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

Journal of Child Neurology
Vanya GochevaDirk Fischer

Abstract

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 c...Continue Reading

References

Sep 1, 1979·General Hospital Psychiatry·D C BuchananW Olson
Apr 5, 2002·Clinical Pediatrics·J E BothwellJ MacSween
Nov 18, 2003·Ambulatory Pediatrics : the Official Journal of the Ambulatory Pediatric Association·James W VarniDouglas Skarr
Nov 25, 2003·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Catherine AcquadroUNKNOWN PRO Harmonization Group
Jun 18, 2005·American Journal of Respiratory and Critical Care Medicine·Malcolm KohlerKonrad E Bloch
Aug 18, 2005·Neuromuscular Disorders : NMD·Carole BérardUNKNOWN MFM Collaborative Study Group
Jun 13, 2006·European Journal of Paediatric Neurology : EJPN : Official Journal of the European Paediatric Neurology Society·Joanne DarkeHelen McConachie
Oct 28, 2006·Muscle & Nerve·Jerry R MendellR Rodney Howell
Dec 14, 2006·Journal of Developmental and Behavioral Pediatrics : JDBP·Veronica J HintonShana E Cyrulnik
Jan 9, 2008·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Maite SolansLuis Rajmil
Jun 4, 2008·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Penney UptonChristine Eiser
Dec 1, 2009·Lancet Neurology·Katharine BushbyUNKNOWN DMD Care Considerations Working Group
Feb 9, 2010·Pediatrics International : Official Journal of the Japan Pediatric Society·Oznur YilmazEbru Turan
Aug 24, 2010·European Journal of Paediatric Neurology : EJPN : Official Journal of the European Paediatric Neurology Society·Joy ReadM Elena Garralda
Apr 13, 2011·Journal of Child Neurology·Ilaria BaiardiniFulvio Braido
Mar 28, 2012·Annals of Neurology·Jerry R MendellRobert B Weiss
Apr 3, 2013·Neuroscience and Biobehavioral Reviews·Wanda M SnowLorna S Jakobson
Oct 21, 2015·Developmental Medicine and Child Neurology·Erik LandfeldtKatharine Bushby
Feb 27, 2016·Neuromuscular Disorders : NMD·Sonia MessinaEugenio Mercuri
Sep 2, 2015·Journal of Neuromuscular Diseases·Yi WeiCraig Campbell
Dec 19, 2016·Journal of Paediatrics and Child Health·Madeleine S DidsburyGermaine Wong
Oct 3, 2018·Pediatrics·Mary K ColvinNorbert Weidner

❮ Previous
Next ❯

Software Mentioned

PedsQL

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.