SOCIOECONOMIC CHARACTERISTICS and COSTS of RARE and ORPHAN DISEASES in PERU, 2019

Grecia Claussen-Portocarrero, Alfonso Gutierrez-Aguado

Research output: Contribution to journalOriginal Articlepeer-review

4 Scopus citations

Abstract

Introduction: The rare and orphan diseases (ERH) constitute a current challenge due to the little attention given to them. Objectives: Describe the socioeconomic characteristics of rare and orphan diseases (ERH) in Peru, 2019. Methods: Descriptive observational design. The information was obtained from FISSAL administrative records and an intentional sample of 20 patients was taken to carry out the questionnaire on ERH. For economic records, a review of the public budget of the MEF was made. The data analysis was descriptive and inferential. Results: There were 454 patients with a total of 49 ERH, of these, the most representative age groups were schoolchildren and young adults (18% each) and the most frequent diagnosis was Tetralogy of Fallot (22%). The questionnaire on ERH reports a median of 7 months in the delay of diagnosis and between 3 and 5 doctors were visited. Likewise, 30% considered that it generated a high to very high expense. It was calculated that the ERH budget constitutes 2.25% of the total budget for high-cost diseases, likewise, the ERH budget was different between 2014 and 2019. Conclusions: The population with ERH in Peru is not large; however, it requires greater attention to access to health services, as well as a greater budget allocation.

Translated title of the contributionCARACTERÍSTICAS SOCIOECONÓMICAS Y COSTOS DE ENFERMEDADES RARAS Y HUÉRFANAS EN EL PERÚ, 2019
Original languageAmerican English
Pages (from-to)732-740
Number of pages9
JournalRevista de la Facultad de Medicina Humana
Volume21
Issue number4
DOIs
StateIndexed - 23 Sep 2021

Bibliographical note

Publisher Copyright:
© 2021 Universidad Ricardo Palma, Facultad de Medicina Humana. All Rights Reserved.

Keywords

  • Cost of illness
  • Economics
  • Health economics
  • Peru
  • Rare diseases

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