• Josep Darbà and Meritxell Ascanio.
• Department of Economics, Universitat de Barcelona, Diagonal 690, 08034, Barcelona, Spain. darba@ub.edu.
• Clin Drug Investig. 2019 Apr 1; 39 (4): 379-384.

BackgroundPhenylketonuria is a well-known rare disease included in the neonatal screening of many countries. Therefore, there are few published data on the admissions and costs of phenylketonuria in Spain.ObjectiveThe objective of this study was to assess the number of admissions and the economic burden of phenylketonuria in Spain.MethodsPatients with phenylketonuria 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, discharges, length of stay, medical service, annual number of visits, annual number of patients, visit-associated costs and patient-associated costs.ResultsFive hundred and ninety-four patients with phenylketonuria were identified: 48.32% were male with a mean (standard deviation) age of 4.50 (10.23) years. The hospital admissions were divided into emergency visits (55.94%) and scheduled visits (43.92%). The majority of patients were discharged home (98.86%). The mean (standard deviation) duration of stay was 4.04 (4.98) days. The number of admissions per year ranged between 13 and 88, with an average of 1.18 admissions per patient per year. Finally, the mean cost per visit increased from €1064.91 to €3709.40, and the mean cost per patient increased from €1818.90 to €4239.32 from 1999 to 2015.ConclusionsThe access to economic and social data on phenylketonuria in Spain has been updated. The number of admissions in Spain between 1997 and 2015 and healthcare costs between 1999 and 2015 were calculated. There were 24 admissions as a result of a phenylketonuria diagnosis in 2015 and the mean healthcare cost per patient was €4239.32. This information can help to adapt and improve each healthcare system to take into consideration rare diseases.

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