S E Marrón1, M Gómez-Barrera2, L Tomás-Aragonés3, R M Díaz Díaz4, E Vilarrasa Rull5, M B Madrid Álvarez6, L Puig5. 1. 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: semarron@aedv.es. 2. Universidad San Jorge, Villanueva de Gallego, Zaragoza, España; Pharmacoeconomics & Outcomes Research Iberia, Pozuelo de Alarcón, Madrid, España. 3. Departamento de Psicología, Universidad de Zaragoza, 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. 4. Servicio de Dermatología, Hospital Infanta Sofía, San Sebastián de los Reyes, Madrid, España; Grupo Español de Investigación en Dermatología y Psiquiatría (GEDEPSI) de la Academia Española de Dermatología y Venereología (AEDV), Madrid, España. 5. Servicio de Dermatología, Hospital de la Santa Creu i Sant Pau, Barcelona, España. 6. Servicio de Dermatología, Hospital Dr. Negrín, Las Palmas de Gran Canaria, España; Grupo Español de Investigación en Dermatología y Psiquiatría (GEDEPSI) de la Academia Española de Dermatología y Venereología (AEDV), Madrid, España.
Abstract
INTRODUCTION AND OBJECTIVES: 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. MATERIAL AND 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.
INTRODUCTION AND OBJECTIVES: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. MATERIAL AND 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.
Authors: J S Kirby; L Thorlacius; B Villumsen; J R Ingram; A Garg; K B Christensen; M Butt; S Esmann; J Tan; G B E Jemec Journal: Br J Dermatol Date: 2019-12-26 Impact factor: 9.302
Authors: Servando E Marron; Manuel Gomez-Barrera; Lucía Tomas Aragones; Ana Goni-Navarro; Eva Vilarrasa-Rull; Rosa María Diaz-Diaz; Francisco Javier Garcia-Latasa de Aranibar; Ricardo Campos-Rodenas; Victoria Fuentelsaz Del Barrio; Yolanda Gilaberte-Calzada; Tamara Gracia-Cazaña; Anna María Morales-Callaghan; Sandra Ros-Abarca; María Blanca Madrid-Alvarez; Lluís Puig Journal: Acta Derm Venereol Date: 2021-08-25 Impact factor: 3.875
Authors: Pavel V Chernyshov; Andrew Y Finlay; Lucia Tomas-Aragones; Francoise Poot; Francesca Sampogna; Servando E Marron; Sergey V Zemskov; Damiano Abeni; Thrasyvoulos Tzellos; Jacek C Szepietowski; Christos C Zouboulis Journal: Int J Environ Res Public Health Date: 2021-06-06 Impact factor: 3.390
Authors: Piotr K Krajewski; Servando E Marrón; Lucía Tomas Aragones; Yolanda Gilaberte-Calzada; Jacek C Szepietowski Journal: Dermatol Ther (Heidelb) Date: 2022-03-10