{"id":"https://openalex.org/W7204229343","doi":"https://doi.org/10.1093/bjd/ljag266","title":"Patient and care partner burden in cutaneous T-cell lymphoma using disease-specific measures of symptoms and health-related quality of life","display_name":"Patient and care partner burden in cutaneous T-cell lymphoma using disease-specific measures of symptoms and health-related quality of life","publication_year":2026,"publication_date":"2026-08-22","ids":{"openalex":"https://openalex.org/W7204229343","doi":"https://doi.org/10.1093/bjd/ljag266","pmid":"https://pubmed.ncbi.nlm.nih.gov/42644852"},"language":"en","primary_location":{"id":"doi:10.1093/bjd/ljag266","doi":"https://doi.org/10.1093/bjd/ljag266","is_oa":true,"landing_page_url":"https://doi.org/10.1093/bjd/ljag266","pdf_url":null,"source":{"id":"https://openalex.org/S45720283","display_name":"British Journal of Dermatology","issn_l":"0007-0963","issn":["0007-0963","1365-2133"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-3","ki-jl-3","medline","norway-2","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"British Journal of Dermatology","raw_type":"journal-article"},"parent_works":[],"lineage":["https://openalex.org/W7204229343"],"child_works_count":0,"type":"article","is_traditional":true,"indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://doi.org/10.1093/bjd/ljag266","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5072248667","display_name":"Julia Jane Scarisbrick","orcid":"https://orcid.org/0000-0002-8011-4408","observed_orcids":["https://orcid.org/0000-0002-8011-4408"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Julia J Scarisbrick","raw_affiliation_strings":["University Hospital Birmingham , Birmingham ,"],"raw_orcid":"https://orcid.org/0000-0002-8011-4408","affiliations":[{"raw_affiliation_string":"University Hospital Birmingham , Birmingham ,","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5001315602","display_name":"Larisa J. Geskin","orcid":"https://orcid.org/0000-0002-0981-3513","observed_orcids":["https://orcid.org/0000-0002-0981-3513"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Larisa Geskin","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5031190166","display_name":"Sima Rozati","orcid":"https://orcid.org/0000-0001-6318-6429","observed_orcids":["https://orcid.org/0000-0001-6318-6429"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Sima Rozati","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5081205774","display_name":"Erika Morsia","orcid":"https://orcid.org/0000-0003-4453-6985","observed_orcids":["https://orcid.org/0000-0003-4453-6985"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Erika Morsia","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5016579216","display_name":"Koen D. Quint","orcid":"https://orcid.org/0000-0002-3267-5630","observed_orcids":["https://orcid.org/0000-0002-3267-5630"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Koen D Quint","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5135567555","display_name":"Amy Musiek","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Amy Musiek","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5045136412","display_name":"Arvind K. Arumainathan","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Arvind Arumainathan","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5136949861","display_name":"Jennifer DeSimone","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Jennifer DeSimone","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5091827101","display_name":"Richard Andrew Cowan","orcid":"https://orcid.org/0000-0001-9004-8136","observed_orcids":["https://orcid.org/0000-0001-9004-8136"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Richard Cowan","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5148288103","display_name":"Antonio Giordano","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Antonio Giordano","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5019618086","display_name":"Michi M. Shinohara","orcid":"https://orcid.org/0000-0003-1388-5330","observed_orcids":["https://orcid.org/0000-0003-1388-5330"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Michi M Shinohara","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5081538785","display_name":"Cristina Muniesa","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Cristina Muniesa","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5065389792","display_name":"Ramon Maria Pujol","orcid":"https://orcid.org/0000-0002-5622-6055","observed_orcids":["https://orcid.org/0000-0002-5622-6055"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Ramon M Pujol","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5112449676","display_name":"Maria Cecilia Goldaniga","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Maria C Goldaniga","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5087437235","display_name":"Silvia Alberti Violetti","orcid":"https://orcid.org/0000-0001-7163-1035","observed_orcids":["https://orcid.org/0000-0001-7163-1035"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Silvia Alberti-Violetti","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5078320719","display_name":"Kayane Mheidly","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Kayane Mheidly","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5020164754","display_name":"Alessandro Pileri","orcid":"https://orcid.org/0000-0002-1025-7171","observed_orcids":["https://orcid.org/0000-0002-1025-7171"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Alessandro Pileri","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5143992875","display_name":"Claire Esler","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Claire Esler","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5015128036","display_name":"Luca Nassi","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Luca Nassi","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5125262839","display_name":"Susan Thornton","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Susan Thornton","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5048526846","display_name":"Kerry Sandilands","orcid":"https://orcid.org/0009-0001-6966-2251","observed_orcids":["https://orcid.org/0009-0001-6966-2251"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Kerry Sandilands","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5148375643","display_name":"Angela Williams","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Angela Williams","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5148304202","display_name":"Annabel Bowden","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Annabel Bowden","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0000-0003-3454-9491","affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5013792864","display_name":"Jennifer E. Dent","orcid":"https://orcid.org/0000-0003-2448-1788","observed_orcids":["https://orcid.org/0000-0003-2448-1788"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Jennifer E Dent","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"last","author":{"id":"https://openalex.org/A5025264628","display_name":"Miriam Teoli","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Miriam Teoli","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":3731,"currency":"GBP","value_usd":4920},"apc_paid":{"value":3731,"currency":"GBP","value_usd":4920},"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.0,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"195","issue":"5","first_page":"854","last_page":"856"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11811","display_name":"Cutaneous lymphoproliferative disorders research","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/T11811","display_name":"Cutaneous lymphoproliferative disorders research","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/T10837","display_name":"Dermatology and Skin Diseases","score":0.0,"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/T11306","display_name":"Nonmelanoma Skin Cancer Studies","score":0.0,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/mycosis-fungoides","display_name":"mycosis fungoides","score":0.9049999713897705},{"id":"https://openalex.org/keywords/sezary-syndrome","display_name":"S\u00e9zary syndrome","score":1.0},{"id":"https://openalex.org/keywords/cutaneous-t-cell-lymphoma","display_name":"cutaneous T-cell lymphoma","score":1.0},{"id":"https://openalex.org/keywords/symptom-burden","display_name":"symptom burden","score":0.8579999804496765},{"id":"https://openalex.org/keywords/health-related-quality-of-life","display_name":"health-related quality of life","score":0.9610000252723694},{"id":"https://openalex.org/keywords/care-partners","display_name":"care partners","score":0.6460000276565552},{"id":"https://openalex.org/keywords/fatigue","display_name":"fatigue","score":0.75},{"id":"https://openalex.org/keywords/pruritus","display_name":"pruritus","score":0.8109999895095825},{"id":"https://openalex.org/keywords/sleep-disturbance","display_name":"sleep disorders","score":0.9950000047683716},{"id":"https://openalex.org/keywords/depression","display_name":"depression","score":0.9020000100135803},{"id":"https://openalex.org/keywords/symptom-diary","display_name":"symptom diary","score":0.6819999814033508},{"id":"https://openalex.org/keywords/patient-reported-outcomes","display_name":"patient-reported outcomes","score":0.656000018119812}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.8762000203132629},{"id":"https://openalex.org/C2779530757","wikidata":"https://www.wikidata.org/wiki/Q1207505","display_name":"Quality (philosophy)","level":2,"score":0.5756999850273132},{"id":"https://openalex.org/C2779338263","wikidata":"https://www.wikidata.org/wiki/Q208414","display_name":"Lymphoma","level":2,"score":0.4880000054836273},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.42149999737739563},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.4194999933242798},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.35929998755455017},{"id":"https://openalex.org/C2989236134","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Patient care","level":2,"score":0.35740000009536743},{"id":"https://openalex.org/C16005928","wikidata":"https://www.wikidata.org/wiki/Q171171","display_name":"Dermatology","level":1,"score":0.335999995470047},{"id":"https://openalex.org/C2776780870","wikidata":"https://www.wikidata.org/wiki/Q5196687","display_name":"Cutaneous T-cell lymphoma","level":4,"score":0.31779998540878296},{"id":"https://openalex.org/C2777756187","wikidata":"https://www.wikidata.org/wiki/Q1891209","display_name":"Mycosis fungoides","level":3,"score":0.30379998683929443},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.27950000762939453},{"id":"https://openalex.org/C2779517570","wikidata":"https://www.wikidata.org/wiki/Q7144954","display_name":"Patient-reported outcome","level":3,"score":0.26100000739097595},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.2565999925136566},{"id":"https://openalex.org/C2777789703","wikidata":"https://www.wikidata.org/wiki/Q192102","display_name":"Skin cancer","level":3,"score":0.2556999921798706},{"id":"https://openalex.org/C2984752397","wikidata":"https://www.wikidata.org/wiki/Q3259956","display_name":"Primary care","level":2,"score":0.25220000743865967}],"mesh":[],"locations_count":2,"locations":[{"id":"doi:10.1093/bjd/ljag266","doi":"https://doi.org/10.1093/bjd/ljag266","is_oa":true,"landing_page_url":"https://doi.org/10.1093/bjd/ljag266","pdf_url":null,"source":{"id":"https://openalex.org/S45720283","display_name":"British Journal of Dermatology","issn_l":"0007-0963","issn":["0007-0963","1365-2133"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-3","ki-jl-3","medline","norway-2","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"British Journal of Dermatology","raw_type":"journal-article"},{"id":"pmid:42644852","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/42644852","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":"The British journal of dermatology","raw_type":"Journal Article"}],"best_oa_location":{"id":"doi:10.1093/bjd/ljag266","doi":"https://doi.org/10.1093/bjd/ljag266","is_oa":true,"landing_page_url":"https://doi.org/10.1093/bjd/ljag266","pdf_url":null,"source":{"id":"https://openalex.org/S45720283","display_name":"British Journal of Dermatology","issn_l":"0007-0963","issn":["0007-0963","1365-2133"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-3","ki-jl-3","medline","norway-2","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"British Journal of Dermatology","raw_type":"journal-article"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":1.0}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[],"funders":[{"id":"https://openalex.org/F4320322359","display_name":"Kyowa Hakko Kirin","ror":"https://ror.org/0586k5242"}],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":7,"referenced_works":["https://openalex.org/W2901283481","https://openalex.org/W2908753168","https://openalex.org/W2943404462","https://openalex.org/W2996473598","https://openalex.org/W3087419444","https://openalex.org/W3205753180","https://openalex.org/W3207971263"],"related_works":["https://openalex.org/W3206048582","https://openalex.org/W4402764837","https://openalex.org/W7168342025","https://openalex.org/W7135100554","https://openalex.org/W3187632711","https://openalex.org/W3008519251","https://openalex.org/W7166013004","https://openalex.org/W4389259068","https://openalex.org/W3205985101","https://openalex.org/W4408040995"],"abstract_inverted_index":{"Patients":[0,59],"with":[1,71],"mycosis":[2],"fungoides":[3],"(MF)":[4],"or":[5],"S\u00e9zary":[6],"syndrome":[7],"(SS)":[8],"may":[9,102],"experience":[10],"visible":[11],"lesions,":[12],"severe":[13],"itch,":[14],"sleep":[15,106],"disturbance,":[16],"body":[17],"temperature":[18],"dysregulation":[19],"and":[20,32,37,69,94,107,110],"depression.":[21],"In":[22],"this":[23],"international":[24],"study,":[25],"73":[26],"patients":[27],"completed":[28,55],"a":[29,61,72],"symptom":[30,63],"diary":[31],"questionnaires":[33],"relating":[34],"to":[35,82],"fatigue":[36],"health-related":[38],"quality":[39],"of":[40,86,91],"life":[41],"[HRQoL:":[42],"the":[43,79],"MF/SS-cutaneous":[44],"T-cell":[45],"lymphoma":[46],"QoL":[47],"measure":[48],"(MF/SS-CTCL":[49],"QoL)];":[50],"24":[51],"care":[52,95,111],"partners":[53],"also":[54],"an":[56],"HRQoL":[57,109],"questionnaire.":[58],"reported":[60],"high":[62],"burden":[64],"that":[65],"differed":[66],"between":[67],"MF":[68],"SS,":[70],"moderate":[73],"impact":[74],"on":[75],"HRQoL.":[76,97,113],"This":[77],"is":[78],"first":[80],"study":[81],"identify":[83],"which":[84],"symptoms":[85,101],"MF/SS":[87],"compromise":[88],"different":[89],"aspects":[90],"both":[92],"patients\u2019":[93,104],"partners\u2019":[96,112],"Addressing":[98],"specific":[99],"skin":[100],"improve":[103],"fatigue,":[105],"overall":[108]},"counts_by_year":[],"updated_date":"2026-10-20T09:52:01.089006","created_date":"2026-08-27T00:00:00"}
