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Objectives Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) in healthcare teams to improve cancer patients’ experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients dealing with cancer. We aimed to explore APs’ perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. Methods A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and two years afterwards (T2). Limiting and facilitating factors of APs’ integration into clinical teams were analyzed in terms of governance, culture, resources and tools. Results The most significant limiting factors raised by APs to be integrated into clinical teams were: governance involvement, organizational boundaries, team members' availabilities, and confusion about the specific roles played by APs. Communication challenges were also raised, leading to inadequate promotion of the program to patients. The lack of time, space and compensation were also mentioned as limiting factors. Creating opportunities for team members to meet APs, building trust and teaching team members how APs’ activities are complementary to theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in the PAROLE-Onco program promotion to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs’ added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. Conclusion Over time, APs were able to identify the best factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources, and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

IntroductionIn a context of limited genetic specialists, collaborative models have been proposed to ensure timely access to high quality oncogenetic services for individuals with inherited cancer susceptibility. Yet, extensive variability in the terminology used and lack of a clear understanding of how interprofessional collaboration is operationalised and evaluated currently constrains the development of a robust evidence base on the value of different approaches used to optimise access to these services. To fill in this knowledge gap, this scoping review aims to systematically unpack the nature and extent of collaboration proposed by these interventions, and synthesise the evidence available on their implementation, effectiveness and economic impact.Methods and analysisFollowing the Joanna Briggs Institute guidelines for scoping reviews, a comprehensive literature search will be conducted to identify peer-reviewed and grey literature on collaborative models used for adult patients with, or at increased risk of, hereditary breast, ovarian, colorectal and prostate cancers. An initial search was developed for Medline, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), Cochrane and Web of Science on 13 June 2022 and will be complemented by searches in Google and relevant websites. Documents describing either the theory of change, planning, implementation and/or evaluation of these interventions will be considered for inclusion. Results will be summarised descriptively and used to compare relevant model characteristics and synthesise evidence available on their implementation, effectiveness and economic impact. This process is expected to guide the development of a definition and typology of collaborative models in oncogenetics that could help strengthen the knowledge base on these interventions. Moreover, because we will be mapping the existing evidence on collaborative models in oncogenetics, the proposed review will help us identify areas where additional research might be needed.Ethics and disseminationThis research does not require ethics approval. Results from this review will be disseminated through peer-reviewed articles and conferences.

(1) Background: The Genetic Counseling Satisfaction Scale (GCSS) is a widely used tool to evaluate patient satisfaction. To our knowledge, a validated French-language version of this tool is not yet available. This article reports on the cross-cultural adaptation and validation of a French version of the Genetic Counseling Satisfaction Scale (GCSS) to evaluate genetic counseling services for patient consultation in hereditary breast and ovarian cancer (HBOC). (2) Methods: The scale was culturally adapted following guidelines from Beaton et al. (2000). Cognitive interviews were conducted to ensure items were understood according to the intended meaning. The internal consistency, floor and ceiling effects, and testing of group differences were assessed using a sample of 172 patients who attended a pretest group genetic counseling session. (3) Results: Participants understood all items according to the intended meaning. The internal consistency was high for the total scale (0.90) and for the corrected item-to-total correlations (varying between 0.62 and 0.78). No floor or ceiling effects were observed. Group difference analyses generally followed expectations. (4) Conclusion: This process generated a French version of the GCSS that is clearly understood by patients, and has psychometric properties adequately in line those reported for its original English version.

Simple Summary We recently developed an oncogenetic model to overcome the unprecedented demand for genetic counseling and testing for hereditary breast and ovarian cancer. Quality and performance indicators showed that the implementation of this model improved access to genetic counseling and minimized delays for genetic tests for patients, who reported to be overwhelmingly satisfied with the process. However, it remains unknown whether this model is robust and sustainable or requires adjustments. In addition, whether the model could be deployed elsewhere remains also to be elucidated. The C-MOnGene study was therefore designed to gain an in-depth understanding of the context in which the model was developed and implemented, and document the lessons that can be learned to optimize oncogenetic services delivery in other settings. Abstract Medical genetic services are facing an unprecedented demand for counseling and testing for hereditary breast and ovarian cancer (HBOC) in a context of limited resources. To help resolve this issue, a collaborative oncogenetic model was recently developed and implemented at the CHU de Québec-Université Laval; Quebec; Canada. Here, we present the protocol of the C-MOnGene (Collaborative Model in OncoGenetics) study, funded to examine the context in which the model was implemented and document the lessons that can be learned to optimize the delivery of oncogenetic services. Within three years of implementation, the model allowed researchers to double the annual number of patients seen in genetic counseling. The average number of days between genetic counseling and disclosure of test results significantly decreased. Group counseling sessions improved participants’ understanding of breast cancer risk and increased knowledge of breast cancer and genetics and a large majority of them reported to be overwhelmingly satisfied with the process. These quality and performance indicators suggest this oncogenetic model offers a flexible, patient-centered and efficient genetic counseling and testing for HBOC. By identifying the critical facilitating factors and barriers, our study will provide an evidence base for organizations interested in transitioning to an oncogenetic model integrated into oncology care; including teams that are not specialized but are trained in genetics.

Quebec is one of the Canadian provinces with the highest rates of cancer incidence and prevalence. A study by the Rossy Cancer Network (RCN) of McGill university assessed six aspects of the patient experience among cancer patients and found that emotional support is the aspect most lacking. To improve this support, trained patient advisors (PAs) can be included as full-fledged members of the healthcare team, given that PA can rely on their knowledge with experiencing the disease and from using health and social care services to accompany cancer patients, they could help to round out the health and social care services offer in oncology. However, the feasibility of integrating PAs in clinical oncology teams has not been studied. In this multisite study, we will explore how to integrate PAs in clinical oncology teams and, under what conditions this can be successfully done. We aim to better understand effects of this PA intervention on patients, on the PAs themselves, the health and social care team, the administrators, and on the organization of services and to identify associated ethical and legal issues. We will conduct six mixed methods longitudinal case studies. Qualitative data will be used to study the integration of the PAs into clinical oncology teams and to identify the factors that are facilitators and inhibitors of the process, the associated ethical and legal issues, and the challenges that the PAs experience. Quantitative data will be used to assess effects on patients, PAs and team members, if any, of the PA intervention. The results will be used to support oncology programs in the integration of PAs into their healthcare teams and to design a future randomized pragmatic trial to evaluate the impact of PAs as full-fledged members of clinical oncology teams on cancer patients’ experience of emotional support throughout their care trajectory. This study will be the first to integrate PAs as full-fledged members of the clinical oncology team and to assess possible clinical and organizational level effects. Given the unique role of PAs, this study will complement the body of research on peer support and patient navigation. An additional innovative aspect of this study will be consideration of the ethical and legal issues at stake and how to address them in the health care organizations.

INTRODUCTION Lung microbiota plays a central role in health and disease development. Recently, recurrent viral infections in preschool age children were associated with lung microbiota carriage of Streptococcus pneumonia (SP). In addition, immune development and inflammatory responses have sexual dimorphism, but it is still controversial whether there is sex-specific microbiota composition. OBJECTVE Given that immune development occurs early in life, the objective of this project is to evaluate the consequences of early life lung microbiota alteration by SP exposure on inflammatory response later in life. METHODS Neonatal Brown Norway rats were exposed to SP via intranasal administration (sub inflammatory dose). Lung microbiota was assessed until weaning age (21 days old), using v3–v4 16S rRNA sequencing. At 8 weeks old (post-puberty), rats were infected with LPS and their inflammatory responses were assessed 24h post using bronchoalveolar lavage (BAL). RESULTS Early life exposure to SP reduced lung microbiota diversity and impacted its constitution until weaning age. Although control females exposed to LPS had higher inflammatory response than control males, early life exposure to SP significantly reduced BAL inflammatory cell recruitment in females but not in SP-males. Opposingly, in SP-males, the inflammatory response shifted from a neutrophilic response to a more eosinophilic inflammation. CONCLUSION Early life exposure to SP modulated both lung microbiota and immune responses later in life. The sex-specific immune modulation by lung microbiota composition in early life could have large implication for many inflammatory diseases presenting sexual bias. Supported by grants from Quebec Health Research Network and Fondation IUCPQ (Quebec, Canada).

Impacts of stress on the immune system vary depending on the nature, intensity, and time during which stress is experienced (eg, acute stress is pro-inflammatory vs chronic stress is anti-inflammatory). However, there is limited knowledge on the long-term impact of early life stress on immune responses. Given that immune programming occurs early in life and that immunity and stress both involve sexual dimorphisms, our hypothesis is that neonatal maternal separation (NMS) induces sex-specific immune alterations. Objective Our objective is to evaluate the influence of early life stress on immune response in adult and its dimorphism related to biological sex. Methods We used a well-established rat model of early life stress, NMS, in which we observed sex-specific modulations of the myeloid compartment. Thus, we evaluated the impact of NMS on macrophage activation using LPS stimulation of bone-marrow derived macrophages (BMDM) in vitro. Expression of activation (MHCII, CD40, CD86 and CD80) and maturation markers (SIRPα, CD11b, CD200 and CD200R) were analyzed by flow cytometry. TNF levels were measured by ELISA. Results LPS stimulation of female NMS BMDM had higher expression of activation markers compared to controls. Inflammatory cytokine levels, TNF, increased after LPS stimulation and further increased in female NMS, whereas male NMS level was lower than control male. Futhermore, LPS stimulation lowered CD200 receptor (CD200R) to a greater extent in male NMS than in female NMS. Conclusion These results suggest that NMS accentuates the pro-inflammatory response in adult female (but not in male) and will provide a strong base for improving sex-specific interventions in the context of diseases involving stress and the immune system. Supported by grants from CIHR, QRHN and CRIUCPQ

Background: Many tools have been developed for the standardized collection of cancer family history (fh). However, it remains unclear which tools have the potential to help health professionals overcome traditional barriers to collecting such histories. In this review, we describe the characteristics, validation process, and performance of existing tools and appraise the extent to which those tools can support health professionals in identifying and managing at-risk individuals. Methods: Studies were identified through searches of the medline, embase, and Cochrane central databases from October 2015 to September 2016. Articles were included if they described a cancer fh collection tool, its use, and its validation process. Results: Based on seventy-nine articles published between February 1978 and September 2016, 62 tools were identified. Most of the tools were paper-based and designed to be self-administered by lay individuals. One quarter of the tools could automatically produce pedigrees, provide cancer-risk assessment, and deliver evidence-based recommendations. One third of the tools were validated against a standard reference for collected fh quality and cancer-risk assessment. Only 3 tools were integrated into an electronic health records system. Conclusions: In the present review, we found no tool with characteristics that might make it an efficient clinical support for health care providers in cancer-risk identification and management. Adequately validated tools that are connected to electronic health records are needed to encourage the systematic identification of individuals at increased risk of cancer.

Prophylactic mastectomy is an effective strategy to reduce the risk of breast cancer for women carrying a BRCA1/2 germline mutation. This decision is complex and may raise various concerns. Women considering this surgery have reported their desire to discuss the implications of this procedure with women who have undergone prophylactic mastectomy. We conducted a qualitative study to describe the topics covered during a telephone-based peer support intervention between women considering prophylactic mastectomy (recipients) and women who had undergone this surgery (peers), and to explore their perspectives regarding the intervention. Thirteen dyads were formed and data from participant logbooks and evaluation questionnaires were analyzed using a thematic content analysis. Three main dimensions emerged: physical, psychological, and social. The most frequent topics discussed were: surgery (92%), recovery (77%), pain and physical comfort (69%), impacts on intimacy and sexuality (54%), cancer-related anxiety (54%), experience related to loss of breasts (46%). Peers and recipients report that sharing experiences and thoughts about prophylactic mastectomy and the sense of mutual support within the dyad contributed significantly to their satisfaction. Special attention should be paid to the similarities between personal and medical profiles in order to create harmonious matches.

Although most parents carrying a BRCA1/2 genetic mutation share their test result with their underage children, they report needing support to decide if, when, and how to share risk information and what reactions to expect from their children. We developed a tool to guide parents carrying a BRCA1/2 mutation share their genetic result with underage children. Here, we report on the development of this tool using a qualitative methodology. A tool prototype was developed based on the International Patient Decision Aids Standards Collaboration framework. Content was assessed using feedback from focus groups, individual interviews, and a 12-item reading grid. Participants were nine BRCA1/2 mutation carriers with underage children and three cancer genetics health professionals. Thematic content analysis was conducted on interview transcripts. The tool was developed using an iterative process until saturation of data. An independent advisory committee was involved in all steps of tool development until reaching consensus. Rather than a decision aid per se (to communicate or not), the parents wanted a more comprehensive tool to help them communicate genetic test result to their children. To meet parents' needs, a communication guidance booklet was developed, setting out the pros and cons of communication, steps to prepare sharing the test result, communication tips, and parents' testimonies. This communication tool responds to a significant unmet need faced by parents carrying a genetic predisposition to cancer. Future studies are needed to assess how the information from the parent's genetic test result impacts the child's development, health behaviors, and relationship with the parent.

54 Background: Since 2017, in Quebec (Canada), a research project is focusing on the feasibility, the processes, and the contribution of integrating patients who have already had cancer experiences (named patient advisors (PA)) in the oncology clinical team. In fact, the trained PA meet patients in health care settings in addition to the other health professionals in order to improve health care and partnership between professionals and patients. This presentation communicates the PA’s perception of their contribution and the factors influencing implementation of these programs in 4 establishments. Methods: Between April and May 2020, semi-structured virtual interviews lasting about 60 minutes were conducted on 12 patient advisors involved since 2017 in the elaboration of these support programs. The interviews were recorded and transcribed completely. The data analysis was done with content analysis using the QDA Miner 5.0 software, applying the qualitative analysis quality standards. Results: First of all, the 12 PAs have reported that the accompaniment of 67 patients have allowed them to share their experiential knowledge not only related to living with the illness but also about healthcare organization and the anticipation of treatments. They also highlighted their capacity to share situations that can be improved by healthcare professionals (example: wait times for exams; patients’ difficulty in understanding their illness, etc). However, they also highlighted 4 factors which limit the implementation: 1) organizational (the unclear and changing nature of the breast cancer consultation schedule, difficulty of access to consultation rooms and unsuitable schedules for the PA’s reality.; 2) leadership (lack of clinicians promoting the intervention; managers’ low involvement; lack of clarity of roles); 3) human (work overload and employee turnover); 4) PA’s status (lack of compensation and of recognition). Also, to optimize their integration, the PA’s suggest to work on a lasting bond of trust with the professionals, the creation of a status recognized by health establishments, the recognition of their role by the clinical team, to give them access to physical spaces, and an openness of the teams to their complementary knowledge. Conclusions: These first results suggest the importance during the implementation of such programs of working proactively with the PAs and the professionals on organization, leadership, resources, and status factors to allow the people dealing with cancer to benefit from experiential knowledge of other patients within their clinical team.

57 Background: Since 2018, three establishments in Quebec have introduced patient advisors (PA) in their healthcare team in order to improve cancer patients’ experience. These PA, who have had a cancer experience, meet patients undergoing radiotherapy treatments or in oncogenetics for breast cancer on the healthcare site. They conduct consultations to complete the offer of services by bringing emotional, informational, and educational support. Methods: A longitudinal study of multiple cases was completed from January to June 2020. After each accompaniment, the PA filled out a logbook to document the main themes covered and the accompanied patient fill out a survey to evaluate their experience one week after the intervention. A qualitative analysis of the logbook content and descriptive statistics were conducted. The REDCAP platform was used for monitoring the process of data collection and to administer the surveys online. Results: In total, 67 patients were accompanied by 4 PA. 71 logbooks were completed by the PA. The logbooks show that 70.3% of accompaniments took place right before radiotherapy and 63.6% following the results of the genetic test in oncogenetics. 50% of meetings took place in person in the establishment (in a space dedicated to the PA or not) and 45.8% were by phone. The meetings lasted approximately 37 minutes (min: 15 minutes and max: 90 minutes). The majority only met once (93.1 %). The most common themes discussed are: the role of the PA (94.1%), returning to day life (57.6%) and dealing with stress and anxiety (52.2%). 96% of PA felt that they did not encounter any difficulties during the accompaniment. For the accompanied women, the partnership was most beneficial for their experience with the illness (sharing experiences of side-effects, on the impact of the illness on every day life, with their social circle). 79% of patients found that the accompaniment met their needs. 90% of patients estimate that these meetings are complimentary to the healthcare professionals’ interventions. Finally, 89.5% of accompanied patients think that it would be very important to develop these types of meetings on a larger scale. Concerning the adaptation of spaces for the meetings, 26.3% are very satisfied and 26.3% are rather satisfied (probably an area for improvement). Conclusions: Overall, the partnerships seem to answer the needs of the accompanied patients and the PA can share their experience inside the clinical team.

This review describes the characteristics of available educational tools used for BRCA1/2 genetic testing. To identify the tools, we conducted a systematic search in electronic databases, and contacted over 1000 cancer genetics professionals. This review is based on 68 tools from the USA, Canada, Australia, the UK, France and Ireland. The tools vary in format and scope depending on the genetic testing phase for which they are intended. We found that a wide diversity of educational materials are available and used for BRCA1/2 genetic testing around the world. However, a substantial number of tools fail to address important aspects of genetic testing.

ObjectivesTo identify common and specific individual factors that favour or impede women’s interest in and willingness-to-pay (WTP) for breast cancer susceptibility testing (BCST) and to identify the most impactful factors on both outcome measures.Design and methodsThis study used a self-administered cross-sectional Web-based questionnaire that included hypothetical scenarios about the availability of a new genetic test for breast cancer.ParticipantsFrench-speaking women of the general population of Québec (Canada), aged between 35 and 69 years, were identified from a Web-based panel (2410 met the selection criteria, 1160 were reached and 1031 completed the survey).MeasuresThe outcomes are the level of interest in and the range of WTP for BCST. Three categories of individual factors identified in the literature were used as potential explanatory factors, that is, demographic, clinical and psychosocial.ResultsDescriptive statistics indicated that the vast majority of sampled women are interested in BCST (90%). Among those, more than half of them are willing-to-pay for such a test (57%). The regression models pointed out several factors associated with both outcomes (eg, age, income, family history, locus of control-powerful others) and marginal effects were used to highlight the most impactful factors for each outcome.ConclusionThe results of this study provide a proxy of the readiness of women of the general population to use and to pay for BCST. They also offer insights for developing inclusive and specific strategies to foster informed decision-making and guide the services offered by health organisations corresponding to women’s preferences and needs.

Resume La mastectomie prophylactique est une mesure efficace, mais controversee, pour reduire le risque de cancer du sein chez les femmes porteuses d’une mutation BRCA1/2. Compte tenu du caractere irreversible et mutilant de cette intervention et de ses consequences potentielles sur la qualite de vie, une prise en charge clinique multidisciplinaire est recommandee lorsqu’elle est envisagee ou pratiquee. Objectif Cette etude a pour but de rendre compte de l’experience de patientes ayant beneficie d’une telle prise en charge lors de leur intervention. Methodes Les propos de 15 patientes ont ete recueillis dans le cadre d’une etude qualitative retrospective menee aupres de femmes ayant subi une mastectomie prophylactique entre 2002 et 2006 au centre des maladies du sein Deschenes-Fabia (CMSDF) a Quebec. Les donnees des entretiens semi-diriges ont ete soumises a une analyse thematique de contenu. Resultats Le dispositif de prise en charge alors en vigueur au CMSDF a ete apprecie et juge necessaire par l’ensemble des participantes. Des suggestions d’amelioration relativement a l’information et a certains aspects du suivi postoperatoire ont ete formulees et prises en compte depuis. Conclusion Les resultats de l’etude confirment l’utilite et l’acceptabilite d’une prise en charge clinique multidisciplinaire en matiere de mastectomie prophylactique.

We assessed whether certain life events contributed to the communication about cancer risk within families who have undergone BRCA1/2 testing. We also explored what type of resources participants would have valued to help in supporting family communication about genetic information. Two hundred and forty-six individuals (218 women, 28 men) who received a BRCA1/2 genetic test result 3 to 10 years earlier (mean of 6.4 years) participated in a telephone interview. Participants were asked about the occurrence of a number of life events (cancer diagnosis, death, uptake of prophylactic surgery, and providing care to a family member with cancer) in their family since their BRCA1/2 test result disclosure and, for each occurrence, whether it fostered family communication about cancer risk. A total of 182 participants (74 %) reported that they or one of their relatives received a cancer diagnosis, 176 (72 %) reported that someone died in their family, and 73 (30 %) stated that they or one of their relatives undertook a prophylactic surgery. During this period, 109 participants (44 %) also provided care for a family member who had cancer. Among participants who reported these life events, family communication was fostered by these events in proportions varying from 50 % (death) to 69 % (cancer diagnosis). Our results indicate that life events may contribute to family communication about cancer risk. Further research is needed to determine whether these events provide a "window of opportunity" to reach family members, address their needs and concerns about cancer, update family cancer history, and introduce genetic counseling and risk assessment.

Adherence to mammographic screening recommendations following BRCA1/2 testing is generally assessed through self-reports. However, the validity of self-reported mammography by women who had undergone BRCA1/2 genetic testing is still unknown. This study aimed to assess the validity of self-reported mammography use in the past 12 months among women who had undergone BRCA1/2 testing. Using a self-administered questionnaire, 307 women who never had cancer were asked 1 year following BRCA1/2 test result disclosure whether they undergone a mammography in the past 12 months. For each participant, this information was compared to that provided by the Quebec Health Insurance Board administrative data set for mammography claims during the same period, here considered as the gold standard. Sensitivity (Sn), specificity (Sp), predictive values, and Cohen's kappa (κ) were calculated. The robustness of these estimates was assessed using sensitivity analysis in which we varied the administrative data time lapses up to 18 months. Overall, the agreement between self-reports and administrative data was 88% (κ = 0.74). Among the 180 participants who had a mammography according to the administrative data, 172 adequately reported this information (Sn = 96%). Sp was moderate (76%), meaning that 24% of those who did not have a mammography reported one. Extending the time lapses to 18 months increased the Sp substantially (Sp = 90%). Self-report overestimates the use of mammography, mainly because women tend to minimize the elapsed time since their last mammography. Self-reports should be used cautiously to assess adherence to mammographic screening following BRCA1/2 testing.

Objective: This study evaluated the influence of the family cluster effect on behavioral and psychological variables among individuals undergoing BRCA1/2 genetic testing for cancer susceptibility. Methods: French-Canadian women (n = 552) and men (n = 104) from 140 different families undergoing BRCA1/2 testing between years 1998 and 2004 completed a self-administered questionnaire on a wide range of behavioral and psychological variables. The impact of the family cluster effect on 29 variables was assessed using the intraclass correlation coefficient (ICC) as computed from multilevel random-effect models. Results: ICC values were statistically significant for 22 of the 29 variables. Overall, the mean ICC value was 0.10. The ICC values for knowledge about hereditary breast and ovarian cancer and frequency of alcohol consumption were 0.25. The ICC value for the Impact of Event Scale, which is a commonly used measure of cancer-specific distress, was 0.14. Conclusions: Our results suggest that the family cluster effect influences the majority of behavioral and psychosocial variables. When studying psychosocial aspects of genetic testing for cancer susceptibility, the family cluster effect should be routinely accounted for when determining sample size and statistical methods. Copyright © 2011 John Wiley & Sons, Ltd.

The study objective was to compare breast cancer screening practices, lifestyle behaviors and psychological distress among 640 women initiating BRCA1/2 testing to those among 9,498 similarly-aged women from the general population. Health behaviors and psychological distress were reported in a self-administered questionnaire at pre-test genetic counseling. Regression analyses indicate that high-risk women were more frequently performing breast cancer screening and, in the case of those previously diagnosed with cancer, were more likely to be non-smokers and physically active than women from general population. However, women initiating BRCA1/2 testing were significantly more distressed than controls. Globally, high-risk women seemed to be well informed about recommendations for women who are at high risk and to have access to screening adapted to their risk level. Given their significant psychological distress, providing minimal psychosocial support to all women undergoing BRCA1/2 testing at pre-test genetic counseling is relevant.

Hors-série; International audience; La critique d’art actuelle fait l’objet de nombreuses mutations nées des transformations subies par ses objets, mais aussi par ses moyens de diffusion à l’ère numérique. Afin d’appréhender ces mutations et d’en mesurer les enjeux, il s’agira d’observer la critique d’art lorsque l’art olfactif la confronte à sa propre subjectivité, à ses habitus perceptuels ainsi qu’à ses frontières avec la science et l’industrie.

Prophylactic mastectomy is an effective, although controversial strategy to reduce the risk of breast cancer in women carrying a BRCA1/2 mutation. A multidisciplinary pre- and post-operative clinical management is recommended for women who consider or undergo this surgery, because of its radical and irreversible nature as well as its possible impact on quality of life.This study aims to report on the experience of patients having undergone prophylactic mastectomy within a medical setting offering such a clinical management.A retrospective qualitative study was conducted with patients having had a prophylactic mastectomy between 2002 and 2006 at the centre des maladies du sein Deschênes-Fabia (CMSDF) in Quebec City. Fifteen women were interviewed and the narratives were analyzed using thematic content analysis method.The participants generally appreciated the multidisciplinary approach that was used at the CMSDF and believed it was necessary. Improvements were suggested regarding information and post-surgical medical follow-up, some of which are now implemented.The study results confirm the utility and the acceptability of a multidisciplinary clinical follow-up for women who undergo prophylactic mastectomy.

Identifying a strategy that would optimize both the communication and understanding of the individual breast cancer risk remains a considerable challenge. This study explored the preferences of women with a family history of breast cancer about six presentation formats of individual breast cancer risk, as calculated from a risk prediction model. Thirty-four unaffected women attending genetic counseling because of a family history of breast cancer participated in six focus groups conducted in Quebec City (2), Montreal (2) and Toronto (2), Canada. Six risk formats were presented for a fictitious case involving a 35-year-old woman (1—numerical: cumulative risk probabilities by age until 80 years; 2—risk curves: probabilities expressed in a risk curve that also provided a risk curve for a woman with no family history in first-degree relatives; 3—relative risk of breast cancer by age 80 years; 4 and 5—absolute risk of breast cancer and absolute chance of not developing breast cancer in the next 20 years; 6—qualitative: color-coded figure). Participants were asked to indicate their appreciation of each format. A group discussion followed during which participants commented on each format. The most and least appreciated formats were risk curves and relative risk, respectively. Overall, participants advocated the use of formats that combine quantitative, qualitative and visual features. Using a combination of approaches to communicate individual breast cancer risks could be associated with higher satisfaction of counselees. Given the increasing use of risk prediction models, it may be relevant to consider the preferences of both the counselee and the professional.

While the importance of intrafamilial communication of hereditary cancer risk has been acknowledged, the factors that promote and act as barriers to patients disclosing their information to their families are complex and emerging. This raises the question: How are patients guided in practice to contemplate intrafamilial communication? Focusing on breast cancer, we conducted an exploratory study examining current resources supporting patients and health-care professionals, and isolated the messages surrounding intrafamilial communication of cancer risk. We find the duty for health-care professionals to counsel patients regarding intrafamilial communication is acknowledged to varying degrees by multiple actors in the cancer care delivery landscape, including health-care professional associations, health service organizations, and patient groups. A range of medical, psychosocial, and other factors underlying intrafamilial communication are acknowledged in messages to patients. Patients, however, are often referred to a single group of health-care professionals to discuss their diverse and complex needs. At the same time, messages aimed at patients appear to place the emphasis on barriers that could exist for patients contemplating intrafamilial communication, while highlighting the benefits families derive from such communication. Taken together, this points to a lack of coherence within materials directed to patients and suggests the need to do coordinated research among stakeholders to address two related issues: (1) determining who are the actors best positioned to send messages surrounding intrafamilial communication to patients and (2) addressing the content of messages conveyed in patient materials.

This study examines the process of communicating BRCA1/2 genetic test results to family members, and the factors influencing disclosure. Twenty-nine semi-structured telephone interviews with BRCA1/2 tested individuals, 4 to 9 years post-notification, were conducted. Our results suggest that individual, familial, relational and socio-medical factors influence the decision to disclose/not disclose genetic test results to family members. These factors are at play in all three communication phases: the Decision-making phase, in which the individual ponders various factors before deciding to disclose test results to family members; the Disclosure phase, in which communication per se takes place; and the Reaction phase, which shapes the participant’s subsequent disclosure/non-disclosure decisions. We propose a guiding framework to assist in identifying and evaluating significant factors that might shape the course and outcome of the transmission of genetic information to family members.

This study evaluated the influence of the family cluster effect on behavioral and psychological variables among individuals undergoing BRCA1/2 genetic testing for cancer susceptibility.French-Canadian women (n = 552) and men (n = 104) from 140 different families undergoing BRCA1/2 testing between years 1998 and 2004 completed a self-administered questionnaire on a wide range of behavioral and psychological variables. The impact of the family cluster effect on 29 variables was assessed using the intraclass correlation coefficient (ICC) as computed from multilevel random-effect models.ICC values were statistically significant for 22 of the 29 variables. Overall, the mean ICC value was 0.10. The ICC values for knowledge about hereditary breast and ovarian cancer and frequency of alcohol consumption were 0.25. The ICC value for the Impact of Event Scale, which is a commonly used measure of cancer-specific distress, was 0.14.Our results suggest that the family cluster effect influences the majority of behavioral and psychosocial variables. When studying psychosocial aspects of genetic testing for cancer susceptibility, the family cluster effect should be routinely accounted for when determining sample size and statistical methods.

Little is known about the long-term impact of BRCA1/2 testing on the relationships between family members. We assessed the incidence of positive and negative family relationship effects of BRCA1/2 testing in the 3 years after result disclosure and identified predictors of these effects.A total of 485 women and 67 men who had undergone BRCA1/2 testing were asked 3 years later whether having been tested had improved and/or disrupted relationships with their relatives. The associations with sociodemographic, medical, and psychosocial characteristics were assessed.Globally, 85.1% did not report any positive or negative effects of genetic testing on family relationships. Positive and negative effects were reported by 13.2% and 3.7% of participants, respectively. Reporting positive relationship effects was associated with older age, intolerance for uncertainty, cancer-specific distress, and more social support. Low education, positive attitude toward prophylactic mastectomy, and low social support increased the likelihood of negative effects.Our findings do not support the belief that family relationships are frequently disrupted by BRCA1/2 testing. Understanding that most family relationships are unchanged long term by genetic testing may help genetic service providers encourage those considering testing to overcome hesitancy related to potential difficulties of communicating results to relatives.