Admissions and Cost of Hospitalisation of Phenylketonuria: Spanish Claims Database Analysis

Abstract

Background: Phenylketonuria (PKU) is a well-known rare disease which is included in the neonatal screening of many countries. Therefore there are few published data on the admissions and cost in Spain.Objective: To assess the number of admissions and economic burden of PKU in Spain.Methods: PKU patients were identified from a Spanish database containing data from public and private healthcare centres from 1997 to 2015. The parameters obtained were: characteristics of the patients, type of admissions, readmissions, discharge, length of stay, medical service, annual number of visits, annual number of patients, visit associated costs and patient associated costs.Results: 594 PKU patients were identified: 48.32% were males with a mean (SD) age of 4.50 (10.23) years. The hospital admissions were divided into emergency visits (55.94%) and scheduled visits (43.92%). Most of the discharges were at home (98.86%). The mean (SD) duration of stay was 4.04(4.98) days.

Characteristics, comorbidities, and use of healthcare resources of patients with phenylketonuria: a population-based study

“…The analysis revealed few differences to previous evaluations in the whole country. Patients' age at first admission, 14.90 years, was relatively elevated in comparison with the 4.5 years determined in Spain [11]. However, patients' diagnoses are registered in the database solely after 2007, and diagnoses made before that year are not included.…”

“…This cost is presumed higher than in the general population as a consequence of the major use of healthcare resources that derives from the higher portion of patients with chronic comorbid conditions. In Spain cost estimations situated annual costs of PKU at around €4,239 in 2015, however, therein, calculation methods were based on patients' diagnoses and are not entirely comparable [11]. Currently, the majority of costs associated with the disease are indirect costs, covered by families and patients, due to the extended use of a dietary treatment [23,24]…”

“…In such cases, neonatal screenings are justified based on the reduction of costs associated with treating patients later on [10]. A previous study analyzed the costs associated to PKU in Spain, together with its epidemiology [11]; however, in Spanish regions as Catalonia (7.5 million inhabitants) the regional government is in charge of the health care system, hence the interest of regional evaluations. In order to facilitate the management and examination of patient data, the local government has developed a specialized program that recruits patient information: the data analysis for research and innovation in health program (PADRIS) [12].…”

Professional activity, gender and disease-related emotions: The impact on parents' experiences in caring for children with phenylketonuria

“…Economic factors also play an important role in the management and care of children with PKU [ 18 , 27 , 28 ]. There are two main reasons for this.…”

Analysis of economic burden and its associated factors of twenty-three rare diseases in Shanghai

“…For a rare disease with effective treatments, there is especially a strong health interest relating to their economic burden. Recent studies have reported economic burden of diseases such as hemophilia [3–5], cystic fibrosis [6, 7], phenylketonuria [8], and fragile X syndrome [9, 10] from the perspective of patients, families, and societies in Europe, United States, and Canada.…”