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

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

doi:10.1016/j.nmd.2009.12.002

« Previous Next »Neuromuscular Disorders
Volume 20, Issue 3 , Pages 162-165, March 2010

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

Sally Dunaway
- SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
Jacqueline Montes
- SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
Megan Montgomery
- SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
Vanessa Battista
- SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
Benjamin Koo
- SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
Jonathan Marra
- SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
Darryl C. De Vivo
- SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
Linda S. Hynan
- Departments of Clinical Sciences (Biostatistics) and Psychiatry, UT Southwestern Medical Center, Dallas, TX, USA
Susan T. Iannaccone
- Departments of Pediatrics and Neurology, UT Southwestern Medical Center, Dallas, TX, USA
Petra Kaufmann
- SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
- Corresponding author. Address: 180 Fort Washington Ave., 5th Floor New York, NY 10032, USA. Tel.: +1 212 305 1326; fax: +1 212 305 9263.

Received 27 July 2009; received in revised form 6 November 2009; accepted 30 November 2009.

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 7days 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 8years.