{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,1]],"date-time":"2026-08-01T02:26:22Z","timestamp":1785551182265,"version":"3.56.0"},"reference-count":35,"publisher":"American Medical Association (AMA)","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JAMA Dermatol"],"published-print":{"date-parts":[[2026,3,1]]},"abstract":"\n Importance<\/jats:title>\n Hidradenitis suppurativa (HS) is a chronic inflammatory skin disorder with high psychosocial burden. Despite growing use of patient-reported outcome measures (PROMs) in HS trials, variance in quality and validation of existing instruments remains to be studied.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n To systematically review HS-specific PROMs using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) framework, evaluating development quality and psychometric evidence, and to perform a meta-analysis of key properties to summarize the evidence base and provide recommendations for clinical and research use.<\/jats:p>\n <\/jats:sec>\n \n Data Sources<\/jats:title>\n MEDLINE, Embase, and PubMed were searched from inception to October 23, 2025, for English-language studies.<\/jats:p>\n <\/jats:sec>\n \n Study Selection<\/jats:title>\n Articles describing the development or validation of HS-specific PROMs that evaluated at least 1 psychometric property were included. Generic instruments (eg, Dermatology Life Quality Index, pain numeric rating scale) were excluded. Screening was conducted by 2 independent reviewers.<\/jats:p>\n <\/jats:sec>\n \n Data Extraction and Synthesis<\/jats:title>\n \n Two reviewers independently extracted data, appraised risk of bias with the COSMIN checklist, and graded quality of evidence using COSMIN-modified Grading of Recommendations Assessment, Development, and Evaluation (GRADE). Random-effects meta-analysis pooled Cronbach \u03b1 and correlation coefficients; heterogeneity was quantified using\n \n I\n 2<\/jats:sup>\n <\/jats:italic>\n .\n <\/jats:p>\n <\/jats:sec>\n \n Main Outcomes and Measures<\/jats:title>\n COSMIN-guided appraisal and graded quality of evidence of PROM measurement properties, including content validity, structural validity, internal consistency, reliability, responsiveness, and measurement error.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n Of 504 records screened, 26 studies (14 developmental, 12 validation) met the criteria (total number of patients across 26 studies was 5811; age ranged from median 33.9 [range, 25-41] to mean [SD] 46.9 [14.1] years), identifying 15 unique HS-specific PROMs (10 health-related quality of life, 4 symptom, 1 treatment benefit). Fourteen achieved sufficient content validity and 8 met the highest standards for rigorous instrument development. Meta-analysis demonstrated strong internal consistency and construct validity for the 17-item Hidradenitis Suppurativa Quality of Life (HiSQOL-17) PROM (pooled Cronbach \u03b1\u2009=\u20090.94;\n \n I\n 2<\/jats:sup>\n <\/jats:italic>\n \u2009=\u200981.3%; pooled Pearson\n r<\/jats:italic>\n \u2009=\u20090.84;\n \n I\n 2<\/jats:sup>\n <\/jats:italic>\n \u2009=\u200974%; pooled Spearman\n r<\/jats:italic>\n \u2009=\u20090.88,\n \n I\n 2<\/jats:sup>\n <\/jats:italic>\n \u2009=\u200929%). Of 7 evaluated PROMs, 2 displayed sufficient internal consistency. The remainder were indeterminate due to absent or low-quality evidence for unidimensionality. Test-retest reliability was sufficient in 9 PROMs, and responsiveness was rated sufficient in 5. No studies evaluated measurement error. Seven PROMs met COSMIN criteria for recommendation.\n <\/jats:p>\n <\/jats:sec>\n \n Conclusions and Relevance<\/jats:title>\n In this study, 7 PROMs demonstrated sufficiency of both content validity and either internal consistency or another relevant measurement property (formative instruments). Further research is needed to strengthen the validation of HS-specific instruments.<\/jats:p>\n <\/jats:sec>","DOI":"10.1001\/jamadermatol.2025.5644","type":"journal-article","created":{"date-parts":[[2026,1,28]],"date-time":"2026-01-28T16:31:10Z","timestamp":1769617870000},"page":"264","source":"Crossref","is-referenced-by-count":1,"title":["Hidradenitis Suppurativa Patient-Reported Outcome Measures"],"prefix":"10.1001","volume":"162","author":[{"given":"Nawar","family":"Tarafdar","sequence":"first","affiliation":[{"name":"Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meghna","family":"Varambally","sequence":"additional","affiliation":[{"name":"Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nima","family":"Karimi","sequence":"additional","affiliation":[{"name":"Schulich School 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