Epidermolizis bülloza yaşam kalitesi puanlarının klinik uygulamalarının geliştirilmesi: QOLEB anketinde klinik olarak anlamlı sonuçların tanımlanması

Abstract

Objective The Quality of Life in Epidermolysis Bullosa (QOLEB) score is an Epidermolysis Bullosa (EB) specific quality of life (QoL) measurement tool. It is a statistically valid and reliable questionnaire which has benefits over generic QoL tools in QoL evaluation in EB. It also has important implications in the evaluation of the clinical efficacy of new interventions in EB. The utility of this score would be increased if the clinical relevance of individual scores and changes in QOLEB scores could be further understood.Methods In order to achieve this, the minimal clinically important difference (MCID) was calculated using both anchor-based and distribution-based techniques. Banding techniques were also applied to the QOLEB questionnaire in order to stratify scores into “very mild”, “mild”, “moderate”, “severe” and “very severe” categories.Results Using these methodologies, the MCID for the QOLEB score was calculated at a 6 point change in QOLEB scores, and the QOLEB bands were calculated as: 0-4 points for ‘very mild’, 5-9 points for ‘mild’, 10-19 points for ‘moderate’, 20-34 points for ‘severe’ and 35-51 points for ‘very severe’ impact on QoL.Conclusions Calculating the MCID and clinical bands for the QOLEB questionnaire increases the breadth of clinical applications for the QOLEB questionnaire. It now has direct utility in determining the clinical significance of interventions in EB by evaluating changes in QOLEB scores and how they correlate to the MCID and clinical bands.