Quantifying quality of life and disability of patients with advanced schistosomiasis japonica

BACKGROUND: The Chinese government lists advanced schistosomiasis as a leading healthcare priority due to its serious health and economic impacts, yet it has not been included in the estimates of schistosomiasis burden in the Global Burden of Disease (GBD) study. Therefore, the quality of life and disability weight (DW) for the advanced cases of schistosomiasis japonica have to be taken into account in the re-estimation of burden of disease due to schistosomiasis. METHODOLOGY/PRINCIPAL FINDINGS: A patient-based quality-of-life evaluation was performed for advanced schistosomiasis japonica. Suspected or officially registered advanced cases in a Schistosoma japonicum-hyperendemic county of the People's Republic of China (P.R. China) were screened using a short questionnaire and physical examination. Disability and morbidity were assessed in confirmed cases, using the European quality of life questionnaire with an additional cognitive dimension (known as the 'EQ-5D plus'), ultrasonography, and laboratory testing. The age-specific DW of advanced schistosomiasis japonica was estimated based on patients' self-rated health scores on the visual analogue scale of the questionnaire. The relationships between health status, morbidity and DW were explored using multivariate regression models. Of 506 candidates, 215 cases were confirmed as advanced schistosomiasis japonica and evaluated. Most of the patients reported impairments in at least one health dimension, such as pain or discomfort (90.7%), usual activities (87.9%), and anxiety or depression (80.9%). The overall DW was 0.447, and age-specific DWs ranged from 0.378 among individuals aged 30-44 years to 0.510 among the elderly aged </=60 years. DWs are positively associated with loss of work capacity, psychological abnormality, ascites, and active hepatitis B virus, while splenectomy and high albumin were protective factors for quality of life. CONCLUSIONS/SIGNIFICANCE: These patient-preference disability estimates could provide updated data for a revision of the GBD, as well as for evidence-based decision-making in P.R. China's national schistosomiasis control program