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Physical impact and health-related quality of life of SCD in adults: the real-world Portuguese ASCEND Study

2026-05-01Artigo de investigação Acesso aberto
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dc.contributor.authorSaunders, Christopher J.
dc.contributor.authorMartins, Madalena
dc.contributor.authorMajor, Marinela
dc.contributor.authorFavas, Catarina
dc.contributor.authorTomé, Ana
dc.contributor.authorVargas, Fernanda
dc.contributor.authorMartins, Joana Rosa
dc.contributor.authorCosta, Ryan Silva
dc.contributor.authorDeveza, Maria Manuel
dc.contributor.authorPires, Filipa
dc.contributor.authorMaia, Tabita Magalhães
dc.contributor.authorSantos, João Gaião
dc.contributor.authorBento, Celeste
dc.contributor.authorFonseca, Inês
dc.contributor.authorMoital, Inês
dc.contributor.authorBrás, Daniel
dc.date.accessioned2026-06-19T17:51:11Z
dc.date.available2026-06-19T17:51:11Z
dc.date.issued2026-05-01
dc.description.abstractObjectives: SCD negatively impacts patient’s health-related quality of life (HRQoL). The ASCEND study investigated how SCD impacts the HRQoL of adults in Portugal, focusing on its physical, emotional, and social burdens. Methods: This non-interventional, cross-sectional study included two cohorts of adult SCD patients from seven Portuguese Reference Centers (Cohort 1) and the Portuguese Patient Association (Cohort 2). Sociodemographic and patient-reported outcomes were collected for both cohorts, along with clinical data for Cohort 1, between February and September/2022. Results: 211 adult SCD patients (Cohort 1: 200; Cohort 2: 11) were included (median age of 33.0 years, 58.8% male). Nearly 90% reported complications. Patients were diagnosed at a median age of 2.0 years, mainly with the HbSS variant (89.0%), and 86.0% were under treatment (73.5% on hydroxyurea, 45.0% on chronic transfusion). All had lifetime pain episodes, with 72.6% experiencing at least one in the previous year. Most (91.9%) adopted daily strategies to prevent pain episodes, 67.1% had pain management plans, and 46.7% self-managed crises at home. Pain/discomfort (60.6%) and anxiety/depression (51.0%) were major problems (median EQ-5D-5L score = 0.91), affecting emotional well-being (53.8%) and/or social life (49.0%). Indeed, less frequent pain significantly correlated with improved HRQoL (P = .001). While 40.0% felt neglected, 70.5% rarely or never experienced solitude, and 84.6% reported a sense of support. Conclusion: The ASCEND study reveals the multifaceted impact of SCD on adults in Portugal and its influence on HRQoL, emphasizing the need for a multidisciplinary care approach and effective self-management education to improve patient outcomes.eng
dc.identifier.doi10.1093/jscdis/yoag025
dc.identifier.eid105041150201
dc.identifier.other0d20c505-d13b-46ae-96cb-854a2e87e700
dc.identifier.urihttp://hdl.handle.net/10400.14/58186
dc.language.isoeng
dc.peerreviewedyes
dc.publisherOxford University Press
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/
dc.subjectHealth-related quality of lifeeng
dc.subjectMultidisciplinary careeng
dc.subjectPain episodeseng
dc.subjectSCDeng
dc.subjectSelf-managementeng
dc.titlePhysical impact and health-related quality of life of SCD in adults: the real-world Portuguese ASCEND Study
dc.typeresearch article
dspace.entity.typePublication
oaire.citation.issue1
oaire.citation.volume3
oaire.versionhttp://purl.org/coar/version/c_970fb48d4fbd8a85

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