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

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

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

Author(s) -

Draucker Claire Burke,

Nutakki Kavitha,

Varni James W.,

Swigonski Nancy L.

Publication year - 2017

Publication title -

journal for specialists in pediatric nursing

Language(s) - English

Resource type - Journals

SCImago Journal Rank - 0.499

H-Index - 38

eISSN - 1744-6155

pISSN - 1539-0136

DOI - 10.1111/jspn.12174

Subject(s) - neurofibromatosis , quality of life (healthcare) , intervention (counseling) , medicine , narrative , health related quality of life , qualitative research , population , clinical psychology , pediatrics , family medicine , psychology , psychiatry , nursing , environmental health , disease , pathology , social science , linguistics , philosophy , sociology

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.

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