Developing patient‐centred information for back pain sufferers

Objective To identify information needs among a group of back pain sufferers as well as the barriers that may prevent them from accessing this information. Design Data were collected through the use of open, in‐depth interviews, through contributions to the Norwegian Back Pain Association's online discussion list, and through a search of the literature. Participants Norwegian back pain sufferers and their carers. Main variables studied Information needs and barriers. Results The informants described information needs that covered a wide range of topics, clinical, financial, emotional and social. Informants wanted to understand the cause of their pain and wanted information about existing diagnoses and diagnostic procedures. Informants asked for information about treatment alternatives, both within and outside the established health‐care system, the effects of these treatment alternatives, their procedures, side‐effects and costs. In addition, informants wanted information about the social and emotional effects of long‐term pain; coping with everyday life; other people's experiences; and about welfare benefits and patient rights. Barriers to this information included the use of medical, legal and other jargon, doctors’ lack of time, lack of communication skills, lack of knowledge about back pain and attitudes to back pain patients. Conclusions To successfully address the questions and concerns of users, there should be an attempt to present information on as many of these topics as possible. Information should be presented in the user's own language, at several levels of understanding, and should include both evidence‐ and experienced‐based knowledge.