Healthcare Burden of Rare Diseases: A Population-Based Study in Tuscany (Italy).
Int J Environ Res Public Health
; 19(13)2022 06 21.
Article
en En
| MEDLINE
| ID: mdl-35805212
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.
Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Atención a la Salud
/
Enfermedades Raras
Tipo de estudio:
Diagnostic_studies
/
Observational_studies
/
Prognostic_studies
/
Risk_factors_studies
Aspecto:
Determinantes_sociais_saude
Límite:
Humans
País/Región como asunto:
Europa
Idioma:
En
Revista:
Int J Environ Res Public Health
Año:
2022
Tipo del documento:
Article
País de afiliación:
Italia