{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,5]],"date-time":"2026-08-05T11:34:23Z","timestamp":1785929663216,"version":"3.56.0"},"reference-count":26,"publisher":"Elsevier BV","issue":"4","license":[{"start":{"date-parts":[[2024,7,1]],"date-time":"2024-07-01T00:00:00Z","timestamp":1719792000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2024,7,1]],"date-time":"2024-07-01T00:00:00Z","timestamp":1719792000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2024,2,24]],"date-time":"2024-02-24T00:00:00Z","timestamp":1708732800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100002322","name":"Coordenacao de Aperfeicoamento de Pessoal de Nivel Superior","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100002322","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Anais Brasileiros de Dermatologia"],"published-print":{"date-parts":[[2024,7]]},"DOI":"10.1016\/j.abd.2023.08.011","type":"journal-article","created":{"date-parts":[[2024,3,16]],"date-time":"2024-03-16T09:05:30Z","timestamp":1710579930000},"page":"520-526","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":5,"title":["Association of sociodemographic and clinical factors with the quality of life of Brazilian individuals with Neurofibromatosis type 1: a cross-sectional study"],"prefix":"10.1016","volume":"99","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8674-0349","authenticated-orcid":false,"given":"Nat\u00e1lia Parenti","family":"Bicudo","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5030-7164","authenticated-orcid":false,"given":"Carla Maria Ramos","family":"Germano","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0478-786X","authenticated-orcid":false,"given":"Roberta Teixeira","family":"de Moraes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7282-420X","authenticated-orcid":false,"given":"Lucimar Retto da Silva","family":"de Av\u00f3","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9169-4698","authenticated-orcid":false,"given":"Rosalie E.","family":"Ferner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7005-3544","authenticated-orcid":false,"given":"D\u00e9bora Gusm\u00e3o","family":"Melo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.abd.2023.08.011_bib0005","doi-asserted-by":"crossref","first-page":"17004","DOI":"10.1038\/nrdp.2017.4","article-title":"Neurofibromatosis type 1","volume":"3","author":"Gutmann","year":"2017","journal-title":"Nat Rev Dis Primers"},{"key":"10.1016\/j.abd.2023.08.011_bib0010","doi-asserted-by":"crossref","first-page":"1035","DOI":"10.1016\/j.mcna.2019.07.004","article-title":"The diagnosis and management of neurofibromatosis type 1","volume":"103","author":"Ly","year":"2019","journal-title":"Med Clin North Am"},{"key":"10.1016\/j.abd.2023.08.011_bib0015","series-title":"GeneReviews\u00ae [Internet]","article-title":"Neurofibromatosis 1","author":"Friedman","year":"2022"},{"key":"10.1016\/j.abd.2023.08.011_bib0020","doi-asserted-by":"crossref","first-page":"160","DOI":"10.1159\/000337548","article-title":"Psychological burden in adult neurofibromatosis type 1 patients: impact of disease visibility on body image","volume":"224","author":"Granstr\u00f6m","year":"2012","journal-title":"Dermatology"},{"key":"10.1016\/j.abd.2023.08.011_bib0025","doi-asserted-by":"crossref","first-page":"931","DOI":"10.1007\/s10897-015-9829-5","article-title":"The impact of neurofibromatosis type 1 on the health and wellbeing of Australian adults","volume":"24","author":"Crawford","year":"2015","journal-title":"J Genet Couns"},{"key":"10.1016\/j.abd.2023.08.011_bib0030","doi-asserted-by":"crossref","first-page":"1063","DOI":"10.1007\/s10897-016-9939-8","article-title":"Quality of life in adults with Neurofibromatosis 1 in Brazil","volume":"25","author":"Bicudo","year":"2016","journal-title":"J Genet Couns"},{"key":"10.1016\/j.abd.2023.08.011_bib0035","doi-asserted-by":"crossref","first-page":"1704","DOI":"10.1002\/ajmg.a.61627","article-title":"Clinical characteristics and quality of life, depression, and anxiety in adults with neurofibromatosis type 1: a nationwide study","volume":"182","author":"Doser","year":"2020","journal-title":"Am J Med Genet A"},{"key":"10.1016\/j.abd.2023.08.011_bib0040","first-page":"i141","article-title":"Quality of life in patients with neurofibromatosis type 1 and 2 in Canada","volume":"2","author":"Hamoy-Jimenez","year":"2020","journal-title":"Neurooncol Adv"},{"key":"10.1016\/j.abd.2023.08.011_bib0045","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1007\/s11060-013-1195-2","article-title":"Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature","volume":"114","author":"Vranceanu","year":"2013","journal-title":"J Neurooncol"},{"key":"10.1016\/j.abd.2023.08.011_bib0050","doi-asserted-by":"crossref","first-page":"34","DOI":"10.1186\/s12955-017-0607-y","article-title":"Evaluation of quality of life in adults with neurofibromatosis 1 (NF1) using the impact of NF1 on quality of life (INF1-QoL) questionnaire","volume":"15","author":"Ferner","year":"2017","journal-title":"Health Qual Life Outcomes"},{"key":"10.1016\/j.abd.2023.08.011_bib0055","doi-asserted-by":"crossref","first-page":"689","DOI":"10.1093\/bjd\/ljad037","article-title":"Cross-cultural adaptation and psychometric properties of the Brazilian Portuguese version of the impact of neurofibromatosis type 1 on quality of life (INF1-QoL) questionnaire","volume":"188","author":"Bicudo","year":"2023","journal-title":"Br J Dermatol"},{"key":"10.1016\/j.abd.2023.08.011_bib0060","unstructured":"STROBE [Internet]. Bern, Switzerland: Institute of Social and Preventive Medicine, University of Bern [cited 2023 May 31]. Available from: https:\/\/www.strobe-statement.org\/."},{"key":"10.1016\/j.abd.2023.08.011_bib0065","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1111\/mono.12296","article-title":"More than just convenient: the scientific merits of homogeneous convenience samples","volume":"82","author":"Jager","year":"2017","journal-title":"Monogr Soc Res Child Dev"},{"key":"10.1016\/j.abd.2023.08.011_bib0070","doi-asserted-by":"crossref","first-page":"99","DOI":"10.1016\/0277-9536(95)00076-3","article-title":"Gender response to neurofibromatosis 1","volume":"42","author":"Ablon","year":"1996","journal-title":"Soc Sci Med"},{"key":"10.1016\/j.abd.2023.08.011_bib0075","series-title":"Figshare. Online resource","article-title":"Escala de autoavalia\u00e7\u00e3o de visibilidade da NF1","author":"Bicudo","year":"2022"},{"key":"10.1016\/j.abd.2023.08.011_bib0080","doi-asserted-by":"crossref","first-page":"1273","DOI":"10.1007\/s11165-016-9602-2","article-title":"The Use of Cronbach\u2019s Alpha When Developing and Reporting Research Instruments in Science Education","volume":"48","author":"Taber","year":"2018","journal-title":"Res Sci Educ"},{"key":"10.1016\/j.abd.2023.08.011_bib0085","series-title":"JASP. (version 0.16). Computer software","author":"JASP Team","year":"2021"},{"key":"10.1016\/j.abd.2023.08.011_bib0090","doi-asserted-by":"crossref","first-page":"753","DOI":"10.1111\/1467-9566.12401","article-title":"Families dealing with the uncertainty of genetic disorders: the case of neurofibromatosis Type 1","volume":"38","author":"Carrieri","year":"2016","journal-title":"Sociol Health Illn"},{"key":"10.1016\/j.abd.2023.08.011_bib0095","doi-asserted-by":"crossref","first-page":"234","DOI":"10.1186\/s13023-021-01866-6","article-title":"The mediating effects of quality of life, depression, and generalized anxiety on perceived barriers to employment success for people diagnosed with neurofibromatosis Type 1","volume":"16","author":"Buono","year":"2021","journal-title":"Orphanet J Rare Dis"},{"key":"10.1016\/j.abd.2023.08.011_bib0100","doi-asserted-by":"crossref","first-page":"2555","DOI":"10.2147\/JPR.S209540","article-title":"Pain symptomology, functional impact, and treatment of people with neurofibromatosis type 1","volume":"12","author":"Buono","year":"2019","journal-title":"J Pain Res"},{"key":"10.1016\/j.abd.2023.08.011_bib0105","doi-asserted-by":"crossref","first-page":"79","DOI":"10.1016\/j.neuroscience.2018.04.002","article-title":"CRMP2-neurofibromin interface drives NF1-related pain","volume":"381","author":"Moutal","year":"2018","journal-title":"Neuroscience"},{"key":"10.1016\/j.abd.2023.08.011_bib0110","doi-asserted-by":"crossref","first-page":"1007","DOI":"10.1097\/j.pain.0000000000001486","article-title":"Towards a neurobiological understanding of pain in neurofibromatosis type 1: mechanisms and implications for treatment","volume":"160","author":"Bellampalli","year":"2019","journal-title":"Pain"},{"key":"10.1016\/j.abd.2023.08.011_bib0115","article-title":"Innovation in the treatment of persistent pain in adults with neurofibromatosis type 1 (NF1): implementation of the iCanCope mobile application","volume":"25","author":"Buono","year":"2021","journal-title":"Contemp Clin Trials Commun"},{"key":"10.1016\/j.abd.2023.08.011_bib0120","series-title":"Handbook of social indicators and quality of life research","article-title":"Education and quality of life","author":"Edgerton","year":"2012"},{"key":"10.1016\/j.abd.2023.08.011_bib0125","doi-asserted-by":"crossref","first-page":"369","DOI":"10.1590\/1413-81232018232.21832017","article-title":"Family therapeutic trajectories: rare hereditary diseases involving long-term suffering","volume":"23","author":"Aureliano","year":"2018","journal-title":"Cien Saude Colet"},{"key":"10.1016\/j.abd.2023.08.011_bib0130","doi-asserted-by":"crossref","first-page":"1151","DOI":"10.1002\/jgc4.1275","article-title":"Factors associated with parental knowledge of neurofibromatosis type 1 (NF1): parental affected status and genetic counseling","volume":"29","author":"Solem","year":"2020","journal-title":"J Genet Couns"}],"container-title":["Anais Brasileiros de Dermatologia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S036505962400031X?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S036505962400031X?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,5,19]],"date-time":"2025-05-19T15:00:51Z","timestamp":1747666851000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S036505962400031X"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,7]]},"references-count":26,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2024,7]]}},"alternative-id":["S036505962400031X"],"URL":"https:\/\/doi.org\/10.1016\/j.abd.2023.08.011","relation":{},"ISSN":["0365-0596"],"issn-type":[{"value":"0365-0596","type":"print"}],"subject":[],"published":{"date-parts":[[2024,7]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Association of sociodemographic and clinical factors with the quality of life of Brazilian individuals with Neurofibromatosis type 1: a cross-sectional study","name":"articletitle","label":"Article Title"},{"value":"Anais Brasileiros de Dermatologia","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.abd.2023.08.011","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2024 Sociedade Brasileira de Dermatologia. Published by Elsevier Espa\u00f1a, S.L.U.","name":"copyright","label":"Copyright"}]}}