ArticleInternational journal of environmental research and public health2022
Healthcare Burden of Rare Diseases: A Population-Based Study in Tuscany (Italy).
Article in International journal of environmental research and public health, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- Epidemiological characterization of rare diseases in Brazil: A retrospective study of the Brazilian Rare Diseases Network.Orphanet journal of rare diseases · 2024Article
- Measuring the impact of rare diseases in Tasmania, Australia.Orphanet journal of rare diseases · 2024Article
- Trends in Hospitalization Duration for Rare Diseases: A Retrospective Analysis of Sarcoidosis, Still's Disease, and Systemic Sclerosis in Poland (2009-2018).Medical science monitor : international medical journal of experimental and clinical research · 2023Article
- Informing a national rare disease registry strategy in Australia: a mixed methods study.BMC health services research · 2023Article
- Profile of Drug Utilization in Patients with Rare Diseases in Tuscany, Italy: A Population-Based Study.International journal of environmental research and public health · 2023Article
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6 authors.
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Abstract
Patients with rare diseases (RDs) need tailored, continuous, and multidisciplinary hospital care. This retrospective cohort study aimed to analyse the healthcare burden of RD patients using a multi-database approach, by linking the data of the Rare Diseases Registry of Tuscany with the regional hospital discharge database. The study population included 21,354 patients diagnosed with a RD between 1 January 2000 and 31 December 2017. The healthcare burden was evaluated for all the RDs during 2009-2018 period. The hospitalisation rate (per 1000) decreased over the years, ranging from 606.9 in 2009 (95% CI: 589.2-625.0) to 443.0 in 2018 (95% CI: 433.2-453.0). A decrease in the average length of stay (LOS) was observed in the earlier years, followed by an increase up to a steady trend (8.3 days in 2018). The patients with RDs of metabolism and the genitourinary system showed the highest hospitalisation rate (903.3 and 644.0 per 1000, respectively). The patients with rare immune system disorders and diseases of the skin and subcutaneous tissue showed the highest LOS (9.7 and 9.5 days, respectively). The methodological approach presented in this population-based study makes it possible to estimate the healthcare burden of RDs, which is crucial in the decision-making and planning aimed at improving patient care.
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