Health-related Quality of Life in Epidermolysis Bullosa:Validation of the Dutch QOLEB Questionnaire and Assessment in the Dutch Population

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 (rh... Mehr ...

Verfasser: Yuen, Wing Yan
Frew, John W.
Veerman, Kelly
van den Heuvel, Edwin R.
Murrell, Dedee F.
Jonkman, Marcel F.
Dokumenttyp: Artikel
Erscheinungsdatum: 2014
Reihe/Periodikum: Yuen , W Y , Frew , J W , Veerman , K , van den Heuvel , E R , Murrell , D F & Jonkman , M F 2014 , ' Health-related Quality of Life in Epidermolysis Bullosa : Validation of the Dutch QOLEB Questionnaire and Assessment in the Dutch Population ' , Acta Derm Venerol , vol. 94 , no. 4 , pp. 442-447 . https://doi.org/10.2340/00015555-1758
Schlagwörter: epidermolysis bullosa / health-related quality of life / validation / questionnaire / assessment / MEDICAL OUTCOMES / SKIN-DISEASE / SF-36 / DERMATOLOGY / INSTRUMENT / IMPAIRMENT / DERMATITIS / VALIDITY / PATIENT / VERSION
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-27059871
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://hdl.handle.net/11370/ef090419-1712-4ee5-8595-8cbf7437de43

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 (rho(s)=0.86), good correlation with the SF-36 physical score (rho(s)=-0.75), and moderate correlation with the SF-36 mental score (rho(s)=-0.43). The discriminative validity between the 4 different EB subtypes was significant (p=0.002). The internal consistency was excellent (alpha=0.905), and the test-retest reliability strong (rho(s)=0.88). In conclusion, the Dutch QOLEB is a reliable and valid instrument for the assessment of the HRQoL in adult EB patients.