{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,29]],"date-time":"2026-10-29T02:20:42Z","timestamp":1793240442450,"version":"4.5.0"},"reference-count":4,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2012,11,6]],"date-time":"2012-11-06T00:00:00Z","timestamp":1352160000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Photoderm Photoimm Photomed"],"published-print":{"date-parts":[[2012,12]]},"abstract":"<jats:title>Summary<\/jats:title><jats:p>Xeroderma pigmentosum (<jats:styled-content style=\"fixed-case\">XP<\/jats:styled-content>) is a genetic condition, which can cause an extreme sensitivity to sunlight and an increased risk of skin cancer due to errors in <jats:styled-content style=\"fixed-case\">DNA<\/jats:styled-content> repair. An online survey was administered to a convenience sample of participants who were members of an online support group for <jats:styled-content style=\"fixed-case\">XP<\/jats:styled-content> patients and their families to determine common symptoms and quality of life. The <jats:styled-content style=\"fixed-case\">D<\/jats:styled-content>ermatologic <jats:styled-content style=\"fixed-case\">L<\/jats:styled-content>ife <jats:styled-content style=\"fixed-case\">Q<\/jats:styled-content>uality <jats:styled-content style=\"fixed-case\">I<\/jats:styled-content>ndex (<jats:styled-content style=\"fixed-case\">DLQI<\/jats:styled-content>) or the <jats:styled-content style=\"fixed-case\">C<\/jats:styled-content>hildren's <jats:styled-content style=\"fixed-case\">D<\/jats:styled-content>ermatologic <jats:styled-content style=\"fixed-case\">L<\/jats:styled-content>ife <jats:styled-content style=\"fixed-case\">Q<\/jats:styled-content>uality <jats:styled-content style=\"fixed-case\">I<\/jats:styled-content>ndex (<jats:styled-content style=\"fixed-case\">CDLQI<\/jats:styled-content>) was used depending on patient age. A total of four patients and two parents of young patients completed our survey. Quality of life as measured through the <jats:styled-content style=\"fixed-case\">DLQI<\/jats:styled-content> and <jats:styled-content style=\"fixed-case\">CDLQI<\/jats:styled-content> was moderately affected.<\/jats:p>","DOI":"10.1111\/j.1600-0781.2012.00693.x","type":"journal-article","created":{"date-parts":[[2012,11,6]],"date-time":"2012-11-06T07:07:33Z","timestamp":1352185653000},"page":"338-339","source":"Crossref","is-referenced-by-count":6,"title":["Perception of xeroderma pigmentosum support group members of xeroderma pigmentosum lifestyle impact"],"prefix":"10.1111","volume":"28","author":[{"given":"Danielle M.","family":"Hawkins","sequence":"first","affiliation":[{"name":"Department of Dermatology University of New Mexico  Albuquerque NM USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melody J.","family":"Eide","sequence":"additional","affiliation":[{"name":"Department of Dermatology Henry Ford Hospital  Detroit MI USA"},{"name":"Department of Public Health Sciences Henry Ford Hospital  Detroit MI USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Henry W.","family":"Lim","sequence":"additional","affiliation":[{"name":"Department of Dermatology Henry Ford Hospital  Detroit MI USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2012,11,6]]},"reference":[{"key":"e_1_2_5_2_1","first-page":"4","article-title":"Xeroderma pigmentosum","volume":"13","author":"Norgauer J","year":"2003","journal-title":"Eur J Dermatol"},{"key":"e_1_2_5_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.dnarep.2011.04.027"},{"key":"e_1_2_5_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2230.1994.tb01167.x"},{"key":"e_1_2_5_5_1","first-page":"942","article-title":"The Children's Dermatology Life Qulaity Index (CDLQI): initial validation and practical use","volume":"135","author":"Lewis\u2010Jones M","year":"1995","journal-title":"Br J Dermatol"}],"container-title":["Photodermatology, Photoimmunology &amp; Photomedicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fj.1600-0781.2012.00693.x","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/j.1600-0781.2012.00693.x","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,11,21]],"date-time":"2023-11-21T10:17:48Z","timestamp":1700561868000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/j.1600-0781.2012.00693.x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2012,11,6]]},"references-count":4,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2012,12]]}},"alternative-id":["10.1111\/j.1600-0781.2012.00693.x"],"URL":"https:\/\/doi.org\/10.1111\/j.1600-0781.2012.00693.x","archive":["Portico"],"relation":{},"ISSN":["0905-4383","1600-0781"],"issn-type":[{"value":"0905-4383","type":"print"},{"value":"1600-0781","type":"electronic"}],"subject":[],"published":{"date-parts":[[2012,11,6]]}}}