RESUMO
OBJECTIVE: To develop recommendations regarding outcome measures and topics to be addressed in rehabilitation for persons with neuralgic amyotrophy (NA), this study explored which functions and activities are related to persisting pain in NA and which questionnaires best capture these factors. DESIGN: A questionnaire-based survey from 2 cross-sectional cohorts, one of patients visiting the neurology outpatient clinic and a cohort seen at a multidisciplinary plexus clinic. SETTING: Two tertiary referral clinics based in the Department of Neurology and Rehabilitation from a university medical center provided the data. PARTICIPANTS: A referred sample of patients (N=248) with either idiopathic or hereditary NA who fulfilled the criteria for this disorder, in whom the last episode of NA had been at least 6 months ago and included brachial plexus involvement. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Two custom clinical screening questionnaires were used as well as the Shoulder Rating Questionnaire-Dutch Language Version, the Shoulder Pain and Disability Index (SPADI), the Shoulder Disability Questionnaire (SDQ), and Overall Disability Sum Score. RESULTS: The survey confirms the high prevalence of persisting pain and impairments. More than half of the patients were restricted by pain, while in those without pain 60% experienced residual paresis. Correlations show an intimate relation between pain, scapular instability, problems with overhead activities, and increased fatigability. A standard physical therapy approach was ineffective or aggravated symptoms in more than 50%. CONCLUSIONS: Pain and fatigue are strongly correlated to persisting scapular instability and increased fatigability of the affected muscles in NA. Our results suggest that an integrated rehabilitation approach is needed in which all of these factors are addressed. We further recommend using the SPADI and SDQ in future studies to evaluate the natural course and treatment effects in NA.