Development and Preliminary Validation of the HSQoL-24 Tool to Assess Quality of Life in Patients With Hidradenitis Suppurativa.

Affiliation

Servicio de Dermatología, Hospital Royo Villanova, Zaragoza, España; Grupo Aragonés de Investigación en Psicodermatología (GAI+PD), Zaragoza, España; Grupo Español de Investigación en Dermatología y Psiquiatría (GEDEPSI) de la Academia Española de Dermatología y Venereología (AEDV), Madrid, España. Electronic address: [Email]

Abstract

OBJECTIVE : Hidradenitis suppurativa (HS) is a chronic inflammatory disease of the skin with a negative impact on quality of life. Up to now, there are no disease specific instruments in Spanish to assess quality of life in HS. The objective of this study was to develop and validate a questionnaire to evaluate the quality of life in patients with HS.
METHODS : A multicentre study was carried out in Spain between 2016 and 2017 to develop the questionnaire. Both the conceptual framework and understanding of the patient's situation were considered through a review of the literature, consensus of professionals from different related health areas, and in-depth interviews with patients. The resulting questionnaire was passed to a group of 30 patients with 30±10 days of interval between both assessments.
RESULTS : The reliability analysis shows a good internal consistency and reproducibility with Cronbach's alpha score of 0.920 (test) and 0.917 (retest) and intraclass correlation coefficient with DLQI and Skindex-29 of 0.698 IC 95% (0.456-0.844) and 0.900 IC 95% (0.801-0.951) respectively. Cut-off points were established for its use and the instrument was found to be sensitive to change.
CONCLUSIONS : The HSQoL-24 is the first disease-specific self-administered instrument to assess quality of life in patients with HS in Spanish. It is user friendly, and easy to score. This study shows that the instrument is reliable, valid and sensitive to change, pending confirmatory study with a larger sample of 100 patients with HS.

Keywords

Calidad de vida,Diseño de cuestionario,Hidradenitis suppurativa,Hidradenitis supurativa,Patient-informed results,Psychometric validation,Quality of life,Questionnaire design,Resultados informados por los pacientes,Validación psicométrica,

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