"What I really needed was the truth". Exploring the information needs of people with Complex Regional Pain Syndrome

BackgroundUnited Kingdom guidelines indicate individuals with Complex Regional Pain Syndrome (CRPS) require information and education to support self management. This qualitative study explored the specific information requirements of patients with CRPS and provides insight into how health professionals can best provide this.MethodsFollowing informed consent, eight semi-structured telephone interviews were conducted with adults living with CRPS. Participants were asked about their experience of receiving information since diagnosis and what information they would prefer to receive. Interviews were transcribed and data analysed using thematic analysis.ResultsTwo themes related to the individuals’ experience of receiving information; ‘Facing the unknown’ describes how the participants reported little information was available and the impact of this. ‘The need to be an expert’ describes how they needed to be proactive to seek this information themselves. Three themes related to what information the individual would choose to receive; ‘Seeking the truth’ describes the need for knowledge, in particular accurate, honest information. ‘The shared experience’ describes the positive and negative aspects of sharing information with others experiencing CRPS. ‘Access to expertise’ describes the need for access to reliable information, resources and expertise.ConclusionThe reported lack of information resulted in a struggle for participants to understand their condition, access professional expertise and appropriate treatments. Health professionals require access to accurate information in order to share this with individuals with CRPS in a timely manner. Easily accessible and high quality patient resources to facilitate early referral for expertise are required. A central resource to identify local expertise would be valuable.