Lived experience perspectives of persons with complex regional pain syndrome: a survey study of the history of their condition, treatments and functional outcomes.

BACKGROUND

Complex Regional Pain Syndrome (CRPS) is a rare, chronic pain disorder that can have a devastating impact. Its cause remains unclear and debate over treatment strategies continues. The aim of the study was to utilise patient-reported outcomes to aid in the further evaluation of treatment options.

METHOD: An online survey was distributed with ethical approval to members of a CRPS charity. The Checklist for Reporting Results of Internet E-Surveys was implemented. Adults who met the patient-reported aspect of the Budapest Criteria were included (non-validated). Functional scores were reported using the shortened Disabilities of the Arm, Shoulder and Hand outcome measurement tool (QuickDASH) and Lower Extremity Functional Scale (LEFS). Participants completed a pre-injury score, a score related to injury and a score related specifically to CRPS symptoms. Respondents were also asked to rate a number of pharmacological and non-pharmacological treatments for CRPS.

RESULTS

Respondents were mostly female (87%, 447/514) with a mean age of 49 years (SD 13). 69% (354/514) reported trauma as the inciting event. Anxiety (55%, 283/514) was the most commonly reported co-morbidity. Opioids (72%, 258/358) and Physical Therapy/Rehabilitation (63%, 281/444) were reported as the most beneficial (used by >10% of respondents) pharmacological and non-pharmacological therapies respectively. Median CRPS functional scores were significantly worse than scores relating to the injury alone, for both QuickDASH (56 (IQR 36-77) versus 77 (IQR 61-91), p < .001) and LEFS (20 (IQR 8-40) versus 7 (IQR 3-17), p < .001).

CONCLUSION

We present the first study using validated patient-reported outcome measures of limb-specific function in a solely CRPS population. These data quantify the devastating impact of CRPS and help make its prevention and treatment a priority amongst those who encounter it. The treatment data should inform future research, especially in successful therapies that were less commonly utilised.