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

      Affiliations

    • SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
    • ,
  • Jacqueline Montes

      Affiliations

    • SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
    • ,
  • Megan Montgomery

      Affiliations

    • SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
    • ,
  • Vanessa Battista

      Affiliations

    • SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
    • ,
  • Benjamin Koo

      Affiliations

    • SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
    • ,
  • Jonathan Marra

      Affiliations

    • SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
    • ,
  • Darryl C. De Vivo

      Affiliations

    • SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
    • ,
  • Linda S. Hynan

      Affiliations

    • Departments of Clinical Sciences (Biostatistics) and Psychiatry, UT Southwestern Medical Center, Dallas, TX, USA
    • ,
  • Susan T. Iannaccone

      Affiliations

    • Departments of Pediatrics and Neurology, UT Southwestern Medical Center, Dallas, TX, USA
    • ,
  • Petra Kaufmann

      Affiliations

    • SMA Clinical Research Center, Columbia University Medical Center, New York, NY, USA
    • Corresponding Author InformationCorresponding 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 ,Revised 6 November 2009 ,Accepted 30 November 2009.

References 

  1. Crawford TO. Spinal muscular atrophies. In:  Jones RH,  De Vivo DC,  Darras BT editor. Neuromuscular disorders of infancy, childhood, and adolescence: a clinician’s approach. Philadelphia: Butterworth Heinemann; 2003;p. 145–166
  2. Oskoui M, Kaufmann P. Spinal muscular atrophy. Neurotherapeutics. 2008;5(4):499–506
  3. Kaufmann P, Finkel R. Learning to walk: challenges for spinal muscular atrophy clinical trials. Neurology. 2007;68(1):11–12
  4. Iannaccone ST, Hynan LS. Reliability of 4 outcome measures in pediatric spinal muscular atrophy. Arch Neurol. 2003;60(8):1130–1136
  5. Iannaccone ST. Outcome measures for pediatric spinal muscular atrophy. Arch Neurol. 2002;59(9):1445–1450
  6. Mah JK, Thannhauser JE, Kolski H, Dewey D. Parental stress and quality of life in children with neuromuscular disease. Pediatr Neurol. 2008;39(2):102–107
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  10. Sprangers MA, Cull A, Bjordal K, Groenvold M, Aaronson NK. The European organization for research and treatment of cancer. Approach to quality of life assessment: guidelines for developing questionnaire modules. EORTC study group on quality of life. Qual Life Res. 1993;2(4):287–295
  11. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the Pediatric Quality of Life Inventory. Med Care. 1999;37(2):126–139
  12. Varni JW, Seid M, Kurtin PS. PedsQL 4. 0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39(8):800–812
  13. Iannaccone ST, Hynan LS, Morton A, et al. The PedsQL in pediatric patients with Spinal Muscular Atrophy: feasibility, reliability and validity of the Pediatric Quality of Life Inventory Generic Core scales and Neuromuscular Module. Neuromuscul Disord. 2009;19:805–812
  14. Swoboda KJ, Kissel JT, Crawford TO, et al. Perspectives on clinical trials in spinal muscular atrophy. J Child Neurol. 2007;22(8):957–966
  15. Russman BS, Iannaccone ST, Samaha FJ. A phase 1 trial of riluzole in spinal muscular atrophy. Arch Neurol. 2003;60(11):1601–1603
  16. Varni JW Limbers CA, Newman DA. Using factor analysis to confirm the validity of children’s self-reported health-related quality of life across different modes of administration. Clin Trials. 2009;6(2):185–195
  17. Bartko JJ. The intraclass correlation coefficient as a measure of reliability. Psychol Rep. 1966;19(1):3–11
  18. Fleiss J. Reliability of measurement. In: The design and analysis of clinical experiments. New York: John Wiley & Sons; 1986;p. 1–32
  19. Young NL, Varni JW, Snider L, et al. The internet is valid and reliable for child-report: an example using the Activities Scale for Kids (ASK) and the Pediatric Quality of Life Inventory (PedsQL). J Clin Epidemiol. 2009;62(3):314–320
  20. Eiser C, Morse R. Can parents rate their child’s health-related quality of life? Results of a systematic review. Qual Life Res. 2001;10(4):347–357
  21. Upton P, Lawford J, Eiser C. Parent–child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res. 2008;17(6):895–913

☆ This work was done while Dr. Kaufmann was at Columbia University and does not relate to NINDS/NIH.

PII: S0960-8966(09)00696-8

doi: 10.1016/j.nmd.2009.12.002

Neuromuscular Disorders
Volume 20, Issue 3 , Pages 162-165 , March 2010

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