title: Health-related quality of life in epidermolysis bullosa: Validation of the Dutch QOLEB questionnaire and assessment in the Dutch population.
abstract: Defining the health-related quality of life (HRQoL) in patients suffering from the heritable blistering disease epidermolysis bullosa (EB) is important in assessing the efficacy of new treatments. The quality of life in EB questionnaire (QOLEB) is an English 17-item EB-specific HRQoL measurement tool. The aim of this study was to develop a validated and reliable QOLEB in Dutch and assess the HRQoL in Dutch EB patients. The QOLEB was translated to Dutch according to protocol. Fifty-five adult patients across 4 EB subtypes participated. The QOLEB had excellant correlation with the Skindex-29 (ρs = 0.86), good correlation with the SF-36 physical score (ρs = -0.75), and moderate correlation with the SF-36 mental score (ρs = -0.43). The discriminative validity between the 4 different EB subtypes was significant (p = 0.002). The internal consistency was excellent (α = 0.905), and the test-retest reliability strong (ρs = 0.88). In conclusion, the Dutch QOLEB is a reliable and valid instrument for the assessment of the HRQoL in adult EB patients.
authors: Department of Dermatology, University Medical Center Groningen, University of Groningen, Hanzeplein 1, NL-9700 RB Groningen, PO Box 30.001, The Netherlands. w.y.yuen@umcg.nl.
authors: Wing Yan
authors: WY
authors: Yuen
authors: John W
authors: JW
authors: Frew
authors: Kelly
authors: K
authors: Veerman
authors: Edwin R
authors: ER
authors: van den Heuvel
authors: Dedee F
authors: DF
authors: Murrell
authors: Marcel F
authors: MF
authors: Jonkman
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D004820:Epidermolysis Bullosa / Q000175:diagnosis* / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D011237:Predictive Value of Tests; D011788:Quality of Life; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D014175:Translating; D055815:Young Adult