Transcultural Validation of a Spanish Version of the Quality of Life in Epidermolysis Bullosa Questionnaire

Alvaro Rafael Villar Hernández, Fernando Molero Alonso, Álvaro Jesús Aguado Marín and Manuel Posada de la Paz
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Alvaro Rafael Villar Hernández: Dystrophic Epidermolysis Bullosa Research Association ONG DEBRA España Piel de Mariposa, 29601 Marbella, Spain
Fernando Molero Alonso: Department of Social and Organizational Psychology, Universidad Nacional de Educación a Distancia (UNED), 28040 Madrid, Spain
Álvaro Jesús Aguado Marín: School of Management, New Jersey Institute of Technology, Newark, NJ 07102, USA
Manuel Posada de la Paz: Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III, 28029 Madrid, Spain

IJERPH, 2022, vol. 19, issue 12, 1-11

Abstract: Introduction: Epidermolysis bullosa (EB) is a relatively infrequent genodermatosis for which there is still no cure, and which impacts the quality of life of those that are affected by it. The Quality of Life evaluation in Epidermolysis Bullosa (QoLEB) questionnaire was specifically developed for English-speaking persons with EB. Objectives: To undertake the transcultural adaptation and analysis of the psychometric properties of a Spanish version of the QoLEB questionnaire. Method: We designed an observational study to implement the process of translation and validation of the scale in accordance with World Health Organisation guidelines. We assessed the content validity of the Spanish version with the participation of 33 adult patients who presented with four principal subtypes of EB. The subjects were examined and evaluated using the QoLEB and Short Form-36 (SF-36) questionnaires. Results: The Spanish version of the QoLEB displayed excellent internal consistency and content validity, α = 0.91. Test–retest reliability was likewise excellent (ps = 0.93), as was the reliability among subtypes (range ps = 0.82–0.93). The functional part of the QoLEB correlated well with the SF-36 physical component summary (ps = 0.70). The emotional QoLEB was moderately correlated with the SF-36 mental component summary (ps = 0.49). Significant discriminant validity existed between the global score of the questionnaire ( p = 0.033) and the functional scale ( p = 0.003). Conclusions: The Spanish version of the QoLEB questionnaire can be recommended for use in any subsequent studies seeking to assess the efficacy of possible treatments and care programmes in this group.

Keywords: epidermolysis bullosa; quality of life; validation study; transcultural adaptation; Spanish QOLEB (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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