P1.36 Evaluation of the quality of life in patients with Duchenne Muscular Dystrophy

Simon, Valdecir Antonio; Simon, Margarete Andreozzi Vaz Pereira; Godoy, A.J.; Resende, M.B.D.; Zanoteli, Edmar; Reed, Umbertina Conti

doi:10.1016/j.nmd.2011.06.796

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“…Literature reporting quality of life (QoL) of children with DMD is conflicting. Some studies report reduced QoL [2, 7], whilst others find no difference between QoL of children with DMD and healthy children [9–11]. However, it is possible that the findings of such studies were influenced by the way in which QoL was measured within the studies themselves.…”

Section: Introductionmentioning

confidence: 99%

A review of quality of life themes in Duchenne muscular dystrophy for patients and carers

Uttley

Carlton

Woods

et al. 2018

Health Qual Life Outcomes

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Duchenne Muscular Dystrophy (DMD) is a severe, life-limiting and incurable condition. However, studies estimating quality of life and those measuring actual quality of life in people living with DMD vary considerably. This discrepancy indicates potential difficulties with assessing quality of life using common generic quality of life instruments in this rare and unique population. This study sought to document the range of themes relevant to quality of life for people with DMD by examining the published literature and additionally to investigate the themes that are relevant to quality of life for carers and the wider family. Eligible studies for the review were primary studies of any study design that reported outcomes or themes relevant to quality of life for either people with DMD, their families, or both. A review of studies identified from searching medical bibliographic sources between 2010 and 2016 found 45 relevant published studies. A thematic framework is proposed to categorise the themes identified into: i. physical; ii. psychological; iii. Social; iv. well-being domains. A final “other” domain was included to encompass themes identified from the literature that are not covered by commonly used quality of life instruments. The rich variety of themes identified from the review highlights that DMD has a complex quality of life profile which is not currently captured by standard quality of life tools that are commonly employed in the healthcare setting. The findings also highlight that the resulting impact on the quality of life of carers and wider family of people with DMD requires consideration.Electronic supplementary materialThe online version of this article (10.1186/s12955-018-1062-0) contains supplementary material, which is available to authorized users.

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