Social participation of adult patients with spinal muscular atrophy: frequency, restrictions, satisfaction and correlates
Publication date
2018-12
Authors
Kruitwagen-van Reenen, Esther Th
van der Pol, Ludo
Schröder, C. P.
Wadman, Renske I
van den Berg, Leonard
Visser-Meilij, Anne
Post, Marcel
Editors
Advisors
Supervisors
Document Type
Article
Metadata
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License
taverne
Abstract
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.
Keywords
Journal Article, social participation, SMA, activities of daily living, adults, social engagement, satisfaction, Motor Skills/physiology, Correlation of Data, Humans, Middle Aged, Male, Patient Satisfaction, Young Adult, Social Participation, Respiration, Artificial/methods, Adult, Female, Surveys and Questionnaires, Aged, Retrospective Studies, Outcome Assessment, Health Care, Muscular Atrophy, Spinal/physiopathology, Taverne, Clinical Neurology, Physiology (medical), Cellular and Molecular Neuroscience, Physiology, Journal Article
Citation
Kruitwagen-van Reenen, E T, van der Pol, L, Schröder, C, Wadman, R I, van den Berg, L H, Visser-Meily, J M A & Post, M W M 2018, 'Social participation of adult patients with spinal muscular atrophy : frequency, restrictions, satisfaction and correlates', Muscle & Nerve, vol. 58, no. 6, pp. 805-811. https://doi.org/10.1002/mus.26201