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

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.

authors

• Varni, James

published proceedings

• J Spec Pediatr Nurs

author list (cited authors)

• Draucker, C. B., Nutakki, K., Varni, J. W., & Swigonski, N. L.

citation count

• 18

complete list of authors

• Draucker, Claire Burke||Nutakki, Kavitha||Varni, James W||Swigonski, Nancy L

publication date

• April 2017

publisher

• Wiley  Publisher

published in

• Journal for Specialists in Pediatric Nursing  Journal

keywords

• Adaptation, Psychological
• Adolescent
• Adolescents
• Adult
• Child
• Child, Preschool
• Children
• Families
• Female
• Humans
• Infant
• Male
• Middle Aged
• Neurofibromatosis 1
• Neurofibromatosis Type 1
• Parents
• Psychometrics
• Qualitative Description
• Quality Of Life
• Stress, Psychological
• Surveys And Questionnaires
• Young Adult
• Young Adults

PubMed Central ID

• 28198162

Digital Object Identifier (DOI)

• 10.1111/jspn.12174

start page

• e12174

end page

• e12174

volume

• 22

issue

• 2

URL

• http%3A%2F%2Fdx.doi.org%2F10.1111%2Fjspn.12174