Claire Burke Draucker1, Kavitha Nutakki2, James W Varni3, Nancy L Swigonski4. 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.
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.
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: Andre B Rietman; Hanneke van Helden; Pauline H Both; Walter Taal; Jeroen S Legerstee; AnneLoes van Staa; Henriette A Moll; Rianne Oostenbrink; Agnies M van Eeghen Journal: Am J Med Genet A Date: 2018-05 Impact factor: 2.802
Authors: Nicolas Ortonne; Steven L Carroll; Fausto J Rodriguez; Douglas C Miller; Rosalynn M Nazarian; Jaishri O Blakeley; Zachary B Madaj; Sharad K Verma; Anat Stemmer-Rachamimov Journal: Neurooncol Adv Date: 2019-12-05
Authors: Alice Heaney; Jeanette Wilburn; Matthew Rouse; Shannon Langmead; Jaishri O Blakeley; Susan Huson; Stephen P McKenna Journal: Mol Genet Genomic Med Date: 2020-10-21 Impact factor: 2.183