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Reliability of telephone administration of the PedsQL Generic Quality of Life Inventory and Neuromuscular Module in spinal muscular atrophy (SMA).
- Source :
-
Neuromuscular disorders : NMD [Neuromuscul Disord] 2010 Mar; Vol. 20 (3), pp. 162-5. Date of Electronic Publication: 2010 Jan 13. - Publication Year :
- 2010
-
Abstract
- Clinical research visits are challenging for people with SMA because of limited mobility and intercurrent illnesses. Missing data threaten the validity of research results. Obtaining outcomes remotely would represent a solution. To evaluate reliability of telephone administration of the PedsQL Pediatric Generic Core Quality of Life Inventory 4.0 (Generic) and Neuromuscular Module 3.0 (NM) in SMA, we recruited 21 participants of a Natural History Study for telephone administration of both modules no more than 7 days before or after an in-person study visit. We found excellent reliability between telephone and in-person administration of both modules with the NM slightly better than the Generic. Reliability of the child and parent forms was similar. We concluded that both modules can be administered reliably over the telephone to SMA patients and caregivers, expanding the utility of these tools in clinical trials. Notably, telephone administration is reliable in children as young as 8 years.<br /> (Copyright 2010. Published by Elsevier B.V.)
- Subjects :
- Adolescent
Child
Child, Preschool
Female
Humans
Interpersonal Relations
Male
Parents psychology
Reproducibility of Results
Self Concept
Statistics as Topic
Surveys and Questionnaires
Outcome Assessment, Health Care methods
Psychometrics methods
Quality of Life
Spinal Muscular Atrophies of Childhood diagnosis
Spinal Muscular Atrophies of Childhood psychology
Telephone
Subjects
Details
- Language :
- English
- ISSN :
- 1873-2364
- Volume :
- 20
- Issue :
- 3
- Database :
- MEDLINE
- Journal :
- Neuromuscular disorders : NMD
- Publication Type :
- Academic Journal
- Accession number :
- 20074950
- Full Text :
- https://doi.org/10.1016/j.nmd.2009.12.002