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

Abstract

Abstract Purpose: Our study aimed to identify the members of Germany’s largest self-help forum, understanding their characteristics, and addressing their needs effectively. Methods: The sociodemographic and cancer-specific data of 7,171 members were extracted from the forum, categorised, and analysed in January 2023. 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 (11.6%). Most cases had low T-stages, intermediate grading, and low lymph node involvement. The hormone receptor status showed 38.8% were oestrogen receptor positive, 50.6% triple-negative, and 22.9% HER2/neu receptor positive. Cancer treatment compromised surgery (87.2%), cancer drugs (45.7%), endocrine therapy (27.8%), and radiotherapy (34.7%). Conclusion: The FSH online forum supports a diverse group of cancer patients, especially those with breast cancer. Moderation ensures a secure environment for sharing and finding like-minded individuals. As barriers to digital information use may decrease over time, healthcare professionals should recommend online forums for cancer support. Physicians, nurses, and cancer centres can help by including these forums in their recommended resources for patients. Implications for Cancer Survivors: Online cancer self-help forums offer valuable information for cancer survivors and enable mutual exchange, using well-moderated, high-quality platforms.