{"id":"https://openalex.org/W3196965262","doi":"https://doi.org/10.2196/27869","title":"Trends in Hidradenitis Suppurativa Disease Severity and Quality of Life Outcome Measures: Scoping Review","display_name":"Trends in Hidradenitis Suppurativa Disease Severity and Quality of Life Outcome Measures: Scoping Review","publication_year":2021,"publication_date":"2021-09-06","ids":{"openalex":"https://openalex.org/W3196965262","doi":"https://doi.org/10.2196/27869","mag":"3196965262","pmid":"https://pubmed.ncbi.nlm.nih.gov/37632807","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/10334968"},"language":"en","primary_location":{"id":"doi:10.2196/27869","doi":"https://doi.org/10.2196/27869","is_oa":true,"landing_page_url":"https://doi.org/10.2196/27869","pdf_url":null,"source":{"id":"https://openalex.org/S4210205725","display_name":"JMIR Dermatology","issn_l":"2562-0959","issn":["2562-0959"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","doyens","ki-jl-1","medline","poland-20","russia-white-list-4"],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"JMIR Dermatology","raw_type":"journal-article"},"volume":null,"type":"review","indexed_in":["crossref","doaj","pubmed"],"open_access":{"is_oa":true,"oa_status":"diamond","oa_url":"https://doi.org/10.2196/27869","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5080658850","display_name":"Jalal Maghfour","orcid":"https://orcid.org/0000-0002-1121-2709","observed_orcids":["https://orcid.org/0000-0002-1121-2709"]},"institutions":[{"id":"https://openalex.org/I2803043754","display_name":"Henry Ford Hospital","ror":"https://ror.org/0193sb042","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I154057602","https://openalex.org/I2803043754"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jalal Maghfour","raw_affiliation_strings":["Department of Dermatology, Henry Ford Hospital, Detroit, MI, United States"],"raw_orcid":"https://orcid.org/0000-0002-1121-2709","affiliations":[{"raw_affiliation_string":"Department of Dermatology, Henry Ford Hospital, Detroit, MI, United States","institution_ids":["https://openalex.org/I2803043754"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5038826476","display_name":"Torunn Elise Sivesind","orcid":"https://orcid.org/0000-0003-4805-0632","observed_orcids":["https://orcid.org/0000-0003-4805-0632"]},"institutions":[{"id":"https://openalex.org/I51713134","display_name":"University of Colorado Anschutz","ror":"https://ror.org/03wmf1y16","country_code":"US","type":"education","lineage":["https://openalex.org/I51713134"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Torunn Elise Sivesind","raw_affiliation_strings":["Department of Dermatology, University of Colorado School of Medicine, Aurora, CO, United States"],"raw_orcid":"https://orcid.org/0000-0003-4805-0632","affiliations":[{"raw_affiliation_string":"Department of Dermatology, University of Colorado School of Medicine, Aurora, CO, United States","institution_ids":["https://openalex.org/I51713134"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5090712336","display_name":"Robert Paul Dellavalle","orcid":"https://orcid.org/0000-0001-8132-088X","observed_orcids":["https://orcid.org/0000-0001-8132-088X"]},"institutions":[{"id":"https://openalex.org/I1322918889","display_name":"United States Department of Veterans Affairs","ror":"https://ror.org/05rsv9s98","country_code":"US","type":"government","lineage":["https://openalex.org/I1322918889"]},{"id":"https://openalex.org/I51713134","display_name":"University of Colorado Anschutz","ror":"https://ror.org/03wmf1y16","country_code":"US","type":"education","lineage":["https://openalex.org/I51713134"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Robert Paul Dellavalle","raw_affiliation_strings":["Department of Dermatology, University of Colorado School of Medicine, Aurora, CO, United States","Dermatology Service, Rocky Mountain Regional Veterans Affairs Medical Center, Aurora, CO, United States"],"raw_orcid":"https://orcid.org/0000-0001-8132-088X","affiliations":[{"raw_affiliation_string":"Department of Dermatology, University of Colorado School of Medicine, Aurora, CO, United States","institution_ids":["https://openalex.org/I51713134"]},{"raw_affiliation_string":"Dermatology Service, Rocky Mountain Regional Veterans Affairs Medical Center, Aurora, CO, United States","institution_ids":["https://openalex.org/I1322918889"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5017289850","display_name":"Cory A. Dunnick","orcid":"https://orcid.org/0000-0002-9262-1693","observed_orcids":["https://orcid.org/0000-0002-9262-1693"]},"institutions":[{"id":"https://openalex.org/I51713134","display_name":"University of Colorado Anschutz","ror":"https://ror.org/03wmf1y16","country_code":"US","type":"education","lineage":["https://openalex.org/I51713134"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Cory Dunnick","raw_affiliation_strings":["Department of Dermatology, University of Colorado School of Medicine, Aurora, CO, United States"],"raw_orcid":"https://orcid.org/0000-0002-9262-1693","affiliations":[{"raw_affiliation_string":"Department of Dermatology, University of Colorado School of Medicine, Aurora, CO, United States","institution_ids":["https://openalex.org/I51713134"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":3,"corresponding_author_ids":["https://openalex.org/A5017289850"],"corresponding_institution_ids":["https://openalex.org/I51713134"],"apc_list":null,"apc_paid":null,"fwci":0.2652,"has_fulltext":true,"cited_by_count":9,"citation_normalized_percentile":{"value":0.3235786,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":93,"max":97},"biblio":{"volume":"4","issue":"2","first_page":"e27869","last_page":"e27869"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T12731","display_name":"Hidradenitis Suppurativa and Treatments","score":1.0,"subfield":{"id":"https://openalex.org/subfields/2708","display_name":"Dermatology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T12731","display_name":"Hidradenitis Suppurativa and Treatments","score":1.0,"subfield":{"id":"https://openalex.org/subfields/2708","display_name":"Dermatology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T12328","display_name":"Autoimmune and Inflammatory Disorders","score":0.0,"subfield":{"id":"https://openalex.org/subfields/2713","display_name":"Epidemiology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T13328","display_name":"Osteomyelitis and Bone Disorders Research","score":0.0,"subfield":{"id":"https://openalex.org/subfields/2745","display_name":"Rheumatology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/hidradenitis-suppurativa","display_name":"hidradenitis suppurativa","score":1.0},{"id":"https://openalex.org/keywords/dermatology-life-quality-index","display_name":"Dermatology Life Quality Index","score":0.9789999723434448},{"id":"https://openalex.org/keywords/randomized-controlled-trials","display_name":"randomized controlled trials","score":0.7440000176429749},{"id":"https://openalex.org/keywords/treatment-efficacy","display_name":"treatment efficacy","score":0.5320000052452087}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.7905917167663574},{"id":"https://openalex.org/C2776002364","wikidata":"https://www.wikidata.org/wiki/Q341999","display_name":"Hidradenitis suppurativa","level":3,"score":0.7585965394973755},{"id":"https://openalex.org/C168563851","wikidata":"https://www.wikidata.org/wiki/Q1436668","display_name":"Randomized controlled trial","level":2,"score":0.6896186470985413},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.6690758466720581},{"id":"https://openalex.org/C14184104","wikidata":"https://www.wikidata.org/wiki/Q1362526","display_name":"Visual analogue scale","level":2,"score":0.5660951137542725},{"id":"https://openalex.org/C189708586","wikidata":"https://www.wikidata.org/wiki/Q1504425","display_name":"Systematic review","level":3,"score":0.5468165874481201},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.532319962978363},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.5164383053779602},{"id":"https://openalex.org/C535046627","wikidata":"https://www.wikidata.org/wiki/Q30612","display_name":"Clinical trial","level":2,"score":0.43424081802368164},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.4275628924369812},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.2472848892211914},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.0},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.0},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0}],"mesh":[],"locations_count":5,"locations":[{"id":"doi:10.2196/27869","doi":"https://doi.org/10.2196/27869","is_oa":true,"landing_page_url":"https://doi.org/10.2196/27869","pdf_url":null,"source":{"id":"https://openalex.org/S4210205725","display_name":"JMIR Dermatology","issn_l":"2562-0959","issn":["2562-0959"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","doyens","ki-jl-1","medline","poland-20","russia-white-list-4"],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"JMIR Dermatology","raw_type":"journal-article"},{"id":"doi:10.2196/preprints.27869","doi":"https://doi.org/10.2196/preprints.27869","is_oa":true,"landing_page_url":"https://doi.org/10.2196/preprints.27869","pdf_url":null,"source":null,"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":null,"raw_type":"posted-content"},{"id":"pmh:oai:pubmedcentral.nih.gov:10334968","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/10334968","pdf_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC10334968/pdf/derma_v4i2e27869.pdf","source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"JMIR Dermatol","raw_type":"Text"},{"id":"pmid:37632807","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/37632807","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"JMIR dermatology","raw_type":"Journal Article"},{"id":"pmh:oai:doaj.org/article:635b2bf8f1674b1ead6f4350953b1287","doi":null,"is_oa":false,"landing_page_url":"https://doaj.org/article/635b2bf8f1674b1ead6f4350953b1287","pdf_url":null,"source":{"id":"https://openalex.org/S4306401280","display_name":"DOAJ (DOAJ: Directory of Open Access Journals)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"JMIR Dermatology, Vol 4, Iss 2, p e27869 (2021)","raw_type":"article"}],"best_oa_location":{"id":"doi:10.2196/27869","doi":"https://doi.org/10.2196/27869","is_oa":true,"landing_page_url":"https://doi.org/10.2196/27869","pdf_url":null,"source":{"id":"https://openalex.org/S4210205725","display_name":"JMIR Dermatology","issn_l":"2562-0959","issn":["2562-0959"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","doyens","ki-jl-1","medline","poland-20","russia-white-list-4"],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"JMIR Dermatology","raw_type":"journal-article"},"sustainable_development_goals":[{"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3","score":1.0}],"sustainable_development_goals_aurora":[{"display_name":"Responsible consumption and production","id":"https://metadata.un.org/sdg/12","score":0.4300000071525574}],"study_designs":[{"display_name":"Systematic Review","id":"https://openalex.org/study-designs/systematic-review"}],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":69,"referenced_works":["https://openalex.org/W122038127","https://openalex.org/W1490634881","https://openalex.org/W1523842489","https://openalex.org/W1530708608","https://openalex.org/W1964172790","https://openalex.org/W1973966753","https://openalex.org/W1980150217","https://openalex.org/W1984728871","https://openalex.org/W2027907732","https://openalex.org/W2030859744","https://openalex.org/W2032390761","https://openalex.org/W2032710959","https://openalex.org/W2041193055","https://openalex.org/W2048764846","https://openalex.org/W2066208621","https://openalex.org/W2068176248","https://openalex.org/W2071897760","https://openalex.org/W2098105262","https://openalex.org/W2110755088","https://openalex.org/W2131806221","https://openalex.org/W2134833483","https://openalex.org/W2139316812","https://openalex.org/W2149371387","https://openalex.org/W2149717883","https://openalex.org/W2151339311","https://openalex.org/W2163545413","https://openalex.org/W2175027747","https://openalex.org/W2272501710","https://openalex.org/W2300537080","https://openalex.org/W2313462206","https://openalex.org/W2503109448","https://openalex.org/W2570056763","https://openalex.org/W2626543821","https://openalex.org/W2694182897","https://openalex.org/W2763948764","https://openalex.org/W2767737860","https://openalex.org/W2797970907","https://openalex.org/W2806696712","https://openalex.org/W2808540827","https://openalex.org/W2809673901","https://openalex.org/W2811395800","https://openalex.org/W2890730116","https://openalex.org/W2893944246","https://openalex.org/W2908669769","https://openalex.org/W2914011229","https://openalex.org/W2920075703","https://openalex.org/W2954832680","https://openalex.org/W2972297844","https://openalex.org/W2977813234","https://openalex.org/W2980141117","https://openalex.org/W2980777105","https://openalex.org/W2995613856","https://openalex.org/W2997128305","https://openalex.org/W3009482552","https://openalex.org/W3023267444","https://openalex.org/W3024966801","https://openalex.org/W3048246820","https://openalex.org/W3112723764","https://openalex.org/W3164924099","https://openalex.org/W3169364523","https://openalex.org/W3189375867","https://openalex.org/W3198918988","https://openalex.org/W4233770629","https://openalex.org/W4236815479","https://openalex.org/W4237758135","https://openalex.org/W4241453008","https://openalex.org/W4247532723","https://openalex.org/W4250676641","https://openalex.org/W4252108050"],"related_works":["https://openalex.org/W4280493361","https://openalex.org/W2513029167","https://openalex.org/W7161539943","https://openalex.org/W2942727586","https://openalex.org/W3009482552","https://openalex.org/W7165557757","https://openalex.org/W2982836600","https://openalex.org/W3196138033","https://openalex.org/W3126748472","https://openalex.org/W4296718373"],"abstract_inverted_index":{"BACKGROUND:":[0],"Although":[1],"there":[2],"has":[3],"been":[4,76],"an":[5],"increase":[6],"in":[7,60,70,88,119,174],"the":[8,34,57,61,133,143,167,187],"number":[9],"of":[10,23,28,36,63,95,226,238],"randomized":[11,71],"controlled":[12,72,179],"trials":[13,73,180],"evaluating":[14],"treatment":[15],"efficacy":[16],"for":[17,44,138],"hidradenitis":[18],"suppurativa":[19],"(HS),":[20],"instrument":[21,137],"measurements":[22],"disease":[24,64,139],"severity":[25,65],"and":[26,38,66,97,145,159,197],"quality":[27],"life":[29],"(QoL)":[30],"are":[31],"varied,":[32],"making":[33],"compilation":[35],"data":[37],"comparisons":[39],"between":[40],"studies":[41,193],"a":[42,51,202],"challenge":[43],"clinicians.":[45],"OBJECTIVE:":[46],"We":[47],"aimed":[48],"to":[49,55,102,110,200,218],"perform":[50],"systematic":[52,121],"literature":[53],"search":[54],"examine":[56],"recent":[58],"trends":[59],"use":[62,201],"QoL":[67,171,209],"outcome":[68,172],"instruments":[69,173,213],"that":[74,229],"have":[75],"conducted":[77,87,181],"on":[78],"patients":[79,231],"with":[80,232],"HS.":[81,233],"METHODS:":[82],"A":[83,205],"scoping":[84],"review":[85],"was":[86,132],"February":[89,111],"2021.":[90,112],"The":[91,124,152],"PubMed,":[92],"Embase,":[93],"Web":[94],"Science,":[96],"Cochrane":[98],"databases":[99],"were":[100,117,166,194,211,215],"used":[101,136,170,186],"identify":[103],"all":[104,227],"articles":[105,116],"published":[106],"from":[107,182],"January":[108],"1964":[109],"In":[113],"total,":[114],"41":[115],"included":[118],"this":[120],"review.":[122],"RESULTS:":[123],"HS":[125,175],"Clinical":[126],"Response":[127],"(HiSCR)":[128],"score":[129],"(18/41,":[130,157],"44%)":[131,158],"most":[134,168],"commonly":[135,169,185],"severity,":[140],"followed":[141],"by":[142],"Sartorius":[144,147],"Modified":[146],"scales":[148,163],"(combined:":[149],"16/41,":[150],"39%).":[151],"Dermatology":[153],"Life":[154],"Quality":[155],"Index":[156],"visual":[160],"analogue":[161],"pain":[162],"(12/41,":[164],"29%)":[165],"research.":[176],"CONCLUSIONS:":[177],"Randomized":[178],"2013":[183],"onward":[184],"validated":[188,203,212],"HiSCR":[189],"score,":[190],"while":[191],"older":[192],"more":[195],"heterogeneous":[196],"less":[198],"likely":[199],"scale.":[204],"few":[206],"(6/18,":[207],"33%)":[208],"measures":[210],"but":[214],"not":[216,223],"specific":[217],"HS;":[219],"therefore,":[220],"they":[221],"may":[222],"be":[224],"representative":[225],"factors":[228],"impact":[230],"TRIAL":[234],"REGISTRATION:":[235],"National":[236],"Institute":[237],"Health":[239],"Research":[240],"PROSPERO":[241],"CRD42020209582;":[242],"https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020209582.":[243]},"counts_by_year":[{"year":2026,"cited_by_count":1},{"year":2025,"cited_by_count":2},{"year":2024,"cited_by_count":4},{"year":2023,"cited_by_count":2}],"updated_date":"2026-10-29T09:56:32.521200","created_date":"2021-09-13T00:00:00"}