Journal
JOURNAL FOR SPECIALISTS IN PEDIATRIC NURSING
Volume 22, Issue 2, Pages -Publisher
WILEY
DOI: 10.1111/jspn.12174
Keywords
adolescents; children; families; neurofibromatosis type 1; qualitative description; young adults
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Funding
- Neurofibromatosis Therapeutic Acceleration Program (NTAP) at Johns Hopkins University School of Medicine, Baltimore, MD
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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 (TM) (PedsQL (TM)) 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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