| Objectives:The longitudinal study consists of a one year observational cohort of adults living with HIV/AIDS initiating ART, which examines changes at6month and12month time intervals on patients enrolled in relation to health-related quality of life (QOL) and further assesses related influencing factors on QOL, in order to provide evidence for further improvement of the effectiveness of ART program in contributing to better QOL.Method:A one-year observational cohort was set up for adult people living with HIV/AIDS (PLHA) initiating ART from five ART clinics in Guangxi Autonomous Region and, both quantitative and qualitative research methodologies were used in the study. Quality of life data was obtained through face-to-face interviews using the standardized WHOQOL-HIV BREF instrument which provides9quality of life scores including6domain scores (physical, psychological, level of independence, social relationships, environment and spirituality), two health perception scores, and an overall QOL score constructed using the8previous sub-scales. All scores range between4to20, and other information on potential influencing factors was collected at initiation of ART (baseline),6and12months respectively. About one year after the baseline survey,20participants who had already completed the12month follow up survey were selected to participate in qualitative in-depth interviews to further understand detailed information on changes in quality of life and the underlying reasons.Results:1. General Information of Subjects:During May2007and May2008, a total of332study subjects were recruited and the12-month follow up survey was completed by May2009. 267(80.4%) and260(78.3%) participants finished the6-month and the12-month follow up surveys, respectively. Of the baseline participants,226(68.1%) were male and106(31.9%) were female; The average age was39.6years (range20.2-76.5);110participants had a primary school education or less, accounting for33.2%of the cohort;150participants (45.3%) had a secondary school education; and71(21.5%) had a high middle school education or above;218(65.7%) were married or cohabitating;114(34.3%) were unmarried and not cohabitating; The majority of participants (198,60.2%) were former or unemployed and131(39.8%) were employed;197(75.8%) participants self-reported being HIV-infected through heterosexual transmission, while15.4%(40) reported infection through injecting drug use and8.8%(23) reported infection by other means. Fifty-six (21.5%) persons thought that they were infected by their spouses.2. Quality of Life Score:At the baseline assessment, average participant QOL scores were:overall perception on QOL11.3, overall perception on health10.3, physical12.5, psychological11.3, level of independence11.6, social relationships11.4, environment11.4, spirituality12.0, overall QOL score11.5; At the6-month survey quality of life scores were:overall perception on quality of life12.6, overall perception on health12.9, physical14.4, psychological13.1, level of independence13.6, social relationships12, environment12.4, spirituality13.1, overall QOL score13.0. All the scores were significantly higher at the6-month survey than that at the baseline survey; At the12-month survey quality of life scores were:overall perception on quality of life12.6, overall perception on health13, physical14.2, psychological12.8, level of independence13.7, social relationships11.6, environment12, spirituality12.9, overall QOL score12.8. Except for social relationships, all other scores were significantly higher at the12-month follow-up assessment than that at baseline survey. Psychological, social relationships and environment scores were significantly lower at the12-months survey than that at the6-month survey.3. Factors influencing quality of life:A total of46potential factors influencing quality of life were explored and were divided into seven groups including:social and cultural factors (10factors), clinical and physical factors (7factors), treatment and HIV infection-related factors (5factors), behavioral factors (3factors), family-related factors (11factors), friends-related factors (4factors), and social support factors (6factors). Family-related factors influenced the greatest number of quality of life scores. The next two were treatment and HIV infection-related factors, clinical and physical factors, followed by friend-related factors and social support factors; the final two were behavioral factors, social and cultural factors.During single factor analysis the factors associated with higher quality of life scores include:higher education level, being employed, having a higher household monthly average income, marriage or cohabitation, infection through "other" transmission routes (non-sexual and non-injecting drugs), shorter time needed for travelling to the ART clinic, higher Body Mass Index, higher Karnofsky Performance Scale, higher total lymphocyte counts, fewer drug adverse events during the past six month, shorter time after the patients knew their HIV-positive status, higher knowledge on HIV/AIDS treatment, not being infected by spouse, did not miss ARV pills during the last7days, patient did not think it is hard to take ARV drugs every day, did not have an alcoholic drink in the past30days, had sex in the past six months, disclosed HIV+status to family, the patient was (very)satisfied with the decision to disclose HIV+status to family, family provided encouragement/psychological support, family provided financial support, higher frequency of family reminders to take ARV, patient was (very)satisfied with family support, did not feel discrimination from family, patients did not find themselves not visiting family because patients thought they would not be welcomed, patient has not feared to be abandoned by family, disclosed HIV positive status to friends, the patient was (very)satisfied with the decision to disclose HIV+status to friends, did not feel discrimination from friends, patients have not found themselves not visiting friends because patient thought they would not be welcomed, attended PLHA peer support group activities in the past30days, and family members attended support group activities in the past30days.Multivariable analysis for overall QOL score at baseline,6months and12months found that factors influencing quality of life kept changing as the duration of stay on ART increased. At the baseline survey3factors were corrected with overall QOL scores and factors associated with higher overall QOL score included:better knowledge of HIV/AIDS treatment and higher Karnofsky Performance Scale; patient has feared to be abandoned by family was associated with lower overall QOL score. At the6-month survey5factors were corrected with overall QOL scores and the factors associated with higher overall QOL score were:employed, had sex in the past six month, and higher Karnofsky Performance Scale; factors associated with lower overall QOL score were: patient had feared being abandoned by family, and patient thought it was hard to take ARV drugs every day. At the12-month survey, two factors were significantly correlated with overall QOL scores:Patient whose family provided physical care&support was associated with higher overall QOL score and patient who had alcoholic drink in the past30days was associated with lower overall QOL score.Conclusion:1) ART can significantly improve PLHA QOL, especially during the first6months after initiation of ART patients QOL got the most improvement. As the duration of ART increased, it was harder to make further improvement on patients'quality of life, and patient quality of life was decreased at certain level during the6to12month after initiation of ART.2) There are many other factors playing an important role in patient quality of life. Family-related factors influenced the greatest number of quality of life scores. Followed by treatment and HIV infection related factors, clinical and physical factors. The next two were friend-related factors and social support factors; the final two were behavioral factors, social and cultural factors.3) As the duration of ART increased, the factors influencing QOL kept changing. At the baseline survey major influencing factors on patient QOL included knowledge about HIV/AIDS treatment, Karnofsky Performance Scale, and whether or not the patient feared being abandoned by family; We found the great number of factors influencing quality of life at the6-month survey, including occupation, sexual behavior, Karnofsky Performance Scale, whether or not the patient feared being abandoned by family, and whether or not the patient thinks it is hard to take ARV drugs every day; At the12-month survey patient QOL was mainly influenced by factors closely related to their physical health and function, including whether or not family provided physical care&support, and alcoholic consumption in the past30days.In summary, as the duration for patient to stay on ART increased, it was harder to make further improvement on patients'quality of life, and other complementary services to ART platform were becoming more and more important.
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