title: Perception of xeroderma pigmentosum support group members of xeroderma pigmentosum lifestyle impact.
abstract: 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 Dermatologic Life Quality Index (DLQI) or the Children's Dermatologic Life Quality Index (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.
authors.affiliation: Department of Dermatology, University of New Mexico, Albuquerque, NM 87131, USA. dmhawkins@salud.unm.edu
authors.forename: Danielle M
authors.initials: DM
authors.lastname: Hawkins
authors.forename: Melody J
authors.initials: MJ
authors.lastname: Eide
authors.forename: Henry W
authors.initials: HW
authors.lastname: Lim
mesh_terms: D000367:Age Factors; D003625:Data Collection; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012657:Self-Help Groups; D014983:Xeroderma Pigmentosum / Q000523:psychology*