Information Needs of People Living with Fibromyalgia

For people living with fibromyalgia (FM), knowledge of their disease is a critical factor for achieving a better quality of life. Yet, there is a gap between perceived importance of information and our understanding of the information needs of this population. Given the substantial burden that FM places on individuals, there is a need for research that defines information needs and availability relevant to this condition. A mixed method was used to explore the experience of information use and to identify the information needs of people with FM. Findings from the studies demonstrated that despite gender and educational differences, people are in great need of specific types and sources of information. They also encounter a lack of support within health care systems. The findings also showed that the existing online FM information sources are incomplete, have low quality and high level of literacy. Access to information about FM creates a sense of empowerment in people with FM. They expect relevant, usable and high quality information from reliable sources to help them increase their knowledge, help with informed decision-making and improve self-management and quality of life.