Garg Amit, Burge Russel, Cohee Andrea, Wallinger Hayley, Truman Isabel, Keal Aaron, Strunk Andrew, Barlow Sophie
Northwell, New Hyde Park, NY, USA.
Eli Lilly and Company, Value Evidence and Outcomes, Indianapolis, IN, USA.
Br J Dermatol. 2025 Jan 24;192(2):261-268. doi: 10.1093/bjd/ljae367.
Among skin diseases, hidradenitis suppurativa (HS) has unique symptoms and physical features. Patient-reported outcome measures (PROMs) unrelated to specific skin diseases may not fully characterize the influence of HS on quality of life (QoL). An HS-specific PROM is needed to capture the impact of HS on patients' QoL in a real-world setting.
To validate the Hidradenitis Suppurativa Quality of Life Questionnaire (HiSQOL) as an HS-specific PROM by comparing it with the Dermatology Life Quality Index (DLQI) in clinical practice.
Data were drawn from the Adelphi HS Disease Specific Programme™, a cross-sectional survey of physicians and patients conducted in France, Germany, Italy, Spain and the USA between November 2020 and April 2021. Practising physicians each provided demographic and clinical data for 5-7 consecutively evaluated patients with HS aged at least 10 years receiving any treatment for HS, and an additional 3 patients undergoing biologic treatment; only patients aged at least 18 years were included in this study. Patients completed the DLQI and HiSQOL. Construct validity was assessed by Pearson's correlation between DLQI and HiSQOL scores. The HiSQOL item discrimination was assessed by comparing differences in item responses between the highest and lowest 25% of HiSQOL scores. Multivariable linear regressions assessed relationships between individual PROM item responses and the total score of the other PROM.
In total, 677 patients [mean (SD) age 34.3 (11.3) years; 57.3% female (n = 388/677)] completed both the HiSQOL and DLQI. There was strong correlation between HiSQOL and DLQI total scores (Pearson's correlation coefficient 0.87, 95% confidence interval 0.85-0.89; P < 0.001). The HiSQOL items that had the biggest impact on QoL were related to 'embarrassment', 'depression' and 'anxiety'; items that also had the lowest relationships with total DLQI score.
The HiSQOL is a valid tool for assessing QoL in patients with HS in a real-world setting. Furthermore, the HiSQOL better captures aspects of HS that have the highest impact on QoL, including depression and anxiety, which are not captured by the DLQI.
在皮肤病中，化脓性汗腺炎（HS）具有独特的症状和体征。与特定皮肤病无关的患者报告结局指标（PROMs）可能无法充分描述HS对生活质量（QoL）的影响。需要一种HS特异性的PROM来在现实环境中评估HS对患者生活质量的影响。
通过在临床实践中将化脓性汗腺炎生活质量问卷（HiSQOL）与皮肤病生活质量指数（DLQI）进行比较，验证HiSQOL作为HS特异性PROM的有效性。
数据来自阿德尔菲HS疾病特定项目™，这是一项于2020年11月至2021年4月在法国、德国、意大利、西班牙和美国对医生和患者进行的横断面调查。每位执业医生提供5 - 7名连续评估的至少10岁且正在接受任何HS治疗的HS患者的人口统计学和临床数据，以及另外3名接受生物治疗的患者的数据；本研究仅纳入至少18岁的患者。患者完成DLQI和HiSQOL。通过DLQI和HiSQOL得分之间的Pearson相关性评估结构效度。通过比较HiSQOL得分最高和最低的25%患者在项目回答上的差异来评估HiSQOL项目的区分度。多变量线性回归评估单个PROM项目回答与另一个PROM总分之间的关系。
共有677例患者[平均（标准差）年龄34.3（11.3）岁；57.3%为女性（n = 388/677）]完成了HiSQOL和DLQI。HiSQOL与DLQI总分之间存在强相关性（Pearson相关系数0.87，95%置信区间0.85 - 0.89；P < 0.001）。对生活质量影响最大的HiSQOL项目与“尴尬”“抑郁”和“焦虑”有关；这些项目与DLQI总分的相关性也最低。
HiSQOL是在现实环境中评估HS患者生活质量的有效工具。此外，HiSQOL能更好地捕捉对生活质量影响最大的HS方面，包括抑郁和焦虑，而这些是DLQI未涵盖的。
