학술논문
A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project
Document Type
article
Author
Carla Gaggiano; Alessandra Del Bianco; Jurgen Sota; Stefano Gentileschi; Piero Ruscitti; Roberto Giacomelli; Matteo Piga; Francesca Crisafulli; Sara Monti; Giacomo Emmi; Amato De Paulis; Antonio Vitale; Maria Tarsia; Valeria Caggiano; Rossana Nuzzolese; Veronica Parretti; Claudia Fabiani; Giuseppe Lopalco; Armin Maier; Marco Cattalini; Donato Rigante; Marcello Govoni; Francesca Li Gobbi; Serena Guiducci; Paola Parronchi; Achille Marino; Francesco Ciccia; Maria Cristina Maggio; Emma Aragona; Elena Bartoloni; Annamaria Iagnocco; Ombretta Viapiana; Gian Domenico Sebastiani; Silvana Guerriero; Antonella Insalaco; Emanuela Del Giudice; Giovanni Conti; Patrizia Barone; Alma Nunzia Olivieri; Antonio Brucato; Francesco Carubbi; Paola Triggianese; Angela Mauro; Gian Marco Tosi; Alex Fonollosa; Henrique Ayres Mayrink Giardini; Gaafar Ragab; Samar Tharwat; José Hernández-Rodríguez; Petros P. Sfikakis; Katerina Laskari; Anastasios Karamanakos; Gerard Espinosa; Farhad Shahram; Haner Direskeneli; Andrea Hinojosa-Azaola; Daniela Opris-Belinski; Ibrahim A. AlMaghlouth; Gülen Hatemi; Mehmet Akif Eksin; Fatos Önen; Ewa Więsik-Szewczyk; Nurullah Akkoç; Abdurrahman Tufan; Ali Şahin; Şükran Erten; Seza Ozen; Ezgi Deniz Batu; Bruno Frediani; Alberto Balistreri; Luca Cantarini
Source
Frontiers in Medicine, Vol 10 (2023)
Subject
Language
English
ISSN
2296-858X
Abstract
IntroductionThis 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).MethodsThe 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.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 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