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Social participation of adult patients with spinal muscular atrophy: Frequency, restrictions, satisfaction, and correlates
Author(s) -
Kruitwagenvan Reenen Esther T.,
Pol Ludo,
Schröder Carin,
Wadman Renske I.,
Berg Leonard H.,
VisserMeily Johanna M. A.,
Post Marcel W. M.
Publication year - 2018
Publication title -
muscle and nerve
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.025
H-Index - 145
eISSN - 1097-4598
pISSN - 0148-639X
DOI - 10.1002/mus.26201
Subject(s) - feeling , sma* , psychology , depression (economics) , life satisfaction , physical medicine and rehabilitation , analysis of variance , physical therapy , clinical psychology , medicine , social psychology , mathematics , combinatorics , economics , macroeconomics
: 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