The health-related quality of life of children, adolescents, and young adults with neurofibromatosis type 1 and their families: Analysis of narratives

Claire Burke Draucker; Kavitha Nutakki; James W Varni; Nancy L Swigonski

doi:10.1111/jspn.12174

The health-related quality of life of children, adolescents, and young adults with neurofibromatosis type 1 and their families: Analysis of narratives

J Spec Pediatr Nurs. 2017 Apr;22(2). doi: 10.1111/jspn.12174. Epub 2017 Feb 15.

Authors

Claire Burke Draucker¹, Kavitha Nutakki², James W Varni³, Nancy L Swigonski⁴

Affiliations

¹ Angela Barron McBride Professor of Psychiatric Mental Health Nursing, Indiana University School of Nursing, Indianapolis, Indiana, USA.
² Research Associate, Children's Health Services Research, Department of Pediatrics, Indiana University School of Medicine, Indianapolis, Indiana, USA.
³ 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.
⁴ 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.

PMID: 28198162
DOI: 10.1111/jspn.12174

Abstract

Purpose: Provide an in-depth description of the health-related quality of life (HRQoL) in youth diagnosed with neurofibromatosis type 1 (NF1) and their families.

Design and methods: Data were drawn from qualitative interviews conducted for a larger study aimed at developing the Pediatric Quality of Life Inventory™ (PedsQL™) NF1 module.

Results: 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.

Practice implications: Pediatric nurses should routinely assess for HRQoL in this population and develop strategies tailored to those concerns that require intervention.

Keywords: adolescents; children; families; neurofibromatosis type 1; qualitative description; young adults.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adaptation, Psychological
Adolescent
Adult
Child
Child, Preschool
Female
Humans
Infant
Male
Middle Aged
Neurofibromatosis 1 / psychology*
Parents / psychology*
Psychometrics
Quality of Life / psychology*
Stress, Psychological
Surveys and Questionnaires
Young Adult