Demographic and biographical data from cancer patients of a German online self-help forum

Abstract Purpose Our study aimed to characterise the members of Germany’s largest digital cancer self-help forum ‘Frauenselbsthilfe Krebs’, in order to provide a detailed understanding of who engages with the platform. Methods Sociodemographic and cancer-specific data from 7,171 members was extracted and categorised from the forum in January 2023 using Excel 2021 Version 16.0. The data was then analysed and evaluated by using descriptive analysis with IBM SPSS Statistics 2022 Version 29.0.0.0. Results The members had an average age of 51.5 years, with 84% women and 1.8% men. In terms of occupation, 18.7% worked in administration and office work, 17.7% in healthcare and 11.7% in education and research. Regarding leisure activities, 49.9% were involved in sports and 41.3% in knowledge building. The most common cancers were breast cancer (71.9%), adnexal tumours (6.3%), and gastrointestinal tumours (4.1%). Common metastases included bone (31.3%), liver (22.1%), and lung metastases (11.6%). Most patients had low T-stages, intermediate grading, and low lymph node involvement. The hormone receptor status of 38.8% of the patients was oestrogen receptor-positive, 50.6% was triple-negative, and 22.9% was HER2/neu receptor-positive. Cancer treatment included surgery (87.2%), cancer drugs (45.7%), endocrine therapy (27.8%), and radiotherapy (34.7%). Conclusion The FSH online forum supports diverse groups of cancer patients, especially younger women with breast cancer. Moderation ensures a secure environment for sharing and finding like-minded individuals. Despite its accessibility across social and occupational groups, challenges such as low awareness and limited use by older patients remain. Physicians, nurses, and cancer centres can help by including these forums in their recommended resources for patients. The results of our study may support the further development of the FSH forum as a valuable resource for patient information and exchange, helping it become a key element of psychosocial cancer care.