广西壮族自治区接受抗病毒治疗的艾滋病患者生活质量及影响因素的研究
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摘要
目的:
     通过一年随访观察,评估艾滋病患者从开始接受抗病毒治疗到6个月和12个月时生活质量的动态变化情况,并进一步分析和发现可能的影响因素,为进一步提高艾滋病抗病毒治疗工作在改善患者生活质量方面的效果提供科学依据。
     方法:
     采用队列研究方法,选择广西壮族自治区5个艾滋病抗病毒治疗门诊作为研究现场,运用定量和定性两种方法收集资料。定量研究中通过对接受抗病毒治疗的成年艾滋病患者进行3次问卷调查(包括治疗前的基线问卷调查、开始治疗后的第6个月和第12个月的随访问卷调查),利用WHOQOL-HIV BREF量表(可以计算9个生活质量得分,包括:总体生活质量、总体健康、生理领域、心理领域、独立性领域、社会关系领域、环境领域、精神/信仰领域,以及上述各个得分均值—生活质量总得分)评估患者的生活质量变化情况,并广泛收集和探索与生活质量相关的各种潜在影响因素。在基线调查约一年后,根据初步数据分析结果,从已经完成一年随访的调查对象中选出20名患者开展定性访谈,以进一步详细了解患者的生活质量变化情况及相关影响因素。
     结果:
     1.研究对象一般情况:2007年5月到2008年5月期间,成功招募了332名符合标准的研究对象参与基线调查,到2009年5月完成了调查对象的12个月随访,分别有267名(80.4%)和260名(78.3%)基线调查对象接受了6个月和12个月的随访调查。基线调查对象中男性为226名(68.1%),女性为106名(31.9%);平均年龄39.6岁,最小的年龄为20.2岁,最大的为76.5岁。教育水平为小学及以下的有110人(33.2%),初中150人(45.3%),高中及以上71人(21.5%);已婚或同居为218人(65.7%),未婚且未同居114人(34.3%);研究对象主要为农民或无业居民,占60.2%(198人),在聘人员占39.8%(131人);感染途径以异性性途径为主,占75.8%(197人),注射吸毒占15.4%(40人),其它途径占8.8%(23人);有56人(21.5%)人自我报告是被配偶感染的。
     2.生活质量得分的变化情况:基线调查时各生活质量得分均值分别为:总体生活质量11.3分、总体健康10.3分、生理领域12.5分、心理领域11.3分、独立性领域11.6分、社会关系领域11.4分、环境领域11.4分、精神/信仰领域12分、生活质量总得分11.5分;6个月调查时所有生活质量得分均显著高于基线,分别为:总体生活质量12.6分、总体健康12.9分、生理领域14.4分、心理领域13.1分、独立性领域13.6分、社会关系领域12分、环境领域12.4分、精神/信仰领域13.1分、生活质量总得分13分;12个月调查时各生活质量得分均值分别为:总体生活质量12.6分、总体健康13分、生理领域14.2分、心理领域12.8分、独立性领域13.7分、社会关系领域11.6分、环境领域12分、精神/信仰领域12.9分、生活质量总得分12.8分,除社会关系领域外,其余8个生活质量得分均显著高于基线,心理领域、社会关系领域和环境领域得分显著低于6个月调查时的得分。
     3.生活质量的影响因素:本研究中共对46个生活质量影响因素进行了分析和探讨,将其分为7类,包括社会文化性因素(含10个因素)、临床生理性因素(含7个因素)、治疗及感染HIV的相关因素(含5个因素)、行为因素(含3个因素)、家庭支持及相关因素(含11个因素)、朋友相关的因素(含4个因素)、以及社会支持相关因素(含6个因素)。结果发现,患者生活质量受到多种因素的影响,家庭支持及相关因素影响的范围最广;其次为治疗及感染HIV的相关因素和临床生理性因素;再次为朋友相关因素和社会支持相关因素;影响范围最小的是行为因素和社会文化性因素。
     在单因素分析中与较高生活质量得分显著相关的因素有:较高的教育水平、有工作、家里平均月收入较高、已婚或同居、其它感染途径(非性和非吸毒途径)、到达门诊所需的时间较短、较高的BMI、卡诺夫司基得分较高、较高的淋巴细胞计数、过去半年出现较少的药物副作用、知道自己HIV感染的时间较短、较高的艾滋病治疗知识、不是被配偶传染、过去7天没有漏服过药物、认为坚持每天服药不困难、过去30天内未饮酒、过去半年发生过性行为、将自己的HIV感染状况告诉过家人、对告诉家人自己HIV感染状况的做法为满意/很满意、家人提供了鼓励心理支持、家人提供了经济支持、家人提醒患者服药的频率较高、对家人的支持为满意/很满意、没有感受到家人的歧视、没有因为害怕家人不欢迎自己而主动远离他们、不担心被家人抛弃、将自己的HIV感染状况告诉过朋友、对自己将HIV感染状况告诉给朋友的做法为满意/很满意、未感受到朋友的歧视、没有因为害怕朋友可能不欢迎自己而远离他们、过去30天内参加过感染者支持小组活动、过去30天内家人参加过小组支持活动。
     在基线、半年和一年调查时针对生活质量总得分的多因素分析中发现,随着患者接受治疗时间的延长,对其生活质量产生影响的因素也有所变化,在基线调查时,有3个因素对生活质量总得分具有显著性影响,较高的艾滋病治疗知识、较高的卡诺夫司基得分与较高的生活质量总得分显著相关;担心被家人抛弃与较低的生活质量总得分显著相关。半年调查时有5个因素具有显著性影响,有工作、过去半年发生过性行为、较高的卡诺夫司基得分与较高的生活质量总得分显著相关;担心被家人抛弃、认为坚持每天服药困难与较低的生活质量总得分显著相关。一年调查时有2个因素对生活质量总得分具有显著性影响,家人提供了身体上的照顾和支持与较高的生活质量总得分显著相关;过去30天饮酒与较低的生活质量总得分显著相关。
     结论:
     1.)抗病毒治疗可以显著提高和改善患者的生活质量,尤其是开始治疗后的最初6个月内患者生活质量提高的幅度最为明显,随着患者治疗时间的延长其生活质量的进一步提高变得困难,在开始治疗后的6-12月内患者生活质量出现一定程度的下降;2.)患者生活质量受到很多因素的较大影响作用,家庭支持及相关因素影响的范围最广;其次为治疗及感染HIV的相关因素和临床生理性因素;再次为朋友相关因素和社会支持及相关因素;影响范围最小的是行为因素和社会文化性因素。3.)随着患者接受治疗时间的延长,生活质量的影响因素也有所不同。在治疗前基线调查时患者生活质量主要受到艾滋病治疗相关知识的知晓情况、卡诺夫司基得分、以及是否担心被家人抛弃等因素的影响;在接受治疗半年时患者生活质量的影响因素最多,包括:职业、过去半年是否发生过性行为、卡诺夫司基得分、是否担心被家人抛弃、认为坚持每天服药是否困难等因素;在接受治疗一年时患者生活质量主要受到与身体健康关系密切的因素影响,包括:家人是否提供了身体上的照顾和支持、过去30天内是否饮酒。
     这些结果表明,随着患者接受抗病毒治疗时间的延长,其生理机能和身体健康得到逐渐改善的同时,其生活质量的进一步提高变得困难,而在不同治疗阶段针对不同患者的特定需求、全面考虑生活质量各种影响因素的综合性服务显得非常必要。
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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