title: The health-related quality of life of children, adolescents, and young adults with neurofibromatosis type 1 and their families: Analysis of narratives.
abstract: Provide an in-depth description of the health-related quality of life (HRQoL) in youth diagnosed with neurofibromatosis type 1 (NF1) and their families.
  
  
  
  Data were drawn from qualitative interviews conducted for a larger study aimed at developing the Pediatric Quality of Life Inventory™ (PedsQL™) NF1 module.
  
  
  
  Youth with NF1 and their families experience a wide range of concerns related to HRQoL due to the varied symptom expression and uncertain trajectory of the disorder.
  
  
  
  Pediatric nurses should routinely assess for HRQoL in this population and develop strategies tailored to those concerns that require intervention.
authors.affiliation: Angela Barron McBride Professor of Psychiatric Mental Health Nursing, Indiana University School of Nursing, Indianapolis, Indiana, USA.
authors.forename: Claire Burke
authors.initials: CB
authors.lastname: Draucker
authors.affiliation: Research Associate, Children's Health Services Research, Department of Pediatrics, Indiana University School of Medicine, Indianapolis, Indiana, USA.
authors.forename: Kavitha
authors.initials: K
authors.lastname: Nutakki
authors.affiliation: Professor Emeritus, Department of Pediatrics, College of Medicine, Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, College Station, Texas, USA.
authors.forename: James W
authors.initials: JW
authors.lastname: Varni
authors.affiliation: Professor, Department of Pediatrics; Professor, Fairbanks School of Public Health; Affiliate Scientist, Regenstrief Institute, Inc.; Children's Health Services Research, Indiana University School of Medicine, Indianapolis, Indiana, USA.
authors.forename: Nancy L
authors.initials: NL
authors.lastname: Swigonski
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D009456:Neurofibromatosis 1 / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: adolescents; children; families; neurofibromatosis type 1; qualitative description; young adults