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. Author Summary: Advanced schistosomiasis japonica, an extreme form of chronic schistosomiasis that occurs in Asia, is more serious than the advanced hepatosplenic disease of schistosomiasis encountered in Africa and the Americas. The advanced schistosomiasis japonica is a chronic disabling condition associated with portal hypertension, splenomegaly, ascites, and gastro-oesophageal variceal bleeding, or with severe growth retardation or granulomatous disease of the large intestine. However, the actual disability caused by advanced schistosomiasis japonica is unknown. We carried out a patient-based quality-of-life evaluation employing a standardized and widely used questionnaire (known as "EQ-5D plus"), coupled with ultrasonography and laboratory tests on advanced schistosomiasis japonica cases in a hyperendemic area of China. Among 215 confirmed cases of advanced schistosomiasis japonica, we found an overall disability weight of 0.447 with age-specific weights ranging from 0.378 to 0.510. Importantly, advanced schistosomiasis japonica is not only associated with heavy disability weights, but also with high morbidity and poor self-reported quality of life. Our results provide valuable data for the current revision of the Global Burden of Disease (GBD) study, as well as for evidence-based decision-making in China's national schistosomiasis control program. [ABSTRACT FROM AUTHOR]