{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,29]],"date-time":"2026-05-29T23:14:35Z","timestamp":1780096475715,"version":"3.54.0"},"reference-count":45,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2024,6,24]],"date-time":"2024-06-24T00:00:00Z","timestamp":1719187200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["The Journal of Dermatology"],"published-print":{"date-parts":[[2024,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>The skin manifestations of neurofibromatosis 1 significantly reduce health\u2010related quality\u2010of\u2010life. However, data on the utility of existing surveys in capturing neurofibromatosis 1 skin treatment outcomes are lacking. This quantitative study examined the relationship between clinician\u2010rated severity and visibility and patient\u2010rated itch and quality\u2010of\u2010life (QoL) to (1) establish baseline levels of skin\u2010 and condition\u2010specific\u2010related QoL, itch, depression and anxiety; (2) identify patient concerns to inform the development and evaluation of skin interventions; and (3) compare the sensitivity of different QoL measures. Validated scales included Skindex\u201029, Dermatology Life Quality Index (DLQI), Neurofibromatosis 1\u2010adult quality\u2010of\u2010life (NF1\u2010AdQOL) questionnaire, and the Hospital Anxiety and Depression Scale (HADS). We recruited 100 participants (response rate: 95%). Of these, 42% reported itch and 23% had probable clinical anxiety. Our cohort had higher levels of anxiety and total HADS scores compared to a control population. Using multivariate regression analysis, increasing visibility significantly predicted poorer QoL using the Skindex\u201029, NF1\u2010AdQOL, and DLQI (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.05); and itch significantly predicted worse QoL in Skindex\u201029 and NF1\u2010AdQOL (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.05). The highest mean scoring questions in Skindex\u201029 and NF1\u2010AdQOL concerned worry about worsening skin disease and embarrassment. The highest mean scoring questions in DLQI were regarding itch, pain, and embarrassment. Items asking specifically about cutaneous neurofibromas (cNF) scored higher than comparable skin\u2010specific questions (<jats:italic>t<\/jats:italic>\u2010test <jats:italic>p<\/jats:italic> value &lt;0.05). In summary, this study provides insights into the factors contributing to impaired QoL, anxiety, and mood in NF1 patients with cutaneous neurofibromas. Key factors identified for use in cNF measures include visibility, itch, anxiety, embarrassment, fears of worsening skin disease, and cNF\u2010specific questions.<\/jats:p>","DOI":"10.1111\/1346-8138.17276","type":"journal-article","created":{"date-parts":[[2024,6,24]],"date-time":"2024-06-24T13:01:32Z","timestamp":1719234092000},"page":"1050-1059","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["The impact of cutaneous neurofibromas on quality of life and mental health in neurofibromatosis type 1"],"prefix":"10.1111","volume":"51","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7858-0891","authenticated-orcid":false,"given":"Brieana","family":"Dance","sequence":"first","affiliation":[{"name":"Department of Clinical Genetics Northern Sydney Local Health District  Sydney New South Wales 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