New Zealand Survey of the Diagnosis and Treatment Experiences of People With Upper Limb Complex Regional Pain Syndrome.

BACKGROUND

Complex Regional Pain Syndrome (CRPS) in the upper limb is a rare and challenging pain condition that usually develops following an injury. No studies have identified influential aspects of healthcare specific to upper limb CRPS or the New Zealand (NZ) healthcare context. The aim of this study was to explore people's experiences of diagnosis and treatment for upper limb CRPS in NZ.

METHODS

An online survey was designed from themes identified in a preceding interview study. Participants were recruited from healthcare services NZ-wide, social media, and through online advertisements. Eligibility criteria were: 18 years or older, diagnosis of upper limb CRPS for more than 3 months and less than 3 years, and reporting high levels of ongoing pain and three or more CRPS symptoms over the past 48 h. Data were exported to SPSS software for descriptive analyses.

RESULTS

Seventy-five people participated in the survey (91% female, mean age 50 years, SD 13). Nearly half of participants (43%) identified being diagnosed within 1-3 months of symptom onset. Most (81%) desired more accompanying information. Support and guidance were identified as the most valuable aspects of healthcare (72%). Participants reported difficulty accessing required treatment (60%) at the right time (61%). Nearly all participants (98%) perceived that having easy ongoing access to healthcare was important.

CONCLUSIONS

People with upper limb CRPS prioritize early access to information and support to navigate complex systems. Updated online information about region-specific CRPS treatment options needs to be made readily available to both people with CRPS and healthcare professionals.