J Huazhong Univ Sci Technol［Med Sci］ 29 (2): 260-264, 2009 DOI 10.1007/s11596-009-0226-x J Huazhong Univ Sci Technol［Med Sci］ 29 (2): 2009

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The Univariate and Bivariate Impact of HIV/AIDS on the Quality of Life: A Cross Sectional Study in the Hubei Province-Central China Ommari Baaliy MKANGARA1, 2, 6#, Chongjian WANG (王重建)1, 2, Hao XIANG (向 浩)1, 2, Yihua XU (许奕华)1, 2, Shaofa NIE (聂绍发)1, 2#, Li LIU (刘 丽)1, 2, Saumu Tobbi MWERI3, Mustaafa BAPUMIIA4, Theresia M KOBELO5, Felicia Williams JACKSON6 1 Department of Epidemiology and Biostatistics, School of Public Health, 2MOE Key Laboratory of Environment and Health, School of Public Health, 3Department of Pediatric Cardiovascular Disease, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan 430030, China 4 Department of Cardiovascular Disease, Agakhan Hospital, Dar-es-salaam, Tanzania 5 Department of Internal Medicine, Saint Francis Hospital, Ifakara Medical College, Morogoro, Tanzania 6 Hondros College, School of Nursing, 4140 Executive parkway, Westerville, Ohio, USA

Summary：This study is aimed to evaluate the quality of life (QOL) for individuals living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) in Hubei province -central China by using WHOQOL-BREF instrument (Chinese version). One hundred and thirty six respondents (HIV/AIDS individuals) attending out-patient department of Chinese Center for Disease Control and Prevention (Chinese CDC) were administered a structured questionnaire developed by investigators. QOL was evaluated by using WHOQOL-BREF instrument (Chinese version). The results showed that the mean score of overall QOL on a scale of 0–100 was 25.8. The mean scores in 4 domains of QOL on a scale of 0–100 were 82.9 (social domain), 27.5 (psychological domain), 17.7 (physical domain) and 11.65 (environmental domain). The significant difference of QOL was noted in the score of physical domain between asymptomatic (14.6) and early symptomatic individuals (12) (P=0.014), and between patients with early symptoms (12) and those with AIDS (10.43) (P<0.001). QOL in psychological domain was significantly lower in early symptomatic (12.1) (P<0.05) and AIDS patients (12.4) (P<0.006) than in asymptomatic individuals (14.2). The difference in QOL scores in the psychological domain was significant with respect to the income of patients (P<0.048) and educational status (P<0.037). Significantly better QOL scores in the physical domain (P<0.040) and environmental domain (P<0.017) were noted with respect to the occupation of the patients. Patients with family support had better QOL scores in environmental domain. In our research, QOL for HIV/AIDS individuals was associated with education, occupation, income, family support and clinical categories of the patients. It was concluded that WHOQOL-BREF Chinese version was successfully used in the evaluation of QOL of HIV/AIDS individuals in Chinese population and proved to be a reliable and useful tool. Key words：AIDS; bivariate, central China, HIV, impact, univariate, WHOQOL-Bref Chinese version

Due to the increased number of individuals with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) in China, with an estimated prevalence between 2.5% to 6.5%, and low antiretroviral drug scale-up for HIV/AIDS individuals, fundamental issues like the quality of life (QOL) in those individuals have emerged in the mainland China. Determining the impact on the QOL is utmost important for the projection of the burden of the disease. This is definitely correct because HIV/AIDS has a chronic debilitating course and the long-term side effects of current treatment modalities are uncertain. The social stigma associated with the proclamation of HIV sero-positivity may at times force the individual to Ommari Baaliy MKANGARA, MD, DrPH , Ph.D E-mail: [email protected] # Corresponding author

change the place of living and the job, thereby bringing up further pressure on their already weak economic situation. This leads to further worsening of health, repeated hospital/clinic visits, medical consultation, low morale, absence from work, low productivity and harsher environments including poor infrastructures, poor transportation to and from clinic or hospital where they can get healthcare, and high cost of healthcare. All these make a vicious cycle that goes on and leads to economic vulnerability and social sequestration that had adverse impact on the quality of life for HIV/AIDS individuals and their family. QOL is a representative term that refers to people’s social, physical and emotional well-being, and their ability to function in ordinary tasks of living. Previous researches described QOL as a “fighting spirit” associated with longer survival time for individuals[1–3]. QOL is conceptualized in terms of “an absence of pain or an ability to function in day-to-day life”[4]. QOL relates both

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to adequacy of material circumstances and to personal feelings about these circumstances. It includes ‘‘overall subjective feelings of well being that are closely related to morale, happiness and satisfaction”[5]. There is a lack of clarity in defining QOL and concomitant operational difficulties in it[6]. But there is urgency in evaluating the QOL in HIV-infected Individuals. Since 1989, increasing health-related QOL instruments have been used in research on HIV-infected individuals, which described relationships of HRQOL and HIV status, level of symptoms, uses of antiretroviral drugs and use of drugs for prophylaxis of opportunistic infections separately[7]. As health status is generally cited as one of the most important determinants of overall QOL, it has been suggested that QOL may be uniquely affected by some specific disease processes such as AIDS[8, 9]. QOL is a multidimensional concept whose definition and assessment remains controversial[10]. This study analyzed the QOL for individuals living with HIV/AIDS from Chinese Center for Disease Control and Prevention (CDC of China), based in Hubei Province, China. 1 MATERIALS AND METHODS 1.1 Materials One hundred and thirty six HIV/AIDS patients visiting the community-based Chinese CDC clinic located in Hubei Province of central China were enrolled in the cross-sectional study. The instruments used included structured questionnaire and WHOQOL-BREF (Chinese version). 1.2 Methods The respondents were evaluated according to a pre-designed protocol. The patients were administered a structured questionnaire developed by the investigators. The patients filled out an additional questionnaire concerning their socio-demographic profile. Informed written consent was obtained from all the respondents and secured. There were no patients on antiretroviral drugs during enrollment in the study. QOL was assessed by using a WHOQOL-BREF instrument[11]. The WHOQOL-BREF consisted of 26 items, with each item being measured on a 5-point scale. These items were distributed in 4 domains. The 4 domains of QOL included: (1) psychological well-being (eight items assessing such areas as effect of both positive and negative self-concept, higher cognitive functions, body image and spirituality), (2) social relationships (three items assessing such areas as social contact, family support, and ability to look after family, sexual activity), (3) physical health and level of independence (seven items assessing such areas as presence of pain and discomfort, dependence on substance or treatments, energy and fatigue, mobility, sleep and rest, activities of daily living, perceived working capacity) and (4) environment (eight items assessing such areas as freedom, quality of home environment, physical safety and security and financial status, involvement in recreational activity, health and social care, quality and accessibility). There other two items that were examined independently, including the one that asked about the individual’s overall perception of QOL and the other that inquired about the individual’s overall

perception of his or her health. Domain scores were scaled in a positive direction where the higher scores connote higher QOL. The mean score of the items within each domain was used to calculate the domain scores in line with the scores used in WHOQOL-100 and subsequently transformed to a 0–100 scale by using the following formulas: Scores = (Actual domain score)–(Lowest possible domain score)×100/(Possible domain score range) Overall scores could range from 28 as minimum to 140 as maximum, with a higher scores indicating better QOL. In contrast to many other QOL instruments, WHOQOL includes a domain on environment. This is considered indispensable as environment plays a major role in determining health status, mediating disease pathogenesis and limiting or facilitating access to health care. Like all other domains in WHOQOL, environment domain, is also assessed by a subjective self-report with the underlying belief that even if subjective reports are at a variance with objective reality, it is the former that determines the quality of life. WHOQOL-BREF, a generic instrument, could be used in general population to assess a wide range of domains applicable to a variety of health states, conditions and diseases[12, 13]. WHOQOL-BREF (Chinese version) produces an aggregate score and 4 domain scores instead of individual facet scores[14]. Domain scores produced by the WHOQOL-BREF have been shown to correlate at around 0.9 with the WHOQOL-100 domain scores, and hence provide an excellent alternative to the assessment of domain profile using WHOQOL-100. The WHOQOL-BREF scale is useful in busy clinics and wards since it takes only 5–8 min to be completed[15]. 1.3 Statistical Analysis Statistical analysis was performed by using statistical analysis software SPSS version 10.0. One-way analysis of variance (ANOVA) was performed for evaluating the significance difference between domain scores and clinical categories. The descriptive variables such as mean, median, standard deviations were used. Consistency was calculated for the 4 domains in WHOQOL-BREF (Chinese version). Post-hoc analysis was performed using Tukey’s test to find out the pairs that contributed to the difference. Inter-domain correlation coefficient between 6 possible pairs of the four domains was calculated. Univariate and bivariate analyses were performed. 2 RESULTS 2.1 General Results Of the 136 patients included in the study, 88.2% were female. The age of the patients ranged from18 to 55 years with a mean age of 31.5 y old. About 67.6% of the respondents were married, 14.7% unmarried, and 8.8% separated. The majority (87.7%) of the patients reported that they had family support. The mean income of the group of respondents was less than RMB 800 Yuan (Chinese currency), which was less than 100 US dollars (USD) per month. One third of the respondents were educated up to high school (33%). Heterosexual transmission was found to be the most

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common among the participants. Majority of the patients (53.6%) were in the category B (CD4: 200–499 cells/mL) while the rest of the patients belonged to the clinical category C (46.3%), namely, AIDS-indicator illness, according to the American CDC classification. Tuberculosis (38.5%) was the most common HIV-related illness, followed by oral candidiasis (28.2%) and then persistent diarrhea (17.9%). The socio-demographic and illness-related profiles of the patients are depicted in table 1.

Table 1 Data of the study participants Items Total number of patients Mean age Median income/month (in USD) Sex Female Male Occupation (n=136) Skilled labor Unskilled labor Services Business Housewife Unemployed Marital status Married Unmarried Married but not living together Legally separated Widow/Widower Divorced Education (n=136) High school graduate College graduate and postgraduate Family support Unsupported Supported HIV transmission category Heterosexual intercourse Homosexual intercourse Transfusion recipients i.v. drug abuse Others Clinical category Asymptomatic Early symptomatic AIDS-related illness CD4 Count (cells/mL) < 200 200–499 500/>500 Income in Yuan (n=136)

Values 136 31 < 100 88.2% 11.8% 24 (17.6%) 20 (14.7%) 20 (14.7%) 14 (10.3%) 29 (21.35%) 29 (21.35%) 92 (67.6%) 20 (14.7%) 12 (8.8%) 8 (5.9%) 2 (1.5%) 2 (1.5%) 92 (67.6%) 44 (32.4%) 18 (12.3%) 118 (87.7%) 98 (71.7%) 0 (0.0%) 18 (13.3%) 20 (15.0%) 0 (0.0%) 36 (25.9%) 38 (27.8%) 62 (46.3%) 62 (46.3%) 74 (53.7%) 0 (0.0%) 800–1600

2.2 The Scores of Each Domain The mean score was highest for the social domain in the 4 domains of QOL, which was followed by the psychological domain, physical domain and the environmental domain in gravitating or cascading sequence. The internal consistency between the 4 domains of the WHOQOL-BREF instrument was found to be significant (as Chronbach’s α=0.91). The inter-domain correlation was found to be indubitably cogent, between all pairs of the 4 domains by using two tailed test at P<0.001 and Pearson coefficient varied between +0.52 to +0.71 between the domain pairs. QOL domain scores are outlined in table 2. 2.3 Comparisons between Domain Scores and Clinical Categories Psychological and physical domain scores showed significant aberrations in different clinical categories of HIV patients. Nevertheless, no significant difference was found in environmental and social domains among the three clinical categories. The results from ANOVA comparing domain scores and clinical categories are detailed in table 3. A significant difference in QOL of psychological domain scores was observed between respondents educated to high school and those with education more than high school (P=0.037). Nevertheless, in physical domain (P=0.358), social domain (P=0.053), and environmental domain (P=0.573), there was no significant difference in QOL among respondents from different levels of education. Hence, level of education of HIV-infected individual had a significant effect on psychological domain. A significant difference was detected in the income of the respondents in the psychological domain (P=0.048). Notwithstanding, there was no significant difference in QOL in terms of the social, physical, and environmental domains among subjects at different levels of income. The relationships between the scores of domains of WHOQOL-BREF and those of income were evaluated by using Pearson’s correlation coefficient and no significant co-relations were found. In terms of family support for the patients, a significant difference existed in the environmental domain. Nonetheless, there was no significant difference among the respondents in the physical, psychological and social domains. No significant difference was found with the respect to the CD4 count in either domain. A significant difference was identified in the occupation of the respondents of the physical domain (P=0.04) and environment domain (P=0.02). The significant difference in quality of life in terms of physical domain scores was found between the category of business community and that of skilled workers (P=0.02). Furthermore, in environmental domain, a significant difference of QOL was detected between the skilled workers and businesspersons (P=0.03). This might be attributed to the job security maintained and enjoyed by the businesspersons as compared to the skilled workers.

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Table 2 Domain scores for QOL Domains of Raw score Social Psychology Physical Environment Total Score

Minimum possible raw score 3 6 7 8 24

Maximum possible raw score 15 30 35 40 120

Mean of raw score 12.71 12.60 11.96 11.73 48.83

SD of raw score 3.67 3.14 3.15 2.88 11.18

Score translated on a scale of 100 80.9 27.5 17.7 11.65 25.8

Range 4.0–18.67 6.4–18 7.0–17.71 8.1–17.0 25.5–71.38

Table 3 One way ANOVA between clinical categories and domain scores Domain for QOL Physical Psychology Social Environment

Asymptomatic (1)

Symptomatic but without AIDS (2)

AIDS (3)

P between 1 and 2

P between 2 and 3

P between 1 and 3

14.65 14.16 13.53 12.55

12.0 12.1 11.9 11.6

10.43 12.4 13.1 11.9

P=0.014 P=0.05 NS NS

P<0.001 P=0.006 NS NS

NS NS NS NS

NS: not significant

3 DISCUSSION QOL is defined by the WHO as “individual’s perception of their position in life context of the culture and value system in which they live and in relation to their goals, expectations, standards and concerns”. QOL is generally deemed as a concept that is too ambiguous to be measured methodically with a structured questionnaire and is contingent to too much variability across cultures and individuals to have any useful validity. Nevertheless, WHOQOL questionnaire developed in the WHOQOL project demonstrated that QOL could be conceptualized and defined in a uniform way across cultures. Its core domains and facets can be evaluated by using structured questionnaire investigation, and cross-cultural as well as intra-cultural comparisons can be made. WHOQOL-Chinese is available in two versions, the short version or BREF-26 item version (WHOQOL BREF-Chinese) and the long-100 item versions (WHOQOL-100, Chinese). Shorter version is widely used in busy clinics while longer version evaluates QOL comprehensively. In our research, the mean score was higher for social domain as compared to the other three domains of QOL. Social domain evaluates social support, sexual activity and personal relationships. The insignificant association on the social domain in this research is in contrast with an earlier study comparing the QOL in asymptomatic and symptomatic HIV-infected individuals[16]. The factors found to have significant influence on the physical health domain were the occupation of individual and clinical categories. The physical health domain appraises the aspects of the disease in terms of daily living, deprivation of energy and enthusiasm, prolonged dependence on medication, confined mobility and the ability to work. As anticipated, significant difference of quality of life was observed in the physical health domain scores between patients in the clinical categories such as asymptomatic, early symptomatic and with AIDS related illness.. It emulates the impact of HIV/AIDS on physical health of the patients as the disease process takes momentum. Business individuals or business

community and skilled workers or middle class community had better physical health domain scores as compared to others, demonstrating that individuals with better occupation may have better physical health. This has been recognized by earlier researches, that higher levels of symptoms were associated with lower QOL[5, 9, 15]. We believe that there is a definite need for access to anti-retroviral drugs for all symptomatic patients because of their ability to slow the morbidity and better individual’s physical domain score . The psychological domain evaluates the patient’s appearance and their own notions about body image, personal beliefs, self-esteem, negative feelings, and positive feelings. Clinical categories, education and income of patients were found to significantly influence the psychological domain of QOL. The observation of significant difference in the psychological domain in correlation to the educational level above high school possibly proposes better coping sentiments (coping attitudes) towards disease. Comparatively, higher income of the individuals may direct towards higher coping ability. Lower psychological domain scores in progressive disease probably are the emulation or reflection of negative sentiments toward life and increased morbidity. Previous studies did not compare the impact of education on the QOL in a patient suffering from HIV/AIDS. People in developing countries especially in the rural areas are less educated and continue to have low income. Disease morbidity frequently results in the worsening of psychological domain of QOL. Consequently lowering morbidity by easy access to antiretroviral may help in meliorate patients psychological domain of QOL. Environment plays a major role in determining health states. Environmental domain evaluates factors such as freedom, the nature of working environment, financial resources, participation and opportunities for leisure activities on the QOL, availability to social and health care, and security. In our research environment domain had the minimum score. Occupation and family support incomparably overwhelmed the environmental domain of quality of life in our rural and urban HIV patients. The good family support on the environmental

264 domain is a significant observation. Family is the utmost essential component of the immediate environment of the patient. The family of the patient can be a major supportive hub, in terms of not only moral support, but also safety and financial support. Admirable and supportive home environment can elevate patient mood and help the patient feel better. Furthermore, business individuals and skilled workers had better scores in environment domain scores. Therefore, we believe improving the all round environment surrounding of HIV infected individuals will lead to better QOL. As shown in previous studies treatment has been found to improve the QOL of patients [17] . In our research there were no patients on antiretroviral drugs at the time of enrollment in the study. Free drugs through special government program called “Four Frees and One Care” for the citizens can be a plus in improving their QOL in the mainland China but low scale-up is a major concern[18]. In summary, in our research, income, clinical categories and education of the patients significantly affected psychological domain scores. The physical health domain scores, occupation and family support significantly affected the environment domain scores. Social domain had the maximum mean domain score and was not significantly associated with any of the determinants. Finally we came to the conclusion that the sample size of our research was relatively small and low male representation was major shortcomings of our study, as males made up 11.8 percent of the study samples. We also predict that the number of male symptomatic patients may increase as the disease takes its toll and more males expose to healthcare as they will seek healthcare assistance. In this research, QOL was found to be dictated by income, clinical categories of the patients, family support, education and occupation. Family support and occupation provides better environment to people living with HIV/AIDS. Individuals educated to high school or higher have greater probability of possessing better psychological ability to cope with disease. Asymptomatic individuals or patients were found to have a better physical health status or physical domain, and patients or individuals educated to high school or higher have greater psychological abilities to cope with the disease or infection. Future studies should evaluate more variables or determinants of quality of life in HIV/AIDS. Patients on antiretroviral agents should be included so that the efficacy and outcome of antiretroviral medications and its role on QOL for HIV/AIDS individuals can be accounted. Free Access to health care and antiretroviral medication should be effectively implemented in all areas in mainland China as they may improve QOL and lower morbidity. WHOQOL-BREF Chinese version can be successfully used to measure QOL for HIV/AIDS individuals in Chinese population and proved to be a reliable and useful tool. REFERENCES 1 Lesserman J, Perkins DO, Evans DL. Coping with the threat of AIDS: the role of social support. Am J Psychiatr, 1992,149:1514-1520

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