Schubert-Fritschle, Jan, Heidrich, Bernd, Holleczek, Jón, Gunnlaugur Jónasson, Kerri, Clough-Gorr, Harry, Comber, Guido, Mazzoleni, Adriano, Giacomin, Antonella, Sutera Sardo, Alessandro, Barchielli, Diego, Serraino, Roberta, De Angelis, Sandra, Mallone, Andrea, Tavilla, Daniela, Pierannunzio, Silvia, Rossi, Mariano, Santaquilani, Arnold, Knijn, Fabio, Pannozzo, Valerio, Gennaro, Lucia, Benfatto, Paolo, Ricci, Mariangela, Autelitano, Gianbattista, Spagnoli, Mario, Fusco, Mario, Usala, Francesco, Vitale, Maria, Michiara, Rosario, Tumino, Lucia, Mangone, Fabio, Falcini, Ferretti, Stefano, Rosa Angela, Filiberti, Enza, Marani, Arturo, Iannelli, Flavio, Sensi, Silvano, Piffer, Maria, Gentilini, Anselmo, Madeddu, Antonio, Ziino, Sergio, Maspero, Pina, Candela, Fabrizio, Stracci, Giovanna, Tagliabue, Massimo, Rugge, Gemma, Gatta, Laura, Botta, Riccardo, Capocaccia, Santa, Pildava, Giedre, Smailyte, Neville, Callejac, Tom, Børgejohannesen, Jadwiga, Rachtan, Stanisław, Góźdź, Jerzy, Błaszczyk, Kamila, Kępska, Gonçalo, Forjaz de Lacerda, Mariajosé, Bento, Ana, Miranda, Chakameh, Safaei Diba, Enrique, Almar, Nerea, Larrañaga, Arantza, Lopez de Munain, Ana, Torrella-Ramos, José María, Díaz García, Rafael, Marcos-Gragera, Mariajosè, Sanchez, Carmen, Navarro, Diego, Salmeron, Conchi, Moreno-Iribas, Jaume, Galceran, Marià, Carulla, Mohsen, Mousavi, Christine, Bouchardy, Silvia M., Ess, Andrea, Bordoni, Isabelle, Konzelmann, Jem, Rashbass, Anna, Gavin, David H., Brewster, Dyfed, Wyn Huws, Otto, Visser, Magdalena, Bielska-Lasota, Maja, Primic-Zakelj, Ian, Kunkler, Ellen, Benham, ARD - Amsterdam Reproduction and Development, CCA - Cancer Treatment and Quality of Life, Obstetrics and Gynaecology, Health Service and Performance Research (HESPER), Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon, Département d'Oncologie Médicale [Lyon] ( Centre Léon Bérard), and Centre Léon Bérard [Lyon]
Subjects: 0301 basic medicine, medicine.medical_specialty, International Cooperation, [SDV]Life Sciences [q-bio], Gynecologic cancer, Rare cancer, Surgery, Oncology, MEDLINE, Socio-culturale, Gynecologic cancer, Rare cancer, law.invention, 03 medical and health sciences, 0302 clinical medicine, Rare Diseases, All institutes and research themes of the Radboud University Medical Center, Randomized controlled trial, law, Epidemiology, Surgery, Oncology, Prevalence, Medicine, Humans, Medical diagnosis, Intensive care medicine, Survival rate, ComputingMilieux_MISCELLANEOUS, Quality of Health Care, Ovarian Neoplasms, Clinical Trials as Topic, Women's cancers Radboud Institute for Molecular Life Sciences [Radboudumc 17], business.industry, Clinical study design, Incidence (epidemiology), Incidence, General Medicine, 3. Good health, Natural history, Europe, Survival Rate, 030104 developmental biology, 030220 oncology & carcinogenesis, Female, business, Delivery of Health Care
Abstract: Purpose of the review: More than 50% of all gynaecological cancers can be classified as rare tumours (defined as an annual incidence of
Published: 2019

23. Reply to Ivica Ratosa et al. Comment on: 'Multidisciplinary team meeting and EUSOMA quality indicators in breast cancer care: A French regional multicenter study'

Author: Laetitia Daubisse-Marliac, E. Pons-Tostivint, and Pascale Grosclaude
Subjects: medicine.medical_specialty, business.industry, media_common.quotation_subject, General Medicine, Multidisciplinary team, medicine.disease, lcsh:Neoplasms. Tumors. Oncology. Including cancer and carcinogens, lcsh:RC254-282, Breast cancer, Multicenter study, Family medicine, Medicine, Surgery, Quality (business), business, media_common
Published: 2020

24. The impact of patients’ and physicians’ characteristics on surgery decision for head and neck cancer: Results of a national survey

Author: Agnès Dupret-Bories, Pierre Bories, Pascale Grosclaude, Antoine Nebout, Fanny Cros, Sébastien Lamy, Institut national de recherche pour l'agriculture, l'alimentation et l'environnement - INRAE (FRANCE), Institut National de la Santé et de la Recherche Médicale - INSERM (FRANCE), Université Toulouse III - Paul Sabatier - UT3 (FRANCE), Institut Claudius Regaud - ICR (FRANCE), Centre Hospitalier Universitaire de Toulouse - CHU Toulouse (FRANCE), Laboratoire d'Epidémiologie et Analyses en Santé Publique : risques, maladies chroniques et handicaps - LEASP (Toulouse, France), Alimentation et Sciences Sociales - ALISS (Ivry-sur-Seine, France), CHU Toulouse [Toulouse], Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, Institut Claudius Regaud, Alimentation et sciences sociales (ALISS), Institut National de la Recherche Agronomique (INRA), Institut Universitaire du Cancer de Toulouse - Oncopole (IUCT Oncopole - UMR 1037), Université Toulouse III - Paul Sabatier (UT3), and Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-CHU Toulouse [Toulouse]-Institut National de la Santé et de la Recherche Médicale (INSERM)
Subjects: Cancer Research, medicine.medical_specialty, endocrine system, Surgery decision, business.industry, General surgery, Head and neck cancer, [SDV.CAN]Life Sciences [q-bio]/Cancer, medicine.disease, 3. Good health, Oncology, medicine, business, Cancer
Abstract: International audience; BackgroundThe choice between surgical or medical treatments in head and neck cancer is a function of many patient-related and disease-related factors. We investigated how physicians' behavioural characteristics and patients’ socioeconomic status could affect medical decision-making between surgical or non-surgical treatment.MethodsA nationwide cross-sectional online survey of surgeons, medical and radiation oncologists specialized in head and neck oncology collected data on medical decision-making for 7 clinical vignettes involving head and neck squamous cell carcinoma patients that were representative of routine practice. Questionnaires elicited physicians' demographic and occupational characteristics along with their individual behavioural characteristics according to the decision theory framework. Patients’ gender and socioeconomic position were distributed across vignettes using a Latin square design.ResultsWe obtained 206 assessable answers. A multivariate analysis showed that surgeons suggested surgery more often than other professionals, which is mostly related to vignettes corresponding to clinical cases for which there is no consensus Oncologists are 68% less likely than surgeons to choose surgery. For clinical vignettes, with an absence of consensus, physicians with lower risk aversion more often recommended surgery compared to those with higher risk aversion (OR=1.88, P=0.052). When the vignette corresponded to a clinical case for which there is a surgical consensus decision, the unmarried male male manual worker has a 75% lower chance of being offered surgery compared to the married male small business owner (OR=0.25, P=0.024). We did not observe any differences based on the gender of the patient.ConclusionsPatients’ socioeconomic status did affect clinical management decisions in head and neck oncology. The significant association between medical decision and individual behavioural characteristics of the physician documented still understudied mechanisms that involved nonbiological factors to variations in clinical practice.
Published: 2020

25. 206 An example of collaboration between a regional network and a cancer registry

Author: Jean-Briach, Boitard, Clément, Gaudin, Jerome, Goddard, Cyrille, Delpierre, Eric, Bauvin, Laetitia, Daubisse-Marliac, and Pascale, Grosclaude
Published: 2010
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26. Are there variations in adherence to colorectal cancer clinical guidelines depending on treatment place and recommendation novelty? The French EvaCCoR observational study

Author: L. Digue, Pascale Grosclaude, Rosine Guimbaud, Edvie Oum-Sack, Sébastien Lamy, Cyrille Delpierre, Eric Bauvin, I. Cirilo-Cassaigne, J. Goddard, Véronique Bousser, Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées, CHU Toulouse [Toulouse], Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, Institut Universitaire du Cancer de Toulouse - Oncopole (IUCT Oncopole - UMR 1037), CHU Toulouse [Toulouse]-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Réseau régional de cancérologie Onco-Occitanie, and Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM)-CHU Toulouse [Toulouse]-Université Toulouse III - Paul Sabatier (UT3)
Subjects: Male, medicine.medical_specialty, Colorectal cancer, [SDV]Life Sciences [q-bio], Adenocarcinoma, medicine.disease_cause, Hospitals, Private, 03 medical and health sciences, 0302 clinical medicine, Internal medicine, Medicine, Humans, Longitudinal Studies, Medical prescription, Stage (cooking), Aged, Retrospective Studies, Academic Medical Centers, Hepatology, business.industry, Hospitals, Public, Gastroenterology, Novelty, Cancer, medicine.disease, 3. Good health, Social deprivation, Chemotherapy, Adjuvant, 030220 oncology & carcinogenesis, Practice Guidelines as Topic, 030211 gastroenterology & hepatology, Observational study, Female, KRAS, France, Guideline Adherence, Lymph Nodes, business, Colorectal Neoplasms
Abstract: Summary Background Studies have shown clinical practices variation between centers in colorectal cancer (CRC) management. After the implementation of national cancer plans, we tested for differences in center and patients’ socioeconomic position (SEP)-related variation in CRC guidelines. Methods All patients aged 18 years and over, cared for a first CRC in 2010 in Southwest of France. We used mixed effect model to test for center-related heterogeneity (CRH) in recommendation, from the oldest to the more recent: (1) at least 12 lymph nodes analysed for stage II, (2) the prescription of adjuvant chemotherapy stage III and (3) the assessment of CRC molecular phenotype regarding KRAS status for stage IV. Patients’ SEP was approached by an ecological social deprivation index. Results We found: higher adherence for the oldest than for the most recent recommendations; no CRH in recommendation No. 2 but lower adherence in academic centers; a CRH for recommendations No. 1 and 3; no SEP-related differences in clinical practices. Conclusion Results showed that older recommendations have higher adherence but did not support increasing influence of centers characteristics and CRH as recommendations are more recent.
Published: 2019

27. Epidemiology of rare cancers and inequalities in oncologic outcomes

Author: G. Gatta, A. Trama, R. Capocaccia, Monika Hackl, Elizabeth Van Eycken, Kris Henau, Nadya Dimitrova, Mario Sekerija, Ladislav Dušek, Margit Mägi, Nea Malila, Maarit Leinonen, Michel Velten, Xavier Troussard, Veronique Bouvier, Anne-Valérie Guizard, Anne-Marie Bouvier, Patrick Arveux, Marc Maynadié, Anne-Sophie Woronoff, Michel Robaszkiewicz, Isabelle Baldi, Alain Monnereau, Brigitte Tretarre, Marc Colonna, Florence Molinié, Simona Bara, Claire Schvartz, Bénédicte Lapôtre-Ledoux, Pascale Grosclaude, Roland Stabenow, Sabine Luttmann, Alice Nennecke, Jutta Engel, Gabriele Schubert-Fritschle, Jan Heidrich, Bernd Holleczek, Jón Gunnlaugur Jónasson, Kerri Clough-Gorr, Harry Comber, Guido Mazzoleni, Adriano Giacomin, Antonella Sutera Sardo, Alessandro Barchielli, Diego Serraino, Roberta De Angelis, Sandra Mallone, Andrea Tavilla, Daniela Pierannunzio, Silvia Rossi, Mariano Santaquilani, Arnold Knijn, Fabio Pannozzo, Valerio Gennaro, Lucia Benfatto, Paolo Ricci, Mariangela Autelitano, Gianbattista Spagnoli, Mario Fusco, Mario Usala, Francesco Vitale, Maria Michiara, Rosario Tumino, Lucia Mangone, Fabio Falcini, Stefano Ferretti, Rosa Angela Filiberti, Enza Marani, Arturo Iannelli, Flavio Sensi, Silvano Piffer, Maria Gentilini, Anselmo Madeddu, Antonio Ziino, Sergio Maspero, Pina Candela, Fabrizio Stracci, Giovanna Tagliabue, Massimo Rugge, Annalisa Trama, Gemma Gatta, Laura Botta, Riccardo Capocaccia, Santa Pildava, Giedre Smailyte, Neville Calleja, Tom Børge Johannesen, Jadwiga Rachtan, Stanisław Góźdź, Jerzy Błaszczyk, Kamila Kępska, Forjaz de Lacerda, Maria José Bento, Ana Miranda, Chakameh Safaei Diba, Enrique Almar, Nerea Larrañaga, Arantza Lopez de Munain, Ana Torrella-Ramos, José María Díaz García, Rafael Marcos-Gragera, Maria Josè Sanchez, Carmen Navarro, Diego Salmeron, Conchi Moreno-Iribas, Jaume Galceran, Marià Carulla, Mohsen Mousavi, Christine Bouchardy, Silvia M. Ess, Andrea Bordoni, Isabelle Konzelmann, Jem Rashbass, Anna Gavin, David H. Brewster, Dyfed Wyn Huws, Otto Visser, Magdalena Bielska-Lasota, Maja Primic-Zakelj, Ian Kunkler, Ellen Benhamou, Gatta G., Trama A., Capocaccia R., Hackl M., Eycken E.V., Henau K., Dimitrova N., Sekerija M., Dusek L., Magi M., Malila N., Leinonen M., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewicz M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., Schubert-Fritschle G., Heidrich J., Holleczek B., Jonasson J.G., Clough-Gorr K., Comber H., Mazzoleni G., Giacomin A., Sardo A.S., Barchielli A., Serraino D., De Angelis R., Mallone S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pannozzo F., Gennaro V., Benfatto L., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Ziino A., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Botta L., Pildava S., Smailyte G., Calleja N., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., de Lacerda F., Bento M.J., Miranda A., Diba C.S., Almar E., Larranaga N., de Munain A.L., Torrella-Ramos A., Diaz Garcia J.M., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., Ess S.M., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Visser O., Bielska-Lasota M., Primic-Zakelj M., Kunkler I., and Benhamou E.
Subjects: 0301 basic medicine, Male, Settore MED/06 - Oncologia Medica, 0302 clinical medicine, Neoplasms, Epidemiology, Prevalence, Europe, Population-based cancer registry, Rare cancers, Child, education.field_of_study, Relative survival, Incidence (epidemiology), Incidence, General Medicine, Middle Aged, Survival Rate, Healthcare Disparitie, Oncology, 030220 oncology & carcinogenesis, Child, Preschool, Female, Human, Adult, medicine.medical_specialty, Adolescent, Surgery, Population, Socio-culturale, Europe, Population-based cancer registry, Rare cancers, 03 medical and health sciences, Young Adult, Rare Diseases, Age Distribution, Rare Disease, medicine, Humans, Healthcare Disparities, Sex Distribution, education, Survival rate, Aged, business.industry, Public health, Infant, Newborn, Cancer, Rare cancer, Infant, medicine.disease, Clinical trial, 030104 developmental biology, Neoplasm, business, Demography
Abstract: Rare cancers epidemiology is better known compared to the other rare diseases. Thanks to the long history of the European population-based cancer registries and to the EUROCARE huge database, the burden of rare cancers has been estimated the European (EU28) population. A considerable fraction of all cancers is represented by rare cancers (24%). They are a heterogeneous group of diseases, but they share similar problems: uncertainty of diagnosis, lack of therapies, poor research opportunities, difficulties in clinical trials, lack of expertise and of centres of reference. This paper analyses the major epidemiological indicators of frequency (incidence and prevalence) and outcome (5-year survival) of all rare cancers combined and of selected rare cancers that will be in depth treated in this monographic issue. Source of the results is the RARECAREnet search tool, a database publicly available. Disparities both in incidence and survival, and consequently in prevalence of rare cancers were reported across European countries. Major differences were shown in outcome: 5-year relative survival for all rare cancers together, adjusted by age and case-mix, varied from 55% or more (Italy, Germany, Belgium and Iceland) and less than 40% (Bulgaria, Lithuania and Slovakia). Similarly, for all the analyzed rare cancers, a large survival gap was observed between the Eastern and the Nordic and Central European regions. Dramatic geographical variations were assessed for curable cancers like testicular and non epithelial ovarian cancers. Geographical difference in the annual age-adjusted incidence rates for all rare cancers together varied between >140 per 100,000 (Italy, Scotland, France, Germany, and Switzerland) and
Published: 2019

28. Treatment challenges in and outside a specialist network setting: Pancreatic neuroendocrine tumours

Author: Panagis M. Lykoudis, Stefano Partelli, Francesca Muffatti, Martyn Caplin, Massimo Falconi, Giuseppe K. Fusai, Monika Hackl, Elizabeth Van Eycken, Kris Henau, Nadya Dimitrova, Mario Sekerija, Ladislav Dušek, Margit Mägi, Nea Malila, Maarit Leinonen, Michel Velten, Xavier Troussard, Veronique Bouvier, Anne-Valérie Guizard, Anne-Marie Bouvier, Patrick Arveux, Marc Maynadié, Anne-Sophie Woronoff, Michel Robaszkiewicz, Isabelle Baldi, Alain Monnereau, Brigitte Tretarre, Marc Colonna, Florence Molinié, Simona Bara, Claire Schvartz, Bénédicte Lapôtre-Ledoux, Pascale Grosclaude, Roland Stabenow, Sabine Luttmann, Alice Nennecke, Jutta Engel, Gabriele Schubert-Fritschle, Jan Heidrich, Bernd Holleczek, Jón Gunnlaugur Jónasson, Kerri Clough-Gorr, Harry Comber, Guido Mazzoleni, Adriano Giacomin, Antonella Sutera Sardo, Alessandro Barchielli, Diego Serraino, Roberta De Angelis, Sandra Mallone, Andrea Tavilla, Daniela Pierannunzio, Silvia Rossi, Mariano Santaquilani, Arnold Knijn, Fabio Pannozzo, Valerio Gennaro, Lucia Benfatto, Paolo Ricci, Mariangela Autelitano, Gianbattista Spagnoli, Mario Fusco, Mario Usala, Francesco Vitale, Maria Michiara, Rosario Tumino, Lucia Mangone, Fabio Falcini, Stefano Ferretti, Rosa Angela Filiberti, Enza Marani, Arturo Iannelli, Flavio Sensi, Silvano Piffer, Maria Gentilini, Anselmo Madeddu, Antonio Ziino, Sergio Maspero, Pina Candela, Fabrizio Stracci, Giovanna Tagliabue, Massimo Rugge, Annalisa Trama, Gemma Gatta, Laura Botta, Riccardo Capocaccia, Santa Pildava, Giedre Smailyte, Neville Calleja, Tom Børge Johannesen, Jadwiga Rachtan, Stanisław Góźdź, Jerzy Błaszczyk, Kamila Kępska, Gonçalo Forjaz de Lacerda, Maria José Bento, Ana Miranda, Chakameh Safaei Diba, Enrique Almar, Nerea Larrañaga, Arantza Lopez de Munain, Ana Torrella-Ramos, José María Díaz García, Rafael Marcos-Gragera, Maria Josè Sanchez, Carmen Navarro, Diego Salmeron, Conchi Moreno-Iribas, Jaume Galceran, Marià Carulla, Mohsen Mousavi, Christine Bouchardy, Silvia M. Ess, Andrea Bordoni, Isabelle Konzelmann, Jem Rashbass, Anna Gavin, David H. Brewster, Dyfed Wyn Huws, Otto Visser, Magdalena Bielska-Lasota, Maja Primic-Zakelj, Ian Kunkler, Ellen Benhamou, Lykoudis, P. M., Partelli, S., Muffatti, F., Caplin, M., Falconi, M., Fusai, G. K., Hackl, M., Van Eycken, E., Henau, K., Dimitrova, N., Sekerija, M., Dusek, L., Magi, M., Malila, N., Leinonen, M., Velten, M., Troussard, X., Bouvier, V., Guizard, A. -V., Bouvier, A. -M., Arveux, P., Maynadie, M., Woronoff, A. -S., Robaszkiewicz, M., Baldi, I., Monnereau, A., Tretarre, B., Colonna, M., Molinie, F., Bara, S., Schvartz, C., Lapotre-Ledoux, B., Grosclaude, P., Stabenow, R., Luttmann, S., Nennecke, A., Engel, J., Schubert-Fritschle, G., Heidrich, J., Holleczek, B., Jonasson, J. G., Clough-Gorr, K., Comber, H., Mazzoleni, G., Giacomin, A., Sardo, A. S., Barchielli, A., Serraino, D., De Angelis, R., Mallone, S., Tavilla, A., Pierannunzio, D., Rossi, S., Santaquilani, M., Knijn, A., Pannozzo, F., Gennaro, V., Benfatto, L., Ricci, P., Autelitano, M., Spagnoli, G., Fusco, M., Usala, M., Vitale, F., Michiara, M., Tumino, R., Mangone, L., Falcini, F., Ferretti, S., Filiberti, R. A., Marani, E., Iannelli, A., Sensi, F., Piffer, S., Gentilini, M., Madeddu, A., Ziino, A., Maspero, S., Candela, P., Stracci, F., Tagliabue, G., Rugge, M., Trama, A., Gatta, G., Botta, L., Capocaccia, R., Pildava, S., Smailyte, G., Calleja, N., Johannesen, T. B., Rachtan, J., Gozdz, S., Blaszczyk, J., Kepska, K., de Lacerda, G. F., Bento, M. J., Miranda, A., Diba, C. S., Almar, E., Larranaga, N., de Munain, A. L., Torrella-Ramos, A., Diaz Garcia, J. M., Marcos-Gragera, R., Sanchez, M. J., Navarro, C., Salmeron, D., Moreno-Iribas, C., Galceran, J., Carulla, M., Mousavi, M., Bouchardy, C., Ess, S. M., Bordoni, A., Konzelmann, I., Rashbass, J., Gavin, A., Brewster, D. H., Huws, D. W., Visser, O., Bielska-Lasota, M., Primic-Zakelj, M., Kunkler, I., Benhamou, E., Lykoudis P.M., Partelli S., Muffatti F., Caplin M., Falconi M., Fusai G.K., Hackl M., Van Eycken E., Henau K., Dimitrova N., Sekerija M., Dusek L., Magi M., Malila N., Leinonen M., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewicz M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., Schubert-Fritschle G., Heidrich J., Holleczek B., Jonasson J.G., Clough-Gorr K., Comber H., Mazzoleni G., Giacomin A., Sardo A.S., Barchielli A., Serraino D., De Angelis R., Mallone S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pannozzo F., Gennaro V., Benfatto L., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Ziino A., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Trama A., Gatta G., Botta L., Capocaccia R., Pildava S., Smailyte G., Calleja N., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., de Lacerda G.F., Bento M.J., Miranda A., Diba C.S., Almar E., Larranaga N., de Munain A.L., Torrella-Ramos A., Diaz Garcia J.M., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., Ess S.M., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Visser O., Bielska-Lasota M., Primic-Zakelj M., Kunkler I., and Benhamou E.
Subjects: Liver metastase, medicine.medical_specialty, Pathology, Socio-culturale, 03 medical and health sciences, Liver metastases, Rare Diseases, 0302 clinical medicine, Neuroendocrine tumours, Pancreas, Rare cancers, Multidisciplinary approach, Rare Disease, Neuroendocrine tumour, Humans, Medicine, Pancrea, Precision Medicine, Intensive care medicine, Liver metastases, Neuroendocrine tumours, Pancreas, Rare cancers, Patient Care Team, business.industry, Pancreatic Neoplasm, Rare cancer, General Medicine, Pancreatic Neoplasms, Survival Rate, Neuroendocrine Tumors, Surgery, Oncology, 030220 oncology & carcinogenesis, Mandate, 030211 gastroenterology & hepatology, business, Neuroendocrine Tumor, Delivery of Health Care, Human
Abstract: Pancreatic Neuroendocrine Neoplasms comprise a group of rare tumours with special biology, an often indolent behaviour and particular diagnostic and therapeutic requirements. The specialized biochemical tests and radiological investigations, the complexity of surgical options and the variety of medical treatments that require individual tailoring, mandate a multidisciplinary approach that can be optimally achieved through an organized network. The present study describes currents concepts in the management of these tumours as well as an insight into the challenges of delivering the pathway in and outside a Network.
Published: 2019

29. Treatment challenges in and outside a network setting: Soft tissue sarcomas

Author: Pasquali, Sandro, Bonvalot, Sylvie, Tzanis, Dimitri, Casali Paolo, G., Trama, Annalisa, Gronchi, Alessandro, Rarecarenet, Wg, Monika, Hackl, Elizabeth, Van Eycken, Kris, Henau, Nadya, Dimitrova, Mario, Sekerija, Ladislav, Dušek, Margit, Mägi, Nea, Malila, Maarit, Leinonen, Michel, Velten, Xavier, Troussard, Veronique, Bouvier, Anne-Valérie, Guizard, Anne-Marie, Bouvier, Patrick, Arveux, Marc, Maynadié, Anne-Sophie, Woronoff, Michel, Robaszkiewicz, Isabelle, Baldi, Alain, Monnereau, Brigitte, Tretarre, Marc, Colonna, Florence, Molinié, Simona, Bara, Claire, Schvartz, Bénédict, e Lapôtre-Ledoux, Pascale, Grosclaude, Roland, Stabenow, Sabine, Luttmann, Alice, Nennecke, Jutta, Engel, Gabriele, Schubert-Fritschle, Jan, Heidrich, Bernd, Holleczek, Jón, Gunnlaugur Jónasson, Kerri, Clough-Gorr, Harry, Comber, Guido, Mazzoleni, Adriano, Giacomin, Antonella, Sutera Sardo, Alessandro, Barchielli, Diego, Serraino, Roberta, De Angelis, Sandra, Mallone, Andrea, Tavilla, Daniela, Pierannunzio, Silvia, Rossi, Mariano, Santaquilani, Arnold, Knijn, Fabio, Pannozzo, Valerio, Gennaro, Lucia, Benfatto, Paolo, Ricci, Mariangela, Autelitano, Gianbattista, Spagnoli, Mario, Fusco, Mario, Usala, Francesco, Vitale, Maria, Michiara, Rosario, Tumino, Lucia, Mangone, Fabio, Falcini, Ferretti, Stefano, Rosa Angela, Filiberti, Enza, Marani, Arturo, Iannelli, Flavio, Sensi, Silvano, Piffer, Maria, Gentilini, Anselmo, Madeddu, Antonio, Ziino, Sergio, Maspero, Pina, Candela, Fabrizio, Stracci, Giovanna, Tagliabue, Massimo, Rugge, Annalisa, Trama, Gemma, Gatta, Laura, Botta, Riccardo, Capocaccia, Santa, Pildava, Giedre, Smailyte, Neville, Calleja, Tom, Børge Johannesen, Jadwiga, Rachtan, Stanisław, Góźdź, Jerzy, Błaszczyk, Kamila, Kępska, Gonçalo, Forjaz de Lacerda, Maria José, Bento, Ana, Miranda, Chakameh, Safaei Diba, Enrique, Almar, Nere, a Larrañaga, Arantza, Lopez de Munain, Ana, Torrella-Ramos, José Marí, a Díaz García, Rafael, Marcos-Gragera, Maria Josè, Sanchez, Carmen, Navarro, Diego, Salmeron, Conchi, Moreno-Iribas, Jaume, Galceran, Marià, Carulla, Mohsen, Mousavi, Christine, Bouchardy, Silvia M., Ess, Andrea, Bordoni, Isabelle, Konzelmann, Jem, Rashbass, Ann, a Gavin, David H., Brewster, Dyfed, Wyn Huws, Otto, Visser, Magdalena, Bielska-Lasota, Maja, Primic-Zakelj, Ian, Kunkler, Ellen, Benhamou, Pasquali S., Bonvalot S., Tzanis D., Casali P.G., Trama A., Gronchi A., Hackl M., Van Eycken E., Henau K., Dimitrova N., Sekerija M., Dusek L., Magi M., Malila N., Leinonen M., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewicz M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., Schubert-Fritschle G., Heidrich J., Bernd Holleczek, Jonasson J.G., Clough-Gorr K., Comber H., Mazzoleni G., Giacomin A., Sardo A.S., Barchielli A., Serraino D., De Angelis R., Mallone S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pannozzo F., Gennaro V., Benfatto L., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Ziino A., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Gatta G., Botta L., Capocaccia R., Pildava S., Smailyte G., Calleja N., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., de Lacerda G.F., Bento M.J., Miranda A., Diba C.S., Almar E., Larranaga N., de Munain A.L., Torrella-Ramos A., Diaz Garcia J.M., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., Ess S.M., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Visser O., Bielska-Lasota M., Primic-Zakelj M., Kunkler I., and Benhamou E.
Subjects: medicine.medical_specialty, Guidelines, Network, Referral centre, Sarcoma, Treatment, Surgery, Oncology, Referral, Population, MEDLINE, Socio-culturale, Disease, Cancer Care Facilities, Guideline, 03 medical and health sciences, Rare Diseases, 0302 clinical medicine, Rare Disease, Health care, medicine, Humans, 030212 general & internal medicine, Registries, education, Referral and Consultation, education.field_of_study, business.industry, Cancer Care Facilitie, Soft tissue sarcoma, General Medicine, medicine.disease, Europe, Clinical research, 030220 oncology & carcinogenesis, Practice Guidelines as Topic, Medical emergency, business, Delivery of Health Care, Human
Abstract: Patients with soft tissue sarcoma (STS) experienced better outcomes when treated according to existing clinical practice guidelines either at reference institution or dedicated treatment networks. Despite increasing evidence supporting referral to sarcoma specialised units, up to half of patients are not managed according to guidelines, particularly those in the early stage of their disease requiring surgery. Also, criteria to certify expertise of institutions, such as the treatment volume, are debated and health authorities have only recently started identification of these centres and creation of treatment networks in Europe as well as in several countries. This process have important implications for both patient outcomes and innovation of existing treatment strategies through clinical research, making improvement of clinical pathways a priority for health care authorities. This article will discuss issues with management of patients with STS, such as pathological diagnosis and adherence to guidelines, and the definition of referral centres and networks will be illustrated along with existing experiences and population-based data.
Published: 2019

30. Merkel cell carcinoma in France: a registries-based, comprehensive epidemiological survey

Author: E. Marrer, Bénédicte Lapôtre-Ledoux, Simona Bara, M. Fondain, Zoé Uhry, Michel Velten, Pascale Grosclaude, Florence Molinié, Marc Colonna, B. Tretarre, Olivier Dereure, Bernard Guillot, A.V. Guizard, A. S. Woronoff, Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier), Pathogénèse et contrôle des infections chroniques (PCCI), Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM), CHU Montpellier, Cancer Registry of Isère, Département d'Ingénierie des Systèmes (ex SIS) (DIS), Institut de Recherches sur les lois Fondamentales de l'Univers (IRFU), Commissariat à l'énergie atomique et aux énergies alternatives (CEA)-Université Paris-Saclay-Commissariat à l'énergie atomique et aux énergies alternatives (CEA)-Université Paris-Saclay, Laboratoire de Physique des Composants à Semiconducteurs (LPCS), École Nationale Supérieure d'Électronique et de Radioélectricité de Grenoble (ENSERG)-Centre National de la Recherche Scientifique (CNRS), Registre des cancers du Bas-Rhin, CRLCC Paul Strauss, Registre général des cancers du Tarn, Centre Hospitalier Universitaire de Toulouse (CHU Toulouse), Registre des Tumeurs de l'Hérault, Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM)-Centre Hospitalier Universitaire de Montpellier (CHU Montpellier ), Registre des cancers du Tarn, and Association humanitaire (entraide, action sociale) - Albi
Subjects: Adult, Male, medicine.medical_specialty, Pediatrics, Skin Neoplasms, Adolescent, Dermatology, 030207 dermatology & venereal diseases, 03 medical and health sciences, Young Adult, 0302 clinical medicine, Sex Factors, Epidemiology, Carcinoma, medicine, Humans, Registries, Young adult, Child, Survival rate, ComputingMilieux_MISCELLANEOUS, Aged, Retrospective Studies, Aged, 80 and over, Relative survival, Merkel cell carcinoma, business.industry, Incidence (epidemiology), Incidence, Age Factors, Infant, Newborn, food and beverages, Infant, Retrospective cohort study, Middle Aged, medicine.disease, 3. Good health, Carcinoma, Merkel Cell, Survival Rate, Epidemiologic Studies, Infectious Diseases, 030220 oncology & carcinogenesis, Child, Preschool, Female, France, business, [SDV.MHEP]Life Sciences [q-bio]/Human health and pathology
Abstract: Background Merkel cell carcinoma (MCC) is a rare primary cutaneous neuroendocrine carcinoma. Owing to its low incidence, epidemiological data are scarce and have never been analysed in France to identify the main epidemiological trends. Methods Data from MCC patients diagnosed between 1998 and 2010 were obtained from 11 French cancer registries in the FRANCIM network. The main epidemiological characteristics of MCC were investigated between 2006 and 2010 because comprehensive data were only available for this period. The main focus was tumour incidence and mortality over time. Results Between 1998 and 2010, 562 cases of MCC were reported in the registries. From 2006 to 2010 (290 cases), European- and world-standardized incidence rates were 0.26 and 0.43 per 100,000 person-years in men and 0.24 and 0.38 per 100,000 person-years in women. MCC is more frequent in females in France (56.9%) with male/female ratio 1.1. Relative survival rates were 84%, 56% and 42% at one, three and 5 years, respectively. Conclusions The incidence of MCC clearly increased over time in all areas under focus. The standardized incidence in France was comparable to the incidence observed in other countries for the same period, but French data are too recent to conclude on an increase in MCC incidence. Prognosis remains poor in all countries in which data are available.
Published: 2018

31. Testicular germ-cell tumours and penile squamous cell carcinoma: Appropriate management makes the difference

Author: Nicola Nicolai, Davide Biasoni, Mario A. Catanzaro, Maurizio Colecchia, Annalisa Trama, Monika Hackl, Elizabeth Van Eycken, Kris Henau, Nadya Dimitrova, Mario Sekerija, Ladislav Dušek, Margit Mägi, Nea Malila, Maarit Leinonen, Michel Velten, Xavier Troussard, Veronique Bouvier, Anne-Valérie Guizard, Anne-Marie Bouvier, Patrick Arveux, Marc Maynadié, Anne-Sophie Woronoff, Michel Robaszkiewic, Isabelle Baldi, Alain Monnereau, Brigitte Tretarre, Marc Colonna, Florence Molinié, Simona Bara, Claire Schvartz, Bénédicte Lapôtre-Ledoux, Pascale Grosclaude, Roland Stabenow, Sabine Luttmann, Alice Nennecke, Jutta Engel, Gabriele Schubert-Fritschle, Jan Heidrich, Bernd Holleczek, Jón Gunnlaugur Jónasson, Kerri Clough-Gorr, Harry Comber, Guido Mazzoleni, Adriano Giacomin, Antonella Sutera Sardo, Alessandr Barchielli, Diego Serraino, Roberta De Angelis, Sandra Mallone, Andrea Tavilla, Daniela Pierannunzio, Silvia Rossi, Mariano Santaquilani, Arnold Knijn, Fabio Pannozzo, Valerio Gennaro, Lucia Benfatto, Paolo Ricci, Mariangela Autelitano, Gianbattista Spagnoli, Mario Fusco, Mario Usala, Francesco Vitale, Maria Michiara, Rosario Tumino, Lucia Mangone, Fabio Falcini, Stefano Ferretti, Rosa Angela Filiberti, Enza Marani, Arturo Iannelli, Flavio Sensi, Silvano Piffer, Maria Gentilini, Anselmo Madeddu, Antonio Ziino, Sergio Maspero, Pina Candela, Fabrizio Stracci, Giovanna Tagliabue, Massimo Rugge, Gemma Gatta, Laura Botta, Riccardo Capocaccia, Santa Pildava, Giedre Smailyte, Neville Calleja, Tom Børge Johannesen, Jadwiga Rachtan, Stanisław Góźdź, Jerzy Błaszczyk, Kamila Kępska, Gonçalo Forjaz de Lacerda, Maria José Bento, Ana Miranda, Chakameh Safaei Diba, Enrique Almar, Nerea Larrañaga, Arantza Lopez de Munain, Ana Torrella-Ramos, José María Díaz García, Rafael Marcos-Gragera, Maria Josè Sanchez, Carmen Navarro, Diego Salmeron, Conchi Moreno-Iribas, Jaume Galceran, Marià Carulla, Mohsen Mousavi, Christine Bouchardy, Silvia M. Ess, Andrea Bordoni, Isabelle Konzelmann, Jem Rashbass, Anna Gavin, David H. Brewster, Dyfed Wyn Huws, Otto Visser, Magdalena Bielska-Lasota, Maja Primic-Zakelj, Ian Kunkler, Ellen Benhamou, Nicolai N., Biasoni D., Catanzaro M.A., Colecchia M., Trama A., Hackl M., Eycken E.V., Henau K., Dimitrova N., Sekerija M., Dusek L., Magi M., Malila N., Leinonen M., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewic M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., Schubert-Fritschle G., Heidrich J., Holleczek B., Jonasson J.G., Clough-Gorr K., Comber H., Mazzoleni G., Giacomin A., Sutera Sardo A., Barchielli A., Serraino D., De Angelis R., Mallone S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pannozzo F., Gennaro V., Benfatto L., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Ziino A., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Gatta G., Botta L., Capocaccia R., Pildava S., Smailyte G., Calleja N., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., de Lacerda G.F., Bento M.J., Miranda A., Diba C.S., Almar E., Larranaga N., de Munain A.L., Torrella-Ramos A., Diaz Garcia J.M., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., M. Ess S., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Visser O., Bielska-Lasota M., Primic-Zakelj M., Kunkler I., Benhamou E., Nicolai, N, Biasoni, D, Catanzaro, Ma, Colecchia, M, Trama, A, Hackl, M, Van Eycken, E, Henau, K, Dimitrova, N, Sekerija, M, Dusek, L, Maagi, M, Malila, N, Leinonen, M, Velten, M, Troussard, X, Bouvier, V, Guizard, Av, Bouvier, Am, Arveux, P, Maynadie, M, Woronoff, A, Robaszkiewicz, M, Baldi, I, Monnereau, A, Tretarre, B, Colonna, M, Molinie, F, Bara, S, Schvartz, C, Lapotre-Ledoux, B, Grosclaude, P, Stabenow, R, Luttmann, S, Nennecke, A, Engel, J, Schubert-Fritschle, G, Heidrich, J, Holleczek, B, Jonasson, Jg, Clough-Gorr, K, Comber, H, Mazzoleni, G, Giacomin, A, Sardo, A, Barchielli, A, Serraino, D, De Angelis, R, Mallone, S, Tavilla, A, Pierannunzio, D, Rossi, S, Santaquilani, M, Knijn, A, Pannozzo, F, Gennaro, V, Benfatto, L, Ricci, P, Autelitano, M, Spagnoli, G, Fusco, M, Usala, M, Vitale, F, Michiara, M, Tumino, R, Mangone, L, Falcini, F, Ferretti, S, Filiberti, Ra, Marani, E, Iannelli, A, Sensi, F, Puffer, S, Gentilini, M, Madeddu, A, Ziino, A, Maspero, S, Candela, P, Stracci, F, Tagliabue, G, Rugge, M, Gatta, G, Botta, L, Capocaccia, R, Pildava, S, Smailyte, G, Calleja, N, Johannesen, Tb, Rachtan, J, Gozdz, S, Blaszczyk, J, Kepska, K, de Lacerda, Gf, Bento, Mj, Miranda, A, Diba, C, Almar, E, Larranaga, N, de Munain, Al, Torrella-Ramos, M, Garcia, Jmd, Marcos-Gragera, R, Sanchez, Mj, Navarro, C, Salmeron, D, Moreno-Iribas, C, Galceran, J, Carulla, M, Mousavi, M, Bouchardy, C, Ess, Sm, Bordoni, A, Konzelmann, I, Rashbass, J, Gavin, A, Brewster, Dh, Huws, Dw, Visser, O, Bielska-Lasota, M, Primic-Zakelj, M, Kunkler, I, and Benhamou, E
Subjects: Oncology, Male, Survival, 030232 urology & nephrology, Disease, Carcinoma, Community network, Europe, Germ cell and embryonal, Neoplasms, Penis neoplasms, Rare diseases, Squamous cell, Tertiary care centres, Testicular neoplasms, Surgery, 0302 clinical medicine, Epidemiology, Testicular neoplasm, Referral and Consultation, General Medicine, Neoplasms, Germ Cell and Embryonal, Tertiary care centre, Survival Rate, 030220 oncology & carcinogenesis, Lymphatic Metastasis, Carcinoma, Squamous Cell, Human, medicine.medical_specialty, Penile squamous cell carcinoma, Socio-culturale, Cancer Care Facilities, 03 medical and health sciences, Penis neoplasm, Rare Disease, Internal medicine, medicine, Humans, Penile Neoplasms, Neoplasm Staging, Penis Neoplasms, business.industry, Cancer Care Facilitie, Lymphatic Metastasi, medicine.disease, Testicular germ cell, Adult life, Penile Neoplasm, Proper treatment, Neoplasm, Lymph Node Excision, business, Delivery of Health Care
Abstract: Germ-cell tumours (GCT) of the testis and penile squamous cell carcinoma (PeSCC) are a rare and a very rare uro-genital cancers, respectively. Both tumours are well defined entities in terms of management, where specific recommendations - in the form of continuously up-to-dated guide lines- are provided. Impact of these tumour is relevant. Testicular GCT affects young, healthy men at the beginning of their adult life. PeSCC affects older men, but a proportion of these patients are young and the personal consequences of the disease may be devastating. Deviation from recommended management may be a reason of a significant prognostic worsening, as proper treatment favourably impacts on these tumours, dramatically on GCT and significantly on PeSCC. RARECAREnet data may permit to analyse how survivals may vary according to geographical areas, histology and age, leading to assume that non-homogeneous health-care resources may impact the cure and definitive outcomes. In support of this hypothesis, some epidemiologic datasets and clinical findings would indicate that survival may improve when appropriate treatments are delivered, linked to a different accessibility to the best health institutions, as a consequence of geographical, cultural and economic barriers. Finally, strong clues based on epidemiological and clinical data support the hypothesis that treatment delivered at reference centres or under the aegis of a qualified multi-institutional network is associated with a better prognosis of patients with these malignancies. The ERN EURACAN represents the best current European effort to answer this clinical need.
Published: 2018

32. Disentangling the influence of living place and socioeconomic position on health services use among diabetes patients: A population-based study

Author: Romain Fantin, Sébastien Lamy, Eloïse Berger, Pascale Grosclaude, Cyrille Delpierre, Chloé Dimeglio, Béatrice Bouhanick, Hélène Colineaux, Denis Ducros, Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps, Université Toulouse III - Paul Sabatier ( UPS ), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale ( INSERM ), Institut de Mathématiques de Toulouse UMR5219 ( IMT ), Université Toulouse 1 Capitole ( UT1 ) -Université Toulouse - Jean Jaurès ( UT2J ) -Université Toulouse III - Paul Sabatier ( UPS ), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-PRES Université de Toulouse-Institut National des Sciences Appliquées - Toulouse ( INSA Toulouse ), Institut National des Sciences Appliquées ( INSA ) -Institut National des Sciences Appliquées ( INSA ) -Centre National de la Recherche Scientifique ( CNRS ), Météo-France [Paris], Météo France, FRANCIM, Réseau des registres français du cancer, Service d'hématologie, Institut Universitaire du Cancer de Toulouse - Oncopole ( IUCT Oncopole - UMR 1037 ), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-CHU Toulouse [Toulouse]-Institut National de la Santé et de la Recherche Médicale ( INSERM ) -Université Toulouse III - Paul Sabatier ( UPS ), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-CHU Toulouse [Toulouse]-Institut National de la Santé et de la Recherche Médicale ( INSERM ), Hôpital de Rangueil, CHU Toulouse [Toulouse], Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), and Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées
Subjects: Male, Medical Doctors, Economics, Cross-sectional study, Health Care Providers, [SDV]Life Sciences [q-bio], lcsh:Medicine, Social Sciences, Endocrinology, 0302 clinical medicine, Sociology, Health care, Medicine and Health Sciences, Medicine, Public and Occupational Health, Medical Personnel, 030212 general & internal medicine, lcsh:Science, Geographic Areas, ComputingMilieux_MISCELLANEOUS, education.field_of_study, Multidisciplinary, Geography, Attendance, Health Services, Socioeconomic Aspects of Health, 3. Good health, Professions, Social deprivation, Female, Behavioral and Social Aspects of Health, 0305 other medical science, Research Article, Urban Areas, Endocrine Disorders, Population, Human Geography, Social class, Urban Geography, 03 medical and health sciences, Health Economics, General Practitioners, Physicians, Environmental health, Diabetes Mellitus, Humans, Social Stratification, Social determinants of health, education, Retrospective Studies, 030505 public health, [ SDV ] Life Sciences [q-bio], business.industry, lcsh:R, Health Care, Cross-Sectional Studies, Social Class, Metabolic Disorders, People and Places, Earth Sciences, lcsh:Q, Population Groupings, Residence, business, Health Insurance
Abstract: This research investigates the influence of place of residence and diabetic patient's socioeconomic position on their use of health services in a universal health care system. This retrospective cross-sectional population-based study is based on the joint use of the Health Insurance information systems, an ecological indicator of social deprivation and an indicator of potential spatial accessibility of healthcare provision in the Midi-Pyrénées region. Using French healthcare insurance population-based data on reimbursement of out-of-hospital care during the year 2012, we study the use of health services among patients aged 50 and over (n = 90,136).We built logistic regression models linking health services use to socioeconomic position by geographic area, adjusted for age, gender, healthcare provision, information regarding patients precariousness, and long-term condition, used as proxy for the state of health. After adjustment for healthcare provision, the lower population density in the geographical area of concern, the lower the access to specialised care, independent of the patients' SEP. General practitioner attendance was higher among the patients with the lowest SEP without being clearly influenced by their living place. We found no clear influence of either patients' SEP or their living place on their access to biological follow-up. This study is an attempt to account for the geographical context and to go further in studying the social determinants of health among diabetes patients.
Published: 2017

33. Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet—a population-based study

Author: Fabio Falcini, Charles A. Stiller, Diego Serraino, Antonella Sutera Sardo, Kerri Clough-Gorr, Mario Fusco, Véronique Bouvier, Silvia Francisci, Alain Monnereau, Carmen Navarro, Alessandro Barchielli, Annalisa Trama, Bénédicte Lapôtre-Ledoux, Stanislaw Gózdz, Isabelle Konzelmann, J. Błaszczyk, Laura Botta, Simona Bara, Flavio Sensi, Gonçalo Forjaz de Lacerda, Nadya Dimitrova, Lucia Mangone, Pamela Minicozzi, Maria Michiara, Neville Calleja, M Usala, E Marani, Innos Kaire, Tom Børge Johannesen, Ladislav Dušek, Sabine Luttmann, M Autelitano, Anne Sophie Woronoff, Vincent K Y Ho, Francesco Vitale, Silvano Piffer, Jan Maarten van der Zwan, Dyfed Wyn Huws, David H. Brewster, Margit Mägi, Zdravka Valerianova, Anna Luisa Caiazzo, Maja Primic Žakelj, Adriano Giacomin, E. Almar, F Bella, Ellen Benhamou, Arantza Lopez de Munain, Patrick Arveux, Claire Schvartz, José María Díaz García, M. Robaszkiewicz, Isabelle Baldi, Otto Visser, Mohsen Mousavi, Maria José Bento, Lesley A. Anderson, Chakameh Safaei Diba, Mariano Santaquilani, Gemma Gatta, Tina Žagar, Pina Candela, Jadwiga Rachtan, María José Sánchez, Andrea Bordoni, Monika Hackl, Gabriele Schubert-Fritschle, Nea Malila, Diego Salmerón, Massimo Rugge, Carmen Tereanu, Maarit K. Leinonen, Jem Rashbass, Arturo Iannelli, Milena Sant, Antonino Ziino Colanino, Marià Carulla, Christine Bouchardy, Keiu Paapsi, Marc Colonna, Jon G. Jonasson, Brigitte Trétarre, A.V. Guizard, Riccardo Capocaccia, Xavier Troussard, Jan Heidrich, Dominic Agius, Kamila Kepska, Daniela Pierannunzio, Santa Pildava, Stefano Ferretti, Silvia Rossi, Guido Mazzoleni, Rafael Marcos-Gragera, Giedre Smailyte, Gianbattista Spagnoli, Nancy Van Damme, Roland Stabenow, Anna Gavin, Paolo Baili, Anselmo Madeddu, Fabio Pannozzo, M. Sekerija, Silvia Ess, Sandra Mallone, Rosa Filiberti, Pascale Grosclaude, Florence Molinié, S Maspero, Alice Nennecke, Rosario Tumino, Renée Otter, Ana Torrella-Ramos, Fabrizio Stracci, Giovanna Tagliabue, Michel Velten, Andrea Tavilla, Marc Maynadié, Arnold Knijn, Conchi Moreno-Iribas, Eva Ardanaz, M.A. Gentilini, Paolo Ricci, Liesbet Van Eycken, Ana Miranda, Sabine Siesling, Nerea Larrañaga, Roberta De Angelis, Harry Comber, Paolo Collarile, K. Henau, Bernd Holleczek, Anne Marie Bouvier, Jutta Engel, Jaume Galceran, Gatta G., Capocaccia R., Botta L., Mallone S., De Angelis R., Ardanaz E., Comber H., Dimitrova N., Leinonen M.K., Siesling S., van der Zwan J.M., Van Eycken L., Visser O., Zakelj M.P., Anderson L.A., Bella F., Kaire I., Otter R., Stiller C.A., Trama A., Hackl M., Henau K., Van Damme N., Valerianova Z., Sekerija M., Dusek L., Magi M., Paapsi K., Malila N., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewicz M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., SchubertFritschle G., Heidrich J., Holleczek B., Jonasson J.G., Clough-Gorr K., Mazzoleni G., Giacomin A., Sardo A.S., Barchielli A., Serraino D., Collarile P., Pannozzo F., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Caiazzo A.L., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Colanino A.Z., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Baili P., Minicozzi P., Sant M., Tereanu C., Francisci S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pildava S., Smailyte G., Calleja N., Agius D., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., Lacerda G.F.D., Bento M.J., Miranda A., Diba C.S., Zagar T., Almar E., Larranaga N., Munain A.L.D., Torrella-Ramos A., Garcia J.M.D., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., Ess S.M., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Ho V.K., and Benhamou E.
Subjects: Male, 0301 basic medicine, Pathology, population-based registries, Cancer Care Facilities, Delivery of Health Care, Europe, Female, Hospitalization, Humans, Incidence, Neoplasms, Rare Diseases, Registries, Survival Rate, Oncology, 0302 clinical medicine, Medicine, media_common, Tumors -- Treatment -- Europe, education.field_of_study, Relative survival, Incidence (epidemiology), RARECARE project, 030220 oncology & carcinogenesis, medicine.medical_specialty, Health surveys, Population, Socio-culturale, 03 medical and health sciences, SDG 3 - Good Health and Well-being, media_common.cataloged_instance, Cancer -- Mortality, Risk factor, European union, education, Survival rate, Oncology, cancer burden, incidence, rare cancer,population-based registries, rare cancers, cancer registry, RARECARE, business.industry, Rare cancer, Cancer -- Patients -- Long-term care, Cancer registry, 030104 developmental biology, cancer burden, business, Demography, Rare disease
Abstract: Background: Rare cancers pose challenges for diagnosis, treatments, and clinical decision making. Information about rare cancers is scant. The RARECARE project defined rare cancers as those with an annual incidence of less than six per 100 000 people in European Union (EU). We updated the estimates of the burden of rare cancers in Europe, their time trends in incidence and survival, and provide information about centralisation of treatments in seven European countries. Methods: We analysed data from 94 cancer registries for more than 2 million rare cancer diagnoses, to estimate European incidence and survival in 2000–07 and the corresponding time trends during 1995–2007. Incidence was calculated as the number of new cases divided by the corresponding total person-years in the population. 5-year relative survival was calculated by the Ederer-2 method. Seven registries (Belgium, Bulgaria, Finland, Ireland, the Netherlands, Slovenia, and the Navarra region in Spain) provided additional data for hospitals treating about 220 000 cases diagnosed in 2000–07. We also calculated hospital volume admission as the number of treatments provided by each hospital rare cancer group sharing the same referral pattern. Findings: Rare cancers accounted for 24% of all cancers diagnosed in the EU during 2000–07. The overall incidence rose annually by 0.5% (99·8% CI 0·3–0·8). 5-year relative survival for all rare cancers was 48·5% (95% CI 48·4 to 48·6), compared with 63·4% (95% CI 63·3 to 63·4) for all common cancers. 5-year relative survival increased (overall 2·9%, 95% CI 2·7 to 3·2), from 1999–2001 to 2007–09, and for most rare cancers, with the largest increases for haematological tumours and sarcomas. The amount of centralisation of rare cancer treatment varied widely between cancers and between countries. The Netherlands and Slovenia had the highest treatment volumes. Interpretation: Our study benefits from the largest pool of population-based registries to estimate incidence and survival of about 200 rare cancers. Incidence trends can be explained by changes in known risk factors, improved diagnosis, and registration problems. Survival could be improved by early diagnosis, new treatments, and improved case management. The centralisation of treatment could be improved in the seven European countries we studied., peer-reviewed
Published: 2017

34. Identifying multiple myeloma patients using data from the French health insurance databases: Validation using a cancer registry

Author: Martin Gauthier, Fabien Despas, Cécile Conte, Maryse Lapeyre-Mestre, Aurore Palmaro, Pascale Grosclaude, FRANCIM, and Réseau des registres français du cancer
Subjects: medicine.medical_specialty, business.industry, [SDV]Life Sciences [q-bio], MEDLINE, Retrospective cohort study, General Medicine, medicine.disease, 030226 pharmacology & pharmacy, Cancer registry, 03 medical and health sciences, 0302 clinical medicine, Internal medicine, Predictive value of tests, Positive predicative value, medicine, Health insurance, 030212 general & internal medicine, Medical emergency, Medical diagnosis, business, Multiple myeloma, ComputingMilieux_MISCELLANEOUS
Abstract: This study aimed to assess the performance of several algorithms based on hospital diagnoses and the long-term diseases scheme to identify multiple myeloma patients.Potential multiple myeloma patients in 2010 to 2013 were identified using the presence of hospital records with at least 1 main diagnosis code for multiple myeloma (ICD-10 "C90"). Alternative algorithms also considered related and associated diagnoses, combination with long-term conditions, or at least 2 diagnoses. Incident patients were those with no previous "C90" codes in the past 24 or 12 months. The sensitivity, specificity, and positive and negative predictive values (PPVs and NPVs) were computed, using a French cancer registry for the corresponding area and period as the criterion standard.Long-term conditions data extracted concerned 11,559 patients (21,846 for hospital data). The registry contained 125 cases of multiple myeloma. Sensitivity was 70% when using only main hospital diagnoses (specificity 100%, PPV 79%), 76% when also considering related diagnoses (specificity 100%, PPV 74%), and 90% with associated diagnoses included (100% specificity, 64% PPV).In relation with their good performance, selected algorithms can be used to study the benefit and risk of drugs in treated multiple myeloma patients.
Published: 2017

35. Long-term quality of life among localised prostate cancer survivors: QALIPRO population-based study

Author: Patricia Delafosse, Laetitia Daubisse-Marliac, Emilie Marrer, Clarisse Kerleau, Pascale Grosclaude, Michel Velten, Anne Cowppli-Bony, Bénédicte Lapôtre-Ledoux, Simona Bara, Brigitte Trétarre, Anne-Valérie Guizard, Anne-Sophie Woronoff, Mariette Mercier, Florence Joly, Florence Molinié, Natacha Heutte, Mécanismes moléculaires dans les démences neurodégénératives (MMDN), Université de Montpellier (UM)-Université Montpellier 2 - Sciences et Techniques (UM2)-Institut National de la Santé et de la Recherche Médicale (INSERM)-École pratique des hautes études (EPHE), Université Paris sciences et lettres (PSL)-Université Paris sciences et lettres (PSL), Unité de recherche interdisciplinaire pour la prévention et le traitement des cancers (ANTICIPE), Université de Caen Normandie (UNICAEN), Normandie Université (NU)-Normandie Université (NU)-CHU Caen, Normandie Université (NU)-Tumorothèque de Caen Basse-Normandie (TCBN)-Tumorothèque de Caen Basse-Normandie (TCBN)-Centre Régional de Lutte contre le Cancer François Baclesse [Caen] (UNICANCER/CRLC), Normandie Université (NU)-UNICANCER-Tumorothèque de Caen Basse-Normandie (TCBN)-UNICANCER-Institut National de la Santé et de la Recherche Médicale (INSERM), Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Centre d’études des transformations des activités physiques et sportives (CETAPS), Université de Rouen Normandie (UNIROUEN), Normandie Université (NU)-Normandie Université (NU)-Institut de Recherche Interdisciplinaire Homme et Société (IRIHS), Normandie Université (NU)-Normandie Université (NU)-Université de Rouen Normandie (UNIROUEN), Normandie Université (NU), Carcinogénèse épithéliale : facteurs prédictifs et pronostiques - UFC (EA 3181) (CEF2P / CARCINO), Centre Hospitalier Régional Universitaire de Besançon (CHRU Besançon)-Université de Franche-Comté (UFC), Université Bourgogne Franche-Comté [COMUE] (UBFC)-Université Bourgogne Franche-Comté [COMUE] (UBFC), Centre Régional de Lutte contre le Cancer François Baclesse [Caen] (UNICANCER/CRLC), Normandie Université (NU)-UNICANCER-Tumorothèque de Caen Basse-Normandie (TCBN), Aide à la Décision pour une Médecine Personnalisé - Laboratoire de Biostatistique, Epidémiologie et Recherche Clinique - EA 2415 (AIDMP), Université Montpellier 1 (UM1)-Université de Montpellier (UM), FRANCIM, Réseau des registres français du cancer, Registre des Cancers du Haut-Rhin, Assoc. pour la recherche épidémiologique par les registres dans le Haut-Rhin, CHU Caen, Normandie Université (NU)-Tumorothèque de Caen Basse-Normandie (TCBN)-Normandie Université (NU)-Tumorothèque de Caen Basse-Normandie (TCBN)-Université de Caen Normandie (UNICAEN), Normandie Université (NU)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre Régional de Lutte contre le Cancer François Baclesse [Caen] (UNICANCER/CRLC), UNICANCER-Tumorothèque de Caen Basse-Normandie (TCBN)-Normandie Université (NU)-UNICANCER, Université de Franche-Comté (UFC), Université Bourgogne Franche-Comté [COMUE] (UBFC)-Université Bourgogne Franche-Comté [COMUE] (UBFC)-Centre Hospitalier Régional Universitaire de Besançon (CHRU Besançon), and UNICANCER-Tumorothèque de Caen Basse-Normandie (TCBN)-Normandie Université (NU)
Subjects: Male, Oncology, Quality of life, Cancer Research, medicine.medical_specialty, Localised prostate cancer, medicine.medical_treatment, Population, 030232 urology & nephrology, [SDV.CAN]Life Sciences [q-bio]/Cancer, Long survivors, Hospital Anxiety and Depression Scale, 03 medical and health sciences, Prostate cancer, 0302 clinical medicine, Internal medicine, Humans, Medicine, Survivors, education, Aged, Aged, 80 and over, Prostatectomy, Analysis of Variance, education.field_of_study, business.industry, Population based study, Prostatic Neoplasms, Cancer, Middle Aged, medicine.disease, Combined Modality Therapy, 3. Good health, Socioeconomic Factors, Case-Control Studies, 030220 oncology & carcinogenesis, Anxiety, France, Hormone therapy, medicine.symptom, business
Abstract: International audience; BackgroundTo evaluate quality of life (QoL) 10 years after treatments for localised prostate cancer (LPCa) patients in comparison with aged-matched healthy controls.MethodsLPCa patients diagnosed in 2001 were obtained from 11 French cancer registries. Controls were recruited among the general population and were matched to patients on age and geographic area. EORTC Quality of Life Questionnaire – Core 30 items, Expanded Prostate Cancer Index Composite, Hospital Anxiety and Depression Scale and Multidimensional Fatigue Inventory self-reported questionnaires were used to measure QoL, anxiety and fatigue. Patients were classified in three groups according to previous treatments: radical prostatectomy (RP), radiotherapy (RT) and radical prostatectomy and radiotherapy (RP+RT). The differences in QoL between patients and controls and according to treatment groups were evaluated.ResultsThere were 287 patients and 287 controls. There was no socio-demographic difference between patients and controls. Treatments were: RP (143), RT (78), PR+RT (33), baseline hormone therapy (49) and hormone therapy at the time of the study (34). Patients had similar levels of global QoL, anxiety, depression and fatigue as controls. They reported more urinary troubles (urinary function and incontinence) (p < 0.0001) and more sexual dysfunctions (p < 0.0001) than controls, whatever the treatment group. Worse bowel dysfunction was reported in patients treated by RT and RP+RT (p < 0.002). According to the treatments, RP groups had the worst urinary function and incontinence (p < 0.01), and reported more bowel bother when the treatment was combined with RT.ConclusionsEven though patients reported similar global QoL as control 10 years after treatment, patients reported numerous urinary and sexual dysfunctions. Patients treated with RP+RT reported cumulative sequelae of both treatments.
Published: 2016

36. Socioeconomic status and site-specific cancer incidence, a Bayesian approach in a French Cancer Registries Network study

Author: Joséphine Bryère, Guy Launoy, Marc Colonna, Olivier Dejardin, Ludivine Launay, Pascale Grosclaude, Unité de recherche interdisciplinaire pour la prévention et le traitement des cancers (ANTICIPE), Université de Caen Normandie (UNICAEN), Normandie Université (NU)-Normandie Université (NU)-CHU Caen, Normandie Université (NU)-Tumorothèque de Caen Basse-Normandie (TCBN)-Tumorothèque de Caen Basse-Normandie (TCBN)-Centre Régional de Lutte contre le Cancer François Baclesse [Caen] (UNICANCER/CRLC), Normandie Université (NU)-UNICANCER-Tumorothèque de Caen Basse-Normandie (TCBN)-UNICANCER-Institut National de la Santé et de la Recherche Médicale (INSERM), CHU Caen, Normandie Université (NU)-Tumorothèque de Caen Basse-Normandie (TCBN), Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 (LBBE), Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS), Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université Toulouse III - Paul Sabatier (UT3), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM), Cancers et Populations : Facteurs de Risque, Depistage, Pratiques Diagnostiques et Therapeutiques, Normandie Université (NU)-Normandie Université (NU)-Institut National de la Santé et de la Recherche Médicale (INSERM), Normandie Université (NU)-Tumorothèque de Caen Basse-Normandie (TCBN)-Normandie Université (NU)-Tumorothèque de Caen Basse-Normandie (TCBN)-Université de Caen Normandie (UNICAEN), Normandie Université (NU)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre Régional de Lutte contre le Cancer François Baclesse [Caen] (UNICANCER/CRLC), UNICANCER-Tumorothèque de Caen Basse-Normandie (TCBN)-Normandie Université (NU)-UNICANCER, and Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM)
Subjects: Male, Cancer Research, Pediatrics, cancer incidence, Epidemiology, deprivation, 0302 clinical medicine, Risk Factors, Neoplasms, Medicine, Registries, 030212 general & internal medicine, Young adult, Child, 10. No inequality, Incidence, Incidence (epidemiology), Middle Aged, Prognosis, 3. Good health, Social deprivation, Oncology, Child, Preschool, 030220 oncology & carcinogenesis, Population study, Female, France, Adult, medicine.medical_specialty, Adolescent, [SDV.CAN]Life Sciences [q-bio]/Cancer, Social class, Young Adult, 03 medical and health sciences, social environment, Humans, Socioeconomic status, Aged, site-specific approach, business.industry, Infant, Newborn, Public Health, Environmental and Occupational Health, Infant, Cancer, Social environment, Bayes Theorem, medicine.disease, Bayesian modeling, Social Class, cancer registries, [SDV.SPEE]Life Sciences [q-bio]/Santé publique et épidémiologie, business, Follow-Up Studies, Demography
Abstract: International audience; The aim of this study was to identify and compare cancer sites whose incidence is influenced by social deprivation. The study population comprised 189 144 cases of cancer diagnosed between 2006 and 2009, recorded in member registries of the French Network of Cancer Registries. Social environment was assessed at an aggregate level using the European Deprivation Index. The association between incidence and socioeconomic status was assessed by a geographical Bayesian Poisson model enabling a reduction of the overall variability and smoothing of the relative risks by sharing information provided by multiple geographic units. For cancers of the stomach, liver, lips-mouth-pharynx, and lung, a higher incidence in deprived populations was found for both sexes as well as for cancers of the larynx, esophagus, pancreas, and bladder in men and cervical cancer in women. For melanoma, prostate, testis, ovarian, and breast cancer, a higher incidence was observed in affluent populations. The highest relative risks of the lowest social class compared with the highest social class were found for larynx [relative risk (RR) = 1.67 (1.43-1.95)], lips-mouth-pharynx [RR = 1.89 (1.72-2.07)], and lung cancer [RR = 1.59 (1.50-1.68)] in men and for cervix [RR = 1.62 (1.40-1.88)] and lips-mouth-pharynx [RR = 1.56 (1.30-1.86)] cancer in women. By estimating the burden of social deprivation on cancer incidence throughout France, this study enables us to measure the gains that could be achieved by implementing targeted prevention efforts.
Published: 2016

37. A health equity impact assessment umbrella program (AAPRISS) to tackle social inequalities in health: program description

Author: Elsa Bidault, Mélanie Villeval, Thierry Lang, Benjamin Gandouet, Nadine Haschar-Noé, Eric Breton, François Alias, Ivan Theis, Pascale Grosclaude, Martine Servat, Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, École des Hautes Études en Santé Publique [EHESP] (EHESP), Centre de Recherches sur l'Action Politique en Europe (ARENES), Université de Rennes 1 (UR1), Université de Rennes (UNIV-RENNES)-Université de Rennes (UNIV-RENNES)-Institut d'Études Politiques [IEP] - Rennes-École des Hautes Études en Santé Publique [EHESP] (EHESP)-Centre National de la Recherche Scientifique (CNRS), EHESP-ARENES (EHESP-ARENES), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM), and Université de Rennes (UR)-Institut d'Études Politiques [IEP] - Rennes-École des Hautes Études en Santé Publique [EHESP] (EHESP)-Centre National de la Recherche Scientifique (CNRS)
Subjects: Male, Program evaluation, Economic growth, Participatory research, [SDV]Life Sciences [q-bio], Population, Health Promotion, Determinants of health, Evaluation qualitative, 03 medical and health sciences, 0302 clinical medicine, Community-based research, Political science, Humans, 030212 general & internal medicine, Social determinants of health, Program Development, education, Health policy, ComputingMilieux_MISCELLANEOUS, Health Services Needs and Demand, education.field_of_study, 030505 public health, Health Equity, Health impact assessment, Health Policy, Public Health, Environmental and Occupational Health, Equity, Health equity, 3. Good health, Health promotion, Socioeconomic Factors, Evaluation quantitative, Female, Health education, France, 0305 other medical science, Social justice, Program Evaluation
Abstract: Background:The failure to simultaneously address two objectives (increasing the average health of the population and reducing health inequalities) may have led to what has been observed in France so far: an overall decrease in mortality and increase in inequality.Objective:The Apprendre et Agir pour Réduire les Inégalités Sociales de Santé (AAPRISS) methodology is to analyze and modify interventions that are already underway in terms of their potential impact on health inequalities. It relies on partnership between researchers and actors in the health field, as well as policy makers. In this paper, we describe the program and discuss its feasibility and acceptability.Methods:This program is not a single intervention, but a process aiming at assessing and reshaping existing health programs, therefore acting as a kind of meta-intervention. The program develops scientific and methodological support stemming from co-construction methods aimed at increasing equity within the programs. Stakeholders from prevention policy-making and the health care system, as well as researchers, collaborate in defining interventions, monitoring their progress, and choosing indicators, methods and evaluation procedures. The target population is mainly the population of the greater Toulouse area. The steps of the process are described: (1) establishment of AAPRISS governance and partnerships; (2) inclusion of projects; and (3) the projects’ process.Discussion:Many partners have rallied around this program, which has been shown to be feasible and acceptable by partners and health actors. A major challenge is understanding each partner’s expectations in terms of temporality of interventions, expected outcomes, assessment methods and indicators. Analyzing the projects has been quite feasible, and some modifications have been implemented in them in order to take inequalities in health into account.
Published: 2016

38. Enabling the transferability of complex interventions: exploring the combination of an intervention’s key functions and implementation

Author: Elisabeth Pons, Catherine Frasse, François Alias, Damien Verbiguié, Mélanie Villeval, Thierry Lang, Jeannie Shoveller, Jean-Charles Basson, Pascale Grosclaude, Jean-Paul Génolini, E. Bidault, Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, FRANCIM, and Réseau des registres français du cancer
Subjects: Program evaluation, Health (social science), Process management, Epidemiology, Process (engineering), Computer science, media_common.quotation_subject, [SDV]Life Sciences [q-bio], Psychological intervention, Context (language use), Health Promotion, Psychology, Social, 03 medical and health sciences, 0302 clinical medicine, Humans, 030212 general & internal medicine, Function (engineering), Health Education, Qualitative Research, ComputingMilieux_MISCELLANEOUS, media_common, 030505 public health, Health Educators, Community Participation, Public Health, Environmental and Occupational Health, Health Status Disparities, Models, Theoretical, Intervention (law), Policy, Socioeconomic Factors, Public Health Practice, 0305 other medical science, Program Evaluation, Human Systems Intervention, Qualitative research
Abstract: Several public health interventions are not described, not evaluated and not transferred. The objective was to assess the feasibility and acceptability of using a description model making a distinction between interventions’ transferable elements, and those that are more context-specific, to make their evaluation and transferability easier. The theoretical distinction between an intervention function and its form in a specific context has been empirically explored. A community-based intervention (named “Cine-Ma-Sante”) has been described, using a “key function/implementation/context” model. This process has been co-constructed through qualitative research and knowledge exchange process between project leaders and researchers from different disciplines. The use of the model proves feasible and useful for both project leaders and researchers. Nine key functions were described, as well as their implementation and the features of the intervention context. Rendering explicit key functions of public health interventions could constitute a useful step to their evaluation and transfer. It enables the formulation of hypotheses regarding the potentially standardizable elements of interventions, and elements that can be modified while maintaining the integrity of the intervention.
Published: 2016

39. Construction of an adaptable European transnational ecological deprivation index: the French version

Author: Olivier Dejardin, Lydia Guittet, Carole Pornet, Pascale Grosclaude, Cyrille Delpierre, Ludivine Launay, Thierry Lang, and Guy Launoy
Subjects: European Union Statistics on Income and Living Conditions, inequality, Index (economics), Epidemiology, poverty, Ungleichheit, soziale Indikatoren, Frankreich, gastroenterology, social indicators, Indexbildung, geography, deprivation, index construction, deprivation index, prevention, Poverty Areas, Surveys and Questionnaires, Townsend, Health Status Indicators, Sociology, Social policy, media_common, Sozialwissenschaften, Soziologie, social inequality, Ecology, Health Policy, public health, health, Access to healthcare, health care, Europe, social inequalities in health, ddc:300, Gesundheitspolitik, France, Europa, index, Theory and Methods, Psychometrics, Context (language use), soziale Ungleichheit, Messung, media_common.cataloged_instance, cancer, Humans, European union, Social sciences, sociology, anthropology, Socioeconomic status, EU-SILC (European Union Statistics on Income and Living Conditions), Erhebungstechniken und Analysetechniken der Sozialwissenschaften, Poverty, social inequalities, Gesundheitsversorgung, screening, Gesundheit, Public Health, Environmental and Occupational Health, Reproducibility of Results, Health Status Disparities, Health Surveys, Fundamental human needs, Methods and Techniques of Data Collection and Data Analysis, Statistical Methods, Computer Methods, Logistic Models, Socioeconomic Factors, measurement, ecological level
Abstract: Background: Studying social disparities in health implies the ability to measure them accurately, to compare them between different areas or countries and to follow trends over time. This study proposes a method for constructing a French European deprivation index, which will be replicable in several European countries and is related to an individual deprivation indicator constructed from a European survey specifically designed to study deprivation. Methods and Results: Using individual data from the European Union Statistics on Income and Living Conditions survey, goods/services indicated by individuals as being fundamental needs, the lack of which reflect deprivation, were selected. From this definition, which is specific to a cultural context, an individual deprivation indicator was constructed by selecting fundamental needs associated both with objective and subjective poverty. Next, the authors selected among variables available both in the European Union Statistics on Income and Living Conditions survey and French national census those best reflecting individual experience of deprivation using multivariate logistic regression. An ecological measure of deprivation was provided for all the smallest French geographical units. Preliminary validation showed a higher association between the French European Deprivation Index (EDI) score and both income and education than the Townsend index, partly ensuring its ability to measure individual socioeconomic status. Conclusion: This index, which is specific to a particular cultural and social policy context, could be replicated in 25 other European countries, thereby allowing European comparisons. EDI could also be reproducible over time. EDI could prove to be a relevant tool in evidence-based policy-making for measuring and reducing social disparities in health issues and even outside the medical domain.
Published: 2012

40. Burden of testicular, paratesticular and extragonadal germ cell tumours in Europe

Author: Rafael Marcos-Gragera, Eva Ardanaz, Magdalena Bielska-Lasota, Stanislaw Gozdz, Marina Vercelli, Pascale Grosclaude, Jan Adolfsson, Michel Coleman, Lucia Mangone, Andrea Necchi, MARIA JOSE SANCHEZ-PEREZ, Juan Melchor, Michael Schaapveld, Nicola Nicolai, Diego Serraino, Giske Ursin, Maria Zwierko, Jan Willem Coebergh, Emanuele Crocetti, Roberta De Angelis, Stefano Ferretti, Andrea Tavilla, Jourik Gietema, Gemma Gatta, ANGELO DEI TOS, Fabio Falcini, Andrés Cervantes, Riccardo A. Audisio, Paolo Contiero, Rosario Tumino, Laufey Tryggvadottir, Jadwiga Rachtan, Franco Berrino, Alessandro Gronchi, Trama Annalisa, Usel, Massimo, Damage and Repair in Cancer Development and Cancer Treatment (DARE), Guided Treatment in Optimal Selected Cancer Patients (GUTS), Trama, A, Mallone, S, Nicolai, N, Necchi, A, Schaapveld, M, Gietema, J, Znaor, A, Ardanaz, E, and Berrino, F
Subjects: Male, Cancer Research, Survival, Rare Diseases/epidemiology/mortality, rare cancers, SPERMATOCYTIC SEMINOMA, PROGNOSTIC-FACTORS, Cost of Illness, Prevalence, Cancer registries, Registries, Young adult, RARE CANCER, Child, paratesticular and extragonadal germ cell tumours, Relative survival, Incidence (epidemiology), Incidence, Middle Aged, Neoplasms, Germ Cell and Embryonal, Neoplasms, Germ Cell and Embryonal/epidemiology/mortality, Rare diseases, PREVALENCE, Europe, medicine.anatomical_structure, Oncology, OF-THE-LITERATURE, Child, Preschool, Sex cord tumour, Spermatocytic seminoma, Female, testicular, Germ cell, Adult, medicine.medical_specialty, Extragonadal, Adolescent, Urology, paratesticular, Testicular Neoplasms/epidemiology/mortality, CLASSIFICATION, Europe/epidemiology, NO, Young Adult, Age Distribution, Testicular Neoplasms, Testicular cancer, medicine, Humans, Survival analysis, ddc:613, Gynecology, extragonadal germ cell tumours, Germ cell tumour, business.industry, Paratesticular cancer, MORTALITY, Cancer, Infant, Testicular, medicine.disease, Rare diseases, Testicular cancer, Paratesticular cancer, Germ cell tumour, Sex cord tumour, Cancer registries, Incidence, Prevalence, Survival, Survival Analysis, TRENDS, CANCER INCIDENCE, Cancer research, business
Abstract: We provide updated estimates of survival, incidence, complete prevalence, and proportion cured for patients with testicular/paratesticular and extragonadal germ cell cancers in Europe, grouped according to the new list of cancer types developed by RARECARE. We collected data, archived in European cancer registries, with vital status information available to 31st December 2003.We analysed 26,000 cases of testicular, paratesticular and extragonadal germ cell cancers diagnosed 1995-2002, estimating that about 15,600 new testicular/paratesticular and 630 new extragonadal cancer cases occurred per year in EU27, with annual incidence rates of 31.5/1,000,000 and 1.27/1,000,000, respectively. Slightly more than 436,000 persons were alive at the beginning of 2008 with a diagnosis of testicular/paratesticular cancer, and about 17,000 with a diagnosis of extragonadal germ cell cancer.Five-year relative survival was 96% for testicular/paratesticular cancer and 71% for extragonadal germ cell cancer; the proportions cured were 95% and 69%, respectively. We found limited variation in survival between European regions except for non-semino matous testicular cancer, for which five-year relative survival ranged from 86% in Eastern Europe to 96% in Northern Europe. Survival for all cancer types considered decreased with increasing age at diagnosis.Further investigation is required to establish the real reasons for the lower survival in Eastern Europe. Considering the high prevalence of these highly curable cancers, it is important to monitor patients long-term, so as to quantify treatment-related risks and develop treatments having limited impact on quality of life. (C) 2011 Elsevier Ltd. All rights reserved.
Published: 2012

41. The care center influences the management of lymphoma patients in a universal health care system: an observational cohort study

Author: C. Bettiol, Sébastien Lamy, Guy Laurent, Fabien Despas, Gisèle Compaci, Jean-Claude Nogaro, G. Albertus, Cyrille Delpierre, Pascale Grosclaude, Christian Recher, Service de Pharmacologie Clinique, Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Hôpital Purpan [Toulouse], CHU Toulouse [Toulouse]-CHU Toulouse [Toulouse], Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, Service d'hématologie, Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-CHU Toulouse [Toulouse]-Hôpital Purpan [Toulouse], CHU Toulouse [Toulouse], Registre des cancers du Tarn, Association humanitaire (entraide, action sociale) - Albi, Centre de Recherches en Cancérologie de Toulouse (CRCT), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS), Service Pharmacologie Clinique [CHU Toulouse], Pôle Santé publique et médecine publique [CHU Toulouse], Centre Hospitalier Universitaire de Toulouse (CHU Toulouse)-Centre Hospitalier Universitaire de Toulouse (CHU Toulouse), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Service Hématologie - IUCT-Oncopole [CHU Toulouse], Pôle Biologie [CHU Toulouse], Centre Hospitalier Universitaire de Toulouse (CHU Toulouse)-Centre Hospitalier Universitaire de Toulouse (CHU Toulouse)-Pôle IUCT [CHU Toulouse], Centre Hospitalier Universitaire de Toulouse (CHU Toulouse), Registre général des cancers du Tarn, and BMC, BMC
Subjects: Male, French current practice, medicine.medical_specialty, Pediatrics, Lymphoma, [SDV]Life Sciences [q-bio], Health informatics, Health administration, 03 medical and health sciences, 0302 clinical medicine, Universal Health Insurance, Center-related management disparity, Health care, Antineoplastic Combined Chemotherapy Protocols, Medicine, Humans, Prospective Studies, Healthcare Disparities, Relative dose intensity, Prospective cohort study, Observational cohort, Aged, Quality of Health Care, business.industry, Health Policy, Public health, Nursing research, Middle Aged, Prognosis, 3. Good health, [SDV] Life Sciences [q-bio], 030220 oncology & carcinogenesis, Residence, Female, Lymphoma, Large B-Cell, Diffuse, business, 030215 immunology, Cohort study, Research Article
Abstract: International audience; AbstractBackgroundHealthcare providers-related disparities in adherence to the treatment plan among lymphoma patients are found even in a universal healthcare system, but the mechanism remains unclear. We investigated the association between the type of care center and the relative dose intensity and determined whether it persists after adjustment for patients’ recruitment differences.MethodsProspective observational cohort study of 294 patients treated with standard protocols for diffuse large B-cell lymphoma (DLBCL) in teaching or community public hospitals or in private centers in the French Midi-Pyrénées region from 2006–2013. To test our assumptions, we used multinomial and mixed-effect logistic models progressively adjusted for patients’ biomedical characteristics, socio-spatial characteristics and treatment-related toxicity events.ResultsPatients treated using standard protocols in the teaching hospital had more advanced stage and poorer initial prognosis without limitation regarding the distance from the residence to the care center. Patients’ recruitment profile across the different types of care center failed to explain the difference in relative dose intensity. Low relative dose intensity was less often observed in teaching hospital than elsewhere.ConclusionWe showed that even in a universal healthcare system, disparities in the management of DLBCL patients’ do exist according to the types of care center. A main issue may be to find and diffuse the reasons of this benefit in cancer management in the teaching hospital to the other centers.
Published: 2015

42. Total and partial cancer prevalence in the adult French population in 2008

Author: Nadine Bossard, N. Mitton, Pascale Grosclaude, Aurélien Belot, Marc Colonna, Francim : Réseau français des registres des cancers, CHU Toulouse [Toulouse]-Hôpital Purpan [Toulouse], CHU Toulouse [Toulouse], Registre des Cancers de l'Isère, CHU Grenoble, Biostatistiques santé, Département biostatistiques et modélisation pour la santé et l'environnement [LBBE], Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 (LBBE), Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS)-Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS)-Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 (LBBE), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS), Service de Biostatistiques [Lyon], Hospices Civils de Lyon (HCL), Département des maladies chroniques et traumatismes, Institut de Veille Sanitaire (INVS), Cancer Research UK Cancer Survival Group, London School of Hygiene and Tropical Medicine (LSHTM)-Faculty of Epidemiology and Population Health, Registre des cancers du Tarn, Association humanitaire (entraide, action sociale) - Albi, French Network of Cancer Registries (FRANCIM), Registre général des cancers du Tarn, Centre Hospitalier Universitaire de Toulouse (CHU Toulouse), and BMC, BMC
Subjects: Adult, Male, Pathology, medicine.medical_specialty, Cancer Research, Adolescent, Survival, [SDV]Life Sciences [q-bio], Population, Young Adult, Neoplasms, Total prevalence, medicine, Cancer burden, Prevalence, Genetics, Humans, Registries, education, Cancer prevalence, Aged, Aged, 80 and over, education.field_of_study, business.industry, Incidence (epidemiology), Incidence, Cancer, Middle Aged, medicine.disease, 3. Good health, [SDV] Life Sciences [q-bio], Oncology, Population Surveillance, Female, France, business, Partial prevalence, Demography, Research Article
Abstract: Background To provide estimations of partial and total prevalence of 24 cancer sites in France in 2008. The estimations of partial prevalence were compared with the previous estimations for 2002. Methods Nationwide estimations of incidence and survival data from cancer registries were used for partial prevalence. Nationwide incidence and mortality data were used to estimate total prevalence. Results At the end of 2008, in France, nearly 3 million people still alive had received a diagnosis of cancer. Of all prevalent cases, 36% were diagnosed 0 to 5 years earlier and 43% diagnosed 6 to 10 years earlier. The cancer sites with the highest prevalence were the prostate, the breast, and the colon-rectum. The changes in partial prevalence over 5 years (2002 to 2008) were considerable (+244,000 cases) and deemed to be highly related to changes in incidence. Conclusion The present estimations update the French prevalence data and highlight the burden of cancer in the population, especially in the elderly. The methods of this study had the advantage of using recent incidence and survival data, which is necessary to show sudden changes in incidence trends and changes in survival that impact prevalence. Electronic supplementary material The online version of this article (doi:10.1186/s12885-015-1168-2) contains supplementary material, which is available to authorized users.
Published: 2015

43. Changes in dynamics of excess mortality rates and net survival after diagnosis of follicular lymphoma or diff use large B-cell lymphoma: comparison between European population-based data (EUROCARE-5)

Author: Bernard Rachet, Pamela Minicozzi, Laura Botta, Milena Sant, Christian Herrmann, Pascale Grosclaude, Giovanna Tagliabue, ROCH GIORGI, Mariano Santaquilani, Meneghini Elisabetta, Aurélien Belot, Roberta De Angelis, Stefano Ferretti, Silvia Francisci, Paolo Contiero, Alexander Katalinic, Neville Calleja, Franco Berrino, Laurent Remontet, Paolo Baili, David Brewster, BOSSARD Nadine, Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 (LBBE), Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS), Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale (SESSTIM - U912 INSERM - Aix Marseille Univ - IRD), Institut de Recherche pour le Développement (IRD)-Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM), Registre des hémopathies malignes de Côte d'Or, London School of Hygiene and Tropical Medicine (LSHTM), IRCCS Istituto Nazionale dei Tumori [Milano], Istituto Superiore di Sanità (ISS), Epidemiologie-Biostatistique [Bordeaux], Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Bordeaux Ségalen [Bordeaux 2], Institut Bergonié [Bordeaux], UNICANCER, CIC Bordeaux, Université Bordeaux Segalen - Bordeaux 2-Institut National de la Santé et de la Recherche Médicale (INSERM), CHU Caen, Normandie Université (NU)-Tumorothèque de Caen Basse-Normandie (TCBN), Université de Bourgogne (UB), CHU Dijon, Centre Hospitalier Universitaire de Dijon - Hôpital François Mitterrand (CHU Dijon), M Mägi, T Aareleid, M Velten, J Faivre, M Maynadié, A S Woronoff, B Tretarre, N Bossard, A Belot, M Colonna, B Lapôtre-Ledoux, P Grosclaude, H Brenner, A Nennecke, B Holleczek, A Katalinic, J G Jónasson, L Tryggvadóttir, G Mazzoleni, A Bulatko, C Buzzoni, A Giacomin, S Ferretti, G Gatta, M Sant, H Amash, C Amati, P Baili, F Berrino, S Bonfarnuzzo, L Botta, F Di Salvo, R Foschi, C Margutti, E Meneghini, P Minicozzi, A Trama, R De Angelis, M Caldora, R Capocaccia, E Carrani, S Francisci, S Mallone, D Pierannunzio, P Roazzi, S Rossi, M Santaquilani, A Tavilla, F Pannozzo, M Natali, L Bonelli, M Vercelli, C Marchesi, C Cirilli, M Fusco, M F Vitale, M Michiara, R Tumino, P Giorgi Rossi, M Vicentini, F Falcini, O Sechi, R Cesaraccio, S Piffer, G Tagliabue, P Contiero, G Smailyte, N Calleja, R Micallef, T B Johannesen, M Bielska-Lasota, C Safaei Diba, M Primic-Zakelj, M Errezola, N Larrañaga, R Marcos-Gragera, L Vilardell, M J Sanchez, E Molina, C Navarro, M D Chirlaque, C Moreno-Iribas, E Ardanaz, J Galceran, M Carulla, M Mousavi, S M Ess, H Frick, M Lorez, S M Ess, C Herrmann, I Konzelmann, O Visser, V Lemmens, R Otter, M Coleman, C Allemani, B Rachet, J Verne, N Easey, G Lawrence, T Moran, J Rashbass, M Roche, J Wilkinson, D H Brewster, D W Huws, C White, Institut de Recherche pour le Développement (IRD)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Aix Marseille Université (AMU), Istituto Superiore di Sanita [Rome], Biostatistiques santé, Département biostatistiques et modélisation pour la santé et l'environnement [LBBE], Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS)-Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS)-Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 (LBBE), and Malbec, Odile
Subjects: Adult, Male, Pathology, medicine.medical_specialty, Pediatrics, Adolescent, [SDV]Life Sciences [q-bio], Follicular lymphoma, Autopsy, NO, minimum clinical recommendations, 03 medical and health sciences, Young Adult, 0302 clinical medicine, Internal medicine, medicine, follow up, Humans, 030212 general & internal medicine, Young adult, cancer survival, Lymphoma, Follicular, Non-Hodgkin lymphoma, Aged, Hematology, Wales, minimum clinical recommendations, Non-Hodgkin lymphoma, relative survival, cancer survival, follow up, business.industry, Cancer, relative survival, Middle Aged, medicine.disease, 3. Good health, Lymphoma, [SDV] Life Sciences [q-bio], Europe, Scotland, 030220 oncology & carcinogenesis, Female, Lymphoma, Large B-Cell, Diffuse, business, Diffuse large B-cell lymphoma, International Classification of Diseases for Oncology
Abstract: Summary Background Since 2001, the World Health Organization classification of tumours of haematopoietic and lymphoid tissues and the International Classification of Diseases for Oncology (third edition) have improved data collection for lymphoma subtypes in most European cancer registries and allowed reporting on the major non-Hodgkin lymphoma subtypes. Treatment of non-Hodgkin lymphoma has changed profoundly, benefiting patients with follicular lymphoma or diffuse large B-cell lymphoma. We aimed to compare dynamics of cancer mortality in patients with follicular lymphoma or diffuse large B-cell lymphoma in five large European areas using data for survival from the largest number of collaborative European population-based cancer registries (EUROCARE). Methods We considered follicular lymphoma and diffuse large B-cell lymphoma cases in patients aged older than 15 years diagnosed between Jan 1, 1996, and Dec 31, 2004, and recorded in 43 cancer registries in five areas: Scotland and Wales, and northern, central, eastern, and southern Europe. We excluded cases incidentally diagnosed at autopsy or known from death certificates only. The vital status could be updated on Dec 31, 2008, in all registries but the French ones (Dec 31, 2007). We obtained changes in net survival with the Pohar-Perme estimator and excess mortality rate with a flexible parametric model according to age and year of diagnosis. Findings We identified 13 988 follicular lymphoma and 25 320 diffuse large B-cell lymphoma cases. We noted improvements in 5-year net survival for all ages between the 1999–2001 and 2002–04 periods for both cancers (except for follicular lymphoma in Scotland and Wales and diffuse large B-cell lymphoma in eastern Europe). For follicular lymphoma, 5-year net survival in northern Europe was 64% (95% CI 58–71) in 1999–2001 versus 75% (69–80) for 2002–04, for Scotland and Wales, it was 71% (66–76) versus 68% (64–72), for central Europe, it was 64% (61–67) versus 72% (70–75), for southern Europe, it was 67% (63–70) versus 73% (70–76), and for eastern Europe, it was 50% (43–57) versus 61% (54–69). For diffuse large B-cell lymphoma, 5-year net survival in northern Europe was 41% (35–49) versus 58% (54–62), in Scotland and Wales, it was 44% (41–48) versus 52% (49–54), in central Europe, it was 46% (44–47) versus 50% (48–51), in southern Europe, it was 44% (42–47) versus 50% (48–52), and in eastern Europe, it was 47% (41–54) versus 46% (43–50). We noted the largest area disparity during the 2002–04 period between eastern and northern Europe. We noted a significant effect of the year of diagnosis on the excess mortality rate for all ages in all areas, except for diffuse large B-cell lymphoma in eastern Europe. The excess mortality rate was not constant during the follow-up period: we noted a high rate early for both lymphomas, except for follicular lymphoma in northern Europe. Interpretation Although survival for follicular lymphoma and diffuse large B-cell lymphoma is improving, the results from this study should foster the search for more and better means of improvement of access to adequate care than that at present, as there remains variation in survival between European regions. Study of the dynamics of the excess mortality rate seems to be a useful clinical indicator to help the practitioner's choice of optimum management of patients. Funding Compagnia di San Paolo, Fondazione Cariplo Italy, Italian Ministry of Health, European Commission, Registre des Hemopathies Malignes de Cote d'Or, and French Agence Nationale de la Recherche.
Published: 2015

44. Guidelines for time-to-event end point definitions in sarcomas and gastrointestinal stromal tumors (GIST) trials: results of the DATECAN initiative (Definition for the Assessment of Time-to-event Endpoints in CANcer trials)

Author: Shreyaskumar Patel, Carine Bellera, Hans Gelderblom, M. Delannes, Robert J. Grimer, Chandrajit P. Raut, Sophie Piperno-Neumann, Odile Oberlin, Chiara Mussi, Rolf D. Issels, Binh Bui, J.-Y. Blay, M. van Glabbeke, M. Ouali, Antoine Italiano, Alessandro Gronchi, O.S. Nielsen, E. Stoeckle, Peter Hohenberger, Simone Mathoulin-Pélissier, Stefan Sleijfer, Nicolas Penel, Rick L. Haas, Suzanne George, C. Le Pechoux, I.L. Ray-Coquard, M. Fiore, S. Bonvalot, Florence Duffaud, Robert S. Benjamin, F. Bonnetain, V. Jooste, Pascale Grosclaude, Thomas Filleron, Scott M. Schuetze, Piotr Rutkowski, F. Collin, Anders Krarup-Hansen, Penella J. Woll, Sophie Gourgou-Bourgade, Thomas F. DeLaney, Paolo G. Casali, Tienhan Sandrine Dabakuyo, Saskia Litière, Centre d'épidémiologie des populations (CEP), Université de Bourgogne (UB)-Centre Régional de Lutte contre le cancer Georges-François Leclerc [Dijon] (UNICANCER/CRLCC-CGFL), UNICANCER-UNICANCER, Registre des cancers du Tarn, Association humanitaire (entraide, action sociale) - Albi, and Medical Oncology
Subjects: medicine.medical_specialty, Consensus, Time Factors, sarcoma, Delphi Technique, Endpoint Determination, [SDV]Life Sciences [q-bio], Disease-Free Survival, law.invention, 03 medical and health sciences, gastrointestinal stromal tumors, 0302 clinical medicine, Randomized controlled trial, SDG 3 - Good Health and Well-being, law, Multidisciplinary approach, Terminology as Topic, medicine, Humans, Medical physics, Treatment Failure, guidelines, time-to-event end point, ComputingMilieux_MISCELLANEOUS, Randomized Controlled Trials as Topic, 030304 developmental biology, Event (probability theory), 0303 health sciences, End point, GiST, Surrogate endpoint, business.industry, efficacy measure, Cancer, Hematology, medicine.disease, 3. Good health, Oncology, Research Design, 030220 oncology & carcinogenesis, randomized controlled trial, Disease Progression, Radiology, Sarcoma, business
Abstract: The DATECAN initiative (Definition for the Assessment of Time-to-event Endpoints in CANcer trials) aims to provide recommendations for definitions of time-to-event end points in cancer randomized controlled trials. We relied on a consensus method based on a multidisciplinary panel of experts to develop these guidelines for trials on sarcomas and gastrointestinal stromal tumors. Background The use of potential surrogate end points for overall survival, such as disease-free survival (DFS) or time-to-treatment failure (TTF) is increasingly common in randomized controlled trials (RCTs) in cancer. However, the definition of time-to-event (TTE) end points is rarely precise and lacks uniformity across trials. End point definition can impact trial results by affecting estimation of treatment effect and statistical power. The DATECAN initiative (Definition for the Assessment of Time-to-event End points in CANcer trials) aims to provide recommendations for definitions of TTE end points. We report guidelines for RCT in sarcomas and gastrointestinal stromal tumors (GIST). Methods We first carried out a literature review to identify TTE end points (primary or secondary) reported in publications of RCT. An international multidisciplinary panel of experts proposed recommendations for the definitions of these end points. Recommendations were developed through a validated consensus method formalizing the degree of agreement among experts. Results Recommended guidelines for the definition of TTE end points commonly used in RCT for sarcomas and GIST are provided for adjuvant and metastatic settings, including DFS, TTF, time to progression and others. Conclusion Use of standardized definitions should facilitate comparison of trials' results, and improve the quality of trial design and reporting. These guidelines could be of particular interest to research scientists involved in the design, conduct, reporting or assessment of RCT such as investigators, statisticians, reviewers, editors or regulatory authorities.
Published: 2015

45. Primary care physicians and oncologists are partners in cancer announcement

Author: Emile Escourrou, Christelle Omnes, Marie-Eve Rougé Bugat, Eric Bauvin, Stéphane Oustric, Cyrille Delpierre, Pascale Grosclaude, Nathalie Boussier, Jean-Pierre Delord, Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées, Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, FRANCIM, and Réseau des registres français du cancer
Subjects: Adult, Male, medicine.medical_specialty, [SDV]Life Sciences [q-bio], education, Alternative medicine, Primary care, Disclosure, Patient Care Planning, Physicians, Primary Care, 03 medical and health sciences, Postal questionnaire, 0302 clinical medicine, Neoplasms, Surveys and Questionnaires, medicine, Humans, 030212 general & internal medicine, Prospective Studies, Prospective cohort study, health care economics and organizations, ComputingMilieux_MISCELLANEOUS, Aged, Response rate (survey), Oncologists, business.industry, Nursing research, Communication, Primary care physician, Cancer, Middle Aged, medicine.disease, 3. Good health, Cross-Sectional Studies, Oncology, 030220 oncology & carcinogenesis, Family medicine, Female, France, business
Abstract: The primary care physician (PCP) is central to cancer patients’ management. Announcement of the diagnosis is a critical time for patients, even if they wish to be fully informed. The French National Cancer Plan, developed 10 years ago, includes a diagnosis disclosure procedure (DDP) to be used by oncologists, which makes specific provision for a time of communication with PCPs. So, we asked PCPs about their role in cancer announcement since the launching of the DDP. A cross-sectional prospective study by postal questionnaire was sent to 500 PCPs in the largest region of France. It addressed (1) the characteristics of cancer disclosure, (2) PCPs’ source of information of the diagnosis, (3) time of disclosure, (4) information exchange, and (5) the physicians’ knowledge of the DDP. The response rate was 48 %. In 20 % of cases, oncologists delegated the announcement to PCPs. In 19 % of cases, it was the patient or their family who informed the PCP of the diagnosis. We identified three announcement phases of cancer diagnosis in the physicians’ clinical practice: pre-disclosure, disclosure, and repeat disclosure. In 57 % of cases, PCPs lacked information on prognosis and in 60 % on treatment. Regarding the DDP, nearly half of PCPs did not know the procedure itself or its content. PCPs announce the cancer diagnosis, even if they have not received the necessary information to do so. The DDP needs to be adapted for use in primary care practice.
Published: 2015

46. Guideline sheets on the side effects of anticancer drugs are useful for general practitioners

Author: Nathalie Boussier, Maryse Lapeyre-Mestre, Stéphane Oustric, Jean-Pierre Delord, Marie-Eve Rouge-Bugat, François Bertucci, Joy Bacrie, Eric Bauvin, Pascale Grosclaude, Donia Lassoued, Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), FRANCIM, and Réseau des registres français du cancer
Subjects: Adult, Male, medicine.medical_specialty, [SDV]Life Sciences [q-bio], Alternative medicine, Antineoplastic Agents, Pilot Projects, 03 medical and health sciences, 0302 clinical medicine, General Practitioners, Neoplasms, medicine, Humans, Prospective Studies, 030212 general & internal medicine, Intensive care medicine, Digestive cancer, ComputingMilieux_MISCELLANEOUS, Aged, Gynecology, Physician-Patient Relations, business.industry, Communication, Nursing research, Guideline, Middle Aged, Gynecological cancer, 3. Good health, Cancer treatment, Oncology, 030220 oncology & carcinogenesis, Practice Guidelines as Topic, General practice, Female, business
Abstract: General practitioners (GPs) are more and more involved in the treatment of cancer patients but feel not informed enough about anticancer treatments and associated side effects. Better communication with treatment centers is needed. We hypothesized that information sheets could improve communication.This prospective, multicentric, and interventionist study aimed at implementing and assessing therapeutic sheets describing the side effects of anticancer drugs used for digestive and gynecological cancers and their recommended management. GPs' phone interviews were done through three successive phases and two independent cohorts. The first phase (T1; 242 GPs with one patient recently treated) listed their expectations, the second (T2; 158 GPs with one patient beginning treatment) assessed the GPs' opinion regarding the sheets, and the third (T3; responder GPs 4 months after the start of T2) assessed their usefulness in practice.In T1, 94% of GPs declared their need of having information sheets, notably for the management of side effects. Thirty-one one-page sheets were created. In T2, 83.5% gave a favorable opinion about sheets and 80% envisaged their use in the case of side effect. In T3, 56% of GPs whose patient had experienced a side effect had used successfully the sheets for its management, and 21% of patients with side effect were hospitalized. A strong correlation existed between the use of the sheet by GPs and the hospitalization (OR 7.35 in the case of no use vs use).The guideline sheets represent a simple and low-cost solution to help GPs managing drugs' side effects and perhaps decrease the rate of unplanned hospitalizations.
Published: 2015

47. Ovarian cancer in France: Trends in incidence, mortality and survival, 1980–2012

Author: Karine Ligier, Emilie Marrer, Brigitte Trétarre, Nathalie Leone, Anne-Valérie Guizard, Bénédicte Lapôtre-Ledoux, Patricia Delafosse, Simona Bara, Patrick Arveux, Faiza Bessaoud, Nadine Bossard, Zoé Uhry, Anne-Sophie Woronoff, Pascale Grosclaude, Florence Molinié, Michel Velten, Biostatistiques santé, Département biostatistiques et modélisation pour la santé et l'environnement [LBBE], Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 (LBBE), Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS)-Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS)-Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 (LBBE), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS), FRANCIM, Réseau des registres français du cancer, Registre des cancers de la Manche [CHPC - Site Louis Pasteur], Site Louis Pasteur [CHPC], and CH Centre Hospitalier Public du Cotentin (CHPC)-CH Centre Hospitalier Public du Cotentin (CHPC)
Subjects: Adult, medicine.medical_specialty, [SDV]Life Sciences [q-bio], Carcinoma, Ovarian Epithelial, 03 medical and health sciences, 0302 clinical medicine, Epidemiology, Carcinoma, Humans, Sex Cord-Gonadal Stromal Tumors, Medicine, Neoplasms, Glandular and Epithelial, Registries, Survival rate, ComputingMilieux_MISCELLANEOUS, Aged, 030304 developmental biology, Aged, 80 and over, Ovarian Neoplasms, 0303 health sciences, business.industry, Obstetrics, Incidence, Incidence (epidemiology), Mortality rate, Obstetrics and Gynecology, Cancer, Middle Aged, Neoplasms, Germ Cell and Embryonal, medicine.disease, 3. Good health, Surgery, Survival Rate, Oncology, 030220 oncology & carcinogenesis, Female, France, Germ cell tumors, business, Ovarian cancer
Abstract: Objective The aim of this epidemiological study was to describe the incidence, mortality and survival of ovarian cancer (OC) in France, according to age, period of diagnosis, and histological type. Methods Incidence and mortality were estimated from 1980 to 2012 based on data in French cancer registries and from the Centre for Epidemiology of Causes of Death (CepiDc-Inserm) up to 2009. Net survival was estimated from registry data using the Pohar-Perme method, on cases diagnosed between 1989 and 2010, with date of last follow-up set at 30 June 2013. Results In 2012, 4615 cases of OC were diagnosed in France, and 3140 women died from OC. World population age-standardized incidence and mortality rates declined by respectively 0.6% and 1.2% per year between 1980 and 2012. Net survival at 5years increased slightly, from 40% for the period 1989–1993 to 45% for the period 2005–2010. Net survival varied considerably according to histological type. Germ cell tumors had better net survival at 10years (81%) compared to epithelial tumors (32%), sex cord-stromal tumors (40%) and tumors without biopsy (8%). Conclusions Our study shows a decline in incidence and mortality rates from ovarian cancer in France between 1980 and 2012, but net survival remains poor overall, and improved only slightly over the whole study period.
Published: 2015

48. Adherence to consensus-based diagnosis and treatment guidelines in adult soft-tissue sarcoma patients: a French prospective population-based study

Author: E. Bauvin, M. Delannes, M. Savès, S. Hoppe, Simone Mathoulin-Pélissier, S. Albert, Jean Mendiboure, Antoine Italiano, J. Goddard, E. Stoeckle, S. Le Guellec, J.-M. Coindre, G. Kantor, Michèle Kind, Pascale Grosclaude, Binh Bui, A. Cowppli-Bony, Carine Bellera, Christine Chevreau, Registre des cancers du Tarn, and Association humanitaire (entraide, action sociale) - Albi
Subjects: Adult, Male, medicine.medical_specialty, [SDV]Life Sciences [q-bio], Population, Delphi method, Internal medicine, Health care, Biopsy, medicine, Humans, Prospective Studies, Prospective cohort study, education, ComputingMilieux_MISCELLANEOUS, Aged, education.field_of_study, medicine.diagnostic_test, business.industry, Incidence (epidemiology), Soft tissue sarcoma, Sarcoma, Hematology, Original Articles, Middle Aged, medicine.disease, Combined Modality Therapy, Surgery, Oncology, Practice Guidelines as Topic, Female, France, Guideline Adherence, business
Abstract: Soft-tissue sarcomas (STSs) are rare tumors with varied histological presentations. Management and treatment are thus complex, but crucial for patient outcomes. We assess adherence to adult STS management guidelines across two French regions (10% of the French population). We also report standardized incidence.STS patients diagnosed from 1 November 2006 to 31 December 2007 were identified from pathology reports, medical hospital records, and cancer registries. Guideline adherence was assessed by 23 criteria (validated by Delphi consensus method), and age and sex-standardized incidence rates estimated. Associations between patient, treatment, and institutional factors and adherence with three major composite criteria relating to diagnostic imaging and biopsy as well as multidisciplinary team (MDT) case-review are reported.Two hundred and seventy-four patients were included (57.7% male, mean age 60.8 years). Practices were relatively compliant overall, with over 70% adherence for 10 criteria. Three criteria with perfect Delphi consensus had low adherence: receiving histological diagnosis before surgery, adequacy of histological diagnosis (adherence around 50% for both), and MDT discussion before surgery (adherence30%). Treatment outside of specialized centers was associated with lower adherence for all three composite criteria, and specific tumor sites and/or features were associated with lower adherence for diagnostic imaging, methods, and MDT meetings. STS standardized incidence rates were 4.09 (European population) and 3.33 (World) /100 000 inhabitants.Initial STS diagnosis and treatment across all stages (imaging, biopsy, and MDT meetings) need improving, particularly outside specialized centers. Educational interventions to increase surgeon's sarcoma awareness and knowledge and to raise patients' awareness of the importance of seeking expert care are necessary.
Published: 2014

49. Management of rectal cancers in relation to treatment guidelines: a population-based study comparing Italian and French patients

Author: A. Buemi, G. Launoy, M. Ponz de Leon, Pascale Grosclaude, Stefania Maffei, Pamela Minicozzi, Michel Velten, P. Giorgi Rossi, Claudia Allemani, Patricia Delafosse, Francesco Iachetta, Anne-Marie Bouvier, Rosario Tumino, Adele Caldarella, Jean Faivre, M Fusco, Massimo Vicentini, Florence Molinié, Milena Sant, Simona Bara, Brigitte Trétarre, M. Sant, Véronique Bouvier, Rosaria Cesaraccio, Massimo Federico, Anne-Sophie Woronoff, Emanuele Crocetti, Adriano Giacomin, Mario Budroni, Fabio Falcini, Anne Marie Bouvier, Lucia Mangone, M. Colonna, Shaniko Kaleci, M. Robaszkiewicz, Registre Bourguignon des Cancers Digestifs, Lipides - Nutrition - Cancer (U866) (LNC), and Université de Bourgogne (UB)-Institut National de la Santé et de la Recherche Médicale (INSERM)-AgroSup Dijon - Institut National Supérieur des Sciences Agronomiques, de l'Alimentation et de l'Environnement-Ecole Nationale Supérieure de Biologie Appliquée à la Nutrition et à l'Alimentation de Dijon (ENSBANA)-Université de Bourgogne (UB)-Institut National de la Santé et de la Recherche Médicale (INSERM)-AgroSup Dijon - Institut National Supérieur des Sciences Agronomiques, de l'Alimentation et de l'Environnement-Ecole Nationale Supérieure de Biologie Appliquée à la Nutrition et à l'Alimentation de Dijon (ENSBANA)-Centre Hospitalier Universitaire de Dijon - Hôpital François Mitterrand (CHU Dijon)
Subjects: Male, medicine.medical_specialty, Preoperative radiotherapy, Population level, Colorectal cancer, [SDV]Life Sciences [q-bio], Anal Canal, Adenocarcinoma, Logistic regression, Internal medicine, medicine, Humans, ComputingMilieux_MISCELLANEOUS, Aged, Aged, 80 and over, Hepatology, business.industry, Rectal Neoplasms, Gastroenterology, Cancer, Odds ratio, Middle Aged, medicine.disease, Neoadjuvant Therapy, 3. Good health, Surgery, Cancer registry, Population based study, Italy, Practice Guidelines as Topic, Lymph Node Excision, Female, Radiotherapy, Adjuvant, France, Guideline Adherence, business, Organ Sparing Treatments
Abstract: Few studies have investigated rectal cancer management at the population level. We compared how rectal cancers diagnosed in Italy (2003-2005) and France (2005) were managed, and evaluated the extent to which management adhered to European guidelines.Samples of 3938 Italian and 2287 French colorectal cancer patients were randomly extracted from 8 and 12 cancer registries respectively. Rectal cancer patients (860 Italian, 559 French) were analysed. Logistic regression models estimated odds ratios (ORs) of being treated with curative intent, receiving sphincter-saving surgery, and receiving preoperative radiotherapy.Similar proportions of Italian and French patients were treated with curative intent (70% vs. 67%; OR=0.92 [0.73-1.16]); the respective proportions receiving sphincter-saving surgery were 21% and 33% (OR=1.15 [0.86-1.53]). In about 50% of those treated with curative intent, ≥ 12 lymph nodes were harvested in both countries. The proportion receiving postoperative radiotherapy was higher in Italy than in France (25% vs. 11%, p0.01), but French patients were more likely to receive preoperative radiotherapy (52% vs. 21%; OR=4.06 [2.79-5.91]).The proportions of patients receiving preoperative radiotherapy and the numbers of lymph nodes sampled were low in both countries. Centralising treatment and potentiating screening would be practical ways of improving outcomes and adhering to guidelines.
Published: 2014

50. Childhood adversity as a risk for cancer: findings from the 1958 British birth cohort study

Author: Thierry Lang, Michelle Kelly-Irving, Benoit Lepage, Noriko Cable, David Blane, Rebecca E. Lacey, Dominique Dedieu, Cyrille Delpierre, Melanie Bartley, Pascale Grosclaude, Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Epidémiologie - Recherche clinique, CHU Toulouse [Toulouse]-Hôpital Purpan [Toulouse], CHU Toulouse [Toulouse]-Faculté de Médecine, Department of Epidemiology and Public Health, University College of London [London] (UCL), Department of Primary Care and Public Health, Imperial College London, Institut Claudius Regaud, This work was initially supported by the French Institut national du Cancer (INCa)., BMC, Ed., Service Epidémiologie clinique et santé publique [CHU Toulouse], Pôle Santé publique et médecine publique [CHU Toulouse], and Centre Hospitalier Universitaire de Toulouse (CHU Toulouse)-Centre Hospitalier Universitaire de Toulouse (CHU Toulouse)
Subjects: Male, Parents, Comorbidity, Foster Home Care, 0302 clinical medicine, Child of Impaired Parents, 5. Gender equality, Pregnancy, Risk Factors, Neoplasms, Epidemiology, Ethnicity, Child Abuse, Prospective Studies, 030212 general & internal medicine, Child, Prospective cohort study, Cancer, Incidence, Mental Disorders, Middle Aged, 3. Good health, Substance abuse, 030220 oncology & carcinogenesis, Cohort, Psychosocial factors, Life course approach, Cohort studies, Female, Research Article, Cohort study, medicine.medical_specialty, (MeSH): Social medicine, National Child Development Study, Substance-Related Disorders, Social medicine, Life Change Events, 03 medical and health sciences, Environmental health, medicine, Humans, Sex Distribution, Socioeconomic status, Marital Status, business.industry, Public Health, Environmental and Occupational Health, Life course, Criminals, medicine.disease, United Kingdom, Socioeconomic Factors, Psychological stress, [SDV.SPEE] Life Sciences [q-bio]/Santé publique et épidémiologie, [SDV.SPEE]Life Sciences [q-bio]/Santé publique et épidémiologie, business, Demography
Abstract: International audience; BACKGROUND: To analyse whether Adverse Childhood Experiences (ACE) are associated with an increased risk of cancer. METHODS: The National child development study (NCDS) is a prospective birth cohort study with data collected over 50 years. The NCDS included all live births during one week in 1958 (n = 18558) in Great Britain. Self-reported cancer incidence was based on 444 participants reporting having had cancer at some point and 5694 reporting never having cancer. ACE was measured using reports of: 1) child in care, 2) physical neglect, 3) child's or family's contact with the prison service, 4) parental separation due to divorce, death or other, 5) family experience of mental illness & 6) family experience of substance abuse. The resulting variable had three categories, no ACEs/ one ACE/ 2 + ACEs and was used to test for a relationship with cancer. Information on socioeconomic characteristics, pregnancy and birth were extracted as potential confounders. Information on adult health behaviours, socioeconomic environment, psychological state and age at first pregnancy were added to the models. Multivariate models were run using multiply-imputed data to account for missing data in the cohort. RESULTS: The odds of having a cancer before 50y among women increased twofold for those who had 2+ ACEs versus those with no ACEs, after adjusting for adult factors and early life confounders (OR: 2.1, 95%CI: 1.42-3.21, p < 0.001). CONCLUSION: These findings suggest that cancer risk may be influenced by exposure to stressful conditions and events early on in life. This is potentially important in furthering our understanding of cancer aetiology, and consequently in redirecting scientific research and developing appropriate prevention policies.
Published: 2013

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