Occurrence of symptoms in different stages of Duchenne muscular dystrophy and their impact on social participation

Autor: Jan J.G.M. Verschuuren, Jos G.M. Hendriksen, Lotte Heutinck, Edith H. C. Cup, Erik H. Niks, Imelda J. M. de Groot, Yvonne D. Krom, Michèl A.A.P. Willemsen, Saskia L.S. Houwen-van Opstal, Merel Jansen
Rok vydání: 2021
Předmět:
Zdroj: Muscle & Nerve, 64(6), 701-709. WILEY
Muscle and Nerve, 64, 6, pp. 701-709
Muscle and Nerve, 64, 701-709
ISSN: 1097-4598
0148-639X
Popis: Contains fulltext : 244841.pdf (Publisher’s version ) (Open Access) INTRODUCTION/AIMS: As life expectancy improves for patients with Duchenne muscular dystrophy (DMD), new symptoms are likely to arise. This aims of this study are: (1) to explore the prevalence of a broad variety of symptoms in the various stages of DMD (with and without steroid use); (2) to explore the prevalence of common secondary diagnoses; and (3) to evaluate the social participation level of patients with DMD older than 16 y of age; and to explore correlations between social participation and symptoms. METHODS: A cross-sectional self-report questionnaire, including questions on functional level and health status, as well as a standardized participation scale was distributed among Dutch patients with DMD. RESULTS: Eighty-four male patients with a mean age of 22.0 (SD = 10.0) y were enrolled. The most prevalent and limiting symptoms were difficulty coughing (58%), coldness of hands (57%), contractures (51%), stiffness (49%), fatigue (40%), myalgia (38%), and low speech volume (33%). Prevalent secondary diagnoses included cardiac disease (14%), neurobehavioral diagnosis (13%), low blood pressure (13%), and arthrosis (5%). Social participation correlated negatively with coldness of hands (r = - .29; P
Databáze: OpenAIRE