The Journal of Pediatrics
Volume 149, Issue 3 , Pages 348-353 , September 2006

Quality of life and psychological adjustment in children and adolescents with neurofibromatosis type 1

Received 31 October 2005 ,Revised 6 February 2006 ,Accepted 18 April 2006.

References 

  1. Friedman JM . Epidemiology of neurofibromatosis type 1 . Am J Med Genet (Semin Med Genet) . 1999;89:1–6
  2. National Institutes of Health . National Institutes of Health Consensus Development Conference (Neurofibromatosis conference statement) . Arch Neurol . 1988;45:575–578
  3. Hyman SL , Shores A , North KN . The nature and frequency of cognitive deficits in children with neurofibromatosis type 1 . Neurology . 2005;65:1037–1044
  4. Mautner VF , Kluwe L , Thakker SD , Leark RA . Treatment of ADHD in neurofibromatosis type 1 . Dev Med Child Neurol . 2002;44:164–170
  5. Wolkenstein P , Zeller J , Revuz J , Ecosse E , Leplège A . Quality-of-life impairment in neurofibromatosis type 1 (a cross-sectional study of 128 cases) . Arch Derm . 2001;137:1421–1425
  6. Barton B, North K. [On-line]. Self-concept of children with neurofibromatosis type 1 (NF1). Available from: http://self.uws.edu.au/Conferences/2002_CD_Barton&_ North.pdf
  7. Johnson NS , Saal HM , Lovell AM , Schorry EK . Social and emotional problems in children with neurofibromatosis type 1 (evidence and proposed interventions) . J Pediatr . 1999;134:767–772
  8. Barton B , North K . Social skills of children with neurofibromatosis type 1 . Dev Med Child Neurol . 2004;46:553–563
  9. Prinzie P , Descheemaeker MJ , Vogels A , Cleymans T , Haselager GJT , Curfs LMG , et al.   Personality profiles of children and adolescents with neurofibromatosis type 1 . Am J Med Genet . 2003;118A:1–7
  10. Johnson H , Wiggs L , Stores G , Huson SM . Psychological disturbance and sleep disorders in children with neurofibromatosis type 1 . Dev Med Child Neurol . 2005;47:237–242
  11. Vogels T , Verrips GHW , Koopman HM , Theunissen NCM , Fekkes M , Kamphuis RP . TACQOL manual (parent form and child form) . Leiden: Leiden Center for Child Health and Pediatrics LUMC-TNO; 2000;
  12. Varni JW , Seid M . The PedsQL measurement model for the pediatric quality of life inventory . Med Care . 1999;37:126–139
  13. Achenbach T . Manual for the Child Behavior Checklist/4-18. . Burlington: University of Vermont; 1991;
  14. Döpfner M , Pflück J , Bölte S , Lenz K , Melchers P , Heim K . Elternfragebogen über das Verhalten von Kindern und Jugendlichen. Deutsche Bearbeitung der Child Behavior Checklist 4-18 . Köln: Arbeitsgruppe Kinder-, Jugend- und Familiendiagnostik; 1998;
  15. Moos RH , Moos BS . Family Environment Scale Manual. . Palo Alto, CA: Consulting Psychologists Press; 1994;
  16. Riccardi VM . Neurofibromatosis (historical background and introduction) . In:  Friedman JM ,  Gutmann DH ,  Maccollin M ,  Riccardi VM editor. Neurofibromatosis. Phenotype, Natural History and Pathogenesis . 3rd edition. Baltimore: The John Hopkins University Press; 1999;p. 1–25
  17. Ablon J . Gender response to neurofibromatosis 1 . Soc Sci Med . 1996;42:99–109
  18. Landolt MA , Nuoffer JM , Steinmann B , Superti-Furga A . Quality of life and psychologic adjustment in children and adolescents with early treated phenylketonuria can be normal . J Pediatr . 2002;140:516–521
  19. Rueth EM , Landolt MA , Neuhaus TJ , Kemper JM . Health-related quality of life and psychosocial adjustment in steroid-sensitive nephrotic syndrome . J Pediatr . 2004;145:778–783
  20. Miller V , Palermo TM , Grewe SD . Quality of life in pediatric epilepsy (demographic and disease-related predictors and comparison with healthy controls) . Epilepsy Behav . 2003;4:36–42
  21. Theunissen NCM, Vogels TGC, Koopman HM, Verrips GHW, Zwinderman KAH, 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
  22. Perrin EC , Stein REK , Drotar D . Cautions in using the child behavior checklist (observations based on research about children with a chronic illness) . J Pediatr Psychol . 1991;16:411–421
  23. Jusiene R , Kucinskas V . Familial variables as predictors of psychological maladjustment in Lithuanian children with phenylketonuria . Med Sci Mon . 2004;10:102–107
  24. Rodenburg R , Stams GJ , Meijer AM , Aldenkamp AP , Dekovic M . Psychopathology in children with epilepsy (a meta-analysis) . J Pediatr Psychol . 2005;3:1–16
  25. McQuaid EL , Kopel SJ , Nassau JH . Behavioral adjustment in children with asthma (a meta-analysis) . Dev Behav Pediatr . 2001;22:430–439
  26. Kathleen MC , Kathleen M , Schiaffino PD . Adolescent self-perceptions of adjustment to childhood arthritis (the influence of disease activity, family resources, and parent adjustment) . J Adolesc Health . 2002;31:363–371
  27. Thompson RJ , Armstrong FD , Link CL , Pegelow HP , Moser F , Wang WC . A prospective study of the relationship over time of behavior problems, intellectual functioning, and family functioning in children with sickle cell disease . J Pediatr Psychol . 2005;28:59–65

PII: S0022-3476(06)00342-8

doi: 10.1016/j.jpeds.2006.04.025

The Journal of Pediatrics
Volume 149, Issue 3 , Pages 348-353 , September 2006