ABSTRACT
OBJECTIVE: To evaluate the nationwide online decision aid 'Entscheidungshilfe Prostatakrebs' (established in 2016, >11.000 users and 60 new users/week) for patients with non-metastatic prostate cancer (PCa), from the perspective of patients and urologists. PATIENTS AND METHODS: To provide personalised information, the tool collects most of the International Consortium for Health Outcomes Measurement standard set, personal preferences, psychological features, and a validated rating of the tool. To evaluate urologists' opinions, we developed a structured two-page questionnaire. All data were collected anonymously. RESULTS: From June 2016 to December 2020, 11 290 patients used the PCa decision aid. Their median (interquartile range [IQR]) age was 67 (61-72) years. The median (IQR) time from initial diagnosis to using the tool was 4 (3-7) weeks. In all, 87.7% of users reported high satisfaction. In a multivariable model, predictors for considering observation were higher knowledge, using the decision aid alone, lower oncological risk, normal erectile function, and respective personal preferences. Of 194 urologists, 91 (47%) had implemented the decision aid in their clinical practice. The urologists' mean (SD) satisfaction score (1 'very good'; 6 'unsatisfactory') with it was 1.45 (0.55), and 92% recommended it. Half of the urologists reported time savings. CONCLUSION: Patients and urologists report a very high level of acceptance and satisfaction with this online tool. It offers advantages in shared decision-making and time efficiency. The usage of the decision aid might improve the adoption of active surveillance and watchful waiting when indicated.
ABSTRACT
BACKGROUND: Online support groups are discussion boards on the internet in which users exchange experience, advice and information. The Bundesverband Prostatakrebs Selbsthilfe e.âV. (BPS) operates the largest German-language internet forum for prostate cancer patients. MATERIALS AND METHODS: Several aspects of the BPS Forum were examined: content analysis, language use and interaction, influence on treatment decisions, comparison with conventional face-to-face support groups, and use by relatives and friends. RESULTS: The online support group is dominated by a tentative style of communication with reserved language features. In addition to the exchange of information, emotional support seems to be very welcome to many users and represents an essential part of the exchange. The use of the internet forum leads to a change in the initial treatment decision in 29â% of patients. In comparison with the general population, rates of patients with anxiety and depression were two to three times as high among the users. Compared with the patients themselves, family members in particular had higher values for anxiety and depression and described a higher rate of metastatic diseases in the patients known to them. Users of the online support group were younger, had a higher educational level and a higher income than participants in conventional face-to-face support groups. CONCLUSIONS: Online support groups are rated positively by their users and contribute to the acquisition of information and emotional support. They probably have a significant influence on the primary treatment decision and thus actively shape the reality of care for prostate cancer patients.
Subject(s)
Online Systems , Prostatic Neoplasms/psychology , Self-Help Groups , Sick Role , Caregivers/psychology , Germany , Health Information Exchange , Humans , Male , Prostatic Neoplasms/therapy , Self Care/psychologyABSTRACT
BACKGROUND: As social media are evolving rapidly online support groups (OSG) are becoming increasingly important for patients. Therefore, the aim of our study was to compare the users of traditional face-to-face support groups and OSG. PATIENTS AND METHODS: We performed a cross-sectional comparison study of all regional face-to-face support groups and the largest OSG in Germany. By applying validated instruments, the survey covered sociodemographic and disease-related information, decision-making habits, psychological aspects, and quality of life. RESULTS: We analyzed the complete data of 955 patients visiting face-to-face support groups and 686 patients using OSG. Patients using OSG were 6 years younger (65.3 vs. 71.5 years; p < 0.001), had higher education levels (47 vs. 21%; p < 0.001), and had higher income. Patients using OSG reported a higher share of metastatic disease (17 vs. 12%; p < 0.001). Patients using OSG reported greater distress. There were no significant differences in anxiety, depression, and global quality of life. In the face-to-face support groups, patient ratings were better for exchanging information, gaining recognition, and caring for others. Patients using OSG demanded a more active role in the treatment decision-making process (58 vs. 33%; p < 0.001) and changed their initial treatment decision more frequently (29 vs. 25%; p < 0.001). CONCLUSIONS: Both modalities of peer support received very positive ratings by their users and have significant impact on treatment decision-making. IMPLICATIONS FOR CANCER SURVIVORS: Older patients might benefit more from the continuous social support in face-to-face support groups. OSG offer low-threshold advice for acute problems to younger and better educated patients with high distress. TRIAL REGISTRATION: www.germanctr.de , number DRKS00005086.