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1.
Liver Int ; 43(3): 639-648, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36328957

RESUMO

BACKGROUND & AIMS: Primary sclerosing cholangitis (PSC) is a progressive, cholestatic liver disease which greatly impacts the lives of individuals. Burden of disease due to shortened life expectancy and impaired quality of life is ill-described. The aim of this study was to assess long-term disease burden in a large population-based registry with regard to survival, clinical course, quality adjusted life years (QALYs), medical consumption and work productivity loss. METHODS: All PSC patients living in a geographically defined area covering ~50% of the Netherlands were included, together with patients from the three liver transplant centres. Survival was estimated by competing risk analysis. Proportional shortfall of QALYs during disease course was measured relative to a matched reference cohort using validated questionnaires. Work productivity loss and medical consumption were evaluated over time. RESULTS: A total of 1208 patients were included with a median follow-up of 11.2 year. Median liver transplant-free survival was 21.0 years. Proportional shortfall of QALYs increased to 48% >25 years after diagnosis. Patients had on average 12.4 hospital contact days among which 3.17 admission days per year, annual medical costs were €12 169 and mean work productivity loss was 25%. CONCLUSIONS: Our data quantify for the first time disease burden in terms of QALYs lost, clinical events, medical consumption, costs as well as work productivity loss, and show that all these are substantial and increase over time.


Assuntos
Colangite Esclerosante , Humanos , Seguimentos , Qualidade de Vida , Países Baixos , Efeitos Psicossociais da Doença
2.
Transpl Int ; 31(6): 590-599, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29150966

RESUMO

Studies from the USA and Nordic countries indicate primary sclerosing cholangitis (PSC) patients have low mortality on the liver transplantation (LTx) waiting list. However, this may vary among geographical areas. Therefore, we compared waiting list mortality and post-transplant survival between laboratory model for end-stage liver disease (LM) and MELD exception (ME)-prioritized PSC and non-PSC candidates in a nationwide study in the Netherlands. A retrospective analysis of patients waitlisted from 2006 to 2013 was conducted. A total of 852 candidates (146 PSC) were waitlisted of whom 609 (71.5%) underwent LTx and 159 (18.7%) died before transplantation. None of the ME PSC patients died, and they had a higher probability of LTx than LM PSC [HR obtained by considering ME as a time-dependent covariate (HRME 9.86; 95% CI 6.14-15.85)] and ME non-PSC patients (HRME 4.60; 95% CI 3.78-5.61). After liver transplantation, PSC patients alive at 3 years of follow-up had a higher probability of relisting than non-PSC patients (HR 7.94; 95% CI 1.98-31.85) but a significantly lower mortality (HR 0.51; 95% CI 0.27-0.95). In conclusion, current LTx prioritization advantages PSC patients on the LTx waiting list. Receiving ME points is strongly associated with timely LTx.


Assuntos
Colangite Esclerosante/cirurgia , Política de Saúde , Falência Hepática/cirurgia , Transplante de Fígado/métodos , Obtenção de Tecidos e Órgãos/métodos , Listas de Espera , Adulto , Feminino , Sobrevivência de Enxerto , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Probabilidade , Estudos Retrospectivos , Medição de Risco , Fatores de Tempo , Doadores de Tecidos
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