Patient experiences and needs in cancer care- results from a nationwide cross-sectional study in Germany.

BACKGROUND: Patient-centredness has become a central quality indicator for oncology care. Elements include shared decision-making, patient navigation and integration of psychosocial care, which impact patient-reported and clinical outcomes. Despite efforts to promote patient-centred care in Germany in recent decades, implementation remains fragmented. Further, research on patient experiences with cancer care and its determinants is limited. Therefore, this study examines which patient- and facility-specific factors are associated with patient-centred quality care delivery. METHODS: A cross-sectional study was conducted among 1,121 cancer patients in acute treatment, rehabilitation, and aftercare for different cancer entities across Germany. A participatory developed questionnaire was used. Outcome measures were the quality of physician-patient interaction and provision of psychosocial care during acute care. Predictors comprised patient-specific characteristics and treatment facility-specific factors. Multiple linear regression and multivariate binary logistic regression analyses were performed. In addition, a content analysis of open-ended comments on the patients' overall cancer care needs was applied. RESULTS: Multiple linear regression analysis showed recent diagnosis (ß=-0.12, p = < 0.001), being male (ß=-0.11, p = 0.003), and having a preference for passive decision-making (ß=-0.10, p = 0.001) to be significantly associated with higher interaction quality, but not age, education and health insurance type. An overall low impact of patient characteristics on interaction quality was revealed (adj. R2 = 0.03). Binary logistic regression analysis demonstrated the availability of central contact persons (OR = 3.10, p < 0.001) followed by recent diagnosis (p < 0.001), having breast cancer (p < 0.001) and being female (OR = 1.68, p < 0.05) to significantly predict offering psycho-oncological counselling to patients in acute care facilities. The availability of peer support visiting services (OR = 7.17, p < 0.001) and central contact persons (OR = 1.87, p < 0.001) in the care facility, breast cancer diagnosis (p < 0.001) and a higher level of education (p < 0.05) significantly increased the odds of patients receiving information about peer support in the treatment facility. Despite relatively satisfactory quality of physician-patient interactions in cancer care (M = 3.5 (± 1.1)), many patients expressed that better patient-centred communication and coordinated, comprehensive cancer care are needed. CONCLUSION: The findings reflect effective developments and improvements in cancer care and suggest that patients' social characteristics are less decisive for delivering patient-centred quality care than systemic factors surrounding the care facilities. They can serve to inform oncology care in Germany.

Self-help friendliness and cooperation with self-help groups among rehabilitation clinics in Germany (KoReS): a mixed-methods study protocol.

INTRODUCTION: Self-help is an important complement to medical rehabilitation for people with chronic diseases and disabilities. It contributes to stabilising rehabilitation success and further coping with disease and disability. Rehabilitation facilities are central in informing and referring patients to self-help groups. However, sustainable cooperation between rehabilitation and self-help, as can be achieved using the concept of self-help friendliness in healthcare, is rare, as is data on the cooperation situation. METHODS AND ANALYSIS: The KoReS study will examine self-help friendliness and cooperation between rehabilitation clinics and self-help associations in Germany, applying a sequential exploratory mixed-methods design. In the first qualitative phase, problem-centred interviews and focus groups are conducted with representatives of self-help-friendly rehabilitation clinics, members of their cooperating self-help groups and staff of self-help clearinghouses involved based on a purposeful sampling. Qualitative data collected will be analysed through content analysis using MAXQDA. The findings will serve to develop a questionnaire for a quantitative second phase. Cross-sectional online studies will survey staff responsible for self-help in rehabilitation clinics nationwide, representatives of self-help groups and staff of self-help clearinghouses. Quantitative data analysis with SPSS will include descriptive statistics, correlation, subgroup and multiple regression analyses. Additionally, a content analysis of rehabilitation clinics' websites will evaluate the visibility of self-help in their public relations. ETHICS AND DISSEMINATION: The University Medical Center Hamburg-Eppendorf Local Psychological Ethics Committee at the Center for Psychosocial Medicine granted ethical approval (reference number LPEK-0648; 10.07.2023). Informed consent will be obtained from all participants. Results dissemination will comprise various formats such as workshops, presentations, homepages and publications for the international scientific community, rehabilitation centres, self-help organisations and the general public in Germany. For relevant stakeholders, practical guides and recommendations to implement self-help friendliness will derive from the results to strengthen patient orientation and cooperation between rehabilitation and self-help to promote the sustainability of rehabilitation processes.

Do members of cancer peer support groups know more about cancer than non-members? Results from a cross-sectional study in Germany.

PURPOSE: This study aims to assess whether cancer-specific knowledge (CSK) is associated with membership in a cancer peer support group (PSG) and other factors. METHODS: A cross-sectional study investigated the CSK of 1121 cancer patients of various entities across Germany. CSK was measured with the BCKS-14, a 14-item knowledge instrument which was previously participatory developed with patient representatives and oncologists. Associations between CSK and PSG membership, sociodemographic factors, internet use, and preferences in medical decision-making were analysed with t-tests and multiple linear regressions. RESULTS: The t-test showed a statistically significant difference in CSK between members and non-members of PSGs. Knowledge for PSG members was on average 0.97 points higher (p < 0.001) and varied between 2 and 14 points compared to 0-14 points for non-members. Regression analysis revealed age, gender, time since diagnosis, education, internet use, and PSG activity to be statistically significant predictors. Younger (ß = - 0.15; p < 0.001), female (ß = 0.10; p = 0.001), higher educated patients (ß = 0.27; p < 0.001) with and a diagnosis longer ago (ß = 0.10; p = 0.002) who use the internet frequently for information seeking (ß = 0.20; p ≤ 0.001) and members of cancer PSGs (ß = 0.18; p ≤ 0.001) showed a higher CSK. CONCLUSION: Overall, CSK of the participants shows a high degree of variance. CSK should be promoted for all patients and especially for older, newly diagnosed patients with low educational levels and PSGs introduced early on as they contribute to improving CSK among other benefits.

Self-help friendliness in cancer care: A cross-sectional study among self-help group leaders in Germany.

BACKGROUND: Peer support is increasingly recognized as crucial for improving health and psychosocial outcomes in oncological care. The integration of cancer self-help groups (SHGs) into cancer care facilities has gained importance in recent years. Yet, there is a lack of knowledge of the extent and quality of cooperation between cancer care facilities and SHGs and their integration into routine care. The concept of self-help friendliness (SHF) provides a feasible instrument for the measurement of cooperation and integration. METHODS: A cross-sectional study across Germany investigates the experiences of 266 leaders of cancer SHGs concerning their cooperation with cancer care facilities based on the criteria for SHF. The participatory study was developed and conducted with representatives of the House of Cancer Self-Help and the federal associations of cancer self-help. RESULTS: According to the SHG leaders, about 80% of their members primarily find their way to an SHG via other patients and only less than 50% more or less frequently via hospitals or rehabilitation clinics. The quality of cooperation with cancer centres, hospitals and rehabilitation clinics, however, is rated as good to very good by more than 70% of the respondents. Nine out of 10 quality criteria for SHF are fully or at least partially implemented, the values vary between 53% and 87%. Overall, 58% of the SHG leaders feel well to be very well integrated into care facilities. CONCLUSIONS: The results show a positive assessment of the involvement of SHGs in oncological care, but differences between inpatient and outpatient care and low referrals to SHGs are prominent. The concept of SHF is a feasible solution for a systematic and measurable involvement of SHGs. PATIENT OR PUBLIC CONTRIBUTION: The perspectives and insight of patient representatives obtained through qualitative interviews were directly incorporated into this study. Representatives of cancer self-help organizations were involved in the development of the questionnaire, reviewed it for content and comprehensibility, and further helped to recruit participants.

Empowerment in cancer patients: Does peer support make a difference? A systematic review.

OBJECTIVE: Empowerment is critical for cancer patients to make informed choices, to manage medication, and to navigate through the oncological care system. Cancer peer support provides patients with information, emotional relief and may promote empowerment. This paper provides a systematic review of the literature examining the impact of cancer peer support interventions on psychological empowerment. METHODS: PubMed, Web of Science, CINAHL, Cochrane Library, PsycINFO and PSYNDEX databases were systematically searched from inception until December 2020. We included quantitative studies, published in English or German, which examined peer-led cancer support interventions and their impact on the three components of psychological empowerment (intrapersonal, interactional and behavioural) among participating cancer patients. RESULTS: Database searches and screening of relevant reference lists identified 2336 potentially relevant articles. A total of 29 studies were included in the review. Active coping, self-efficacy and knowledge were the most prominent dimensions of empowerment in these studies. The majority of studies revealed that peer support led to a small to medium, significant increase in psychological empowerment, and was associated with further patient-reported benefits. CONCLUSIONS: The existing evidence suggests a weak to moderate, positive association between cancer peer support and the three components of psychological empowerment among cancer patients. Peer support groups should be seen as an important element in cancer care and clinical practice and, thus, be more systematically involved in cancer care.