Karin Ribi

Introduction Palliative care has been identified as one of the most inequitable areas of healthcare. In Switzerland, as globally, disparities in end-of-life care (EOLC) exist along socio-demographic lines, shaping the access to and quality of care received across services by patients and their caregivers. Research has linked these disparities to binary gender differences and other aspects of a person’s social position. The GiveCare project aims to provide a systemic understanding of how aspects of gender and diversity intersect to shape the provision of EOLC in Switzerland and to translate the generated knowledge into practice, policy, education and training. Methods and analysis GiveCare employs a sequential mixed-methods design, combining a feminist intersectional approach with a systems thinking lens. It consists of four work packages (WPs): (1) A national survey will assess the perceived awareness of gender and diversity among palliative care professionals. (2) A focused ethnography will provide in-depth insights into the care journeys of patients and their significant others in two specialised inpatient palliative care units. (3) A social network analysis and discrete event modelling will unpack the complexity of such care journeys across inpatient and outpatient settings in the Canton of Zurich. 4. Throughout the process, an integrated knowledge translation approach will help to generate actionable evidence, co-created with patients, caregivers, professionals and policymakers, to enhance inclusivity and equity in EOLC practice and policy. Ethics and dissemination The Ethics Committee of the Canton of Zurich, Switzerland, granted ethical approval for WP2–4 (Req-2025-02241) and issued a waiver for WP1 (Req-2025-00211). The research team will conduct the research in accordance with the Swiss Federal Act on Data Protection and the rules and regulations of the Swiss Federal Data Protection and Information Commissioner. The findings will be disseminated through peer-reviewed publications and conference presentations as well as via the community of practice established through the integrated knowledge translation process.

Background: The number of cancer survivors in Switzerland is increasing. Many individuals face challenges in dealing with health-related information and navigating the health care system. Digitalization offers new care and support opportunities, but its effective use requires digital and navigational health literacy (HL) and self-management skills. Objective: This study aimed to assess the competencies of cancer survivors in Switzerland, compare them with those of the general population, and identify vulnerable subgroups. Methods: A cross-sectional online survey was conducted using validated scales from the Health Literacy Survey 2019‐2021 (HLS ₁₉ ), measuring digital HL, interaction with digital devices, frequency of use of digital resources, and navigational HL. Self-management skills were assessed with the Health Education Impact Questionnaire (heiQ). HLS ₁₉ scores were compared to data from the general Swiss population and a subpopulation with chronic diseases provided by the Federal Office of Public Health, using Mann-Whitney U tests, chi-square tests, and independent t tests. Regression analyses identified associations of sociodemographic and clinical factors with digital and navigational HL and self-management skills. Results: A total of 131 cancer survivors (74.8% female, 41% with breast cancer) completed the survey. Only 30% reported high digital HL, while self-management skills were generally high, particularly in “health service navigation” (median 3.6, IQR 0.8 on a 4-point Likert scale) and “constructive attitudes” (median 3.6, IQR 1). Compared to the general population, cancer survivors had significantly higher scores in digital interaction and digital resource use ( P ≤.002), while no differences were observed in digital or navigational HL. Digital and navigational HL, as well as self-management, were consistently associated with education level, social support, and financial deprivation. Conclusions: Cancer survivors in Switzerland report low digital and navigational HL, comparable to the general population, while self-management skills were strong overall. Support strategies should simultaneously target individual and systemic factors to improve cancer survivors’ ability to access and use digital health resources. Future research should include a more representative sample to validate these findings.

Background: Chronic illness may cause a financial burden that affects patients, their caregivers, and families. While international research, mostly from the United States, has largely focused on cancer-related financial hardship, less is known about whether financial distress due to other chronic illnesses exists, specifically in countries that have universal health insurance coverage, such as Switzerland. Objective: This study aims to provide insights into how financial burden is discussed by individuals living with chronic illness in Switzerland. Methods: Based on a natural language processing (NLP) approach, alongside topic modeling, a secondary analysis of 180 qualitative interviews of individuals living with chronic illness (dementia, chronic pain, multiple sclerosis, Parkinson disease, and rare diseases) from the Swiss Database of Individual Patient Experiences was conducted. Results: Key categories identified were money issues, disability insurance, general insurance concerns, and work and loss of income. Individuals living with dementia and Parkinson disease appear to be more concerned with money issues, whereas people living with chronic pain, multiple sclerosis, and rare diseases are more burdened by insurance-related concerns, specifically disability insurance-related challenges. Bureaucratic hurdles and employment instability appear to contribute to the financial burden of people living with chronic illness in Switzerland. Conclusions: Financial burden is a complex issue among individuals living with chronic illness in Switzerland. Our findings indicate that effectively addressing this burden requires a comprehensive and context-sensitive strategy. Targeted interventions should consider factors such as insurance eligibility, employment flexibility, and the mitigation of out-of-pocket costs to improve financial stability and quality of life for affected individuals.

Background: Depression has been identified as an adverse mental health outcome in women with breast cancer (BC). Depression was investigated as a risk factor for poor survival in premenopausal women with hormone‐responsive early BC treated in the TEXT (Tamoxifen and Exemestane Trial) and SOFT (Suppression of Ovarian Function Trial) trials. Methods: The data used were from a subset of patients who participated in TEXT or SOFT and completed the Center of Epidemiologic Studies‐Depression scale. Associations between baseline depression‐score categories and baseline characteristics were assessed using the Cochran–Mantel–Haenszel test controlling for antidepressant use. Multivariable proportional hazards regression models were used to test the association between baseline depression and disease‐free survival (DFS) and overall survival (OS). Regression models were adjusted for factors known to be associated with outcomes, baseline antidepressant use, and early treatment cessation. Results: Forty percent (2287 of 5738) of the women enrolled in the SOFT and TEXT trials were included in this analysis (SOFT, n = 1259; TEXT, n = 1028). Twenty‐seven percent of women reported mild‐to‐moderate or severe depression at baseline. Race ( p = .001), body mass index ( p = .02), family history ( p = .02), and performance status ( p =.007) were significantly associated with the severity of depression. Relative to the no‐symptomatology group, the hazard ratios (overall p = .04) for DFS were 1.34 (95% confidence interval [CI], 1.03–1.76) for women with mild‐to‐moderate depression and 1.34 (95% CI, 0.96–1.87) for those with severe depression. Relative to the no‐symptomatology group, the hazard ratios (overall p = .008) for OS were 1.68 for mild‐to‐moderate depression (95% CI, 1.15–2.44) and 1.67 for those with severe depression (95% CI, 1.05–2.66). Conclusions: In premenopausal women with hormone‐responsive early BC, depression at baseline is a risk factor for poorer DFS and OFS. Further investigation of the underlying interactive processes is needed. Trial registration: Clinicaltrials.gov NCT00066703 (SOFT) and NCT00066690 (TEXT).

Background: The inaugural “Cancer Symptom Science Expert Meeting”, held in Lausanne Switzerland on October 11-12, 2023, brought together 40 nurse scientists from seven countries to enhance collaboration across the global symptom science community; identify common research interests, gaps in knowledge, and opportunities for research; and develop strategies to address challenges and accelerate symptom science research internationally. Objective: The aim of this white paper is to summarize the discussions and recommendations deliberated during the meeting and introduces the Global Research Alliance in Symptom Science (GRASS). Methods: This two-day meeting featured presentations that highlighted critical issues and unanswered questions in cancer symptom science and other chronic conditions. Attendees identified four core topic areas based on the knowledge gaps reflected throughout the presentations. Four working groups (WGs) were formed to identify gaps and opportunities associated with each topic and to outline strategic directions and essential actions to advance symptom science. Results: The WGs developed recommendations on four core topic areas. WG1) explored optimal approaches to collect, analyze, and use symptom data for research and clinical purposes. WG2) addressed the development of a minimum dataset or common data model for symptom science research. WG3) focused on enhancement of best practices in implementation science strategies to improve uptake of evidence-based symptom management strategies in routine clinical care. WG4) addressed the questions of capacity building and infrastructure for the creation of a global alliance in symptom science (GRASS). Discussion: WGs’ recommendations underscore the commitment of an international coalition of scientists to advance symptom science. The symposium established the groundwork for the group to constitute GRASS, a global research alliance dedicated to symptom science in cancer and other chronic conditions. Future directions include establishing regular scientific meetings, fostering interdisciplinary collaboration, and engaging with symptom scientists.

The Symptom Navi Program (SNP) is a self-management support (SMS) intervention for people with cancer. It consists of self-management supportive leaflets, educational conversations, and two standardized training sessions. A descriptive quality evaluation method was used to evaluate SNP implementation across 14 cancer services from 2021 to 2024. We evaluated training content, methods, and participants’ confidence to use SMS in their clinical routine. Nurses, social workers, and psychologists completed ad hoc closed and open-ended questions after each training. The Work Sense of Coherence (Work-SoC) scale was used to elicit participants’ self-reported perceptions of their work context at cancer services. A series of descriptive analyses were conducted on the Work-SoC scale, the training content, and the methods. In addition, training-specific questions and predefined hypotheses were correlated. Thematic analysis was employed to examine open-ended questions. The SNP training content and methods largely met participants’ needs. Participants’ confidence in applying educational conversations decreased over time. The findings suggest a robust correlation between the application of educational conversations in daily routines and the participants’ perceptions regarding the comprehensibility and manageability of their work situations. Future research focusing on the implementation of SMS in clinical practice should examine the work context.

Introduction People with cancer and other chronic illnesses, their families and caregivers report financial burden as a problem that affects multiple aspects of daily life. While cancer research has coined the term ‘financial toxicity’ to describe the financial consequences, the understanding, development and operationalisation of the concept of financial burden are still incomplete, particularly regarding subjective financial burden and its relationship with well-being. The overall aim is to investigate financial burden and its implications for the well-being of people living with chronic illness, their families, and caregivers in Switzerland. Methods and analysis Transdisciplinary discussion groups and a participatory action design element frame: (1) a conceptualisation using a hybrid concept analysis approach and (2) an assessment of financial burden of chronic illness in relation to well-being. The hybrid concept analysis combines the results of a scoping review with a secondary analysis of existing interviews using computational linguistics and qualitative analysis. The assessment phase will investigate the extent and nature of financial burden through a nationwide survey. Results from mobile diaries/interviews will contribute to both—the conceptualisation and assessment phases. Ethics and dissemination The Ethics Committee of the Canton Zurich, Switzerland, did not consider the research project to fall under the Swiss Law on Human Subjects research and issued a waiver (Req-2O23-01496). The project respects all the rules and regulations in the Swiss Federal Act on Data Protection and those by the Swiss Federal Official Responsible for Data Protection and Transparency. Results will be disseminated through presentations at conferences and publications in peer-reviewed journals and through the established multi-stakeholder network.