Social participation of adult patients with spinal muscular atrophy: Frequency, restrictions, satisfaction, and correlates

Introduction: In this study we assessed social participation in 62 adults with spinal muscular atrophy (SMA) types 1c-4. Methods: The outcome measure used was the Utrecht Scale of Evaluation Rehabilitation-Participation (USER-P) with Frequency, Restrictions, and Satisfaction scores, and a hierarchical regression analysis. Results: Early-onset (types 1, 2, and 3a) and late-onset (types 3b and 4) SMA patients reported similar frequency and satisfaction scores. "Age," "motor skills," "pain," and "feelings of depression" correlated with frequency; "motor skills" and "feelings of depression" correlated with restrictions; and "level of education," "fatigue," and "feelings of depression" correlated with satisfaction. "Motor skills" and "feelings of depression" explained 33% of variance in frequency of participation. "Motor skills" explained 26% of variance of restrictions in participation. "Fatigue" and "feelings of depression" explained 50% of variance in satisfaction with participation. Discussion: Motor skills, feelings of depression and fatigue are correlates of participation in daily life. This knowledge can be used to optimize care for SMA patients. Muscle Nerve 58:805-811, 2018