Travel distance to tertiary healthcare reflects disease severity and medication access in Italian systemic sclerosis patients: a geographical study on adult-onset rare diseases from SPRING-SIR registry
Abstract
Systemic sclerosis (SSc) is a rare, multiorgan disease in adults that requires specialized care. Commuting to tertiary medical centers poses a considerable burden and incurs significant costs, potentially affecting management choices. This study aims to describe the healthcare commuting burden and evaluate whether longer commuting distances are associated with disease severity and differences in medication access among Italian SSc patients. The driving distance from the city of residence to the care center was calculated using the Google Maps Distance Matrix API for patients from the Systemic Sclerosis Progression Investigation (SPRING) registry. These distances were categorized according to EUROSTAT classes. Travel distance was then correlated with clinical variables, medication access, and estimated annual pharmaceutical costs, based on standard doses and fares from the Italian Medicines Agency. The median commuting distance of the 1,795 enrolled patients was 59.4 (IQR 38.2–101.9) km, with 25.7% of them traveling more than 100 km to reach the tertiary center. Patients commuting more than 100 km to reach a tertiary center presented more frequent and severe vascular and fibrotic pulmonary complications and more commonly accessed advanced medications. The median annual drug cost was €4,407/patient, with 6.2% of patients accounting for half of the total medication budget. Drug costs reflect clinical manifestations, but correlated with commuting distances independently of disease severity. Commuting distances are correlated with disease severity and the need for advanced treatments. Public health strategies should aim to enhance accessibility to specialized care and advanced therapies for these patients, recognizing the impact of travel burden on healthcare access.
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Authors: Enrico De Lorenzis, Gerlando Natalello, Rossella De Angelis, Lucrezia Verardi, Dilia Giuggioli, Gianluigi Bajocchi, Lorenzo Dagna, Silvia Bellando-Randone, Giovanni Zanframundo, Rosario Foti, Fabio Cacciapaglia, Giovanna Cuomo, Alarico Ariani, Edoardo Rosato, Gemma Lepri, Francesco Girelli, Valeria Riccieri, Elisabetta Zanatta, Ilaria Cavazzana, Francesca Ingegnoli, Maria De Santis, Giuseppe Murdaca, Giuseppina Abignano, Giorgio Pettiti, Alessandra Della Rossa, Maurizio Santi Caminiti, Annamaria Iuliano, Giovanni Ciano, Lorenzo Beretta, Gianluca Bagnato, Ennio Lubrano, Maria Ilenia De Andres, Alessandro Giollo, Cosimo Bruni, Martina Orlandi, Marco Fornaro, Marta Saracco, Cecilia Agnes, Gabriella Alonzi, Marco Di Battista, Edoardo Cipolletta, Federica Lumetti, Amelia Spinella, L. Magnani, Corrado Campochiaro, Giacomo Davide De Luca, Veronica Codullo, Elisa Visalli, Carlo Iandoli, Antonietta Gigante, Greta Pellegrino, Erika Pigatto, Maria Grazia Lazzaroni, Franco Franceschini, Elena Generali, Gianna Mennillo, Simone Barsotti, Giuseppa Pagano Mariano, Federica Furini, Licia Vultaggio, Simone Parisi, Clara Lisa Peroni, Gerolamo Bianchi, Enrico Fusaro, Gian Domenico Sebastiani, Marcello Govoni, Salvatore D’Angelo, Franco Cozzi, Fabrizio Conti, Serena Guiducci, Andrea Doria, Carlo Salvarani, Florenzo Iannone, Maria Antonietta D’Agostino, Clodoveo Ferri, M Matucci Cerinic, Silvia Laura Bosello, SPRING-SIR collaborators
Institutions: University of Bari Aldo Moro, University of Padua, University of Verona, Azienda Ospedaliero-Universitaria Careggi, Policlinico San Matteo Fondazione, University of Brescia, Azienda Unità Sanitaria Locale Della Romagna, University of Florence, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Marche Polytechnic University, University of Pavia, Sapienza University of Rome, Humanitas University, IRCCS Humanitas Research Hospital, University of Milan, University of Pisa, Vita-Salute San Raffaele University, Azienda Ospedaliera Citta' della Salute e della Scienza di Torino, University of Genoa, IRCCS Ospedale Galeazzi - Sant'Ambrogio, Istituto di Ricovero e Cura a Carattere Scientifico San Raffaele, University of Campania "Luigi Vanvitelli", University of Catania, University of Basilicata, Carlo Forlanini Hospital, University of Ferrara, Ospedale di Parma, Agostino Gemelli University Polyclinic, Ospedale Policlinico San Martino, Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia, University of Molise, University of Modena and Reggio Emilia, Azienda di Rilievo Nazionale ed Alta Specializzazione, University of Messina, University of the Sacred Heart, IRCCS Ospedale San Raffaele, Ospedale San Carlo, Azienda Sanitaria Unità Locale di Reggio Emilia, Azienda Ospedaliera San Camillo-Forlanini, Arcispedale Sant'Anna, Azienda Sanitaria Ospedaliera S.Croce e Carle Cuneo, Azienda Ospedaliero Universitaria Policlinico "G.Rodolico - San Marco", Ospedale San Bassiano