A patient-driven registry on Behcet's disease: the AIDA for patients pilot project

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dc.authoridGentileschi, Stefano/0000-0001-6658-1037
dc.authoridOpris-Belinski, Daniela/0000-0003-3883-9672
dc.authoridbrucato, antonio/0000-0002-7566-5600
dc.authoridEmmi, Giacomo/0000-0001-9575-8321
dc.authoridAlmaghlouth, Ibrahim/0000-0002-8176-287X
dc.authoridBalistreri, Alberto/0000-0002-7349-9725
dc.authoridLaskari, Katerina/0000-0002-6477-6583
dc.contributor.authorGaggiano, Carla
dc.contributor.authorDel Bianco, Alessandra
dc.contributor.authorSota, Jurgen
dc.contributor.authorGentileschi, Stefano
dc.contributor.authorRuscitti, Piero
dc.contributor.authorGiacomelli, Roberto
dc.contributor.authorPiga, Matteo
dc.date.accessioned2024-10-26T18:11:51Z
dc.date.available2024-10-26T18:11:51Z
dc.date.issued2023
dc.departmentSivas Cumhuriyet Üniversitesi
dc.description.abstractIntroductionThis paper describes the creation and preliminary results of a patient-driven registry for the collection of patient-reported outcomes (PROs) and patient-reported experiences (PREs) in Behcet's disease (BD). MethodsThe project was coordinated by the University of Siena and the Italian patient advocacy organization SIMBA (Associazione Italiana Sindrome e Malattia di Behcet), in the context of the AIDA (AutoInflammatory Diseases Alliance) Network programme. Quality of life, fatigue, socioeconomic impact of the disease and therapeutic adherence were selected as core domains to include in the registry. ResultsRespondents were reached via SIMBA communication channels in 167 cases (83.5%) and the AIDA Network affiliated clinical centers in 33 cases (16.5%). The median value of the Behcet's Disease Quality of Life (BDQoL) score was 14 (IQR 11, range 0-30), indicating a medium quality of life, and the median Global Fatigue Index (GFI) was 38.7 (IQR 10.9, range 1-50), expressing a significant level of fatigue. The mean Beliefs about Medicines Questionnaire (BMQ) necessity-concern differential was 0.9 & PLUSMN; 1.1 (range - 1.8-4), showing that the registry participants prioritized necessity belief over concerns to a limited extent. As for the socioeconomic impact of BD, in 104 out of 187 cases (55.6%), patients had to pay from their own pocket for medical exams required to reach the diagnosis. The low family socioeconomic status (p < 0.001), the presence of any major organ involvement (p < 0.031), the presence of gastro-intestinal (p < 0.001), neurological (p = 0.012) and musculoskeletal (p = 0.022) symptoms, recurrent fever (p = 0.002), and headache (p < 0.001) were associated to a higher number of accesses to the healthcare system. Multiple linear regression showed that the BDQoL score could significantly predict the global socioeconomic impact of BD (F = 14.519, OR 1.162 [CI 0.557-1.766], p < 0.001). DiscussionPreliminary results from the AIDA for Patients BD registry were consistent with data available in the literature, confirming that PROs and PREs could be easily provided by the patient remotely to integrate physician-driven registries with complementary and reliable information.
dc.identifier.doi10.3389/fmed.2023.1188021
dc.identifier.issn2296-858X
dc.identifier.pmid37396916
dc.identifier.scopus2-s2.0-85164497118
dc.identifier.scopusqualityQ1
dc.identifier.urihttps://doi.org/10.3389/fmed.2023.1188021
dc.identifier.urihttps://hdl.handle.net/20.500.12418/30856
dc.identifier.volume10
dc.identifier.wosWOS:001016757600001
dc.identifier.wosqualityQ1
dc.indekslendigikaynakWeb of Science
dc.indekslendigikaynakScopus
dc.indekslendigikaynakPubMed
dc.language.isoen
dc.publisherFrontiers Media Sa
dc.relation.ispartofFrontiers in Medicine
dc.relation.publicationcategoryMakale - Uluslararası Hakemli Dergi - Kurum Öğretim Elemanı
dc.rightsinfo:eu-repo/semantics/openAccess
dc.subjectBehcet's disease
dc.subjectpatient-driven registries
dc.subjectrare diseases
dc.subjectautoinflammatory diseases
dc.subjectpatient involvement
dc.subjectpatient-reported outcomes
dc.titleA patient-driven registry on Behcet's disease: the AIDA for patients pilot project
dc.typeArticle

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