{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,7]],"date-time":"2026-02-07T18:29:47Z","timestamp":1770488987176,"version":"3.49.0"},"reference-count":28,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2017,2,15]],"date-time":"2017-02-15T00:00:00Z","timestamp":1487116800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"The Neurofibromatosis Therapeutic Acceleration Program (NTAP) at Johns Hopkins University School of Medicine"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Specialist Pediatric Nursing"],"published-print":{"date-parts":[[2017,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Purpose<\/jats:title><jats:p>Provide an in\u2010depth description of the health\u2010related quality of life (HRQoL) in youth diagnosed with neurofibromatosis type 1 (NF1) and their families.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design and Methods<\/jats:title><jats:p>Data were drawn from qualitative interviews conducted for a larger study aimed at developing the Pediatric Quality of Life Inventory\u2122 (PedsQL\u2122) NF1 module.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Practice Implications<\/jats:title><jats:p>Pediatric nurses should routinely assess for HRQoL in this population and develop strategies tailored to those concerns that require intervention.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jspn.12174","type":"journal-article","created":{"date-parts":[[2017,2,15]],"date-time":"2017-02-15T05:56:45Z","timestamp":1487138205000},"source":"Crossref","is-referenced-by-count":24,"title":["The health\u2010related quality of life of children, adolescents, and young adults with neurofibromatosis type 1 and their families: Analysis of narratives"],"prefix":"10.1111","volume":"22","author":[{"given":"Claire Burke","family":"Draucker","sequence":"first","affiliation":[{"name":"Angela Barron McBride Professor of Psychiatric Mental Health Nursing Indiana University School of Nursing  Indianapolis Indiana USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kavitha","family":"Nutakki","sequence":"additional","affiliation":[{"name":"Research Associate Children's Health Services Research Department of Pediatrics Indiana University School of Medicine  Indianapolis Indiana USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James W.","family":"Varni","sequence":"additional","affiliation":[{"name":"Professor Emeritus Department of Pediatrics College of Medicine Department of Landscape Architecture and Urban Planning College of Architecture Texas A&amp;M University  College Station Texas USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nancy L.","family":"Swigonski","sequence":"additional","affiliation":[{"name":"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"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2017,2,15]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/B978-0-444-62702-5.00004-4"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-015-0247-z"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/jan.12319"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1547-5069.2005.00058.x"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1155\/2012\/975364"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2010.03624.x"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2006.04.025"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1523\/JNEUROSCI.3242-12.2012"},{"key":"e_1_2_11_10_1","unstructured":"Healthy People 2020(2010).Foundation Health Measure Report: Health\u2010related qualilty of life and well\u2010being. 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