Social participation of adult patients with spinal muscular atrophy: frequencies, restrictions, satisfaction and correlating factors.:

A cc ep te d A rti cl e This article is protected by copyright. All rights reserved. Social participation of adult patients with spinal muscular atrophy: frequencies, restrictions, satisfaction and correlating factors. Introduction We assessed social participation in 62 adults with spinal muscular atrophy (SMA) types 1c-4. Methods Outcome measure: Utrecht Scale of Evaluation Rehabilitation-Participation (USERP) with Frequency, Restrictions and Satisfaction scores. Hierarchical regression analysis. Results Early (type 1,2,3a) and late onset (type 3b,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.