The Study On Disease Burden Of Advanced Schistosomiasis And The Quality Of Life Of Patients

Schistosomiasis is one of the most important parasitic diseases which not only threatening the health of people but also hindering the social economic development in endemic areas. Advanced schistosomiasis characterized by periportal hepatic fibrosis, spleen enlargement and congestion and portal hypertension is the late stage of the disease. Because of the long-term course of disease, poor therapeutic effects and high medical expenditure, patients suffering from advanced schistosomiasis usually bear multiple burdens and their quality of life is lower significantly. Nowadays, the studies evaluating the disease burden caused by schistosomiasis are mostly confined by the measurements of DALY, among which the controversial disability weight (DW) published by Global Burden of Disease (GBD) Program in 1996 is one of focal points. However, there are few researches referring to the family and social burden of the disease. In order to provide scientific basis for the control and assistance approach for advanced schistosomiasis in China, our study was designed to evaluate the disease burden and the quality of life of patients in an advanced stage comprehensively.Firstly, the quality of life of patients with advanced schistosomiasis was studied. Secondly, the burden of the disease was investigated at three levels, namely patient population, family and society. Two study sites were located in Hanshou County of Hunan Province and Jiangling County of Hubei Province along the middle and lower reaches of Yangtze River, respectively. Among the all 223 patients registered in 2007 in Hanshou County, 203 cases distributed in 122 villages were included in survey. 124 out of 480 patients that registered in 2007 in Jiangling County were selected from 40 villages to enter the survey by clustering sampling. Meanwhile, the population of control group with the total number of 326 was determined according a ratio of 1:1. In addition, there were 318 family members of patients participated in the survey of family burden. As to the social burden survey, the 326 patients and their controls mentioned above along with 162 village cadres were engaged in.In the quality of life study, a Chinese version of SF-36 scale was applied as the evaluation tool of health. Firstly, the reliability, validity and responsiveness of SF-36 in advanced schistosomiasis were tested. Then the scores of SF-36 between patients and controls were compared to each other. Finally, the factors influencing the total score of SF-36 were screened by a multiple stepwise regression analysis. Results indicated that the split-half reliability (with a split-half coefficient of 0.954) and the internal consistency (Cronbach'a coefficients of the eight dimensions ranged from 0.863 to 0.875) were pretty good; the convergent and discriminative validity were high with the test success rates of 97.14% and 87.86%, respectively; the criterion validity was acceptable with a correlation coefficient between the total score of SF-36 and EQ-5D+C VAS score of 0.695. However, the construct validity seemed to be not so reasonable as only 2 dimensions out of 8 were completely in accordance with the theoretical model on factor loading. The responsiveness was satisfying as the percentages of floor effect and ceiling effect in most dimensions were lower than 17% except RP and RE (with the percentages of floor effect of 50.31% and 48.16%, respectively). Comparing to the controls, scores in all dimensions of patients who were advanced schistosomiasis were significantly lower. The impact factors on the quality of life of patients related to 11 aspects, including patients' age and educational level, epidemic coefficient of the endemic areas, the symptoms of anorexia, palpitation, abdominal distension, abdominal pain and bloody stool, splenic vein exposure, the degree of working capacity loss and clinical types.At the patient population level, the DW of advanced schistosomiasis was assessed. Above all, the EQ-5D+C VAS scores were obtained through questionnaire. As the following, DW was calculated using a corresponding formula. At last, a multiple stepwise regression analysis was used to screen the impact factors of DW. It suggested that the DW of advanced schistosomiasis in areas along the middle and lower reaches of Yangtze River ranged from 0.394 to 0.492. And its impact factors were as follows: the age of patients, the symptoms of anorexia, palpitation, abdominal distension and abdominal pain, the physical sign of ascites and splenic vein exposure.At the family level, the Family Burden Scale (FBS) was applied to estimate family burdens of the patients' families. Firstly, the reliability, validity and responsiveness of FBS were verified. Secondly, the scores of all dimensions were calculated and analyzed. Thirdly, the impact factors on the total score of FBS were determined using a multiple stepwise regression analysis. It was shown that the split-half reliability (the split-half coefficient was 0.930) and the internal consistency of FBS (Cronbach'αcoefficients of the 6 dimensions ranged from 0.691 to 0.734) were high. The convergent and discriminative validity were both satisfying with the successful rate of tests of 100% and 97.22%, respectively. The construct validity was much reasonable as all items were contributed to the corresponding common factors expect the first one in the "economic burden" dimension. The responsiveness of FBS was good as all the percentages of floor effect were below 27% except two dimensions namely physical and mental health of family members with the percentages of 60.06% and 47.16%, respectively; and there were none ceiling effect among all the dimensions. The analysis of scores indicated that there were multiple burdens at different degrees existing in all aspects of the patients' families, among them the burden on family economy was the heaviest one. The impact factors of the total score of FBS including family per capita income, the balance of income and expense and the epidemic coefficient of the endemic areas.At society level, the establishment of the evaluation index system of social burden caused by advanced schistosomiasis and their application in field survey were carried out step by step. Firsly, the primary and secondary indices and their weight coefficients were determined through literature review, brainstorming and Delphi method. Secondly, the items of the questionnaires were established according to the secondary indices. Finally, the questionnaire survey was carried out in the total 162 villages in the two counties. Meanwhile, the in-depth interviews with 6 managers who participated in the advanced schistosomiasis control at county level were conducted. The results showed that the evaluation index system of social burden caused by advanced schistosomiasis can be consisted of 4 primary indices and 16 secondary indices. According to the significance, the 4 primary indices coule be arranged as social economy, government image, public psychology and social security. Among all the secondary indices, "funds for schistosomiasis control from central and local government" in "social economic" had the largest weight coefficient (14.063) while that of "equity to patients" in "government image" was the smallest (3.125). In the questionnaire survey, 66.05% of the village cadres thought advanced schistosomiasis influenced the per capital income of village in varying degrees, and 56.17% of them believed that the disease had some impact on employment in village. Above 80% of the villagers and village cadres considered advanced schistosomiasis had little influence on the 3 aspects of social security mentioned in our questionnaire. 26.07% of the villagers said advanced schistosomiasis had certain effect on their psychological states. As to the assistance strategy, the average amount of the money that each patient obtained from the assistance in 2007 was 4100 Yuan, and the satisfaction degree in all sides were above 85%. Nevertheless, 76.99% of the patients in survey still had certain aspects of demands that were urgent to be solved besides the assistance at present. The result from the in-depth interview showed the disease affected the local society in all the 4 respects mentioned above.Overall, the conclusions derived from our studies can be summarized as follows: 1) It is appropriate for us to use SF-36 in patients with advanced schistosomiasis, but some items need to be improved according to local settings of endemic areas. 2) The quality of life of patients with advanced schistosomiasis reduces significantly in both physical and psychological aspects. Therefor, it is necessary to specially provide the services on the psychological nursing to patients in addition to the clinical treatment. 3) The DW of advanced schistosomiasis in areas along the middle and lower reaches of Yangtze River is ranged from 0.394 to 0.492, which is obviously higher than that assessed in GDB with a value ranged from 0.005-0.006 only. 4) FBS is a reliable and valid measure to estimate the family burden of patients with advanced schistosomiasis. 5) There are multiple burdens exiting in patients' family with economic burden is the most serious one. It is implied that other departments and communities can be combined to support the patients' families together and the recovery of the family function deserves attention, too. 6) Advanced schistosomiasis has certain impact on the local society. To reduce the social burden, it mostly depends on the concerns from the government and the effective performance of the control programme as well as the appropriate improvement and implementation of the assistance approaches.