RESUMO
OBJECTIVE: The aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with juvenile idiopathic arthritis (JIA) in Europe. METHODS: We conducted a cross-sectional study of patients with JIA from Germany, Italy, Spain, France, the United Kingdom, Bulgaria, and Sweden. Data on demographic characteristics, healthcare resource utilization, informal care, labor productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D-5L) questionnaire. RESULTS: A total of 162 patients (67 Germany, 34 Sweden, 33 Italy, 23 United Kingdom, 4 France, and 1 Bulgaria) completed the questionnaire. Excluding Bulgarian results, due to small sample size, country-specific annual health care costs ranged from 18,913 to 36,396 (reference year: 2012). Estimated direct healthcare costs ranged from 11,068 to 22,138; direct non-healthcare costs ranged from 7837 to 14,155 and labor productivity losses ranged from 0 to 8715. Costs are also shown to differ between children and adults. The mean EQ-5D index score for JIA patients was estimated at between 0.44 and 0.88, and the mean EQ-5D visual analogue scale score was estimated at between 62 and 79. CONCLUSIONS: JIA patients incur considerable societal costs and experience substantial deterioration in HRQOL in some countries. Compared with previous studies, our results show a remarkable increase in annual healthcare costs for JIA patients. Reasons for the increase are the inclusion of non-professional caregiver costs, a wider use of biologics, and longer hospital stays.
Assuntos
Artrite Juvenil/economia , Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde , Qualidade de Vida , Adolescente , Adulto , Artrite Juvenil/psicologia , Cuidadores , Criança , Pré-Escolar , Estudos Transversais , Europa (Continente) , Feminino , Custos de Cuidados de Saúde/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Assistência ao Paciente/economia , Licença Médica/economia , Perfil de Impacto da Doença , Fatores Socioeconômicos , Inquéritos e Questionários , Reino Unido , Adulto JovemRESUMO
The success, despite the problems, of academic/industrial collaborations over the past decade owes much to the profit motive. However, market-driven research and development has little to offer patients in the less-developed world. Some flexibility has already been demonstrated on drugs for orphan (rare or under-researched) diseases. Many diseases in less-developed countries are not rare. Academic researchers should be encouraging the establishment of funding for basic and clinical research that is directed at patients' needs in the less-developed world and that is independent of a commercial ethos.