title: Quality of life measurements in epidermolysis bullosa: tools for clinical research and patient care.
abstract: Quality of life (QOL) evaluation in epidermolysis bullosa (EB) has important applications in clinical management, patient advocacy, clinical research, and the development of new treatments. Several new quantitative and qualitative QOL measurement tools were developed recently, providing insight into the impact EB has on individuals and their family members. Selection of the most appropriate QOL tool for patients who have EB depends on not only the type of information required but also the general or specific cohort being examined. EB-specific quantitative tools possess the highest level of content validity and statistical accuracy. However, generic dermatologic tools may also be appropriate in some circumstances. Overall, QOL evaluation in EB is still a developing area of research that may help improve patient management and assess emerging treatment modalities for their efficacy in improving the QOL of patients with EB.
authors: University of New South Wales, Sydney 2052, Australia.
authors: John W
authors: JW
authors: Frew
authors: Dédée F
authors: DF
authors: Murrell
mesh_terms: D004820:Epidermolysis Bullosa / Q000503:physiopathology* / Q000523:psychology*; D006801:Humans; D011788:Quality of Life; D011795:Surveys and Questionnaires