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A Patient-Driven Registry on Behcet’S Disease: The Aida for Patients Pilot Project Publisher



Gaggiano C1 ; Del Bianco A2 ; Sota J1 ; Gentileschi S1 ; Ruscitti P3 ; Giacomelli R4 ; Piga M5 ; Crisafulli F6 ; Monti S7 ; Emmi G8, 9 ; De Paulis A10, 11 ; Vitale A1 ; Tarsia M12 ; Caggiano V1 Show All Authors
Authors
  1. Gaggiano C1
  2. Del Bianco A2
  3. Sota J1
  4. Gentileschi S1
  5. Ruscitti P3
  6. Giacomelli R4
  7. Piga M5
  8. Crisafulli F6
  9. Monti S7
  10. Emmi G8, 9
  11. De Paulis A10, 11
  12. Vitale A1
  13. Tarsia M12
  14. Caggiano V1
  15. Nuzzolese R1
  16. Parretti V1
  17. Fabiani C13
  18. Lopalco G14
  19. Maier A15
  20. Cattalini M16
  21. Rigante D17, 18
  22. Govoni M19
  23. Li Gobbi F20
  24. Guiducci S8
  25. Parronchi P8, 21
  26. Marino A22
  27. Ciccia F23
  28. Maggio MC24
  29. Aragona E25
  30. Bartoloni E26
  31. Iagnocco A27
  32. Viapiana O28
  33. Sebastiani GD29
  34. Guerriero S30
  35. Insalaco A31
  36. Del Giudice E32
  37. Conti G33
  38. Barone P34
  39. Olivieri AN35
  40. Brucato A36
  41. Carubbi F37
  42. Triggianese P38
  43. Mauro A39
  44. Tosi GM13
  45. Fonollosa A40
  46. Giardini HAM41
  47. Ragab G42, 43
  48. Tharwat S44, 45
  49. Hernandezrodriguez J46
  50. Sfikakis PP47
  51. Laskari K47
  52. Karamanakos A48
  53. Espinosa G46
  54. Shahram F49
  55. Direskeneli H50
  56. Hinojosaazaola A51
  57. Oprisbelinski D52
  58. Almaghlouth IA53, 54
  59. Hatemi G55, 56
  60. Eksin MA57
  61. Onen F58
  62. Wiesikszewczyk E59
  63. Akkoc N60
  64. Tufan A61
  65. Sahin A62
  66. Erten S57
  67. Ozen S63
  68. Batu ED63
  69. Frediani B1
  70. Balistreri A64
  71. Cantarini L1
Show Affiliations
Authors Affiliations
  1. 1. 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
  2. 2. S.I.M.B.A (Associazione Italiana Sindrome e Malattia di Behcet), Pontedera, Italy
  3. 3. Rheumatology Unit, Department of Biotechnological & Applied Clinical Sciences, University of L’Aquila, L’Aquila, Italy
  4. 4. Rheumatology and Immunology Unit, Department of Medicine, University of Rome “Campus Biomedico�, Rome, Italy
  5. 5. Rheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy
  6. 6. 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
  7. 7. Division of Rheumatology, Fondazione IRCCS Policlinico San Matteo [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], Pavia, Italy
  8. 8. Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy
  9. 9. Centre for Inflammatory Diseases, Department of Medicine, Monash Medical Centre, Monash University, Clayton, VIC, Australia
  10. 10. Department of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II, Naples, Italy
  11. 11. Center for Basic and Clinical Immunology Research (CISI), WAO Center of Excellence, University of Naples Federico II, Naples, Italy
  12. 12. 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
  13. 13. 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
  14. 14. Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
  15. 15. Rheumatology Unit, Department of Medicine, Central Hospital of Bolzano, Bolzano, Italy
  16. 16. 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
  17. 17. Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
  18. 18. Rare Diseases and Periodic Fevers Research Centre, Universita Cattolica del Sacro Cuore, Rome, Italy
  19. 19. Rheumatology Unit, Department of Medical Sciences, Azienda Ospedaliero-Universitaria S. Anna-Ferrara, University of Ferrara, Ferrara, Italy
  20. 20. Rheumatology Unit, Hospital S. Giovanni di Dio, Azienda USL-Toscana Centro, Florence, Italy
  21. 21. Immunology and Cellular Therapies Unit, University Hospital Careggi, Florence, Italy
  22. 22. Unit of Pediatric Rheumatology, Azienda Socio-Sanitaria Territoriale (ASST) Gaetano Pini-Centro Specialistico Ortopedico Traumatologico (CTO), Milan, Italy
  23. 23. Department of Precision Medicine, Universita Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy
  24. 24. University Department of Health Promotion, Mother and Child Care, Internal Medicine and Medical Specialties (PROMISE) “G. D’Alessandro�, University of Palermo, Palermo, Italy
  25. 25. Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy
  26. 26. Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy
  27. 27. Academic Rheumatology Center, Dipartimento Scienze Cliniche e Biologiche, Universita degli Studi di Torino, Turin, Italy
  28. 28. Rheumatology Unit, Department of Medicine, University of Verona, Verona, Italy
  29. 29. Rheumatology Unit, San Camillo – Forlanini Hospital, Rome, Italy
  30. 30. Department of Ophthalmology and Otolaryngology, University of Bari, Bari, Italy
  31. 31. Division of Rheumatology, Ospedale Pediatrico Bambino Gesu, IRCCS [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], Rome, Italy
  32. 32. Pediatric and Neonatology Unit, Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Latina, Italy
  33. 33. Pediatric Nephrology and Rheumatology Unit, Azienda Ospedaliero Universitaria (AOU) G Martino, Messina, Italy
  34. 34. Department of Clinical and Experimental Medicine, University of Catania, Catania, Italy
  35. 35. Department of Woman, Child and of General and Specialized Surgery, University of Campania “Luigi Vanvitelli�, Naples, Italy
  36. 36. Department of Biomedical and Clinical Sciences, Fatebenefratelli Hospital, Universita di Milano, Milan, Italy
  37. 37. 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
  38. 38. Rheumatology, Allergology and Clinical Immunology, Department of System Medicine, University of Rome Tor Vergata, Rome, Italy
  39. 39. Pediatric Rheumatology Unit, Department of Childhood and Developmental Medicine, Fatebenefratelli-Sacco Hospital, Milan, Italy
  40. 40. Department of Ophthalmology, Biocruces Bizkaia Health Research Institute, Cruces University Hospital, University of the Basque Country, Barakaldo, Spain
  41. 41. Rheumatology Division, Hospital das Clinicas (HCFMUSP), Faculdade de Medicina, Universidade de Sao Paulo, Sao Paulo, Brazil
  42. 42. Rheumatology and Clinical Immunology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo University, Giza, Egypt
  43. 43. Faculty of Medicine, New Giza University, Giza, Egypt
  44. 44. Rheumatology and Immunology Unit, Internal Medicine Department, Mansoura University, Mansoura, Egypt
  45. 45. Department of Internal Medicine, Faculty of Medicine, Horus University, New Damietta, Egypt
  46. 46. Department of Autoimmune Diseases, Institut d’Investigacions Biomediques August Pi I Sunyer (IDIBAPS), Hospital Clinic of Barcelona [European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center], University of Barcelona, Barcelona, Spain
  47. 47. Joint Academic Rheumatology Program, Medical School, National and Kapodistrian University of Athens, Athens, Greece
  48. 48. Department of Rheumatology, Evangelismos General Hospital, Athens, Greece
  49. 49. Behcet’s Disease Unit, Rheumatology Research Center, Shariati Hospital Tehran University of Medical Sciences, Tehran, Iran
  50. 50. Department of Internal Medicine, Division of Rheumatology, Marmara University, Faculty of Medicine, Istanbul, Turkey
  51. 51. Department of Immunology and Rheumatology, Instituto Nacional de Ciencias Medicas Y Nutricion Salvador Zubiran, Mexico City, Mexico
  52. 52. Rheumatology and Internal Medicine Department, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
  53. 53. Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia
  54. 54. College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia
  55. 55. Department of Internal Medicine, Division of Rheumatology, Cerrahpasa Medical School, Istanbul University-Cerrahpasa, Istanbul, Turkey
  56. 56. Behcet’s Disease Research Center, Istanbul University-Cerrahpasa, Istanbul, Turkey
  57. 57. Rheumatology Clinic, Ankara City Hospital, Ankara, Turkey
  58. 58. Department of Internal Medicine Division of Rheumatology, Dokuz Eylul University Faculty of Medicine, Izmir, Turkey
  59. 59. Department of Internal Medicine, Pneumonology, Allergology and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defense, Military Institute of Medicine, National Research Institute, Warsaw, Poland
  60. 60. Division of Rheumatology, Department of Internal Medicine, School of Medicine, Manisa Celal Bayar University, Manisa, Turkey
  61. 61. Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine Gazi University, Ankara, Turkey
  62. 62. Division of Rheumatology, Department of Internal Medicine, Sivas Cumhuriyet University Medical Faculty, Sivas, Turkey
  63. 63. Pediatric Rheumatology Unit, Department of Pediatrics, Hacettepe University School of Medicine, Ankara, Turkey
  64. 64. Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy

Source: Frontiers in Medicine Published:2023


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 Behcet’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 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. 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 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 ± 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. Copyright © 2023 Gaggiano, Del Bianco, Sota, Gentileschi, Ruscitti, Giacomelli, Piga, Crisafulli, Monti, Emmi, De Paulis, Vitale, Tarsia, Caggiano, Nuzzolese, Parretti, Fabiani, Lopalco, Maier, Cattalini, Rigante, Govoni, Li Gobbi, Guiducci, Parronchi, Marino, Ciccia, Maggio, Aragona, Bartoloni, Iagnocco, Viapiana, Sebastiani, Guerriero, Insalaco, Del Giudice, Conti, Barone, Olivieri, Brucato, Carubbi, Triggianese, Mauro, Tosi, Fonollosa, Giardini, Ragab, Tharwat, Hernandez-Rodriguez, Sfikakis, Laskari, Karamanakos, Espinosa, Shahram, Direskeneli, Hinojosa-Azaola, Opris-Belinski, AlMaghlouth, Hatemi, Eksin, Onen, Wiesik-Szewczyk, Akkoc, Tufan, Sahin, Erten, Ozen, Batu, Frediani, Balistreri and Cantarini.
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1. Development and Implementation of the Aida International Registry for Patients With Behcet’S Disease, Internal and Emergency Medicine (2022)
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3. Validity and Reliability of the Persian Version of Behcet’S Disease Quality-Of-Life (Bd-Qol) Questionnaire: A Cross-Cultural Adaptation, Rheumatology International (2015)
4. Association of Lifestyle Elements With Self-Rated Wellness and Health Status in Patients With Behcet's Disease, BMC Rheumatology (2020)
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