For patients living with systemic sclerosis, a rare and potentially devastating autoimmune disease, the journey to expert care can be measured in hours behind the wheel. A new geographical study drawing on one of the largest Italian registries of the disease has now shown that those journeys are far more than an inconvenience. The distance a patient must travel to reach a tertiary referral center tracks closely with how severe their disease is, how badly their lungs and blood vessels are affected, and whether they have gained access to the most advanced medications available.
The research, published in BMC Public Health by an extensive network of Italian rheumatologists working with the Systemic Sclerosis Progression Investigation registry under the auspices of the Italian Society of Rheumatology, analyzed 1,795 adult patients with systemic sclerosis. Rather than relying on straight-line map measurements, the team calculated actual driving distances from each patient’s city of residence to their care center using the Google Maps Distance Matrix API, then grouped those distances into standardized classes defined by EUROSTAT, the European Statistical Office. This approach captured the real-world travel burden, including the winding roads and mountain passes that characterize much of the Italian peninsula.
The headline numbers are striking. The median commuting distance was 59.4 kilometers, with an interquartile range running from 38.2 to 101.9 kilometers. More than a quarter of all patients, 25.7 percent, traveled more than 100 kilometers each way to reach the specialists equipped to manage their disease. For a condition that requires frequent monitoring of lung function, blood vessel health, skin thickening, and organ complications, that distance represents a recurring investment of time, money, and physical energy that many patients with a chronic illness can ill afford.
Systemic sclerosis is a multiorgan connective tissue disease characterized by abnormal fibrosis, or scarring, of the skin and internal organs, along with vasculopathy, a dysfunction of the small blood vessels. Its most feared complications include interstitial lung disease, in which scar tissue progressively stiffens the lung tissue, and pulmonary arterial hypertension, a rise in pressure in the arteries supplying the lungs that can lead to heart failure. Both complications are life-limiting, and both demand early detection and specialist management, which is precisely why patients are referred to tertiary centers far from home.
When the researchers cross-referenced travel distance with clinical data, a clear pattern emerged. Patients commuting more than 100 kilometers to their tertiary center presented with more frequent and more severe vascular and fibrotic pulmonary complications than those living closer. Their lung function measures, including forced vital capacity and the diffusion capacity for carbon monoxide, reflected greater impairment. In other words, the patients who had to travel furthest were also, on average, the sickest, and the geography of care access mirrored the geography of disease burden.
The study also examined medication access and pharmaceutical spending, estimating annual drug costs for each patient using standard doses and official prices from the Italian Medicines Agency, known as AIFA. The median annual drug cost came to 4,407 euros per patient. Yet the distribution of spending was highly skewed: just 6.2 percent of patients accounted for half of the total medication budget. This concentration reflects the economics of rare disease treatment, where a small group of patients with severe complications require expensive advanced therapies such as targeted vasodilators and antifibrotic agents.
Perhaps the most intriguing finding concerns the relationship between distance and drug costs. Medication spending clearly reflected clinical manifestations, rising with the severity of lung and vascular disease as expected. But the analysis showed that drug costs correlated with commuting distances independently of disease severity. Patients who traveled farther were more likely to access advanced medications, a pattern the authors suggest may reflect the dynamics of being followed at highly specialized centers, where familiarity with cutting-edge therapies and enrollment in structured care pathways can translate into more aggressive pharmacological management.
The interpretation cuts two ways, and the researchers are careful about what the data can and cannot show. On one hand, longer travel distances may simply be a marker of disease severity, since the most complicated cases are the ones referred to distant expert centers in the first place. On the other hand, the independent association between distance and medication access raises the possibility that proximity to specialized care shapes treatment decisions in ways that go beyond clinical need. Either way, the study demonstrates that geography is not a neutral variable in rare disease management; it is woven into both the presentation of the disease and the response of the health system.
For public health planners, the implications are concrete. The authors argue that strategies should aim to enhance accessibility to specialized care and advanced therapies for systemic sclerosis patients, recognizing the tangible impact of travel burden on healthcare access. Practical measures might include expanding telemedicine follow-up, creating shared-care arrangements in which local hospitals handle routine monitoring while tertiary centers manage complex decisions, and ensuring that patients in remote regions are not systematically disadvantaged in accessing expensive but effective treatments. In a country like Italy, where specialist expertise is concentrated in a limited number of reference centers and the population is dispersed across mountains, islands, and rural interior regions, such structural questions carry real weight.
Beyond systemic sclerosis, the study offers a methodological template for studying other adult-onset rare diseases. By combining registry-based clinical data with algorithmically derived travel distances and standardized cost estimates, the researchers created a quantitative portrait of healthcare commuting that could be replicated for any condition requiring tertiary care. As rare disease networks expand across Europe, the lesson from this Italian cohort is clear: where patients live shapes what care they receive, and health systems that ignore the mileage between the patient and the expert may be quietly tolerating inequities that show up in lungs, blood vessels, and pharmacy bills alike.
Subject of Research: Geographical access to tertiary care and its relationship with disease severity and medication access in systemic sclerosis
Article Title: 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
Article References: De Lorenzis, E., Natalello, G., De Angelis, R., Verardi, L., Giuggioli, D., Bajocchi, G., Dagna, L., Bellando-Randone, S., Zanframundo, G., Foti, R., Cacciapaglia, F., Cuomo, G., Ariani, A., Rosato, E., Lepri, G., Girelli, F., Riccieri, V., Zanatta, E., Cavazzana, I., … SPRING-SIR collaborators (2026). 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. BMC Public Health. https://doi.org/10.1186/s12889-026-28120-7
Image Credits: AI Generated
DOI: 10.1186/s12889-026-28120-7
Keywords: systemic sclerosis, healthcare access, travel distance, rare diseases, tertiary care, interstitial lung disease, pulmonary arterial hypertension, pharmaceutical costs, health geography, SPRING registry, Italy, telemedicine
