Building the evidence for CRPS research from a lived experience perspective.

Background and aims Pain is known to be a subjective experience yet the majority of pain related research does not address the lived experience of the condition. Difficult to diagnose, Complex Regional Pain Syndrome (CRPS) is often poorly managed. The aim of this paper was to identify and synthesise the currently available literature on experiences of living with chronic pain in order to understand where and how CRPS research may be best situated in the future. Methods A narrative review was performed and ProQuest, EBSCO, Informit, Scopus/Science Direct and Web of Science, Medline, CINHAL and Google Scholar were searched in order to identify the literature from 1998 until 2015. 301 papers were identified of which 197 described the lived experience of chronic pain conditions. 12 papers were examined closely to determine the experience of living with CRPS or a similar chronic pain condition that does not have a definite pain origin such as cancer or endometriosis. Results Known understandings of pain were identified and a model was developed depicting the lived experience of chronic pain starting with loss of the former healthy, pain free self and culminating in acceptance of the condition. Major themes identified were disbelief/invisibility of pain, loss, coping with a non-compliant/constant painful body, self-management and alleviating pain/treatment. The review also found that there is no peer-reviewed published literature on the lived experience of CRPS. Conclusions Little is known about the lived experience of CRPS. There appears to be a clear indication that research needs to be conducted into CRPS from a lived experience perspective in order to provide information to patients, the general public, health practitioners and policy makers of previously unknown characteristics of this condition which may improve health outcomes for this patient cohort. It has been identified that patients and their families should be active participants in education of health practitioners and in providing information to inform the development of National Pain Strategies currently being devised throughout the world. Implications Research into the lived experience of chronic pain conditions, and CRPS in particular, can help to provide information to enhance understanding enabling national pain strategies and future treatment guidelines strategies to be devised appropriately.