Experiences of diagnosis and treatment for upper limb Complex Regional Pain Syndrome: a qualitative analysis.

INTRODUCTION: Complex Regional Pain Syndrome (CRPS) most frequently affects the upper limb, with high associated disability. Delays to diagnosis and appropriate treatment can adversely impact prognosis and quality of life, but little is known about the healthcare experiences of people with CRPS. This study aimed to explore lived experiences of diagnosis and treatment for people with upper limb CRPS. METHODS: Participants were recruited through online support groups and multiple public and private healthcare settings in the Greater Wellington Region, New Zealand. Semi-structured interviews were conducted with participants who had experienced upper limb CRPS for more than three months and less than three years. Interviews were transcribed verbatim and analysed using reflexive thematic analysis. RESULTS: Thirteen participants (11 female, 2 male) aged between 43 and 68 years were interviewed. Duration of CRPS ranged from 7 months to 2.5 years. Five themes were identified. Participants initially engaged in healthcare out of a desire to return to being the person they were before having CRPS. Three interacting experiences epitomised the overall healthcare experience: (1) not knowing what is going on, (2) not being taken seriously, and (3) healthcare as adding another layer of load. Meanwhile, participants used multiple approaches in an attempt to not let CRPS stop them from continuing to live their lives. CONCLUSIONS: Participants in this study felt that credible information, validation, and simplification from healthcare providers and systems would support their process of navigating towards a meaningful life and self-concept in the presence of CRPS.

Person-centred management of upper limb complex regional pain syndrome: an integrative review of non-pharmacological treatment.

Introduction: Complex Regional Pain Syndrome (CRPS) is most common in the upper limb and associated with high disability. The purpose of this review was to critically appraise and synthesise literature exploring non-pharmacological treatment for upper limb CRPS, to guide upper-limb-specific management. Methods: Using an integrative review methodology, 13 databases were searched to identify all published studies on non-pharmacological management of upper limb CRPS. The Crowe Critical Appraisal Tool was used to provide quality ratings for included studies, and analysis employed a qualitative descriptive approach. Results: From 236 abstracts reviewed, 113 full texts were read, and 38 articles selected for data extraction. Designs included single case (n = 14), randomised controlled trial (n = 8), prospective cohort (n = 8), case series (n = 4), retrospective (n = 3), and mixed methods (n = 1). Interventions were categorised as sensory retraining (n = 13), kinesiotherapy (n = 7), manual therapies (n = 7), physical modalities (n = 6), and interdisciplinary treatment programmes (n = 5). All studies measured pain intensity, and most (n = 24) measured physical parameters such as strength, movement, or perceptual abilities. Few measured patient-rated function (n = 13) or psychological factors (n = 4). Quality ratings ranged from 30% to 93%, with a median of 60%. Conclusion: Methodological quality of non-pharmacological treatment approaches for upper limb CRPS is overall poor. Movement, desensitisation, and graded functional activity remain the mainstays of intervention. However, despite the impact of CRPS on wellbeing and function, psychological factors and functional outcomes are infrequently addressed. Further robust research is required to determine which aspects of treatment have the greatest influence on which symptoms, and when and how these should be introduced and progressed.