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A patient-driven registry on Behçet's disease: the AIDA for patients pilot project.
Gaggiano, Carla; Del Bianco, Alessandra; Sota, Jurgen; Gentileschi, Stefano; Ruscitti, Piero; Giacomelli, Roberto; Piga, Matteo; Crisafulli, Francesca; Monti, Sara; Emmi, Giacomo; De Paulis, Amato; Vitale, Antonio; Tarsia, Maria; Caggiano, Valeria; Nuzzolese, Rossana; Parretti, Veronica; Fabiani, Claudia; Lopalco, Giuseppe; Maier, Armin; Cattalini, Marco; Rigante, Donato; Govoni, Marcello; Li Gobbi, Francesca; Guiducci, Serena; Parronchi, Paola; Marino, Achille; Ciccia, Francesco; Maggio, Maria Cristina; Aragona, Emma; Bartoloni, Elena; Iagnocco, Annamaria; Viapiana, Ombretta; Sebastiani, Gian Domenico; Guerriero, Silvana; Insalaco, Antonella; Del Giudice, Emanuela; Conti, Giovanni; Barone, Patrizia; Olivieri, Alma Nunzia; Brucato, Antonio; Carubbi, Francesco; Triggianese, Paola; Mauro, Angela; Tosi, Gian Marco; Fonollosa, Alex; Giardini, Henrique Ayres Mayrink; Ragab, Gaafar; Tharwat, Samar; Hernández-Rodríguez, José; Sfikakis, Petros P.
Afiliación
  • Gaggiano C; Rheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy.
  • Del Bianco A; S.I.M.B.A (Associazione Italiana Sindrome e Malattia di Behçet), Pontedera, Italy.
  • Sota J; Rheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy.
  • Gentileschi S; Rheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy.
  • Ruscitti P; Rheumatology Unit, Department of Biotechnological & Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy.
  • Giacomelli R; Rheumatology and Immunology Unit, Department of Medicine, University of Rome "Campus Biomedico", Rome, Italy.
  • Piga M; Rheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy.
  • Crisafulli F; Rheumatology and Clinical Immunology, Department of Clinical and Experimental Sciences, University of Brescia and Spedali Civili [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Brescia, Italy.
  • Monti S; Division of Rheumatology, Fondazione IRCCS Policlinico San Matteo [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], Pavia, Italy.
  • Emmi G; Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
  • De Paulis A; Centre for Inflammatory Diseases, Department of Medicine, Monash Medical Centre, Monash University, Clayton, VIC, Australia.
  • Vitale A; Department of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II, Naples, Italy.
  • Tarsia M; Center for Basic and Clinical Immunology Research (CISI), WAO Center of Excellence, University of Naples Federico II, Naples, Italy.
  • Caggiano V; Rheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy.
  • Nuzzolese R; Clinical Paediatrics, Department of Molecular Medicine and Development, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy.
  • Parretti V; Rheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy.
  • Fabiani C; Rheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy.
  • Lopalco G; Rheumatology Unit, Department of Medical Sciences, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy.
  • Maier A; Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy.
  • Cattalini M; Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy.
  • Rigante D; Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy.
  • Govoni M; Pediatric Clinic, University of Brescia and Spedali Civili di Brescia [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Brescia, Italy.
  • Li Gobbi F; Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
  • Guiducci S; Rare Diseases and Periodic Fevers Research Centre, Università Cattolica del Sacro Cuore, Rome, Italy.
  • Parronchi P; Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy.
  • Marino A; Rheumatology Unit, Hospital S. Giovanni di Dio, Azienda USL-Toscana Centro, Florence, Italy.
  • Ciccia F; Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
  • Maggio MC; Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy.
  • Aragona E; Immunology and Cellular Therapies Unit, University Hospital Careggi, Florence, Italy.
  • Bartoloni E; Unit of Pediatric Rheumatology, Azienda Socio-Sanitaria Territoriale (ASST) Gaetano Pini-Centro Specialistico Ortopedico Traumatologico (CTO), Milan, Italy.
  • Iagnocco A; Department of Precision Medicine, Università Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy.
  • Viapiana O; University Department of Health Promotion, Mother and Child Care, Internal Medicine and Medical Specialties (PROMISE) "G. D'Alessandro", University of Palermo, Palermo, Italy.
  • Sebastiani GD; Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy.
  • Guerriero S; Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy.
  • Insalaco A; Academic Rheumatology Center, Dipartimento Scienze Cliniche e Biologiche, Università degli Studi di Torino, Turin, Italy.
  • Del Giudice E; Rheumatology Unit, Department of Medicine, University of Verona, Verona, Italy.
  • Conti G; Rheumatology Unit, San Camillo - Forlanini Hospital, Rome, Italy.
  • Barone P; Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy.
  • Olivieri AN; Division of Rheumatology, Ospedale Pediatrico Bambino Gesù, IRCCS [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], Rome, Italy.
  • Brucato A; Pediatric and Neonatology Unit, Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Latina, Italy.
  • Carubbi F; Pediatric Nephrology and Rheumatology Unit, Azienda Ospedaliero Universitaria (AOU) G Martino, Messina, Italy.
  • Triggianese P; Department of Clinical and Experimental Medicine, University of Catania, Catania, Italy.
  • Mauro A; Department of Woman, Child and of General and Specialized Surgery, University of Campania "Luigi Vanvitelli", Naples, Italy.
  • Tosi GM; Department of Biomedical and Clinical Sciences, Fatebenefratelli Hospital, Università di Milano, Milan, Italy.
  • Fonollosa A; Department of Life, Health & Environmental Sciences and Internal Medicine and Nephrology Unit, Department of Medicine, University of L'Aquila and ASL Avezzano-Sulmona-L'Aquila, San Salvatore Hospital, L'Aquila, Italy.
  • Giardini HAM; Rheumatology, Allergology and Clinical Immunology, Department of System Medicine, University of Rome Tor Vergata, Rome, Italy.
  • Ragab G; Pediatric Rheumatology Unit, Department of Childhood and Developmental Medicine, Fatebenefratelli-Sacco Hospital, Milan, Italy.
  • Tharwat S; Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena and Azienda Ospedaliero-Universitaria Senese [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory, and Autoimmune Diseases (RITA) Center], Siena, Italy.
  • Hernández-Rodríguez J; Department of Ophthalmology, Biocruces Bizkaia Health Research Institute, Cruces University Hospital, University of the Basque Country, Barakaldo, Spain.
  • Sfikakis PP; Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil.
Front Med (Lausanne) ; 10: 1188021, 2023.
Article en En | MEDLINE | ID: mdl-37396916
ABSTRACT

Introduction:

This 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 Behçet's disease (BD).

Methods:

The project was coordinated by the University of Siena and the Italian patient advocacy organization SIMBA (Associazione Italiana Sindrome e Malattia di Behçet), 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.

Results:

Respondents 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 Behçet'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 ± 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).

Discussion:

Preliminary 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.
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Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Tipo de estudio: Prognostic_studies Idioma: En Revista: Front Med (Lausanne) Año: 2023 Tipo del documento: Article País de afiliación: Italia
Texto completo
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Tipo de estudio: Prognostic_studies Idioma: En Revista: Front Med (Lausanne) Año: 2023 Tipo del documento: Article País de afiliación: Italia