PMID: 11931326Apr 5, 2002Paper

Duchenne muscular dystrophy--parental perceptions

Clinical Pediatrics
J E BothwellJ MacSween

Abstract

Quality of life and availability of services are important for boys with Duchenne muscular dystrophy (DMD) and their families. Families attending our neuromuscular clinic completed a questionnaire on parental perception regarding the importance of services, health issues, and quality of life issues both "now" and "in the future." Eighty-nine percent of the families (31/35) completed questionnaires. Services and health issues related to prolonging ambulation were most important, especially for the parents of younger boys. Mental health issues such as social isolation, anger, and depression were very important, particularly for the families of older boys and were anticipated to be more important in the future. Pediatricians should be aware of both the immediate needs of families to meet the physical and emotional challenges of DMD and the increasing requirement to address the social needs of these patients and their families as the boys become older.

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Citations

Aug 26, 2006·Journal of Rehabilitation Medicine·François BoyerJean-Luc Novella
Mar 12, 2011·Journal of Paediatrics and Child Health·Paula BrayJoshua Burns
Aug 29, 2013·International Journal of Qualitative Studies on Health and Well-being·Miku Yamaguchi, Machiko Suzuki
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Dec 2, 2014·Neuromuscular Disorders : NMD·Miku Yamaguchi, Machiko Suzuki
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Apr 18, 2009·Pediatrics International : Official Journal of the Japan Pediatric Society·Izumi KuratsuboNaomi Kondo
Nov 15, 2020·Muscle & Nerve·Donovan J LottKrista Vandenborne
Feb 18, 2015·Pediatrics·Paul A RomittiUNKNOWN MD STARnet

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