Marrón S E, Gómez-Barrera M, Tomás-Aragonés L, Díaz Díaz R M, Vilarrasa Rull E, Madrid Álvarez M B, Puig L
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.
Universidad San Jorge, Villanueva de Gallego, Zaragoza, España; Pharmacoeconomics & Outcomes Research Iberia, Pozuelo de Alarcón, Madrid, España.
Actas Dermosifiliogr (Engl Ed). 2019 Sep;110(7):554-560. doi: 10.1016/j.ad.2019.02.002. Epub 2019 Apr 23.
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.
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.
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.
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.
化脓性汗腺炎（HS）是一种慢性皮肤炎症性疾病，对生活质量有负面影响。到目前为止，西班牙尚无用于评估HS患者生活质量的疾病特异性工具。本研究的目的是开发并验证一份用于评估HS患者生活质量的问卷。
2016年至2017年在西班牙开展了一项多中心研究以开发该问卷。通过文献综述、不同相关健康领域专业人员的共识以及对患者的深入访谈，综合考虑了概念框架和对患者情况的理解。将生成的问卷分发给30名患者，两次评估之间间隔30±10天。
可靠性分析显示出良好的内部一致性和可重复性，Cronbach's alpha系数测试值为0.920，重测值为0.917，与DLQI和Skindex - 29的组内相关系数分别为0.IC 95%（0.456 - 0.844）和0.900 IC 95%（0.801 - 0.951）。确定了其使用的截断点，发现该工具对变化敏感。
HSQoL - 24是首个用于评估西班牙HS患者生活质量的疾病特异性自填式工具。它使用方便，易于评分。本研究表明该工具可靠、有效且对变化敏感，有待对100名HS患者的更大样本进行验证性研究。
