Abstract
Introduction: Complex Regional Pain Syndrome (CRPS) is a pain condition that usually develops following an injury, most commonly affecting the upper limb in adults. Studies have identified the unique challenges of upper limb disability and continue to explore CRPS treatment options. However, few have identified influential aspects of healthcare from a lived experience perspective, and none specific to upper limb CRPS or the New Zealand (NZ) context. This study aimed to explore peoples’ experiences of healthcare for upper limb CRPS in NZ, in order to provide recommendations for healthcare pathways.
Methods: Three studies were conducted: a) an interview study with people in the Wellington Region about their experiences of diagnosis and treatment for upper limb CRPS; b) a NZ-wide survey study built from and generalising interview themes; and c) an integrative review synthesising and critically appraising evidence for non-pharmacological management of upper limb CRPS. Findings were merged to provide recommendations for NZ upper limb CRPS management pathways.
Findings: Interview participants’ (n=13, 11 female, mean age 55 years) experiences of receiving a CRPS diagnosis were primarily influenced by the timing of the diagnosis, the way it was presented, and the sufficiency of any accompanying information. Experiences of CRPS treatment were primarily influenced by the information participants were provided about it, their relationship with the treatment provider, the timeliness or ease of access to treatment, and the relationship between treatment and how they wished to live their lives.
Seventy-five people completed the survey. Most were female (91%), middle-aged (mean 50 years, SD 13), and European (90%). Fracture (53%) and planned surgery (28%) were the primary inciting events. Nearly half of the participants (43%) identified diagnosis as occurring within 1-3 months of symptom onset. However, 61% indicated that diagnosis came too late, and 81% reported that they needed more accompanying information. Support and guidance were identified as the most valuable aspects of healthcare (72%). Accessing required treatment (60%) and getting this at the right time 61%) was rated as difficult.
The integrative review included 38 studies. It identified mixed quality evidence for non-pharmacological management of upper limb CRPS, indicating a need for careful clinical reasoning rather than a one-size-fits-all approach. The review identified most evidence for treatment consisting of movement, desensitisation, and graded functional activity. Current evidence lacks consideration of the psychosocial and functional impacts of upper limb CRPS.
Conclusion: Findings infer that the healthcare experiences of people with upper limb CRPS are influenced by having timely access to sufficient information about CRPS, the responses of healthcare professionals, and the complexity of navigating healthcare systems. It is recommended that people with upper limb CRPS are provided early information about CRPS, their experiences validated, and that pathways through NZ healthcare systems are simplified, in order to improve early and ongoing CRPS management. The Prepare, Consider, Address, Unify, and Equip framework is suggested to guide the implementation of these recommendations. Future research should explore the experiences of healthcare providers in diagnosing and managing upper limb CRPS to further identify areas for healthcare pathway
development.