Development of a new quality of life measure for Duchenne muscular dystrophy using mixed methods: the DMD-QoL

PA Powell, J Carlton, D Rowen, F Chandler… - Neurology, 2021 - AAN Enterprises
Objective Based on concerns about existing patient-reported outcome measures (PROMs)
for assessing quality of life (QoL) in Duchenne muscular dystrophy (DMD), we describe the …

Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments

PA Powell, J Carlton, HB Woods, P Mazzone - Health and quality of life …, 2020 - Springer
Duchenne muscular dystrophy (DMD) is an inherited X-linked neuromuscular disorder. A
number of questionnaires are available to assess quality of life in DMD, but there are …

A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy

PA Powell, J Carlton - Quality of Life Research, 2023 - Springer
Purpose Duchenne muscular dystrophy (DMD) is a rare x-linked neuromuscular condition
predominantly affecting boys and men. There is a paucity of research qualitatively detailing …

Health‐related quality of life in patients with Duchenne muscular dystrophy: a multinational, cross‐sectional study

E Landfeldt, P Lindgren, CF Bell… - … Medicine & Child …, 2016 - Wiley Online Library
Aim To estimate health‐related quality of life (HRQOL) in patients with Duchenne muscular
dystrophy (DMD). Method HRQOL was assessed using the Health Utilities Index …

The relationship between quality of life and health‐related quality of life in young males with Duchenne muscular dystrophy

Y Wei, KN Speechley, G Zou… - … Medicine & Child …, 2017 - Wiley Online Library
Aim This study investigated the relationship between quality of life (QoL) and health‐related
quality of life (HRQ oL) and assessed factors other than health that contribute to differences …

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

L Uttley, J Carlton, HB Woods, J Brazier - Health and Quality of Life …, 2018 - Springer
Abstract Duchenne Muscular Dystrophy (DMD) is a severe, life-limiting and incurable
condition. However, studies estimating quality of life and those measuring actual quality of …

Self-reported quality of life and depressive symptoms in children, adolescents, and adults with Duchenne muscular dystrophy: a cross-sectional survey study

S Elsenbruch, J Schmid, S Lutz, B Geers… - …, 2013 - thieme-connect.com
Aim We aimed to address the impact of Duchenne muscular dystrophy (DMD) on self-
reported health-related quality of life (HRQOL) and depressive symptoms in different age …

Predictors of health-related quality of life in boys with Duchenne muscular dystrophy from six European countries

C Otto, BF Steffensen, AL Højberg, C Barkmann… - Journal of …, 2017 - Springer
Duchenne muscular dystrophy (DMD) is a progressive, genetically determined
neuromuscular disease that affects males and leads to severe physical disability in early …

[HTML][HTML] Health-related quality of life and functional changes in DMD: a 12-month longitudinal cohort study

S Messina, GL Vita, M Sframeli, S Mondello… - Neuromuscular …, 2016 - Elsevier
In Duchenne muscular dystrophy (DMD) little has been reported on the association between
clinical outcome measures and patient health-related quality of life (HRQOL) tools. Our study …

Measuring quality of life in muscular dystrophy

CM Bann, RT Abresch, B Biesecker, KC Conway… - Neurology, 2015 - AAN Enterprises
Objectives: The objectives of this study were to develop a conceptual model of quality of life
(QOL) in muscular dystrophies (MDs) and review existing QOL measures for use in the MD …