Reliability of telephone administration of the PedsQL™ Generic Quality of Life Inventory™ and Neuromuscular Module™ in spinal muscular atrophy (SMA)

Sally Dunaway, Jacqueline Montes, Megan Montgomery, Vanessa Battista, Benjamin Koo, Jonathan Marra, Darryl C. De Vivo, Linda S. Hynan, Susan T. Iannaccone, Petra Kaufmann

Research output: Contribution to journalArticle

16 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)162-165
Number of pages4
JournalNeuromuscular Disorders
Volume20
Issue number3
DOIs
StatePublished - Mar 1 2010

Keywords

  • Outcome measure
  • Pediatric Quality of Life Inventory
  • Spinal muscular atrophy
  • Telephone reliability

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Neurology
  • Clinical Neurology
  • Genetics(clinical)

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