Quality of life assessment and disease experience of patient members of a web-based hydroa vacciniforme support group.

摘要

BACKGROUND/PURPOSE: Hydroa vacciniforme (HV) is a rare photodermatosis that primarily affects children. It is characterized by photodistributed vesicles that heal with scarring. The purposes of this study are to perform the initial investigation into the effect of HV on quality of life (QoL) and gain insight into disease diagnosis and management. METHODS: Using the listserv from a web-based, international HV support group, either the Dermatology Life Quality Index (DLQI) or the Children's DLQI (CDLQI), and an HV-specific questionnaire were administered. RESULTS: Fifteen HV patients participated, nine (60%) males and six (40%) females. Median age at onset was 7 years, and 11/15 (73%) were younger than 18 years. The majority of patients were Caucasian (73%). Children cited life quality as being negatively impacted by an inability to play outdoors while adults noted QoL influences due to limitations on clothing choices. The mean CLDLQI and DLQI scores, 12.1 and 8.5, respectively, suggest a higher negative QoL impact than previously reported indices for generalized eczema, atopic dermatitis, and psoriasis. CONCLUSION: When compared with other dermatoses, HV appears to have an equal or greater impact on patients' QoL. Dermatologists should be aware of the psychosociologic impact of this disease, especially on young HV patients.