JOINT DISEASE AND ITS MEDICAL AND SOCIO-ECONOMIC IMPACT ON HEMOPHILIA CARE IN ROMANIA

https://www.doi.org/10.22551/MSJ.2021.01.20

  • SERBAN P. “Victor Babes” University of Medicine and Pharmacy Timisoara, Romania
  • ARGHIRESCU Teodora Smaranda “Victor Babes” University of Medicine and Pharmacy Timisoara, Romania
  • SERBAN Margit Romanian Academy of Medical Sciences, Onco-Hematology Research Unit, Timisoara, Romania
  • BOIA E. “Victor Babes” University of Medicine and Pharmacy Timisoara, Romania
  • PATRASCU J. M. Victor Babes” University of Medicine and Pharmacy Timisoara, Romania
  • URSU Cristina Emilia Romanian Academy of Medical Sciences, Onco-Hematology Research Unit, Timisoara, Romania
  • TRAILA Adina . Medical Centre for Evaluation Therapy, Medical Education and Rehabilitation of Children and Young Adults, European Hemophilia Treatment Centre, Buzias, Romania
  • JINCA C. “Victor Babes” University of Medicine and Pharmacy Timisoara, Romania
  • ANDREI D. Romanian Hemophilia Association Timisoara, Romania
  • KOZMA A. “Alessandrescu-Rusescu” National Institute for Mother and Child Health, Bucharest, Romania
  • VLAICU Brigitha “Victor Babes” University of Medicine and Pharmacy Timisoara, Romania

Abstract

Hemophilia is a congenital, hereditary, rare bleeding disorder, which fortunately has nowadays an optimal therapeutical solution, namely a life-long replacement therapy (RT) with the missing coagulation factor VIII (hemophilia A) or IX (hemophilia B). Inappropriate treatment results in secondary morbidity, dominated by the chronic hem arthropathy, with high medical and socioeconomic burden. Objectives: As in our country, RT has been started only in 1997 and a real prophylactic replacement (PR) only in 2016/2017, we aimed at conducting a study of persons mainly with prophylactic RT and of those mainly with on-demand (OD) regimen for obtaining a comparative evaluation of the medical and socio-economic outcomes. Material and methods: This observational cross-sectional patient-reported outcome (PRO) survey included 122 patients with a severe form of the disease, willing to answer to a large questionnaire with 56 items focused on 4 domains: socio-demographic, medical, quality of health and life, and direct costs of care. Results: There have been assessed striking, statistically different results, concerning the markers which reveal clinical severity (annualized joint and non-joint bleeding rate, target joints, hem arthropathy), the need for chronic analgesic therapy and orthopedic interventions, frequency of deficiency, disability, handicap and social assistance in the group of persons with OD treatment vs. PR. The high costs related to surgical interventions and occurrence of inhibitors have been underlined, related to a secondary morbidity of hemophilia. Conclusions: The favorable effects of PR are evident also in our country; its high costs are counterbalanced by the deleterious health and quality of life results of OD treatment, and also by its high costs for the specific secondary morbidity, pleading in the favor of PR, in accordance with the principles of care in Europe.

Author Biographies

SERBAN P., “Victor Babes” University of Medicine and Pharmacy Timisoara, Romania

Department 14, Center for Preventive Medicine Studies

ARGHIRESCU Teodora Smaranda, “Victor Babes” University of Medicine and Pharmacy Timisoara, Romania

Department of Pediatrics, Division of Onco-Hematology

BOIA E., “Victor Babes” University of Medicine and Pharmacy Timisoara, Romania

Department of Pediatric Surgery

PATRASCU J. M., Victor Babes” University of Medicine and Pharmacy Timisoara, Romania

Department of Orthopedics

JINCA C., “Victor Babes” University of Medicine and Pharmacy Timisoara, Romania

Department of Pediatrics, Division of Onco-Hematology

KOZMA A., “Alessandrescu-Rusescu” National Institute for Mother and Child Health, Bucharest, Romania

Research Department in Social Pediatrics and Obstetrics

VLAICU Brigitha, “Victor Babes” University of Medicine and Pharmacy Timisoara, Romania

Department 14, Center for Preventive Medicine Studies

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Published
2021-03-30
Section
PREVENTIVE MEDICINE - LABORATORY