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Hidradenitis Suppurativa Patient-Reported Outcome Measures: A Systematic Review and Meta-Analysis
Nawar Tarafdar1, Meghna Varambally1, Nima Karimi1
1Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada.
JAMA Dermatology
|January 28, 2026
Summary
This review assessed patient-reported outcome measures (PROMs) for hidradenitis suppurativa (HS), finding 7 PROMs suitable for clinical use. Further research is recommended to enhance the validation of HS-specific instruments.
Area of Science:
- Dermatology
- Clinical Trials
- Health Outcomes Research
Background:
- Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition with significant psychosocial impact.
- Patient-reported outcome measures (PROMs) are increasingly used in HS trials, but their quality and validation vary.
- Systematic evaluation of HS-specific PROMs is needed to guide clinical and research applications.
Purpose of the Study:
- To systematically review hidradenitis suppurativa-specific PROMs using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) framework.
- To evaluate the development quality and psychometric evidence of these PROMs.
- To provide recommendations for the use of PROMs in HS research and clinical practice.
Main Methods:
- A systematic literature search was conducted in MEDLINE, Embase, and PubMed up to October 23, 2025.
- Studies on HS-specific PROMs with psychometric property evaluation were included; generic instruments were excluded.
- Data extraction, risk of bias appraisal (COSMIN checklist), and evidence quality grading (COSMIN-modified GRADE) were performed by two independent reviewers.
Main Results:
- Fifteen unique HS-specific PROMs were identified across 26 studies involving 5811 patients.
- Fourteen PROMs achieved sufficient content validity, and 8 met high standards for instrument development.
- The 17-item Hidradenitis Suppurativa Quality of Life (HiSQOL-17) PROM showed strong internal consistency and construct validity. Seven PROMs met COSMIN criteria for recommendation.
Conclusions:
- Seven hidradradenitis suppurativa-specific PROMs demonstrated sufficient content validity and key measurement properties.
- The HiSQOL-17 PROM exhibits robust psychometric properties for assessing quality of life in HS.
- Further research is necessary to strengthen the validation of HS-specific instruments for comprehensive patient assessment.
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