Outcome in young adults who were diagnosed with complex regional pain syndrome in childhood and adolescence

INTRODUCTION: Complex regional pain syndrome (CRPS) is a neuropathic pain condition of unknown etiology. Little is known of long-term outcomes of young adults who were diagnosed with CRPS as children. METHODS: In this study, surveys were mailed to adults who were treated for childhood CRPS at the Lucile Packard Children's Hospital between 1994 and 2018. Completed surveys were analyzed for pain symptoms. Health-related quality-of-life surveys, the Optum SF-8, were analyzed based on norm-based scoring. RESULTS: This study had a 50% response rate. Patients were treated with physical and occupational therapy, peripheral or sympathetic nerve blocks, medication for neuropathic pain, and psychotherapy. Sixty-eight percent of the subjects reported pain. Each 1-year increase in the patient's age at the time of CRPS diagnosis increased the odds of having at least mild pain as an adult by 61% (P = 0.005). Most patients had slightly lower quality-of-life scores than the US population average in both the mental component score (43.4, 95%, confidence interval 3.4) and the physical component score (44.4, 95%, confidence interval 3.3). CONCLUSIONS: Young adults in our sample had long-lasting pain symptoms. More than two-thirds of adult patients reported some degree of pain, and these patients had a lower quality of life. Encouraging was that the majority did not have CRPS spreading to other areas, and their pain did not warrant further treatment. Understanding long-term outcomes may lead to risk stratification earlier in the disease to improve future quality of life.