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

scientific article published on 19 December 2018

A review of quality of life themes in Duchenne muscular dystrophy for patients and carers is …
instance of (P31):
scholarly articleQ13442814
review articleQ7318358

External links are
P356DOI10.1186/S12955-018-1062-0
P932PMC publication ID6299926
P698PubMed publication ID30567556

P50authorLesley UttleyQ88076634
P2093author name stringJohn Brazier
Jill Carlton
Helen Buckley Woods
P2860cites workSelf-reported quality of life of young children with conditions from early infancy: a systematic reviewQ26991475
Dependence on care experienced by people living with Duchenne muscular dystrophy and spinal cord injuryQ30413553
What factors influence parents' perception of the quality of life of children and adolescents with neurocardiogenic syncope?Q33167185
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Health-related quality of life in asthmaQ33920218
Participation in daily life activities and its relationship to strength and functional measures in boys with Duchenne muscular dystrophyQ34017294
The level of agreement between child self-reports and parent proxy-reports of health-related quality of life in boys with Duchenne muscular dystrophyQ34076138
Assessment of health status and quality of life outcomes for children with asthmaQ34245769
The relationship between sexual function and quality of sleep in caregiving mothers of sons with duchenne muscular dystrophyQ34286202
Measuring quality of life in mental health: are we asking the right questions?Q34473382
Psychological and practical difficulties among parents and healthy siblings of children with Duchenne vs. Becker muscular dystrophy: an Italian comparative studyQ35206606
Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issuesQ35627969
Living with muscular dystrophy: health related quality of life consequences for children and adultsQ35846836
A mixed methods study of age at diagnosis and diagnostic odyssey for Duchenne muscular dystrophyQ36116720
Quality of life of people with mental health problems: a synthesis of qualitative researchQ36585098
Quantifying the burden of caregiving in Duchenne muscular dystrophyQ36879404
Mothers' psychological adaptation to Duchenne/Becker muscular dystrophyQ37058533
Health-related quality of life in patients with Duchenne muscular dystrophy: a multinational, cross-sectional studyQ37105702
Burden, professional support, and social network in families of children and young adults with muscular dystrophies.Q37269549
Comparison of child self-reports and parent proxy-reports on quality of life of children with attention deficit hyperactivity disorderQ37348253
Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial managementQ37640907
A systematic review, psychometric analysis and qualitative assessment of generic preference-based measures of health in mental health populations and the estimation of mapping functions from widely used specific measuresQ38214356
Development of a patient-reported outcome measure for upper limb function in Duchenne muscular dystrophy: DMD Upper Limb PROM.Q38965110
Participation and quality of life in children with Duchenne muscular dystrophy using the International Classification of Functioning, Disability, and HealthQ39623233
Health-related quality of life and functional changes in DMD: A 12-month longitudinal cohort study.Q39847054
Social/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in Europe.Q39869199
Factors Associated With Health-Related Quality of Life in Children With Duchenne Muscular DystrophyQ40917794
Self-reported quality of life and depressive symptoms in children, adolescents, and adults with Duchenne muscular dystrophy: a cross-sectional survey studyQ43616435
Identifying potential themes for the Child Amblyopia Treatment Questionnaire.Q43808100
Emotional impact of genetic trials in progressive paediatric disorders: a dose-ranging exon-skipping trial in Duchenne muscular dystrophyQ44202131
Health-related quality of life and its relation to disease severity in boys with Duchenne muscular dystrophy: satisfied boys, worrying parents--a case-control studyQ44914886
Pain experience, expression and coping in boys and young men with Duchenne Muscular Dystrophy - A pilot study using mixed methodsQ46212803
The relationship between quality of life and health-related quality of life in young males with Duchenne muscular dystrophy.Q47550375
The impact of Duchenne muscular dystrophy on familiesQ47572395
The quality of life in boys with Duchenne muscular dystrophy.Q47619107
Prevalence of fatigue, pain, and affective disorders in adults with duchenne muscular dystrophy and their associations with quality of lifeQ47737493
Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophyQ47778864
Psychosocial challenges in family caregiving with children suffering from Duchenne muscular dystrophyQ47835705
Quality of life in Duchenne muscular dystrophy: the disability paradoxQ47921447
Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular diseaseQ48018246
Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?Q48052516
Sleep disorders in boys with Duchenne muscular dystrophyQ48221219
Health-related quality of life in children and adolescents with Duchenne muscular dystrophyQ48360412
Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy.Q48525393
Quality of life in Duchenne muscular dystrophy: the subjective impact on children and parentsQ48693588
Quality of life of patients with Duchenne muscular dystrophy: from adolescence to young men.Q50201365
Health status of boys with Duchenne muscular dystrophy: a parent's perspective.Q51050441
The psychosocial impact of a progressive physical handicap and terminal illness (Duchenne muscular dystrophy) on adolescents and their families.Q51222188
Two perspectives of proxy reporting of health-related quality of life using the Euroqol-5D, an investigation of agreement.Q51876897
Working With Children to Develop Dimensions for a Preference-Based, Generic, Pediatric, Health-Related Quality-of-Life MeasureQ61457566
[Evaluation of the quality of life of children with Duchenne's progressive muscular dystrophy]Q80644300
Should patients have a greater role in valuing health states?Q82503705
Evidence-based path to newborn screening for Duchenne muscular dystrophyQ83749785
P275copyright licenseCreative Commons Attribution 4.0 InternationalQ20007257
P433issue1
P407language of work or nameEnglishQ1860
P921main subjectDuchenne muscular dystrophyQ1648484
quality of lifeQ13100823
P5008on focus list of Wikimedia projectScienceSourceQ55439927
P304page(s)237
P577publication date2018-12-19
P1433published inHealth and Quality of Life OutcomesQ15757755
P1476titleA review of quality of life themes in Duchenne muscular dystrophy for patients and carers
P478volume16

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cites work (P2860)
Q91770943Characterizing health state utilities associated with Duchenne muscular dystrophy: a systematic review
Q89928444Life expectancy at birth in Duchenne muscular dystrophy: a systematic review and meta-analysis
Q98195499Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments
Q64111374Producing a preference-based quality of life measure for people with Duchenne muscular dystrophy: a mixed-methods study protocol

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