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Perception of xeroderma pigmentosum support group members of xeroderma pigmentosum lifestyle impact
Author(s) -
Hawkins Danielle M.,
Eide Melody J.,
Lim Henry W.
Publication year - 2012
Publication title -
photodermatology, photoimmunology and photomedicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.736
H-Index - 60
eISSN - 1600-0781
pISSN - 0905-4383
DOI - 10.1111/j.1600-0781.2012.00693.x
Subject(s) - xeroderma pigmentosum , dermatology life quality index , medicine , dermatology , quality of life (healthcare) , genetics , dna repair , dna , biology , psoriasis , nursing
Summary Xeroderma pigmentosum ( XP ) is a genetic condition, which can cause an extreme sensitivity to sunlight and an increased risk of skin cancer due to errors in DNA repair. An online survey was administered to a convenience sample of participants who were members of an online support group for XP patients and their families to determine common symptoms and quality of life. The D ermatologic L ife Q uality I ndex ( DLQI ) or the C hildren's D ermatologic L ife Q uality I ndex ( CDLQI ) 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 DLQI and CDLQI was moderately affected.