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Clinical Quality Registries (CQRs) were initiated in order to compare clinical outcomes between hospitals or regions within a country. To get an overview of these CQRs worldwide the aim of this study was to identify these CQRs for gynecological oncology and to summarize their characteristics, processes and QI's and to establish whether it is feasible to make an international comparison in the future. To identify CQRs in gynecological oncology a literature search in Pubmed was performed. All papers describing the use of a CQR were included. Administrative, epidemiological and cancer registries were excluded as these registries do not primarily serve to measure quality of care through QI's. The taskforce or contact person of the included CQR were asked to participate and share information on registered items, processes and indicators. Five nations agreed to collaborate: Australia, Denmark, Italy, the Netherlands and Sweden. Denmark, Netherlands and Sweden established a nationwide registry, collecting data on multiple tumor types, and various QI's. Australia and Italy included patients with ovarian cancer only. All nations had a different process to report feedback results to participating hospitals. CQRs serve the same purpose to improve quality of care but vary on different aspects. Although similarities are observed in the topics measured by the QI's, an international comparison was not feasible as numerators or denominators differ between registries. In order to compare on an international level it would be useful to harmonize these registries and to set an international standard to measure the quality of care with similar indicators. [ABSTRACT FROM AUTHOR]

One of the core principles of providing care in general practice is giving more to those who need it most. We investigate some of the complexities of this ambition in the context of cancer care for patients defined as socially disadvantaged by their general practitioner (GP). We do this by exploring how care is sought, how it is offered, and what expectations patients and GPs carry with them when receiving and providing cancer care in the Danish welfare state. We carried out semi-structured interviews with eight GPs and seven socially disadvantaged cancer patients living with different types and stages of cancer. The interviews focused on needs and challenges in cancer follow-up in general practice and were thematically coded. Drawing on theoretical concepts of morality and Nordic individualism, we point to how one of the main challenges in cancer care and follow-up is to figure out how the doctor-patient relationship should be established, practiced, and maintained. Both GPs and patients stressed the importance of the relationship, but how it should be practiced amidst social norms about being a patient, a citizen and how care-seeking should unfold seems less clear. In conclusion we argue that giving more to those who need it the most is a difficult and ill-defined task that is shaped by the cultural, social, and political expectations of both GPs and patients. [ABSTRACT FROM AUTHOR]

Background: This paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up (The Empowerment study 2015–2019). User-Involvement in health care research is a relatively new practice in Denmark and the Empowerment project was one of the first to systematically involve patients and carers in its research design, conduct and reporting. The paper has two aims: first, it provides a detailed account of the process of involving co-researchers in the Empowerment project and second, it presents findings from a workshop held with academic researchers and co-researchers on the project to discuss their experiences and recommendations for user-involvement in the Danish context. Methods: The Empowerment project adopted a consultative and collaborative approach to user involvement and co-researchers were involved from the early stages and all through the project. Users gave feedback on the proposal, helped develop project documents and research tools, acted as peer interviewers in qualitative interviews, participated in data analysis and development of questionnaires, and co-authored journal articles. The workshop held with the academic researchers and co-researchers consisted of two parallel focus groups and a joint group discussion, following an interactive and informal format to facilitate discussion and exchange of ideas. Findings: The focus group resulted in eleven recommendations for the further development of user-involvement in Denmark. Key issues encountered were the general lack of guidelines on user-involvement in the Danish context and the need for more organisational support. Particular issues, such as payment, recruitment and training, need to be carefully considered within individual projects and within the national context in which projects are carried out. Conclusion: The paper adds to the current very limited knowledge base on user-involvement in the Danish context and provides a set of early recommendations for the further development of the practice in Danish Health Research. User-involvement needs to be developed with consideration to the local context, but common challenges also emphasise the usefulness of cross-country comparisons and knowledge exchange. [ABSTRACT FROM AUTHOR]

Background The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group is currently developing computerized adaptive testing measures for the Quality of Life Questionnaire Core-30 (QLQ-C30) scales. The work presented here describes the development of an EORTC item bank for emotional functioning (EF), which is one of the core domains of the QLQ-C30. Methods According to the EORTC guidelines on module development, the development of the EF item bank comprised four phases, of which the phases I-III are reported in the present paper. Phase I involved defining the theoretical framework for the EF item bank and a literature search. Phase II included pre-defined item selection steps and a multi-stage expert review process. In phase III, feedback from cancer patients from different countries was obtained. Results On the basis of literature search in phase I, a list of 1750 items was generated. These were reviewed and further developed in phase II with a focus on relevance, redundancy, clarity, and difficulty. The development and selection steps led to a preliminary list of 41 items. In phase III, patient interviews ( N = 41; Austria, Denmark, Italy, and the UK) were conducted with the preliminary item list, resulting in some minor changes to item wording. The final list comprised 38 items. Discussion The phases I-III of the developmental process have resulted in an EF item list that was well accepted by patients in several countries. The items will be subjected to larger-scale field testing in order to establish their psychometric characteristics and their fit to an item response theory model. © 2013 The Authors. Psycho-Oncology published by John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

This paper explores the lived experiences of older surgical patients' (aged 74 years and older) experienced challenges during a brief admission to hospital. Age, gender, polypharmacy, and the severity of illness are also factors known to affect the hospitalization process. For an ethnographic study using participant observation and interviews, surgical cancer patients (n=9, aged 74 years and older) were recruited during admission to a Danish teaching hospital. Using ethnographic strategies of participant observation and interviews, each patient was followed through the course of 1 day during their stay at the hospital. Interviews were carried out with all patients during this time. Three areas of concern were identified as prominent in the patients' experiences and challenges during their short hospital stay: teeth and oral cavity, eating in a hospital setting, and medication during hospitalization. Short-term hospitalization requires focused collaboration between staff and patient concerning individual challenges from their teeth and oral cavity as support of nutritional needs during surgical treatment for cancer. [ABSTRACT FROM AUTHOR]

TIMMERMANN C., UHRENFELDT L. & BIRKELUND R. (2013) European Journal of Cancer Care 22, 117-124 Cancer patients and positive sensory impressions in the hospital environment - a qualitative interview study This study explores how cancer patients experience the meaning of positive sensory impressions in the hospital environment such as architecture, decoration and the interior. Data were obtained at a general hospital in Denmark by interviewing six cancer patients at two different wards. The analysis process was guided by the hermeneutical-phenomenological theory of interpretation as presented by the French philosopher Paul Ricoeur. Two main themes were identified: to preserve identity and positive thoughts and feelings. The participants experienced that positive sensory impressions in the hospital environment had a significant impact on their mood, generating positive thoughts and feelings. A view to nature also helped them to forget their negative thoughts for a while. The possibility of having a view helped some cancer patients to connect with good memories and personal life stories that enabled them to recall some of their feelings of identity. This paper adds knowledge about how cancer patients experience sensory impressions in the hospital environment. An environment that provides homeliness and offers a view to nature seems to help some patients to preserve their identity. Furthermore, positive sensory impressions and the opportunity for recreation through environmental facilities strengthen the patient's positive thoughts and feelings. [ABSTRACT FROM AUTHOR]

Aim: The aims of this paper were to validate four items assessing how patients' needs regarding support to and from their relatives are met and to investigate patients' evaluation of this support. Method: Items were validated by patient-observer agreement and cognitive interviews. Adequacy of support was assessed in a cross-sectional study of 1,490 Danish cancer patients; 147 of these also answered an open-ended question. Results: All items performed well in the validation. Only 4 % reported lack of support from their relatives, whereas 9 and 11 % had lacked support from the health care professionals regarding how to tell the relatives about the disease and regarding the relatives in general, respectively. Although the patients' expectations are not unequivocal, a large proportion (35 %) reported that the health care professionals had shown little interest in how the relatives were doing. This was most pronounced for female patients and patients sampled in urban areas. Compared to older patients, younger patients lacked more support with respect to the relatives in general and regarding how to tell them about the disease. Divorced patients were less satisfied than married patients on all measures. Conclusion: While most patients felt well-supported by their relatives, the oldest, the divorced, and those without children may be a vulnerable group. Many patients reported that the health care staff showed insufficient interest in the well-being of the relatives. Thus, it may be beneficial for both the patient and the relatives if health care professionals acknowledge and support the relatives in fulfilling their important role as caregiver and companion. [ABSTRACT FROM AUTHOR]

Highlights • Electronic PRO administration was feasible in a national lung cancer population. • A decentralised model for delivery of PROs might have decreased response rates. • Lung cancer PRO responders had significantly better health than non-responders. • Patients with a partner and a high socioeconomic position were better responders. • Response rates were higher for patients treated with surgery than with oncology. Abstract Objectives Our objectives were to examine the feasibility of a nationwide collection of patient-reported outcomes (PROs) in a lung cancer population as well as in various sub-populations, and to describe the characteristics of responders compared to non-responders. Materials and methods All patients diagnosed with lung cancer in Denmark are registered in the Danish Lung Cancer Registry (DLCR). The 7,295 patients registered in DLCR from 1 October 2013 until 30 September 2015 who had received treatment were eligible. Using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-LC13 questionnaires, we employed two different methods of delivery, resulting in two different project parts. In project part 1, the baseline questionnaire was handed out at the hospital departments before treatment. The following questionnaires were sent out as paper versions three times within one year. In project part 2, all questionnaires were electronic versions delivered in association with planned hospital visits. Results Of the 7,295 lung cancer patients 4,229 (58%) completed at least one questionnaire, and 2,459 completed two or more. Only 562 baseline questionnaires were returned before treatment (7.7%), whereas 43.4%–57.4% of the potential responders completed the following questionnaires. The best response rates were achieved among patients treated with surgery and among patients who discussed their questionnaires with health care personnel. When comparing patient characteristics, responders had a significantly better health and a higher socioeconomic position than non-responders. Conclusion A decentralised model used for delivering the initial questionnaire to the patients was insufficient. It is our estimation that sending out electronic versions of the baseline questionnaires, as was done with the following questionnaires, would result in a significantly better patient coverage. Despite the severe morbidity and high mortality rate in lung cancer, reasonable response rates were achieved at follow-ups to this method, and PRO collection in this population was feasible. [ABSTRACT FROM AUTHOR]

Background. The increasing incidence of cancer combined with prolonged survival times seen throughout the western world increases the need for rehabilitation. Diagnosis and treatment for cancer may have substantial effects on the patients' physical, psychological, social and existential well-being. The aim of this paper is to describe the current situation in cancer rehabilitation in the Nordic countries, the Netherlands and Germany. Material and methods. Description of the current situation in cancer rehabilitation in the Nordic countries and literature review. Results. Rehabilitation as defined by multiple organizations covers a multidimensional view on chronic disease and its effect on the patient's life. The rehabilitation systems in Denmark, Finland, Sweden, Germany and the Netherlands differ depending on the differing social security and health-care systems, but rehabilitation provided is largely based on a similar, multidimensional and multidisciplinary understanding of cancer rehabilitation. Research on rehabilitation efforts in European countries indicates that there is substantial evidence with regard to single interventions which can be part of cancer rehabilitation. Discussion. In order to assure patients and families continuing quality of life, rehabilitation should be an integral and continuous part of all cancer care. [ABSTRACT FROM AUTHOR]

Background: Denmark has poorer 5-year survival rates than many other Western European countries, and cancer patients tend to have more advanced stages at diagnosis than those in other Scandinavian countries. Part of this may be due to delay in diagnosis. The aim of this paper is to give an overview of the initiatives currently underway to reduce delays.Methods: Description of Danish actions to reduce delay.Results: Results of surveys of patient-, doctor- and system-related delays are presented and so are the political initiatives to ensure that cancer is seen as an acute disease.Conclusion: In future, fast-track diagnosis and treatment will be provided for suspected cancers and access to general diagnostic investigations will be improved. A large national experiment with cancer seen as an acute disease is currently being implemented, and as yet the results are unknown. [ABSTRACT FROM AUTHOR]

Aims and Objectives: Drawing on ethnographic fieldwork exploring various head and neck cancer treatment pathways of patients with low socio‐economic status being treated with radiation therapy in Denmark, our aim was to explore how and why inequality in this treatment pathway might occur in the encounter between these patients and Danish healthcare. Background: In recent years, inequality in cancer treatment of patients with a low socio‐economic status has been a growing concern worldwide. The majority of patients with head and neck cancer have a relatively low socio‐economic status and are at risk of experiencing inequality in their cancer treatment. Design/Methods: Using a method proposed by Robert Yin, we performed a multiple case study of five treatment pathways of patients with a low socio‐economic status. The case studies consisted of participant observations and interviews with patients, relatives and health professionals. We applied Herbert Blumer's theory of symbolic interaction as a framework for our analysis. Results: We identified three concepts that all blocked joint action because patients and health professionals had different perceptions of what interaction required of them in terms of (1) Understanding information; (2) Assuming responsibility for managing practical tasks; and (3) Coordinating one's own treatment pathway. Conclusions: We identified how different situations challenged the patients' abilities to assume participation in their own treatment pathway. In their encounter with patients, healthcare professionals did not know which situational impediments to joint action patients were facing. Relevance to clinical practice: We argue that being aware of how challenges unfold in the interaction with patients with low socio‐economic status may serve as a starting point for changing practice to reduce inequality in the treatment of these patients. Reporting method: This study is reported using consolidated criteria for reporting Qualitative research (SRQR). We used the theory and method of Robert Yin of performing a multi‐case study and we applied Herbert Blumer's theory of Symbolic interactionism as a framework for understanding data. Patient or public contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

The article focuses on the diagnosis of locally recurrent head and neck squamous cell carcinoma (LRC) in Nordic Head and Neck Cancer (HNC) centers and the feasibility of using the Odense-Birmingham definition for uniform diagnosis. Topics discussed include the variation in clinical practice for classifying LRC versus second primary carcinoma (SPC) and the impact of introducing the Odense-Birmingham definition on diagnostic decisions among HNC specialists.

The Danish healthcare system must meet the need for easy and equal access to healthcare for every citizen. However, investigations have shown unfair prioritization of cancer patients and unfair prioritization of resources for expensive medicines over care. What is needed are principles for proper prioritization. This article investigates whether American ethicists Tom Beauchamp and James Childress's principle of justice may be helpful as a conceptual framework for reflections on prioritization of expensive biological therapies in the Danish healthcare system. We present an empirical study exploring the principles for prioritizing new expensive biological therapies. This study includes qualitative interviews with key Danish stakeholders experienced in antibody therapy and prioritizing resources for expensive medicines. Beauchamp and Childress's model only covers government-funded primary and acute healthcare. Based on the interviews, this study indicates that to be helpful in a Danish context this model should include equal access for citizens to government-funded primary and acute healthcare, costly medicine, and other scarce treatments. We conclude that slightly modified, Beauchamp and Childress's principle of justice might be useful as a conceptual framework for reflections on the prioritization of expensive biological therapies in the Danish healthcare system. [ABSTRACT FROM AUTHOR]

Background: Ovarian cancer (OC) is associated with a poor prognosis, which calls for earlier diagnosis. This study aimed to analyse the health care use in primary care and at hospitals among women with OC compared to non-cancerous women to identify a window of opportunity for earlier diagnosis. Methods: This nationwide register-based observational cohort study included all Danish women aged ≥ 40 years who were diagnosed with a first-time OC or borderline ovarian tumour in 2012–2018 and with no previous cancer diagnosis (n = 4,255). For each case, ten non-cancerous women were identified (n = 42,550). We estimated monthly incidence rate ratios using a negative binomial regression model to assess the use of health care services. We calculated risk ratios of having multiple contacts to general practice before a diagnosis using a binary regression model. Results: Cases had statistically significantly higher contact rates to general practice from five months prior to the diagnosis compared to references. From six to eight months prior to diagnosis, an increased use of transvaginal ultrasound and gynaecologist was seen for cases compared to references. Conclusions: Increased healthcare use was seen relatively closely to the time of diagnosis for women with OC. This indicates a narrow window of opportunity for a timelier diagnosis. Still, the use of specialised assessment increased at six to eight months before the diagnosis. When women present unspecific symptoms, awareness of potential ovarian malignancies and safety-netting by the general practitioner may be pivotal. Trial registration: Not relevant. [ABSTRACT FROM AUTHOR]

Background: Prehabilitation with exercise interventions during neoadjuvant chemotherapy (NACT) is effective in reducing physical and psychosocial chemotherapy-related adverse events in patients with cancer. In preclinical studies, data also support a growth inhibitory effect of aerobic exercise on the tumour microenvironment with possible improved chemotherapy delivery but evidence in human patients is limited. The aim of the study here described is to investigate if supervised exercise with high-intensity aerobic and resistance training during NACT can improve tumour reduction in patients with breast cancer. Methods: This parallel two-armed randomized controlled trial is planned to include 120 women aged ≥ 18 years with newly diagnosed breast cancer starting standard NACT at a university hospital in Denmark (a total of 90 participants needed according to the power calculation and allowing 25% (n = 30) dropout). The participants will be randomized to usual care or supervised exercise consisting of high-intensity interval training on a stationary exercise bike and machine-based progressive resistance training offered three times a week for 24 weeks during NACT, and screening-based advice to seek counselling in case of moderate-severe psychological distress (Neo-Train program). The primary outcome is tumour size change (maximum diameter of the largest lesion in millimetre) measured by magnetic resonance imaging prior to surgery. Secondary outcomes include clinical/pathological, physical and patient-reported measures such as relative dose intensity of NACT, hospital admissions, body composition, physical fitness, muscle strength, health-related quality of life, general anxiety, depression, and biological measures such as intratumoural vascularity, tumour infiltrating lymphocytes, circulating tumour DNA and blood chemistry. Outcomes will be measured at baseline (one week before to 1–2 weeks after starting NACT), during NACT (approximately week 7, 13 and 19), pre-surgery (approximately week 21–29), at surgery (approximately week 21–30) and 3 months post-surgery (approximately 33–42 weeks from baseline). Discussion: This study will provide novel and important data on the potential benefits of supervised aerobic and resistance exercise concomitant to NACT on tumour response and the tumour microenvironment in patients with breast cancer, with potential importance for survival and risk of recurrence. If effective, our study may help increase focus of exercise as an active part of the neoadjuvant treatment strategy. Trial registration: The trial was registered at ClinicalTrials.gov (NCT04623554) on November 10, 2020. [ABSTRACT FROM AUTHOR]

Convincing results from randomized controlled trials (RCTs) have led to increasing use of immune checkpoint inhibitors (ICI) as part of standard therapies in real-world (RW) scenarios. However, RW patients differ clinically from RCT populations and might have reduced long-term survival. Currently, only sparse data on 3-5-year survival rate for RW patients with advanced non-small cell lung cancer (NSCLC) treated with ICI exist. A multicenter study was performed including 729 patients with advanced NSCLC receiving monotherapy with ICI (retrospective data (n = 566) and prospective data (n = 163)). Detailed baseline clinical characteristics, programmed death-ligand 1 (PD-L1) tumor proportion score (TPS), and baseline haematological count were registered. Kaplan–Meier estimates and log-rank test were used for survival analyses, Cox regression for determination of prognostic factors. Median time of follow-up (FU) was 48.7 months (IQR 37.2–54.3). Median overall survival (OS) in first line treatment was 20.4 months (IQR 8.5–45.0) compared to 11.4 months (IQR 4.6–27.1) in ≥2nd line (HR 1.48, 95% CI 1.25–1.75). Estimated probability of OS was 30% at 3 years, 23% at 4 years, and 13% at 5 years in first line compared to 17, 13, and 11% in ≥2nd line, respectively. For those with performance status (PS) 2, the 2-year OS rate was 32% (95% CI 0.22–0.43) compared to 5% (95% CI 0.01–0.15) in patients with PD-L1 ≥ 50% versus <50%, respectively. Compared to RCTs, long-term OS and PFS rates are lower in real-world patients treated with ICI in first line but much improved compared to historic rates on chemotherapy. A promising flattening of both the OS and progression free survival curves illustrates that also a subset of real-world patients obtain long-term remission. Patients with PS 2 and PD-L1 ≥ 50% may obtain clinically meaningful 2-year PFS and OS rates. [ABSTRACT FROM AUTHOR]

The purpose was to investigate the treatment flow of patients with HER2-positive metastatic breast cancer (mBC), progression-free survival (PFS) and overall survival (OS) across treatment lines and adherence to guidelines (defined as trastuzumab, pertuzumab and chemotherapy first line, where 85% received vinorelbine as backbone and T-DM1 second line). Furthermore, we identified clinical markers to predict the risk of developing brain metastases. Patients with HER2-positive mBC, diagnosed between 01.01.2014–31.12.2019, registered in the database of the Danish Breast Cancer Group were included in this real-word study. Clinical follow-up was assessed until 01.10.2020 and complete follow-up for overall survival until 01.10.2021. Survival data were analyzed using the Kaplan-Meier method with guidelines adherence analyzed as a time-varying covariate, and the risk of CNS metastasis was estimated by the cumulative incidence function. 631 patients were included. 329 (52%) patients followed the guidelines. The median OS for all patients was 42.3 months (95% Cl, 38.2–48.4), and significantly higher for the patients who followed guidelines; NA (95% CI, 78.2–NA). The median PFS for all patients was 13.4 months (95% Cl, 12.1–14.8), 6.6 (95% Cl, 5.8–7.6) and 5.8 (95% Cl, 4.9–6.9) for first, second and third line of treatment, respectively. Patients with ER-negative mBC had a higher risk of developing brain metastases and patients with high tumor burden had a higher risk of developing brain metastases with an adjusted HR of 0.69 (95% CI, 0.49–0.98), p = 0.047 and 2.69 (95% CI, 1.45–5.00), p = 0.002, respectively. We found that only half of the patients with HER2-positive mBC, received first and second-line treatment according to national guidelines. Patients receiving treatment according to guidelines had a significantly higher median OS compared to patients who did not. We also found that patients with ER-negative disease or high tumor burden had a significantly higher risk of developing brain metastases. [ABSTRACT FROM AUTHOR]

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established. [ABSTRACT FROM AUTHOR]

Background: Knowledge about the process and the results of the implementation of clinical guidelines to improve palliative care is limited. A national project aimed at improving the quality of life of advanced cancer patients admitted to specialized palliative care services in Denmark by implementing clinical guidelines for the treatment of pain, dyspnea, constipation, and depression. Aim: To investigate the degree of clinical guideline implementation by evaluating the proportion of patients treated according to guidelines among those who qualified (i.e. reported severe symptom level) before and after the 44 palliative care services implemented the guidelines, and how often different types of interventions were provided. Design: This is a national register-based study. Setting/participants: Data from the improvement project were stored in and later obtained from the Danish Palliative Care Database. Adult patients with advanced cancer admitted to palliative care between September 2017 and June 2019 who answered the EORTC QLQ-C15-PAL questionnaire were included. Results: In total 11,330 patients answered the EORTC QLQ-C15-PAL. The proportions of services that implemented the four guidelines ranged 73%–93%. Among services that had implemented guidelines, the proportion of patients receiving interventions was roughly constant over time reaching between 54% and 86% (lowest for depression). Pain and constipation were frequently treated pharmacologically (66%–72%), whereas dyspnea and depression were frequently treated non-pharmacologically (61% each). Conclusions: Implementing clinical guidelines was more successful for physical symptoms than for depression. The project generated national data on interventions provided when guidelines were followed, which may be used to understand differences in care and outcomes. [ABSTRACT FROM AUTHOR]

Evidence regarding cancer risk after borderline ovarian tumors (BOTs) is limited. We conducted a nationwide cohort study examining the incidence of nonovarian cancers in women with serous or mucinous BOTs compared with the general female population with up to 41 years of follow‐up. Through the nationwide Pathology Registry, we identified nearly 5000 women with BOTs (2506 serous and 2493 mucinous) in Denmark, 1978 to 2018. We computed standardized incidence ratios (SIRs) with 95% confidence intervals (CIs) as relative risk estimates of specific nonovarian cancers. Compared with general female population rates, women with serous BOTs had increased rates of particularly malignant melanoma (SIR = 1.9; 95% CI: 1.3‐2.6), thyroid cancer (SIR = 3.0; 95% CI: 1.4‐5.4) and myeloid leukemia (SIR = 3.2; 95% CI: 1.5‐5.8), and women with mucinous BOTs had elevated rates of lung cancer (SIR = 1.7; 95% CI: 1.3‐2.1), pancreatic cancer (SIR = 1.9; 95% CI: 1.2‐2.9) and myeloid leukemia (SIR = 2.3; 95% CI: 0.9‐4.7). We found no convincing association with neither breast nor colorectal cancer in women with BOTs. This is the first large nationwide study showing that women with specific types of BOTs have increased risks of several nonovarian cancers, likely due to some shared risk factors or genetic characteristics. [ABSTRACT FROM AUTHOR]

Aim: Microscopically positive (R1) margins to lymph node metastases (R1LNM) are associated with poorer oncological outcomes in patients with Stage III colon cancer. R1LNM margins are more common in right‐sided cancer, although the cause of this phenomenon is unknown. We sought to investigate whether differences in surgical quality account for the higher rate of R1LNM in right‐sided cancers. Method: Patients treated for Stage III colon cancer from 1 January 2016 to 31 December 2018 were identified using the Danish national cancer registry. Indicators of surgical quality (mesocolic resection grade, median lymph node yield, and length to the distal colonic margin) were compared according to tumour site and margin status. Results: In all, 1765 patients were included, 981 (55.6%) with right‐sided cancers. R1LNM margins were more common in right‐sided cancers (14.4% vs. 6.1%, P < 0.001). All three surgical quality indicators were higher in patients with right‐sided cancers (mesocolic resection planes 81.7% vs. 69.5%, P < 0.001; median lymph node yield 28 vs. 25, P < 0.001; ≥5 cm to the distal colon margin 81.2% vs. 53.6%, P < 0.001). When stratified according to margin status, no differences in mesocolic resection planes or resectate length were noted, whilst median lymph node yield was higher in patients with R1LNM margins (29 vs. 27, P = 0.009). Conclusion: Surgical quality does not appear to be poorer in patients undergoing surgery for right‐sided versus left‐sided colon cancers in Denmark. Suboptimal surgery does not appear to be responsible for R1LNM margins, implying that these margins may be a surrogate for more aggressive biology. [ABSTRACT FROM AUTHOR]

Background: Follow-up programs for gynecological cancer patients are currently under revision. There is limited evidence that traditional follow-up and clinical examinations improve survival in an early-stage gynecological setting. Further, traditional follow-up programs fail to accommodate the patient's need for psychosocial and sexual supportive care and to actively involve patients and their relatives in the follow-up process. Individualized programs may replace traditional routine follow-up with fixed intervals and length. Focusing on alarm-symptoms and self-reporting may ensure detection of recurrence while allowing a continuous attention to the patient's well-being and return to daily life. In this study, a nurse-led, individualized, and need-based intervention with a specific focus on patient empowerment is tested against a standard physician-led model primarily focusing on the detection of recurrence. Methods: The study is designed as a clinical, randomized trial conducted in one of four national onco-gynecological centers in Denmark. Patients with early-stage cervical or endometrial cancer are eligible for inclusion. The intervention group undergoes individualized, nurse-led follow-up supporting patient empowerment including repeated use of electronic patient-reported outcome measures (ePROMs) before each contact as a dialogue support tool. The follow-up contacts are mainly conducted by telephone. All project nurses attended a special training program before project start and are all well-educated and dedicated onco-gynecological nurses. The control group receives standard, physician-led, follow-up without use of ePROMs or specific focus on empowerment. The effect of the intervention is evaluated by questionnaires completed by patients at baseline (3 months after surgery) and 12, 18, and 36 months after surgery. Outcomes include empowerment using the Skill and technique subscale of the HEI-Q questionnaire as the primary outcome while fear of cancer recurrence and health-related quality of life as well as the remaining subscales of the HEI-Q represent secondary outcomes. Data is collected by use of the REDCap technology, which also provides a customized visual support function for the dialogue tool. Discussion: This study will provide new information about follow-up in early-stage gynecological cancer settings and thereby contribute to improvement of future follow-up programs. Importantly, the study will provide knowledge about the impact of specific focus on patient empowerment in follow-up programs and, further, how to facilitate empowerment among patients. Trial registration: The study is registered at clinicaltrials.gov: ID no. NCT03838861. Registered on 6 February 2019. Protocol version 2, issue date 21 November 2022. [ABSTRACT FROM AUTHOR]

Simple Summary: We aimed to predict the individual one-year risk of lung cancer for all individuals aged 40 or above living in Denmark on 1 January 2017. For prediction, we used a wide range of data from nationwide Danish databases on health and sociodemographics from 2007–2016. We developed separate models for individuals with or without previous cancer diagnosis within ten years. Half of the data was used for the development of the prediction models, and the other half for evaluating the resulting models. In the population without and with previous cancer, 4274 (0.15%) or 482 (0.3%) individuals received a lung cancer diagnosis in 2017. For both populations, older age was a relevant predictor, and the most complex models, containing variables related to diagnoses, medication, general practitioner, and specialist contacts, as well as baseline sociodemographic characteristics, performed best. Our prediction models demonstrated a potential to support identifying individuals at risk of lung cancer. Lung cancer can be challenging to diagnose in the early stages, where treatment options are optimal. We aimed to develop 1-year prediction models for the individual risk of incident lung cancer for all individuals aged 40 or above living in Denmark on 1 January 2017. The study was conducted using population-based registers on health and sociodemographics from 2007–2016. We applied backward selection on all variables by logistic regression to develop a risk model for lung cancer and applied the models to the validation cohort, calculated receiver-operating characteristic curves, and estimated the corresponding areas under the curve (AUC). In the populations without and with previously confirmed cancer, 4274/2,826,249 (0.15%) and 482/172,513 (0.3%) individuals received a lung cancer diagnosis in 2017, respectively. For both populations, older age was a relevant predictor, and the most complex models, containing variables related to diagnoses, medication, general practitioner, and specialist contacts, as well as baseline sociodemographic characteristics, had the highest AUC. These models achieved a positive predictive value (PPV) of 0.0127 (0.006) and a negative predictive value (NPV) of 0.989 (0.997) with a 1% cut-off in the population without (with) previous cancer. This corresponds to 1.2% of the screened population experiencing a positive prediction, of which 1.3% would be incident with lung cancer. We have developed and tested a prediction model with a reasonable potential to support clinicians and healthcare planners in identifying patients at risk of lung cancer. [ABSTRACT FROM AUTHOR]

Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. Aim: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. Design: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. Setting/participants: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. Results: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." Conclusions: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families. [ABSTRACT FROM AUTHOR]

Background: While associations between socioeconomic position, that is, income and education and admittance to specialized palliative care (SPC) have been investigated previously, no prior national studies have examined admittance to all types of SPC, that is, hospital-based palliative care team/units and hospice. Aim: To investigate whether cancer patients' education and income were associated with admittance to SPC (hospital-based palliative care team/unit, hospice). Design: Data sources were several nationwide registers. The association between SPC and education and income, respectively, was investigated using logistic regression analyses. Setting/Participants: Patients dying from cancer in Denmark 2010–12 (n = 41,741). Results: In the study population, 45% had lower secondary school, and 6% had an academic education. Patients with an academic education were more often admitted to SPC than those having lower secondary school (odds ratio [OR] = 1.69; 95% confidence interval [CI]: 1.51–1.89). Patients in the highest income quartile (Q4) were more often admitted than those in the lowest income quartile (Q1) (OR = 1.46; 95% CI: 1.37–1.56). This association was stronger for hospice (OR = 1.67 (95% CI: 1.54–1.81)) than for admittance to hospital-based palliative care team/unit (OR = 1.23 (95% CI: 1.14–1.31)). Compared with patients who had lower secondary school and the lowest income, the OR of admittance to SPC among the most affluent academics was 1.96 (95% CI: 1.71–2.25). Conclusion: This nationwide study indicates that admittance to SPC was clearly associated with education and income. We believe that the associations indicate inequity. Initiatives to improve access for patients with low education or income should be established. [ABSTRACT FROM AUTHOR]

Background: The study is based on a national cluster randomized trial investigating the effect of electronic patient-reported outcomes (ePRO) on treatment outcomes in breast cancer patients receiving adjuvant chemotherapy. All 13 oncology departments (11 clusters) treating breast cancer patients in Denmark were randomized to use electronic patient-reported outcomes with real-time clinician feedback (ePRO arm) to track symptoms or usual care for eliciting symptoms using a short paper tracking list (usual care arm). The impact of ePRO on clinical outcomes were examined, which is reported elsewhere. The purpose of the present study was to examine patient-reported experience measure (PREM) regarding communication and handling of side effects/symptoms. Methods: For this sub-study, patient representatives were involved in the development of a PREM questionnaire. Patients enrolled in the cluster randomized trial completed the PREM questionnaire at their last treatment visit. Semi-structured telephone-interviews were performed with a subgroup of patients. The interviews were based on an interview guide comprised of the questions from the PREM questionnaire and aimed to elaborate on the PREM questionnaire data. Results: A 12 item PREM questionnaire was developed in partnership with patient representatives. In total, 439 out of 682 patients (64.4%) included patients completed the PREM questionnaire. Telephone semi-structured interviews were performed with 22 patients. In total, 52% (ePRO arm) and 65% (usual care arm) reported having talked with the oncologist/nurse about their responses in the tracking systems before each chemotherapy cycle. Fewer patients in the ePRO arm compared to the usual care arm experienced side effects/symptoms not included in the side effect questionnaire. Patients experienced high satisfaction with oncologists' and nurses' handling of side effects/symptoms. Conclusions: Patients experienced high satisfaction with oncologists' and nurses' handling of chemotherapy adverse events. The study indicates a need for a more comprehensive side effect questionnaire as tracking system covering more symptoms than the one used in usual care today. Trial registration: Clinicaltrials.gov identifier NCT02996201. Registered 19 December 2016, retrospectively registered. [ABSTRACT FROM AUTHOR]

Simple Summary: The use of immune checkpoint inhibitors (ICI) is expanding with the approval for locally advanced and metastasizing keratinocyte carcinoma. Most cases, however, are non-aggressive. Systemic therapy remains limited by severe side effects. Local administration could broaden ICI, but an adequate immune response might require an immune-attractive adjuvant such as ablative fractional laser (AFL). Accordingly, aiming to broaden the field of ICI to keratinocyte carcinoma, this study investigates the intratumoral injection of anti-PD1 with and without AFL in basal cell carcinoma (BCC), exploring anti-PD1 concentration, immune cell infiltration, tumor response, and safety. With the results of the study showing the feasibility of intratumoral anti-PD1 and increase in immune cell infiltration and tumor reduction upon combined anti-PD1 and AFL, local, hence broader, application of anti-PD1 holds potential for future treatment of non-aggressive keratinocyte carcinomas. The use of immune checkpoint inhibitors (ICI) is expanding with the approval for advanced/metastatic keratinocyte carcinoma; however, most tumors are non-aggressive. Local administration could broaden ICI, but adequate immune response might require an immune-attractive adjuvant such as ablative fractional laser (AFL). Accordingly, this study aimed to explore intratumoral injection of anti-PD1 with and without AFL in basal cell carcinoma (BCC), exploring anti-PD1 concentration, immune cell infiltration, tumor response, and safety. This open-label, proof-of-concept trial investigated intratumoral anti-PD1 + AFL combination therapy versus anti-PD1 or AFL monotherapy in 28 BCC patients. The primary endpoints were immune cell infiltration evaluated immunohistochemically and clinical tumor response after 3 months. The secondary outcomes were tumoral drug concentration and safety. The most robust response was obtained following intervention with combined anti-PD1+AFL, leading to a ~2.5-fold increase in CD3+ cells (p = 0.027), and tumor reduction ≥25% in 73%, including two tumors with complete remission. Upon anti-PD1 monotherapy, a slight decrease in CD3+ cells was observed while a non-significant increase following AFL was seen. Tumor reduction ≥25% was seen in 45% and 50%, respectively, after anti-PD1 and AFL monotherapy. The CD8/CD3 ratio remained unchanged after anti-PD1+AFL and anti-PD1 monotherapy, while AFL led to a decreased ratio. A non-significant decline in the Foxp3/CD3 ratio was observed for all groups. Side-effects were mild with no systemic drug concentration detected. Intratumoral anti-PD1 injection is feasible, and a single exposure to locally injected anti-PD1 with adjuvant AFL increased immune cell infiltration and reduction in BCC with limited side-effects. [ABSTRACT FROM AUTHOR]

Aim: To investigate if acupuncture reduces nausea and vomiting in terminally ill patients. Design: A comparative effectiveness research design was used to generate evidence‐based knowledge close to practice for the use of clinicians. The sample size was calculated to 136 patients randomised into an intervention and a control group, respectively. Nausea and vomiting were measured using the EORTC QLQ‐c15‐PAL (European Organisation for Research and Treatment of Cancer, Quality of Life Questionnaire, core 15, Palliation). Location: The trial was conducted among terminally ill patients admitted to three in‐bed hospices in Demark. Participants: Terminally ill patients suffering from nausea and/or vomiting; 95% of patients had cancer. Intervention: The intervention group received acupuncture in addition to usual care for three days. We used the acupuncture spots: Pericardium‐6, Stomach‐36, Liver‐3 and Yin Tang. The control group received usual care only. Results: In total, 136 patients were randomised, 24 patients withdrew resulting in a total sample of 112 patients: 52 patients in the intervention group and 60 patients in the control group. In the intervention group, 75% of the patients experienced a reduction of their nausea score after the intervention compared to 55% in the control group. The statistical difference was p = 0.028. In the intervention group, 52% of the patients did not experience nausea at all after the intervention compared to 30% in the control group. In the intervention group, 31% of the patients were still vomiting after the intervention compared to 34% in the control group; no statistically significant difference was found. Conclusion: Acupuncture reduced the experience of nausea among terminally ill patients but did not reduce vomiting. Thus, acupuncture is recommended to reduce nausea among terminally ill patients. [ABSTRACT FROM AUTHOR]

Objective: We aim to identify and prioritise rehabilitation interventions to strengthen participation in everyday life for young adult cancer survivors (YACS) between 18 and 39 years, involving the perspectives of YACS and relevant stakeholders. Methods: A group concept mapping study was conducted in Denmark from 2019 to 2020. Online, participants generated and sorted ideas followed by rating their importance. Multidimensional scaling followed by hierarchical cluster analyses were applied to generate a cluster rating map of the prioritised interventions, which participants validated at a face‐to‐face meeting. Finally, a concluding conceptual model of prioritised rehabilitation intervention for YACS was developed. Results: The study involved 25 YACS, three family members and 31 professionals working with YACS. The conceptual model included 149 ideas classified into eight intervention components created by the participants: (1) Treatment and possibilities within the social and healthcare system, (2) Rights and Finance, (3) Education and Work, (4) Psychological problems, (5) Body and Everyday Life, (6) Peer‐to‐peer, (7) Sexuality and Relationships and (8) Family and Friends. All components were rated equally important, whereby 17 ideas across the eight components were rated very important. Conclusion: This study indicates that rehabilitation of YACS should be composed of eight equally important intervention components requiring an interdisciplinary approach. [ABSTRACT FROM AUTHOR]

Survival from colon cancer (CC) has improved considerably over the last decades, yet many survivors suffer from late sequelae from treatment. Typical symptoms of bowel dysfunction after treatment of CC are diarrhea, urge for defecation, fecal incontinence, bloating and constipation. Most CC survivors make dietary changes to alleviate bowel symptoms. We aimed to describe the self-perceived effects of diet on bowel function among CC survivors and the level of dietary information given. In this cross-sectional study, CC patients from four surgical departments in Denmark completed surveys regarding the effects of diet on their bowel function and whether they had previously received dietary advice. Data concerning sociodemographic characteristics and the surgical procedure (right-sided or left-sided hemicolectomy) were collected from the Danish Colorectal Cancer Group database. Forty-four healthcare professionals specialized in CC completed a questionnaire on how they advise CC. Descriptive statistics were applied. Among 1544 patients invited, 1239 (80.4%) responded, and 844 met the inclusion criteria (53% males, median age 72.6 years, median time since surgery 742 days). Among these, 267 (32%) reported that food affected bowel function. Fat was perceived to have a negative effect in 193 (25%), spices in 149 (19%), sweets in 101 (13%) and meat in 99 (13%). There was no association between tumor site and food categories affecting bowel function (p = 0.078). Most healthcare professionals (93%) stated that their unit gave advice about diet, but only 24% of patients remembered such information. One-third of CC survivors perceive that food items, especially fat and spices have a negative impact on their bowel function. We found a major discrepancy between healthcare professionals reporting that they provide advice and the proportion of patients remembering this. There is an unmet need for further recognition of the role of diet in CC rehabilitation and for intervention studies of treatment principles. [ABSTRACT FROM AUTHOR]

Objective: Patients with operable lung cancer experience physical and psychosocial challenges early in their treatment trajectory. However, these patients have unmet needs for a dialogue with clinicians and report that especially psychosocial challenges are not addressed in the clinical encounter. Aiming to understand the reasons for this, this study explores dominant narratives about operable lung cancer. Methods: An ethnographic study was conducted at a Danish hospital providing surgery for lung cancer. Interactions between patients, relatives and clinicians were observed during hospitalisation. Ten patients were included from September 2019 to March 2020. Results: One overarching dominant narrative of 'being lucky' was found, supported by three narrative subthemes, related to different aspects of the treatment. First, the possibility of surgical treatment was 'like winning the lottery'. Second, surgery was a minor intervention like 'a quiet day at the office'. Third, even if adjuvant chemotherapy was necessary, as long as the surgery went well, it was 'good news' in the outpatient clinic. Conclusion: 'Being lucky' is a dominant restitution narrative about operable lung cancer. A predominance of restitution narratives implies that clinicians are the active party, while patients remain passive, which limits their perspective and thus silences their concerns unrelated to curative treatment. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses various articles within the issue on topics including ways to develop theory based and manualized complex behavioral interventions, mapping availability and characteristics of childhood cancer, and mapping of late effects of diseases.

Aim: To estimate the effect of laparoscopy versus laparotomy on recurrence status in patients undergoing intended curative resection for stage I–III colon cancer using nationwide data. Method: A retrospective cohort study using prospectively collected nationwide quality assurance data on all patients undergoing elective, intended curative surgery for UICC stage I–III colon cancer in Denmark from 1 January 2010, through 31 December 2013. The association between laparoscopic versus open surgery and recurrence status was investigated using cause‐specific hazard and subdistribution hazard models with death from any cause as a competing event. Results: In total, 4369 patients undergoing elective intended curative surgery for colon cancer were included in the analysis. Overall, 3243 (74.2%) patients underwent laparoscopic surgery. During a median follow‐up time of 84 months, 1191 (27.2%) patients experienced recurrence, and 1304 (29.8%) patients died. The cause‐specific hazard of recurrence following laparoscopic versus open surgery was HRCS = 1.08, 95% CI: 0.90–1.28, p = 0.422. The subdistribution hazard of recurrence following laparoscopic versus open surgery was HRSD=0.99, 95% CI: 0.84–1.16, p = 0.880. Conclusion: Elective laparoscopic resection for UICC stage I–III colon cancer is oncologically safe and comparable with open resection. These results confirm the external validity of previous RCTs in everyday clinical settings. [ABSTRACT FROM AUTHOR]

Prevalence of peripheral neuropathy (PN) has been studied in patients undergoing treatment with taxanes, platinums and vinca alkaloids. The prevalence is unknown in the general oncological cancer population, characterized by advanced age, comorbidities and heterogeneous treatments. A cross-sectional survey was administered to all adult patients, attending outpatient services at three Danish departments of oncology. The survey contained the EORTC-CIPN20, the EORTC-QLQ-C30, the GAD7 and PHQ9 questionnaires. A high PN symptom score was defined as a summary score ≥30 points on the CIPN20. P-values were adjusted for multiple testing. With an overall response rate of 83% (2839 patients), prevalence of PN was 17% overall, varying from 6 to 33% between diagnosis groups. A high score was more common among females (19 vs. 14%, p =.008), smokers (21 vs. 15%, p =.04), patients living alone (21 vs. 15%, p =.002) and patients using cannabis (29 vs. 15%, p <.001), as well as patients suffering from diabetes (26 vs. 16%, p <.001), cardiac heart disease (27 vs. 16%, p <.001), arthritis (32 vs. 15%, p <.001) or chronic obstructive pulmonary disease (25 vs. 16%, p =.01). High score patients were also older (69ys vs 67ys, p =.048) and more likely experiencing polypharmacy (OR = 3.38 [95% CI, 2.64;4.35]). Patients with a high CIPN20 symptom score scored worse on all EORTC QLQ-C30 function and symptom scales. The mean adjusted C30 SumScore difference was −18.66 ([95% CI, −20.31; −17.02], p <.001). Symptoms of PN are experienced widely across cancer groups in the oncology setting. PN symptoms were associated with clinically relevant worse health-related quality of life and with patient-related factors as living alone, various comorbidities, polypharmacy, and cannabis use. [ABSTRACT FROM AUTHOR]

Psychological distress may be present among patients who are considering enrollment in phase 1 cancer trials, as they have advanced cancer and no documented treatment options remain. However, the prevalence of psychological distress has not been previously investigated in larger cohorts. In complex phase 1 cancer trials, it is important to ensure adequate understanding of the study premises, such as the undocumented effects and the risk of adverse events. In a prospective study, patients completed questionnaires at two time points. We investigated psychological distress, measured as stress, anxiety, and depression, among patients at their first visit to the phase 1 unit (N = 229). Further, we investigated the understanding of trial information among patients who were enrolled in a phase 1 cancer trial (N = 57). We enrolled 75% of 307 eligible patients. We found a lower mean score of stress in our population compared to population norms, while the mean scores of anxiety and depression were higher. A total of 9% showed moderate to severe symptoms of anxiety and 11% showed moderate to severe symptoms of depression, which indicates higher levels than cancer patients in general. A total of 46 (81% of enrolled patients) completed questionnaires on trial information and consent. The understanding of the information on phase 1 cancer trials in these patients was slightly lower than the level reported for cancer trials in general. Some aspects relating to purpose, benefit, and additional risks were understood by fewer than half of the patients. Our results suggest that distress is not as prevalent in the population of patients referred to phase 1 cancer trials as in the general cancer population. Although patients' understanding of trial information was reasonable, some aspects of complex phase 1 cancer trials were not easily understood by enrolled patients. [ABSTRACT FROM AUTHOR]

Drawing upon ethnographic fieldwork in a Danish pediatric oncology ward we explore how children – as cancer patients – respond to the time constraints of cancer treatment that may save their lives but simultaneously hold them under a spell of time. Children respond through practices of what we have called "tinkering with time," which enable them to seize control not of life, but of time. We suggest that tinkering be understood as time work through which children mold their experience of the constraints of time. We regard this as an expression of existential agency that simultaneously sustains children's sense of autonomy. [ABSTRACT FROM AUTHOR]

Background: Knowledge of patterns in cancer patients' health care utilisation around the time of diagnosis may guide health care resource allocation and provide important insights into this groups' demand for health care services. The health care need of patients with comorbid conditions far exceeds the oncology capacity and it is therefore important to elucidate the role of both primary and secondary care. The aim of this paper is to describe the use of health care services amongst incident cancer patients in Denmark one year before and one year after cancer diagnosis. Methods: The present study is a national population-based case-control (1:10) registry study. All incident cancer patients (n = 127,210) diagnosed between 2001 and 2006 aged 40 years or older were identified in the Danish Cancer Registry. Data from national health registries were provided for all cancer patients and for 1,272,100 controls. Monthly consultation frequencies, monthly proportions of persons receiving health services and three-month incidence rate ratios for one year before and one year after the cancer diagnosis were calculated. Data were analysed separately for women and men. Results: Three months before their diagnosis, cancer patients had twice as many general practitioner (GP) consultations, ten to eleven times more diagnostic investigations and five times more hospital contacts than the reference population. The demand for GP services peaked one month before diagnosis, the demand for diagnostic investigations one month after diagnosis and the number of hospital contacts three months after diagnosis. The proportion of cancer patients receiving each of these three types of health services remained more than 10% above that of the reference population from two months before diagnosis until the end of the study period. Conclusions: Cancer patients' health service utilisation rose dramatically three months before their diagnosis. This increase applied to all services in general throughout the first year after diagnosis and to the patients' use of hospital contacts in particular. Cancer patients' heightened demand for GP services one year after their diagnosis highlights the importance of close coordination and communication between the primary and the secondary healthcare sector. [ABSTRACT FROM AUTHOR]

Abstract: Recent decades have seen much variation in survival and mortality among European cancer patients, with rather small increases in survival, especially among patients in UK and Denmark. This poor outcome has been ascribed tentatively to patient delay since an estimated 20–25% of all cancer patients report having experienced cancer-related symptoms for more than three months before seeking care. In this article we analyse semi-structured interviews with 30 adult Danish cancer patients and their families. Special focus is given to symptom interpretation processes, and how these processes potentially delay care-seeking decisions. The paper adopts a contextual approach inspired mainly by the sociologist concept of containment. Alonzo’s theory is supplemented with recent anthropological and sociological literature on how people establish the relation between bodily sensations and symptoms and decide how to respond adequately to these. We present an analysis illustrating that bodily sensations and symptoms are potentially contained in a dynamic interplay of factors related to specific social situations, life biographies and life expectations and their accordance with culturally acceptable values and explanations. Finally, we discuss the implications of the analysis for future studies on patient delay. [Copyright &y& Elsevier]

Purpose: To deepen the understanding of how survivors' experience and give meaning to the embodied phenomenon of chronic sensory disturbances in everyday life after oxaliplatin treatment for colorectal cancer. Methods: Data was generated by means of a semi-structured interview guide and drawings with the aim to explore eight survivors' lifeworld experiences. Data was analyzed through a phenomenological approach. Results: The essential meaning of sensory disturbances emerged in two main themes and four sub-themes. Theme A: 'A peculiar experience that is difficult to logically understand' with the subthemes; 'An ambiguous perception in hands and feet' and 'Being alienated from one's own body'. Theme B: Losing touch with the world' with the subthemes: 'A lack of sensory contact with physical surfaces' and 'Breakdown of sensitivity in hands hampers fine motor skills and social contact'. Conclusion: Sensory disturbances contributed to an ambiguous and discordant perception of an alienated body that was difficult to describe and affected the ability to act and connect to things and other people. Metaphors and drawings were valuable as means to verbalize and illustrate the changed body perception where the 'I can' changed into 'I cannot'. To support the embodied connection to the world new usage patterns were required. [ABSTRACT FROM AUTHOR]

Background: Cancer treatment is often given on an outpatient basis. An oncological emergency telephone line has been established to improve access to cancer care and prevent life-threatening side effects. However, healthcare professionals need to make clinical decisions without being able to assess patients face-to-face, which may be problematic. This study explores how healthcare professionals experience clinical decision-making in oncological emergency telephone consultations. Methods: An exploratory qualitative approach applying three focus groups with healthcare professionals from a Danish university hospital were undertaken. Data were analysed using inductive content analysis. Results: An overall theme elucidated how healthcare professionals ended up deciding during each call whether the problem could be solved on the phone or the patient had to come for a face-to-face consultation or to wait and see whether the condition changed. Some decisions were easy to make, while others were moderate or diffi- cult. The decision was influenced by several factors that could be structured into three themes: reliance on one's own knowledge and experience, consideration of different perspectives and the influence of context. Conclusion: This study demonstrated that clinical decisionmaking in oncological emergency telephone consultations includes three types of decisions that are intertwined with intra-personal, inter-professional and contextual factors such as personal knowledge, collaboration and workload. These factors are essential for the timely referral of patients to the right level of service. [ABSTRACT FROM AUTHOR]

BACKGROUND: Osteonecrosis of the jaw (ONJ) is an adverse effect of antiresorptive treatment. This study estimated incidence proportions and incidence rates of ONJ in cancer patients with bone metastases from solid tumors treated for the prevention of skeletal‐related events in routine clinical practice. METHODS: This cohort study in Denmark, Norway, and Sweden in 2011‐2018 included 3 treatment cohorts: a denosumab inception cohort (DEIC), a zoledronic acid inception cohort (ZAIC), and a denosumab‐switch cohort (DESC). The authors estimated 1‐ to 5‐year incidence proportions and incidence rates of ONJ overall, by cancer site (breast, prostate, or other solid tumor), and by country. ONJ diagnoses were confirmed by adjudication. RESULTS: There were 1340 patients in the DEIC, 1352 in the ZAIC, and 408 in the DESC. The median ages of the 3 cohorts were 70, 69, and 70 years, respectively; the proportions of men were 72.6%, 53.8%, and 48.3%, respectively; and the median follow‐up was 19.8, 12.9, and 13.3 months, respectively. The 5‐year incidence proportions of ONJ were 5.7% (95% confidence interval [CI], 4.4%‐7.3%) in the DEIC, 1.4% (95% CI, 0.8%‐2.3%) in the ZAIC, and 6.6% (95% CI, 4.2%‐10.0%) in the DESC. The corresponding ONJ incidence rates per 100 person‐years were 3.0 (95% CI, 2.3‐3.7), 1.0 (95% CI, 0.6‐1.5), and 4.3 (95% CI, 2.8‐6.3). Incidence proportions and incidence rates were highest in patients with prostate cancer and in Denmark. CONCLUSIONS: This study provides estimates of the risk of medically confirmed ONJ among patients initiating denosumab or zoledronic acid in routine clinical practice in 3 Scandinavian countries. The results varied by cancer site and by country. LAY SUMMARY: Denosumab and zoledronic acid reduce the risk of bone fractures, pain, and surgery in patients with advanced cancers involving bone.Osteonecrosis of the jaw (ONJ)—death of a jawbone—is a known side effect of treatment with denosumab or zoledronic acid.The authors examined almost 2900 denosumab‐ or zoledronic acid–treated patients with cancer in Denmark, Norway, and Sweden.Over the course of 5 years, ONJ developed in 5.7% of the patients whose initial treatment was denosumab, in 1.4% of the patients whose initial treatment was zoledronic acid, and in 6.6% of the patients who switched from zoledronic acid to denosumab. In this nonrandomized cohort study in Denmark, Norway, and Sweden, incidence proportions and incidence rates of osteonecrosis of the jaw (ONJ) were estimated for patients with cancer initiating denosumab or zoledronic acid for the prevention of skeletal‐related events in routine clinical practice. Over 5 years after treatment initiation, the incidence proportions of ONJ are reported to be 5.7% among treatment‐naive denosumab initiators, 1.4% among treatment‐naive zoledronic acid initiators, and 6.6% among patients switching to denosumab after no more than 24 monthly bisphosphonate doses; the corresponding incidence rates are 3.0, 1.0, and 4.3 per 100 person‐years. [ABSTRACT FROM AUTHOR]

Objective: This study aims to report HRQOL, patient activation and physical functioning of haematological patients, participating in a 6‐month multimodal interdisciplinary rehabilitation programme HAPPY, when undergoing non‐myeloablative allogeneic haematopoietic stem cell transplantation (NMA‐HSCT). Methods: A prospective single‐arm longitudinal design. Outcomes were collected as part of a feasibility study and included: HRQOL (EORTC QLQ‐C30), patient activation measure (PAM), cardiorespiratory capacity (VO2peak), leg extensor power, lean body mass, measured pre‐NMA‐HSCT at 3‐, 6‐ and 12‐month follow‐up. Results: Thirty (mean age (SD) 64.1 (6.5)) out of 34 patients participated and 18 completed HAPPY. Outcome measures showed large individual differences of decline and improvement during follow‐up. Patients rated HRQOL as good (median 70.8; range 33.3–100). Fatigue, dyspnoea, insomnia and appetite loss mainly remained or worsened. PAM stayed in the upper half of range (median 55.6; range 20.5–84.8) with a trend towards improvement at 12‐month follow‐up. Physical functioning scores were low [i.e. baseline VO2peak, men median 1.5 L/min range (1.0–2.9), women 1.0 L/min (0.8–1.4), leg extensor power men 2.1 Watt/kg range (1.3–3.8), women 1.7 Watt/kg (1.3–2.4), lean body mass men 19.5% (17.6–24.9) and women 17.8% (15.3–21.7)]. Conclusion: The sustained low level of physical functioning and symptoms 12‐month after NMA‐HSCT emphasise the need for pre‐rehabilitation and long‐lasting rehabilitation support in this frail patient group. [ABSTRACT FROM AUTHOR]

Objective: Patients with acute leukaemia undergoing chemotherapy experience multiple symptoms that interfere with activities of daily living. Exercise‐based interventions have been used to remedy disease and treatment‐related symptoms in patients with cancer. We explored the impact of exercise and health counselling on symptom prevalence, severity and longitudinal patterns. Methods: Explorative analysis of M.D. Anderson Symptom Inventory and Brief Fatigue Inventory completed weekly in a randomized controlled trial of patients with acute leukaemia undergoing consolidation chemotherapy. Seventy patients were consecutively recruited and randomly allocated to usual care (n = 36) or 12‐week supervised exercise and health counselling (n = 34) at Copenhagen University Hospital, 2011–2014. Results: There was no difference in symptom prevalence between groups, but we found a significant increase in symptom and fatigue severity in the intervention group during the study period. However, the symptom burden reduced significantly in both groups at 12 weeks. Longitudinally, the symptom cluster; 'drowsiness, fatigue, disturbed sleep, difficulty remembering' was significantly more severe in the intervention group. Conclusion: Intervention and control group participants had substantial symptom and fatigue burden during 12‐week moderate exercise and health counselling in patients with acute leukaemia undergoing chemotherapy. A greater symptom burden was found in the intervention group during the 12 weeks, though reducing in both groups at 12 weeks. Studies are needed to examine the link between exercise and symptom severity. [ABSTRACT FROM AUTHOR]

Background: Early integration of palliative care into oncology treatment is widely recommended. Palliative rehabilitation has been suggested as a paradigm which integrates enablement, self-management, and self-care into the holistic model of palliative care. Aim: We hypothesized that early integration of palliative rehabilitation could improve quality of life. Design: The Pal-Rehab study (ClinicalTrials.gov NCT02332317) was a randomized controlled trial. The 12-week intervention offered by a specialized palliative care team was two mandatory consultations and the opportunity of participating in an interdisciplinary group program. Supplementary individual consultations were offered, if needed. Setting/participants: At Vejle University Hospital, Denmark, adults diagnosed with advanced cancer within the last 8 weeks were randomized 1:1 to standard oncology care or standard care plus intervention. Assessments at baseline and after six and 12 weeks were based on the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30). At baseline participants were asked to choose a "primary problem" from a list of QLQ-C30 domains. The primary endpoint was the change in that "primary problem" measured as area under the curve across 12 weeks (T -scores, European mean value = 50, SD = 10). Results: In all, 288 were randomized of whom 279 were included in the modified intention-to-treat analysis (146 in the standard care group and 133 in the intervention group). The between-group difference for the primary outcome was 3.0 (95% CI [0.0–6.0]; p = 0.047) favoring the intervention. Conclusion: Early integration of palliative rehabilitation into standard oncology treatment improved quality of life for newly diagnosed advanced cancer patients. Trial registration: Clinicaltrials.gov Identifier: NCT02332317, registered on December 30, 2014. [ABSTRACT FROM AUTHOR]

Background: A new technology in cancer treatment, the MR-linac, provides online magnetic resonance-guided radiotherapy (MRgRT) that combines real-time visualization of the tumor and surrounding tissue with radiation therapy to deliver treatment more accurately. Online MRgRT makes it possible to minimize treatment volume, potentially reducing acute treatment toxicity. Patient-reported outcomes (PRO) add the patient perspective to evaluating treatment toxicity related to new technology. The objective of this mixed-methods study was to develop and explore the content validity of a set of PRO items to evaluate acute pelvic toxicity to radiotherapy including online MRgRT. Methods: A literature review and chart audit were conducted to identify symptomatic adverse events (AEs) to be selected from the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) library and European Organisation for Research and Treatment of Cancer (EORTC) item library. To validate the content, the item set was applied in a prospective pilot cohort of patients referred for primary pelvic RT with curative intent. Patients reported symptoms weekly during RT (4–8 weeks) and the subsequent 4 weeks. Follow-up reports were collected at 8, 12, and 24 weeks after RT. To ensure symptom coverage clinician-reported toxicity and individual patient interviews were conducted. The symptomatic AEs were included in the final item set if ≥20% of patients reported them. Results: Eighteen acute symptomatic AEs were selected for the initial item set. Forty patients (32 prostate cancer, 8 cervical cancer) were included in the pilot study. Patients with prostate cancer and those with cervical cancer both reported all 18 acute AEs. However, vomiting was not reported by > 20% of patients thus excluded from the item set. Adding a few diagnosis-specific AEs to the final item set was required for both prostate and cervical cancer patients. Conclusions: A PRO item set for patients with pelvic cancer treated with radiotherapy with a curative intent was developed and content validity explored. In the pilot study, the item set captured the most common acute symptomatic AEs for patients with prostate and cervical cancer related to pelvic RT including online MRgRT. Further validation of the content in broader disease sites would be needed in future studies. [ABSTRACT FROM AUTHOR]

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Aim: Postoperative complications are believed to result in poorer long‐term oncological outcomes. The contribution of time to chemotherapy has not been analysed in detail. Our aim was to examine the association between postoperative complications and long‐term oncological outcomes and overall survival, and the influence of delay in chemotherapy on these outcomes. Method: The study was a nationwide register‐based observational study that included patients undergoing surgery for colorectal cancer and receiving adjuvant chemotherapy in Denmark between 2010 and 2015. Information regarding postoperative complications was obtained from the Danish Colorectal Cancer Group national clinical registry. A Cox regression model was used to estimate disease‐free survival, recurrence‐free survival and all‐cause mortality in patients surviving for 180 days or more after surgery. Results: A total of 4083 patients were included, of whom 690 had postoperative complications. Postoperative complications were associated with increased odds of delay to adjuvant chemotherapy (odds ratio 4.56, 95% CI 3.67–5.66, p < 0.0001). An unadjusted analysis revealed that patients with complications had poorer disease‐free survival and recurrence‐free survival and had increased all‐cause mortality. In multivariate analysis, postoperative complications were not associated with poorer disease‐free survival [hazard ratio (HR) 1.02, 95% CI 0.88–1.18, p = 0.80] recurrence‐free survival (HR 1.05, 95% CI 0.89–1.25, p = 0.56) or all‐cause mortality (HR 1.04, 95% CI 0.86–1.26, p = 0.67). Conclusion: This study showed no association between the occurrence of postoperative complications and long‐term prognosis when adjusting for time to adjuvant chemotherapy. [ABSTRACT FROM AUTHOR]

Background: Telephone consultations are common in supporting patients and caregivers in managing symptoms from cancer diseases and side effects from cancer treatment. In connection with telephone consultations, it may be a challenge that healthcare professionals have to rely on their auditory sense alone when they assess whether the problem can be solved over the telephone, or whether patients need an examination face to face. Objective: To explore how healthcare professionals identify patients' essential concerns and assess serious conditions in calls to an oncological emergency telephone without face‐to‐face contact. Methods: From a phenomenological‐hermeneutical frame of reference, the analysis of three focus groups with a total of 16 healthcare professionals was guided by content analysis. Ethics: The study follows the ethical guidelines for research. Results: Two themes emerged. To identify patients in serious conditions, healthcare professionals kept focus on: (1) 'Reaching a mutual understanding without the clinical eye'. Before making a decision regarding a face‐to‐face examination, the healthcare providers were as follows: (2) 'Listening to an inner voice – attention on clues and signs'. Limitations: The transferability of the findings is limited to healthcare professionals who perform telephone‐mediated care in a team of nurses and physicians. Conclusion: Staying open for diverse perspectives and integrating nonanalytical as well as analytical illness scripts, healthcare professionals were able to identify patients that needed further examination face to face. [ABSTRACT FROM AUTHOR]

We aimed to investigate the Non-specific Symptoms and Signs of Cancer-Cancer Patient Pathway (NSSC-CPP) in order to describe organisational and clinical practice similarities and differences in the diagnostic work-up of suspected cancer in Denmark. A questionnaire on the organisation and practice pertaining to the NSSC-CPP was completed by all 21 diagnostic units in the five healthcare regions in Denmark. The questionnaire responses revealed regional and intraregional differences in the organisation and clinical practice of the NSSC-CPP. CT scan was the most often used imaging in the NSSC-CPP but there was no consensus whether the CT scan should be ordered and evaluated by general practitioners (GPs) or by the diagnostic units. Two regions were consistent but had different modalities regarding referrals from GPs. Three regions had intra-regional differences. The units reported on different types and frequency of forum for patient plan discussion and how to end a NSSC-CPP. The NSSC-CPP is implemented with great regional and intra-regional differences in Denmark. GPs face different requirements when referring to the NSSC-CPP, which indicates that the division of role and responsibility between GPs and the diagnostic units is not well defined. In Denmark, the cancer patient pathway for non-specific symptoms and signs of cancer (NSSC-CPP) has been implemented with variations, but little is known about these different modalities. This study showed that both at a regional and an intra-regional level: •General practitioners meet different implementation of national guidelines in the diagnostic units when referring to the NSSCP-CPP •The suitable patient group for the NSSC-CPP is not well defined •Quality criteria are needed to monitor, evaluate and improve the diagnostic work-up for patients with non-specific symptoms and signs of cancer [ABSTRACT FROM AUTHOR]