"What I really needed was the truth": exploring the information needs of people with CRPS

Exploring the information needs of people with Complex Regional Pain Syndrome. The research study asked people with Complex Regional Pain Syndrome (CRPS) what type of information about the condition they would like to receive and how they would like to get this information. People with CRPS need information to help manage the condition however little research has looked at exactly what information is needed. This research study aimed to find out what type of information is needed and how health professionals can best provide this.Eight adults with CRPS took part in the study. They were all living in the UK. Telephone interviews took place following informed consent. The participants were asked about their experience of receiving information since diagnosis and what information they would like to receive. They were also asked how they would like to receive this information for example, via the internet or paper leaflets. The interviews were then studied and the researcher identified what particular information was wanted. This was then listed in a questionnaire which was sent to all eight participants, asking what information in the list they considered to be the most important to receive and in what form.The research study showed how the participants felt there was very little information available to them about CRPS. This meant that is was difficult to get help from experts in the condition. They described how they frequently had to find out information about CRPS themselves and often needed to take this information to health professionals who were not familiar with CRPS. The participants mostly used the internet to find out information about CRPS but this information was often confusing and difficult to find. They described wanting accurate, honest information about CRPS and the possible outcome of having the condition. They felt this would help them approach treatment in the right way. Talking to others with CRPS was described as sometimes being helpful but could also cause fear for the future. Being able to access reliable information was important and they would like to get this from health professionals directly. There was also a need for information on how to access specialists in CRPS.