The role of sharing personal stories and discussing coping strategies: analysis of user generated content on blogs and forums in the context of rare cancers

Context: Rare cancer patients and their families are particularly active in forums and social networks. This study looks at how and when people use them, what information they try to find there, and what support they hope to get from them. We explored the value of this 'user-generated content' for patients' quality of life. Method: Content analysis of blog posts from five different networks: 'Rareconnect', 'Patientslikeme', 'Stuffthatworks', 'Inspire' and 'Kanker.Nl'. Posts (n=94) were selected from rare cancer-specific groups and channels for people without a diagnosis. A coding system was constructed to analyse the conversations according to the different needs and to check who was responding and whether the responses met the needs. Results: Patients and carers use forums to learn about the disease, compare symptoms and see if they are part of a 'normal' course. They also want to get an idea of the evolution of the disease by seeking out peers who have already faced disease progression. Patients are often active at key moments, after being diagnosed or when a new therapy is introduced, and the way the questions are asked reveals a high level of uncertainty about what lies ahead. Comments and responses are made by both patients and carers. Acknowledgement is often coupled with additional information on how to deal with specific symptoms or side effects. If no diagnosis is made, hypotheses about possible illnesses are shared. Respondents refer to experts or health professionals in whom they have placed their trust. Conclusions: Activity on forums help people cope with rare cancers. People report feeling less alone and isolated. They say that exposure to different patient perspectives reduces uncertainty. People may stop being active if they feel that their questions are being answered. Control of the situation is regained by satisfying information needs. However, if a new situation of uncertainty arises, activity may resume. Clinical implications Health professionals could encourage patients to bring the information they find to the consultation, helping to validate and contextualise