title: Factors affecting quality of life in epidermolysis bullosa.
abstract: Epidermolysis bullosa is a rare group of inherited disorders that manifests as blistering or erosion of the skin in response to little or no apparent trauma. Patients suffer from long-term physical, social and economic consequences. Despite the fact that quality of life assessment has rapidly become a significant outcome variable in dermatology research, only a few studies regarding epidermolysis bullosa patients are available. This paper reviews studies evaluating the effect of epidermolysis bullosa on quality of life in patients and caregivers in order to assess which factors can best describe their health-related quality of life. Currently, considerable deficits prevail in both the diagnosis and treatment of rare skin diseases. Moreover, the psychological and social morbidities very easily evade the eyes of clinicians. Comparison of the impact of epidermolysis bullosa with that of other conditions is clearly valuable for making public policy decisions. This review indicates the need for more rigorous exploration of the impact of such diseases to further guide treatment and to monitor quality of care.
authors.affiliation: Health Service Research Unit, IDI IRCCS, Via Monti di Creta 104, 00167 Rome, Italy.
authors.forename: Calogero
authors.initials: C
authors.lastname: Pagliarello
authors.forename: Stefano
authors.initials: S
authors.lastname: Tabolli
mesh_terms: D017028:Caregivers / Q000523:psychology; D004820:Epidermolysis Bullosa / Q000175:diagnosis / Q000503:physiopathology* / Q000628:therapy; D006291:Health Policy; D006801:Humans; D011787:Quality of Health Care; D011788:Quality of Life