A REVIEW found seven hidradenitis suppurativa patient-reported key outcome measures, with HiSQOL-17 performing best across studies.

Hidradenitis Suppurativa Patient-Reported Outcome Measures Under the Microscope

Hidradenitis suppurativa (HS) is a chronic inflammatory skin disorder with a high psychosocial burden, and trials increasingly rely on patient-reported outcome measures (PROMs) to capture symptom impact and health-related quality of life. However, HS-specific PROMs vary widely in how rigorously they were developed and how strongly their measurement properties have been validated. In a systematic review and meta-analysis, researchers applied the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) framework to evaluate PROM development quality and the strength of psychometric evidence.

What the Review Covered

MEDLINE, Embase, and PubMed were searched from inception to October 23, 2025 for English-language studies describing the development or validation of HS-specific PROMs that assessed at least one psychometric property. Generic instruments were excluded. From 504 records screened, 26 studies were included (14 development and 12 validation studies), representing 5,811 patients across the study set. Fifteen unique HS-specific PROMs were identified: 10 health-related quality-of-life instruments, four symptom measures, and one treatment benefit measure.

HiSQOL-17 Shows Strongest Evidence

Fourteen PROMs achieved sufficient content validity, while eight met the highest standards for rigorous instrument development. In pooled analyses, the 17-item Hidradenitis Suppurativa Quality of Life measure (HiSQOL-17) demonstrated strong internal consistency (pooled Cronbach alpha 0.94) and strong construct validity (pooled Pearson r 0.84 and pooled Spearman r 0.88). Across seven evaluated PROMs, only two demonstrated sufficient internal consistency overall; others were rated indeterminate because evidence for unidimensionality was absent or low quality. Test-retest reliability was sufficient in nine PROMs, and responsiveness was sufficient in five. No included studies evaluated measurement error.

Why It Matters for Trials

Using COSMIN criteria, seven HS-specific PROMs met thresholds for recommendation by demonstrating sufficient content validity plus internal consistency or another relevant measurement property (for formative instruments). The authors concluded that further research is needed to strengthen validation of HS-specific instruments and close persistent evidence gaps.

Reference: Tarafdar N et al. Hidradenitis Suppurativa Patient-Reported Outcome Measures: A Systematic Review and Meta-Analysis. JAMA Dermatol. 2026; DOI: 10.1001/jamadermatol.2025.5644.