The Journal of Pediatrics
Volume 151, Issue 2 , Pages 182-186.e2 , August 2007

Parental Reports of Health-Related Quality Of Life in Young Children with Neurofibromatosis Type 1: Influence of Condition Specific Determinants

  • Rianne Oostenbrink, MD, PhD

      Affiliations

    • Outpatient’s Department General Pediatrics, ErasmusMC/Sophia Children’s Hospital, Rotterdam, The Netherlands
    • Corresponding Author InformationReprint requests: Rianne Oostenbrink, PhD, MD, Pediatrician Outpatient Department General Pediatrics, Room Sp 1549, ErasmusMC/Sophia Children’s Hospital, Dr Molewaterplein 60, 3015 GJ Rotterdam, The Netherlands.
    • ,
  • Kimberly Spong, MSc

      Affiliations

    • Outpatient’s Department General Pediatrics, ErasmusMC/Sophia Children’s Hospital, Rotterdam, The Netherlands
    • ,
  • Arja de Goede-Bolder, MD

      Affiliations

    • Outpatient’s Department General Pediatrics, ErasmusMC/Sophia Children’s Hospital, Rotterdam, The Netherlands
    • ,
  • Jeanne M. Landgraf, MA

      Affiliations

    • HealthAct CHQ, Boston, Massachusetts.
    • ,
  • Hein Raat, MD, PhD

      Affiliations

    • Department of Public Health, ErasmusMC/Sophia Children’s Hospital, Rotterdam, The Netherlands
    • GGD–Municipal Health Service, Rotterdam, The Netherlands
    • ,
  • Henriette A. Moll, MD, PhD

      Affiliations

    • Outpatient’s Department General Pediatrics, ErasmusMC/Sophia Children’s Hospital, Rotterdam, The Netherlands

Received 27 October 2006 ,Revised 12 January 2007 ,Accepted 2 March 2007.

References 

  1. Huson SM, Compston DA, Clark P, Harper PS. A genetic study of von Recklinghausen neurofibromatosis in south east Wales (I. Prevalence, fitness, mutation rate, and effect of parental transmission on severity). J Med Genet. 1989;26:704–711
  2. Cnossen MH, de Goede-Bolder A, van den Broek KM, Waasdorp CM, Oranje AP, Stroink H, et al. A prospective 10 year follow up study of patients with neurofibromatosis type 1. Arch Dis Child. 1998;78:408–412
  3. Packer RJ, Rosser T. Therapy for plexiform neurofibromas in children with neurofibromatosis 1: an overview. J Child Neurol. 2002;17:638–641discussion 646-51
  4. Gutmann DH, Rasmussen SA, Wolkenstein P, MacCollin MM, Guha A, Inskip PD, et al. Gliomas presenting after age 10 in individuals with neurofibromatosis type 1 (NF1). Neurology. 2002;59:759–761
  5. Evans DG, Baser ME, McGaughran J, Sharif S, Howard E, Moran A. Malignant peripheral nerve sheath tumours in neurofibromatosis 1. J Med Genet. 2002;39:311–314
  6. Shin HT, Harris MB, Orlow SJ. Juvenile myelomonocytic leukemia presenting with features of hemophagocytic lymphohistiocytosis in association with neurofibromatosis and juvenile xanthogranulomas. J Pediatr Hematol Oncol. 2004;26:591–595
  7. Sung L, Anderson JR, Arndt C, Raney RB, Meyer WH, Pappo AS. Neurofibromatosis in children with Rhabdomyosarcoma: a report from the Intergroup Rhabdomyosarcoma study IV. J Pediatr. 2004;144:666–668
  8. Virdis R, Street ME, Bandello MA, Tripodi C, Donadio A, Villani AR, et al. Growth and pubertal disorders in neurofibromatosis type 1. J Pediatr Endocrinol Metab. 2003;16(Suppl 2):289–292
  9. Alwan S, Tredwell SJ, Friedman JM. Is osseous dysplasia a primary feature of neurofibromatosis 1 (NF1)?. Clin Genet. 2005;67:378–390
  10. North K, Hyman S, Barton B. Cognitive deficits in neurofibromatosis 1. J Child Neurol. 2002;17:605–612discussion 627-9, 646-51
  11. Kayl AE, Moore BD. Behavioral phenotype of neurofibromatosis, type 1. Ment Retard Dev Disabil Res Rev. 2000;6:117–124
  12. Page PZ, Page GP, Ecosse E, Korf BR, Leplege A, Wolkenstein P. Impact of neurofibromatosis 1 on Quality of Life: A cross-sectional study of 176 American cases. Am J Med Genet A. 2006;140:1893–1898
  13. Wolkenstein P, Zeller J, Revuz J, Ecosse E, Leplege A. Quality-of-life impairment in neurofibromatosis type 1: a cross-sectional study of 128 cases. Arch Dermatol. 2001;137:1421–1425
  14. Graf A, Landolt MA, Mori AC, Boltshauser E. Quality of life and psychological adjustment in children and adolescents with neurofibromatosis type 1. J Pediatr. 2006;149:348–353
  15. National Institutes of Health Consensus Development Conference. Neurofibromatosis (Conference statement). Arch Neurol. 1988;45:575–578
  16. Ablon J. Gender response to neurofibromatosis 1. Soc Sci Med. 1996;42:99–109
  17. Landgraf JM. The infant/toddler quality of life questionnaire: conceptual framework, logic, content and preliminary psychometric results. Final Report to Schering-Plough Laboratories and Health Technology Associates. Boston: New England Medical Center; 1994;
  18. Klassen AF, Landgraf JM, Lee SK, Barer M, Raina P, Chan HPW, et al. Health related quality of life in 3- and 4-year-old children and their parents: preliminary findings about a new questionnaire. Health and Qual Life Outcomes. 2003;1:81
  19. Msall ME. Measuring functional skills in preschool children at risk for neurodevelopmental disabilities. Ment Retard Dev Disabil Res Rev. 2005;11:263–273
  20. Raat H, Landgraf JM, Oostenbrink R, Moll HA, Essink- Bot ML. Reliability and validity of the infant and toddler quality of life questionnaire (ITQOL) in a general population and respiratory disease sample. Qual Life Res. 2007;16:445–460
  21. Oostenbrink R, Jansingh-Piepers EM, Raat H, Nuijsink M, Landgraf JM, Essink-Bot ML, et al. Health-related quality of life of pre-school children with wheezing illness. Pediatr Pulmonol. 2006;41:993–1000
  22. von Mackensen S, Bullinger M. Development and testing of an instrument to assess the quality of life of children with haemophilia in Europe (Haemo-QoL). Haemophilia. 2004;10(Suppl 1):17–25
  23. Cohen J. Statistical power analysis for the behavioral sciences. New York: Academic Press; 1977;
  24. Norman GR, Sloan JA, Wyrwich KW. Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Med Care. 2003;41:582–592
  25. Jenney ME. Theoretical issues pertinent to measurement of quality of life. Med Pediatr Oncol. 1998;(Suppl):41–45
  26. Theunissen NC, Vogels TG, Koopman HM, Verrips GH, Zwinderman KA, Verloove-Vanhorick SP, et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res. 1998;7:387–397
  27. Raina P, O’Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115:e626–e636
  28. von Rueden U, Gosch A, Rajmil L, Bisegger C, Ravens-Sieberer U. Socioeconomic determinants of health related quality of life in childhood and adolescence: results from a European study. J Epidemiol Community Health. 2006;60:130–135

PII: S0022-3476(07)00240-5

doi: 10.1016/j.jpeds.2007.03.005

The Journal of Pediatrics
Volume 151, Issue 2 , Pages 182-186.e2 , August 2007

Article Tools