Validation of the real-world application of the Hidradenitis Suppurativa Quality of Life (HiSQOL) score to adults with hidradenitis suppurativa

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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.

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