{"id":"https://openalex.org/W7223127147","doi":"https://doi.org/10.1016/j.htct.2026.108341","title":"QUALIDADE DE VIDA E REPERCUSS\u00d5ES PSICOL\u00d3GICAS AP\u00d3S TRATAMENTO COM IPTACOPAN EM PACIENTE COM HEMOGLOBIN\u00daRIA PAROX\u00cdSTICA NOTURNA: RELATO DE CASO","display_name":"QUALIDADE DE VIDA E REPERCUSS\u00d5ES PSICOL\u00d3GICAS AP\u00d3S TRATAMENTO COM IPTACOPAN EM PACIENTE COM HEMOGLOBIN\u00daRIA PAROX\u00cdSTICA NOTURNA: RELATO DE CASO","publication_year":2026,"publication_date":"2026-10-01","ids":{"openalex":"https://openalex.org/W7223127147","doi":"https://doi.org/10.1016/j.htct.2026.108341"},"language":"en","primary_location":{"id":"doi:10.1016/j.htct.2026.108341","doi":"https://doi.org/10.1016/j.htct.2026.108341","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.htct.2026.108341","pdf_url":"https://www.sciencedirect.com/science/article/pii/S2531137926020882/pdf","source":{"id":"https://openalex.org/S2898598332","display_name":"Hematology Transfusion and Cell Therapy","issn_l":"2531-1379","issn":["2531-1379","2531-1387"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","dongbi-c","ki-jl-1","poland-20","russia-white-list-3","scielo"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Hematology, Transfusion and Cell Therapy","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","doaj"],"open_access":{"is_oa":true,"oa_status":"diamond","oa_url":"https://www.sciencedirect.com/science/article/pii/S2531137926020882/pdf","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5159209568","display_name":"Marcelle MAGALH\u00c3ES COUTINHO","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210088663","display_name":"Hemorio","ror":"https://ror.org/003mvv560","country_code":"BR","type":"healthcare","lineage":["https://openalex.org/I4210088663","https://openalex.org/I4210136275","https://openalex.org/I4210142084","https://openalex.org/I4405262729"]}],"countries":["BR"],"is_corresponding":true,"raw_author_name":"Marcelle MAGALH\u00c3ES COUTINHO","raw_affiliation_strings":["Instituto Estadual de Hematologia Arthur de Siqueira Cavalcanti (HEMORIO), Rio de Janeiro, RJ, Brasil"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Instituto Estadual de Hematologia Arthur de Siqueira Cavalcanti (HEMORIO), Rio de Janeiro, RJ, Brasil","institution_ids":["https://openalex.org/I4210088663"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":["https://openalex.org/A5159209568"],"corresponding_institution_ids":["https://openalex.org/I4210088663"],"apc_list":{"value":0,"currency":"USD","value_usd":0},"apc_paid":null,"fwci":0.0,"has_fulltext":true,"cited_by_count":0,"citation_normalized_percentile":{"value":0.75415926,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"48","issue":null,"first_page":"108341","last_page":"108341"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10993","display_name":"Complement system in diseases","score":0.9829000234603882,"subfield":{"id":"https://openalex.org/subfields/2403","display_name":"Immunology"},"field":{"id":"https://openalex.org/fields/24","display_name":"Immunology and Microbiology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},"topics":[{"id":"https://openalex.org/T10993","display_name":"Complement system in diseases","score":0.9829000234603882,"subfield":{"id":"https://openalex.org/subfields/2403","display_name":"Immunology"},"field":{"id":"https://openalex.org/fields/24","display_name":"Immunology and Microbiology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":0.007400000002235174,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"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/T11280","display_name":"Hemophilia Treatment and Research","score":0.002099999925121665,"subfield":{"id":"https://openalex.org/subfields/2720","display_name":"Hematology"},"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/quality-of-life","display_name":"quality of life","score":0.7580000162124634},{"id":"https://openalex.org/keywords/psychological-outcomes","display_name":"psychological outcomes","score":0.6759999990463257},{"id":"https://openalex.org/keywords/iptacopan","display_name":"iptacopan","score":0.621999979019165},{"id":"https://openalex.org/keywords/paroxysmal-nocturnal-hemoglobinuria","display_name":"paroxysmal nocturnal hemoglobinuria","score":0.8209999799728394},{"id":"https://openalex.org/keywords/complement-inhibition","display_name":"complement inhibition","score":0.35600000619888306},{"id":"https://openalex.org/keywords/eculizumab","display_name":"eculizumab","score":0.6660000085830688},{"id":"https://openalex.org/keywords/patient-reported-outcomes","display_name":"patient-reported outcomes","score":0.3930000066757202}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.9671000242233276},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.4108000099658966},{"id":"https://openalex.org/C29456083","wikidata":"https://www.wikidata.org/wiki/Q1221899","display_name":"Gynecology","level":1,"score":0.3303000032901764},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.2784999907016754},{"id":"https://openalex.org/C2779530757","wikidata":"https://www.wikidata.org/wiki/Q1207505","display_name":"Quality (philosophy)","level":2,"score":0.225600004196167},{"id":"https://openalex.org/C15708023","wikidata":"https://www.wikidata.org/wiki/Q80083","display_name":"Humanities","level":1,"score":0.20389999449253082},{"id":"https://openalex.org/C2985445135","wikidata":"https://www.wikidata.org/wiki/Q13100823","display_name":"Life quality","level":2,"score":0.1949000060558319},{"id":"https://openalex.org/C2908902254","wikidata":"https://www.wikidata.org/wiki/Q407954","display_name":"Compassionate Use","level":3,"score":0.16590000689029694},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.16459999978542328},{"id":"https://openalex.org/C2989236134","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Patient care","level":2,"score":0.16459999978542328}],"mesh":[],"locations_count":2,"locations":[{"id":"doi:10.1016/j.htct.2026.108341","doi":"https://doi.org/10.1016/j.htct.2026.108341","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.htct.2026.108341","pdf_url":"https://www.sciencedirect.com/science/article/pii/S2531137926020882/pdf","source":{"id":"https://openalex.org/S2898598332","display_name":"Hematology Transfusion and Cell Therapy","issn_l":"2531-1379","issn":["2531-1379","2531-1387"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","dongbi-c","ki-jl-1","poland-20","russia-white-list-3","scielo"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Hematology, Transfusion and Cell Therapy","raw_type":"journal-article"},{"id":"pmh:oai:doaj.org/article:ec1d7e6f6b1f40f9b403e56ed05fbb21","doi":null,"is_oa":false,"landing_page_url":"https://doaj.org/article/ec1d7e6f6b1f40f9b403e56ed05fbb21","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":"Hematology, Transfusion and Cell Therapy, Vol 48, Iss , Pp 108341- (2026)","raw_type":"article"}],"best_oa_location":{"id":"doi:10.1016/j.htct.2026.108341","doi":"https://doi.org/10.1016/j.htct.2026.108341","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.htct.2026.108341","pdf_url":"https://www.sciencedirect.com/science/article/pii/S2531137926020882/pdf","source":{"id":"https://openalex.org/S2898598332","display_name":"Hematology Transfusion and Cell Therapy","issn_l":"2531-1379","issn":["2531-1379","2531-1387"],"is_oa":true,"is_in_doaj":true,"is_core":true,"listed_in":["cwts-core","doaj","dongbi-c","ki-jl-1","poland-20","russia-white-list-3","scielo"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Hematology, Transfusion and Cell Therapy","raw_type":"journal-article"},"sustainable_development_goals":[{"display_name":"Good health and well-being","score":1.0,"id":"https://metadata.un.org/sdg/3"}],"study_designs":[{"display_name":"Case Report","id":"https://openalex.org/study-designs/case-report"}],"awards":[],"funders":[],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W7223127147.pdf","grobid_xml":"https://content.openalex.org/works/W7223127147.grobid-xml"},"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W7223158136","https://openalex.org/W4406140187","https://openalex.org/W7116894364","https://openalex.org/W7223136229","https://openalex.org/W4417011379","https://openalex.org/W4415670458","https://openalex.org/W4389230407","https://openalex.org/W4415670746","https://openalex.org/W6958227683","https://openalex.org/W4405046196"],"abstract_inverted_index":{"A":[0,24,85,279,300,315],"hemoglobin\u00faria":[1],"parox\u00edstica":[2],"noturna":[3],"(HPN)":[4],"\u00e9":[5,26,37],"uma":[6],"doen\u00e7a":[7,274],"hematol\u00f3gica":[8],"rara,":[9],"adquirida,":[10],"caracterizada":[11],"por":[12,67],"hem\u00f3lise":[13,54,64],"cr\u00f4nica,":[14],"fen\u00f4menos":[15],"tromb\u00f3ticos":[16],"e":[17,32,62,77,83,116,121,137,149,179,199,227,231,255,275,294,347,351],"importante":[18],"impacto":[19,263],"na":[20,193,214,248,277],"qualidade":[21,202,235,344],"de":[22,87,101,112,123,125,146,177,181,203,224,229,236,267,269,311,345,361],"vida.":[23],"fadiga":[25,187,197,292,304,341],"um":[27,38],"dos":[28,252],"sintomas":[29],"mais":[30],"incapacitantes":[31],"frequentemente":[33],"subestimado.":[34],"O":[35,330],"iptacopan":[36,136,337],"inibidor":[39],"proximal":[40],"do":[41,60,94,105,144,219,336],"complemento":[42,61],"que":[43],"atua":[44],"sobre":[45,261,326],"o":[46,262,284,327],"Fator":[47],"B":[48],"da":[49,159,186,259,264,273,281,287,291,303,323,340,343,356],"via":[50],"alternativa,":[51],"controlando":[52],"a":[53,63,92,98,128,309,334,354],"intravascular":[55],"mediada":[56,66],"pelo":[57,174,305],"complexo":[58],"terminal":[59],"extravascular":[65],"C3.":[68],"Entre":[69],"os":[70,321],"principais":[71],"eventos":[72],"adversos":[73],"descritos":[74],"est\u00e3o":[75],"infec\u00e7\u00f5es":[76],"dist\u00farbios":[78],"hematol\u00f3gicos,":[79],"gastrointestinais,":[80],"musculoesquel\u00e9ticos,":[81],"neurol\u00f3gicos":[82],"cut\u00e2neos.":[84],"introdu\u00e7\u00e3o":[86,335],"novas":[88],"terapias":[89],"pode":[90],"modificar":[91],"experi\u00eancia":[93],"adoecimento,":[95,220],"tornando":[96],"relevante":[97],"avalia\u00e7\u00e3o":[99,140,163,209,243,316,357],"psicol\u00f3gica":[100,317,358],"seus":[102],"impactos.":[103],"Paciente":[104],"sexo":[106],"feminino,":[107],"46":[108],"anos,":[109],"separada,":[110],"m\u00e3e":[111],"dois":[113],"filhos":[114],"(23":[115],"3":[117],"anos),":[118],"com":[119,135,157,184,196,250,363],"HPN":[120,364],"antecedente":[122],"S\u00edndrome":[124],"Budd-Chiari":[126],"submetida":[127],"transplante":[129],"hep\u00e1tico,":[130],"foi":[131],"inclu\u00edda":[132],"em":[133,313,365],"estudo":[134],"encaminhada":[138],"para":[139],"psicol\u00f3gica.":[141],"Ap\u00f3s":[142],"assinatura":[143],"Termo":[145],"Consentimento":[147],"Livre":[148],"Esclarecido,":[150],"foram":[151],"realizadas":[152],"tr\u00eas":[153],"entrevistas":[154],"psicol\u00f3gicas":[155],"semiestruturadas":[156],"aplica\u00e7\u00e3o":[158],"escala":[160],"FACIT-F.":[161],"Na":[162,207,241],"inicial":[164,302],"(23/07/2025),":[165],"relatou":[166],"longa":[167],"investiga\u00e7\u00e3o":[168],"diagn\u00f3stica,":[169],"sofrimento":[170],"emocional,":[171],"preju\u00edzo":[172],"social":[173],"\u201ccuidado":[175],"excessivo\u201d":[176],"terceiros":[178],"aus\u00eancia":[180],"suporte":[182],"familiar,":[183],"desqualifica\u00e7\u00e3o":[185],"como":[188,205,238],"sintoma.":[189],"Obteve":[190],"30":[191],"pontos":[192,213,247],"FACIT-F,":[194,215,249],"compat\u00edveis":[195],"moderada,":[198],"classificou":[200],"sua":[201,234],"vida":[204,237,346],"mediana.":[206],"segunda":[208],"(20/10/2025),":[210],"apresentou":[211],"51":[212,246],"associados":[216],"\u00e0":[217],"ressignifica\u00e7\u00e3o":[218],"maior":[221,257,271],"autocuidado,":[222],"planejamento":[223],"longo":[225],"prazo":[226],"sentimentos":[228],"felicidade":[230],"orgulho,":[232],"classificando":[233],"\u201cmuito":[239],"satisfeita\u201d.":[240],"terceira":[242],"(30/03/2026),":[244],"manteve":[245],"fortalecimento":[251],"v\u00ednculos":[253],"familiares":[254,350],"sociais,":[256,352],"compreens\u00e3o":[258],"fam\u00edlia":[260],"fadiga,":[265],"retomada":[266],"atividades":[268],"lazer,":[270],"aceita\u00e7\u00e3o":[272],"confian\u00e7a":[276],"terap\u00eautica.":[278,367],"melhora":[280,339],"FACIT-F":[282],"acompanhou":[283],"relato":[285],"subjetivo":[286],"paciente,":[288],"evidenciando":[289],"redu\u00e7\u00e3o":[290],"percebida":[293],"repercuss\u00f5es":[295],"positivas":[296],"no":[297,359],"funcionamento":[298],"psicossocial.":[299],"incompreens\u00e3o":[301],"c\u00edrculo":[306],"familiar":[307],"refor\u00e7a":[308],"necessidade":[310],"educa\u00e7\u00e3o":[312],"sa\u00fade.":[314],"seriada":[318],"permitiu":[319],"acompanhar":[320],"efeitos":[322],"mudan\u00e7a":[324],"terap\u00eautica":[325],"bem-estar":[328],"global.":[329],"acompanhamento":[331],"psicol\u00f3gico":[332],"durante":[333],"evidenciou":[338],"percebida,":[342],"das":[348],"rela\u00e7\u00f5es":[349],"refor\u00e7ando":[353],"import\u00e2ncia":[355],"manejo":[360],"pacientes":[362],"transi\u00e7\u00e3o":[366],"N\u00e3o":[368],"houve.":[369]},"counts_by_year":[],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2026-10-22T00:00:00"}
