Association Between Health-Related Quality of Life and Motor Function in Ambulant and Nonambulant Duchenne Muscular Dystrophy Patients.

Duchenne muscular dystrophy Pediatric Quality of Life Inventory (PedsQL) clinical outcome measures health-related quality of life motor function

Journal

Journal of child neurology
ISSN: 1708-8283
Titre abrégé: J Child Neurol
Pays: United States
ID NLM: 8606714

Informations de publication

Date de publication:
12 2019
Historique:
pubmed: 7 8 2019
medline: 6 10 2020
entrez: 7 8 2019
Statut: ppublish

Résumé

This cross-sectional study assessed health-related quality of life (HRQOL) in ambulant and nonambulant patients with Duchenne muscular dystrophy, and explored the association between health-related quality of life and clinically assessed motor function. The Pediatric Quality of Life Inventory (PedsQL) Generic Core Scale and PedsQL Neuromuscular module were completed by 34 parent-child dyads. Association between PedsQL scores and overall motor abilities and the transfers and standing posture domain measured by the Motor Function Measure were examined. Child self-reported and parent proxy-reported mean PedsQL scores for children with Duchenne muscular dystrophy were lower than those for healthy children for the physical and psychosocial health-related quality of life. Fifty-six percent of patients reported clinically impaired psychosocial health-related quality of life scores. Several aspects of the generic and disease-specific health-related quality of life in patients with Duchenne muscular dystrophy were positively associated to overall motor function and transfers and standing posture domain. Associations remained stable when adjusted for age and corticosteroid use. The Motor Function Measure is clinically meaningful in the context of a patient's day-to-day life.

Identifiants

pubmed: 31385745
doi: 10.1177/0883073819865681
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

873-885

Auteurs

Vanya Gocheva (V)

Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB), University of Basel, Basel, Switzerland.

Simone Schmidt (S)

Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB), University of Basel, Basel, Switzerland.
Department of Neurology, General Hospital Hietzing with Neurological Center Rosenhügel, Vienna, Austria.

Anna-Lena Orsini (AL)

Division of Neurology, University Hospital Basel, University of Basel, Basel, Switzerland.

Patricia Hafner (P)

Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB), University of Basel, Basel, Switzerland.
Division of Neurology, Medical University Clinic, Kantonsspital Baselland, Bruderholz, Switzerland.

Sabine Schaedelin (S)

Department of Clinical Research, Clinical Trial Unit, University Hospital Basel, Basel, Switzerland.

Nicole Rueedi (N)

Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB), University of Basel, Basel, Switzerland.

Peter Weber (P)

Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB), University of Basel, Basel, Switzerland.

Dirk Fischer (D)

Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB), University of Basel, Basel, Switzerland.
Division of Neurology, Medical University Clinic, Kantonsspital Baselland, Bruderholz, Switzerland.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH