306 Living with complex regional pain syndrome: identifying the bio-psychosocial impacts

Abstract

Background: Complex regional pain syndrome (CRPS) is a persistent pain condition characterised by extreme pain and sensory, motor and autonomic disturbances, disrupted body perception and neglect or dis-ownership of the affected body part. While the signs and symptoms of CRPS are well documented, the condition has significant wider bio-psychosocial consequences for patients, including poor psychological health, poor functional ability and reduced quality of life. Having a greater understanding of these impacts may be important in helping healthcare professionals in designing multidisciplinary CRPS services. Methods: Participants (≤ 18 years) who met, or had met, Budapest diagnostic criteria for CRPS were recruited via 10 centres across eight European and North American countries. A two-round Delphi-based study was conducted with the aim of identifying patients' definition of recovery, including asking participants to complete the question “I would consider myself recovered from CRPS if≥ ≥ ≥”. Results from this work have been reported previously, however, the open-text responses elicited additional information beyond the scope of the original research question. The current study presents results from a secondary qualitative data analysis, employing thematic analysis to identify the wider bio-psychosocial impacts of the condition. Results: Data were received from 347 participants (80% female, 91% non-recovered, 53% disease duration ≤ 3 years). Five superordinate themes were identified: life is less, identity impacted, physical consequences, psychological distress, and coping strategies. Four subordinate themes within life is less (restricted participation, social relationships, freedom and independence, then and now) describe how life with CRPS is perceived to be of lower quality, less enjoyable and more limited in comparison to life before the condition; independence is reduced, and social relationships are adversely affected. Subordinate themes relating to identity were concerned with negative impacts on self-esteem, appearance and societal roles. Participants described decrements in self-image and effects on their sense of identity. The physical consequences of CPRS were evident in participants' descriptions of symptoms and physical changes beyond those assessed by the CPRS diagnostic criteria. Fatigue, poor sleep and cognition, impaired motor skills, and medication side-effects were common themes. Subordinate themes within psychological distress were concerned with the impact of CRPS on mood and affect, with negative emotional states clearly illustrated. More positively, the data suggested that participants were creative and pragmatic about how they cope with living with CRPS, reporting a variety of practical and psychological strategies to assist them in meeting the challenges of this disabling condition. Conclusion: This study tells a compelling story about the broad consequences of living with CRPS and the current findings illustrate the multi-dimensional nature of its bio-psychosocial impacts. Better understanding of the lived experience of CRPS patients can help inform holistic treatment and rehabilitation approaches.