Quality of life in adults with childhood-onset of Complex Regional Pain Syndrome type I

INTRODUCTION: The clinical presentation of Complex Regional Pain Syndrome type I (CRPS I) in children differs compared to the presentation in adults. Reported results of treatment of CRPS I in children are usually more favourable and seem better than the reported treatment of adults with CRPS I. We investigated the quality of life (QoL) in adults who have been treated for childhood-onset CRPS I.

METHODS: We performed a retrospective chart review on signs, symptoms and treatment of all patients, seen and treated for CRPS I in childhood (age <16 years). At one time point a survey was sent by mail to all adult patients with onset CRPS I in childhood with a postal reminder after one month. The first part of the survey consisted of questions focused on the experience of chronic pain and other current complaints in the affected extremity. The second part consisted of a generic-health-related quality of life instrument (SF-36).

RESULTS: Forty-two patients (75%) responded to our survey. The median follow-up period was 12 years (SD 4.7; range 2-22). Fifty-two percent of all patients complained about pain at the time of follow-up. Of the 12 symptoms and signs, 4 are improved, 1 is worse and the remainder are unchanged. Fifteen patients experienced one or more documented relapses. General health and physical functioning (2 out of 8 scales on the SF 36) were lower in patients compared to those of the literature.

CONCLUSION: In contrast to the literature, the prognosis of childhood-onset CRPS I seems less favourable than usually reported, and is comparable to the prognosis of the adult-onset CRPS I in view of a decreased quality of life and a large relapse percentage (33%) at long-term follow-up.