Background: 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.
Objectives: 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.
Methods: 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.
Results: 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.
Conclusions: 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.
Hidradenitis suppurativa (‘HS’ for short) is a painful skin disease that causes boils, abscesses, tunnels and scarring on the body. For these reasons, HS can greatly reduce a person’s quality of life. To measure the impact HS can have on a person’s quality of life, a questionnaire called the Hidradenitis Suppurativa Quality of Life Questionnaire (‘HiSQOL’ for short) is used in clinical trials. This study was carried out in clinics across France, Germany, Italy, Spain and the USA. We looked at whether the HiSQOL can capture the impact of HS on the quality of life of people with the disease. This was done by comparing the HiSQOL to another questionnaire called the DLQI. The DLQI measures the impact of skin conditions in clinical trials and in clinical practice. We found that there was a strong relationship between DLQI and HiSQOL scores in clinical practice. Questions in the HiSQOL that most affected the quality of life of people with HS related to ‘embarrassment’, ‘depression’ and ‘anxiety’. Our findings indicate that the DLQI may not accurately capture which items have the biggest impact on the quality of life of people with HS. Therefore, the HiSQOL may be used to assess changes in quality of life in the real world.
© The Author(s) 2024. Published by Oxford University Press on behalf of British Association of Dermatologists.