Information seeking over the course of illness: the experience of people with fibromyalgia

Although there is literature addressing the fibromyalgia illness experience, there has been limited work concerning how people with fibromyalgia utilize health information. The aim of this study was therefore to investigate the information needs and information-seeking patterns of such individuals, and how these might change over time.

Data were collected through an online survey of fibromyalgia-related information behaviours (N = 190). The participants were recruited through two methods: an email invitation sent out over a university listserv including faculty, staff and students, and invitational posts on fibromyalgia discussion boards on various health-related websites.

Respondents used the internet most frequently, but also placed great value on information from others, including healthcare practitioners, family and friends. Among the online sources, organization websites, health portals and health-related social networking sites were most frequently used. Topics of interest to people with fibromyalgia vary as they move from an initial stage of confusion, to diagnosis and eventually to a stage of equilibrium in which they are satisfied with their management of their condition. Aside from symptoms and treatments, topics often reflect a need to understand the meaning of their condition and coping skills.

The areas of information need identified in the present study can be used to tailor patient education materials and information services to address contextual and temporal factors in the illness experiences of those with fibromyalgia.