艾滋病病毒感染者/艾滋病患者及其家属生活质量和社会支持的研究

目的了解皖北农村地区艾滋病病毒感染者/艾滋病患者(HIV/AIDS)及其家属的生活质量和社会支持现状,分析其相关的影响因素。方法通过典型抽样法采用一般情况问卷、感染史本底资料调查表、生活质量综合评定问卷(GQOLI-74)和社会支持评定量表(SSS)对331名HIV/AIDS及其家属148名进行调查。结果单因素分析显示,不同性别、不同乡镇、不同文化程度的HIV/AIDS及其家属的GQOLI-74总分差异有统计学意义(P<0.05);不同年龄、不同乡镇HIV/AIDS的SSS总分差异有统计学意义(P<0.05)。多元线性回归分析结果表明,高年龄、负性生活事件是影响HIV/ AIDS及其家属生活质量的不利因素,而高文化程度、好的邻里关系、烦恼诉说是影响HIV/AIDS及其家属生活质量的有利因素。结论诸多因素在不同层面影响皖北农村地区HIV/AIDS及其家属的生活质量和社会支持,农村现有的艾滋病社区关爱、社会支持工作还亟需加大力度,以家庭、邻里为依托的社区关爱模式有待建立。     

ＨＩＶ 感染者／ＡＩＤＳ患者的生存质量及其影响因素分析

摘要：目的　了解ＨＩＶ 感染者／ＡＩＤＳ患者的生存质量及其影响因素,更好的预防和控制艾滋病。方法　于
２０１２年４月至２０１３年４月对２２９例ＨＩＶ 感染者／ＡＩＤＳ患者使用ＭＯＳ ＨＩＶ 生存质量表和社会支持度量表
进行面对面调查。结果　生存质量得分为６８．６４±１１．７６,其中ＨＩＶ 感染者７１．３１±１０．１０、已达到服药阶
段的ＨＩＶ 感染者６５．５９±１３．４９、ＡＩＤＳ患者６６．５２±１２．１０,差异有统计学意义;ＨＩＶ 感染者、已达到服药
阶段的ＨＩＶ 感染者和ＡＩＤＳ患者的得分在社会功能、疼痛、精力和情绪功能差异有统计学意义。ＨＩＶ 感染
者／ＡＩＤＳ患者的社会支持度得分为４６．３２±１２．４８, 其中ＨＩＶ 感染者４６．９１±１２．７６、已达到服药阶段的
ＨＩＶ 感染者４５．１２±１２．２１、ＡＩＤＳ患者４６．２６±１２．３２。多因素分析表明生存质量跟年龄、民族、有否其他
慢性疾病和社会支持度有关。结论　要更加重视ＨＩＶ 感染者／ＡＩＤＳ患者在感染ＨＩＶ 的同时是否还有其他
慢性疾病和其社会支持情况,切实提高ＨＩＶ 感染者／ＡＩＤＳ患者的生存质量。
关键词：ＨＩＶ;生存质量;因素
中图分类号：Ｒ５１２．９１　　文献标识码：Ａ　　文章编号：１００９ ６６３９ （２０１４）０５ ０４６９ ０４     

Measuring health related quality of life among women living with HIV

Although women had been under recognized in the literature on HIV/AIDS, increasing numbers of studies have focused on the lives and experiences of women living with HIV/AIDS. Areas of research in which the study of women and HIV continues to be noticeably lacking include health related quality of life (HRQOL). This paper describes HRQOL in an inner city sample of 287 HIV positive non-pregnant women, interviewed as part of a larger multi-site CDC funded study of the reproductive health of women. The average age of the respondents was 33 years and women had known their HIV status an average of 41 months. HRQOL was assessed using a 17-item modified version of the Medical Outcomes Study-HIV Health Survey and demonstrated acceptable internal consistency (0.64-0.89) and variability. Women in our study were similar to other HIV-positive female samples and reported lower levels of well-being and functioning than some HIV-positive male samples. Women's responses to individual items and areas of potential need for health care are discussed. Examination of HRQOL in women with HIV can aid in the comparison of how women and men are affected by HIV and can help health care professionals identify needed services and include possible interventions to promote quality of life. This revised version was published online in June 2006 with corrections to the Cover Date.     

Life events and oral-health-related quality of life among young adults

Purpose  Life-course approaches to understanding the determinants of health have led to a greater focus on the effects of life events on health. Life events may be construed as either positive or negative, and may have differential health effects. The aims of the study were to assess the association of positive and negative life events with oral-health-related quality of life (OHRQoL). Methods  In 2005–2006, 1,859 study participants aged around 30 years old were surveyed by mailed self-complete questionnaire and invited to attend a dental examination. Data collected included life events, social support (MSPSS) and OHRQoL (OHIP-14). A total of 632 people responded (43% response). Results  Multivariate analysis controlling for sex, education, income, dental behaviour and social support showed that the lower (OR = 0.4, 0.2–0.6) and middle tertiles (OR = 0.6, 0.4–0.9) for negative life events were associated with lower prevalence of problems related to OHRQoL compared to the higher tertile. Conclusions  OHRQoL among young adults was associated with negative life events, but not positive life events. This suggests that negative life events involving social readjustment need to considered as determinants of health in life-course oral epidemiology frameworks.     

河南省农村地区HIV/AIDS生存质量及影响因素调查

目的 调查HIV感染者生存质量及影响因素.方法 使用中文版WHOQOL-BREF量表,对驻马店市农村地区2608例HIV感染者进行问卷调查,计算生存质量总分及各领域得分,通过多元线性回归模型分析生存质量总分及生存质量各领域得分的影响因素.结果 HIV感染者生存质量得分为生理领域(12.96±1.94)、心理领域(11.79±1.19)、社会领域(13.79±2.44)、环境领域(12.40±1.93)、生存质量总得分(51.02±6.03).女性生存质量总分及生存质量各领域得分均高于男性.经多元线性回归模型分析得出生存质量影响因素有性别、年龄、职业、家庭纠纷及食欲等.结论 该地区HIV感染者生存质量社会领域得分较高,但心理领域得分较低,建议加强对该人群的心理干预.     

社会资本与HIV感染者生命质量的关联研究

目的 探索社会资本与某戒毒康复社区HIV感染者生命质量之间的统计学关联。方法 采用分层等比抽样法在某少数民族集中戒毒康复社区中抽取400名HIV感染者,问卷调查其人口学特征、生命质量和社会资本现状等;应用SPSS 21.0进行描述性统计分析、因子分析、χ2检验、logistic回归模型构建等。结果 收回有效问卷370份,有效问卷回收率为92.5%。分别有88.9%和82.7%的HIV感染者生理领域和心理领域生命质量较差;家庭支持状况越好,HIV感染者的生理（ORB1 = 1.334,95%CI:0.956～1.861）和心理领域（ORB1 = 1.649,95%CI:1.158～2.348）生命质量评分等级为“好”的发生率越高;人际支持状况越好,HIV感染者心理领域生命质量评分等级为“好”的发生率越高（ORA1 = 2.408,95%CI:1.556～3.725）。结论 较好的家庭支持对戒毒康复社区HIV感染者的生理和心理领域生命质量均有促进作用;良好的人际支持环境对该群体心理领域生命质量具有一定的保护作用。     

HIV/AIDS病人生活质量及社会支持调查

目的 了解皖北农村地区人类免疫缺陷病毒（HIV）感染者／艾滋病（AIDS）病人的生活质量和社会支持现状，分析其相关的影响因素。方法 通过典型抽样法采用一般情况问卷、感染史本底资料调查表、生活质量综合评定问卷（GQOLI-74）和社会支持评定量表（SSS）对85名HIV感染者／AIDS病人进行调查。采用单因素方差和多元线性回归方法对调查结果进行分析。结果 单因素分析显示，不同性别、不同文化程度的HIV感染者／AIDS病人GQOLI-74总分差异有统计学意义（P〈0．05）；不同乡镇的HIV感染者／AIDS病人SSS总分差异有统计学意义（P〈0．05）。多元线性回归分析结果表明，负性生活事件是影响HIV感染者／AIDS病人社会支持的不利因素。而好的邻里关系、烦恼诉说是影响HIV感染者／AIDS病人生活质量的有利因素。结论 诸多因素影响皖北农村地区HIV感染者／AIDS病人的生活质量和社会支持，农村应加强艾滋病社区关爱、社会支持工作，建立以家庭、邻里为依托的社区关爱模式。     

Changes in quality of life among persons with HIV infection

Health-related quality of life (QOL) is an important component of the evaluation of patient outcome in HIV infection where disease is progressive and debilitating. This paper compares patient-reported QOL obtained from questionnaires which cover functional ability, social functioning, cognition, mental health, disability days, disease symptoms, and overall health in the previous 3 months. These scales have been validated on HIV populations. We compared changes in health status over 12 months for 669 patients with varying HIV disease severity: 134 asymptomatic, 416 symptomatic (previously termed ARC), and 119 AIDS. Groups were evaluated at baseline for demographic and health status differences (i.e., age, CD4+). Declines in health status and psychosocial status were found over the year for all persons. Individuals with symptomatic disease or AIDS had significant declines of 10–20% (p<0.001) in all aspects of role functioning (social, daily activities, energy, and global health) and increased disease symptoms, but no significant declines in cognition or mental health. Persons with AIDS had greater declines than those with symptomatic disease. AIDS and symptomatic patients also reported significantly fewer hours at work and more disability days than asymptomatic patients. The impact that HIV disease has on the health status of non-AIDS symptomatic patients is especially striking.This research was supported by a grant from the Agency for Health Care Policy and Research (HS06211) to James F. Fries, Principal Investigator. This paper was presented at the VIII International Conference on AIDS, Amsterdam, July 1992.     

Health related quality of life among persons with HIV after the use of protease inhibitors

Objective: This study was conducted to determine the effect of the use of HIV protease inhibitors on the quality of life among persons infected with HIV. Methods: Subjects were participants in the British Columbia Centre for Excellence in HIV/AIDS Drug Treatment Program who had completed two annual participant surveys, one prior to initiating therapy with a protease inhibitor and one after. Quality of life was measured using the Medical Outcomes Study Short Form Health Survey (MOS-SF). Statistical analyses were conducted using parametric and multivariate methods. Results: Our analysis was based on 179 HIV-positive individuals. Compared to quality of life at baseline, we found no statistically significant changes in the health perception, pain, physical, role and social functioning MOS-SF subscale scores at follow-up. The measure of mental health was the only component to decline significantly over time. Sub-analyses found significant increases in the measures of health perception (p = 0.004), physical (p = 0.037), role (p < 0.001) and social functioning (p = 0.053) for individuals with a low baseline quality of life. For those with a higher quality of life before starting a protease inhibitor containing regimen we observed a significant decline in the subscales of mental health (p = 0.001), physical (p = 0.007), role (p = 0.021) and social functioning (p = 0.003) over the study period. Conclusions: Our findings indicate that despite strict dosage requirements and adverse side effects associated with protease inhibitor use patients are on the whole maintaining their quality of life after starting on a protease inhibitor containing regimen. Continued follow-up of this cohort will be required to determine the long term implications of these observations. This revised version was published online in June 2006 with corrections to the Cover Date.     

A further investigation of health-related quality of life over time among men with HIV infection in the HAART era

This is the third study in a line of research which is designed to increase scientific understanding of the predictors of health-related quality of life (HRQOL) among men with HIV infection using data collected in large, prospective cohort study. Building on two prior investigations, this study examined the time-dependent relationships of psychosocial and clinical variables (active coping strategies, social support, CD4 cell count, comorbidity, and duration of HIV infection) and 10 HRQOL dimensions at two time points (baseline and 12 months). Using linear mixed models, we found that most relationships between the psychosocial and clinical variables and HRQOL dimensions were consistent across time. However, there were interactions between time and CD4 cell count and some HRQOL dimensions. Specifically, increased active coping and social support were positively related, whereas more comorbid conditions and longer HIV infection duration were negatively related with multiple HRQOL dimensions at both baseline and 12 months. CD4 cell count was positively associated with emotional well-being at both time points, but the associations between CD4 cell count and five HRQOL dimensions were negative at baseline but positive at 12 months. These findings provide additional support for the recommendation that clinicians and health planners should continually strive to enhance active coping strategies and social support, manage comorbid conditions, and incorporate duration of HIV diagnoses in their treatment plans. Because the relationships between CD4 cell count and HRQOL dimensions varied over time, it is important to recognize that results from laboratory tests (i.e., CD4 cell count) may have differential quality of life implications for patients at various times in their disease trajectories.     

Impacts of HIV infection and HAART use on quality of life

Background: Studies have shown the detrimental effect of HIV disease on quality of life (QOL). Changes in QOL related to the use of highly active antiretroviral therapy (HAART) have been inconsistent and it is unknown how QOL after HAART compares to pre-infection levels. Objective: The objective of this study was to determine the impacts of becoming HIV infected and using HAART on QOL within individuals followed in the Multicenter AIDS Cohort Study (MACS). Methods: Using the standard Medical Outcome Study SF-36 form, QOL data were collected pre-seroconversion, post-seroconversion but before HAART initiation, and after HAART initiation for 68 seroconverters. The QOL physical health summary score (PHS) and mental health summary score (MHS) were used as outcomes. The effects of HIV infection and HAART use on QOL summary scores were determined using random effects mixed linear models after controlling for possible confounders. The clinical significance of QOL change was assessed using the Cohen’s effect size method. Results: Compared to pre-seroconversion values, the PHS decreased after seroconversion (mean difference (diff) = −1.62; 95% confidence interval (CI): [−3.20, −0.03]) and after HAART initiation (diff = −4.20; 95% CI: [−5.86, −2.54]) with small to medium effect sizes. The score remained significantly lower than prior to HIV infection (diff = −6.16; 95% CI: [−8.09, −4.23]) after being on HAART for more than 4 years. The MHS did not significantly differ upon seroconversion (diff = −1.16; 95% CI: [−3.32, 1.00]). After using HAART for more than 4 years, the MHS was significantly greater than prior to HIV infection (diff = 2.93; 95% CI: [0.31, 5.55]) with a small effect size. Conclusion: The QOL of participants has been dynamic over the HIV disease course. HIV infection deteriorated physical but not mental QOL. In this group, although the PHS following HAART has remained lower than that prior to infection, HAART has enhanced mental health functioning.     

安徽省艾滋病病毒感染者和病人卫生服务利用及其对生存质量的影响

目的 了解艾滋病病毒感染者和病人(PLWHAS)的卫生服务利用(HSU)现状及其对生存质量(QOL)的影响,为合理分配卫生服务资源,提高其QOL提供依据。方法 采用整群分层抽样方法抽取10个县(市、区)的PLWHAS,使用简明健康调查量表(MOS-HIV)对选定人群的HSU和QOL状况进行问卷调查,通过描述性统计和多重线性回归分析评价PLWHAS的HSU及其对QOL的影响。结果 PLWHAS的CD4免费检测的利用率最高(96.39%),其次为医疗保险(95.36%),而生活保障的利用率最低(71.14%)。PLWHAS的生理健康总分(PHS)为48.29±8.73分,心理健康总分(MHS)为46.67±8.45分,GH、PF、RF、SF、PN、MH、VT、HD共8个维度的得分均低于一般人群(P<0.000 1)。接受免费病毒载量(VL)检测、获得持续固定补贴的PHS差异有统计学意义(P<0.05);享受低保、医保、关爱活动、CD4检测的MHS差异有统计学意义(P<0.05);除GH外,HSU对各维度均产生不同程度的影响(P<0.05)。享有低保和医保的QOL优于无医保的,有低保、新农合、持续固定补贴和每年2次的CD4检测对PHS、MHS及PF、RF、CF、MH、VT、HD、QL的影响均有统计学意义(P<0.05)。结论 安徽省PLWHAS的QOL低于一般人群,HSU较好,医保、低保、固定补贴均能提高其QOL,建议扩大PLWHAS机会性感染、药物副作用报销比例,将新农合、医疗保险、医疗救助有机结合,并逐步开展心理支持、中医调理性治疗以提高其QOL。     

河南省HIV感染者/AIDS患者生存质量评价

目的 了解河南省HIV感染者/AIDS患者生存质量状况及其影响因素,为改善HIV感染者/AIDS患者生存质量提供参考依据.方法 采用世界卫生组织艾滋病生存质量简表对河南省艾滋病高发区112例HIV感染者/AIDS患者生存质量及相关因素进行问卷调查.结果 HIV感染者/AIDS患者生存质量总分为(72.00±10.10)分;HIV感染者/AIDS患者得分除精神支柱/个人信仰领域高于中国常模外(P<0.05),其他领域得分及总评分均低于中国常模,差异有统计学意义(P<0.05);不同抑郁状况(t=-6.31,P=0.00)、相关症状数(t=-2.32,P=0.02)、家庭支持度(t=3.66,P=0.00)HIV感染者/AIDS患者生存质量比较,差异有统计学意义.结论 HIV感染者/AIDS患者的生存质量低于一般人群,对HIV感染者/AIDS患者医疗救助的同时进行心理咨询可以提高其生存质量.     

Gender differences in health-related quality of life in patients with HIV/AIDS

Background: In studies evaluating the general US population, patients in primary care, and patients with chronic conditions, women consistently report poorer health-related quality of life (HRQoL) than men; however, studies evaluating HRQoL in patients with HIV/AIDS have not completely corroborated those findings. The objective of this study was to evaluate gender differences in HRQoL for participants in a large randomized trial comparing antiretroviral regimens. Methods: AIDS Clinical Trials Group (ACTG) 320 was a randomized, blinded, placebo-controlled trial comparing the 3-drug regimen of indinavir + zidovudine (or stavudine) + lamivudine with the 2-drug combination of zidovudine (or stavudine) + lamivudine in subjects with CD4 cell counts less than 200 cells/l and no prior treatment with protease inhibitors. Nine quality of life domains scored on 0–100 scales were assessed using the ACTG QOL 601-602 Health Survey at 3 points in the trial: baseline, 24 weeks and 40 weeks. Differences between men and women in HRQoL scores were assessed using the Wilcoxon rank-sum test and generalized estimating equation (GEE) models. Results: Overall, 202 females and 976 males were randomized to one of two treatment arms. Female participants were more likely to be black or Hispanic and tended to be younger. At baseline, females reported lower HRQoL scores than males in all of the domains except social functioning, and at week 40, women scored lower in all of the domains except overall health. In repeated measures models, women were found to score lower in all HRQoL domains except overall health, with significant differences of 3.5–6.7 points in 3 of the 9 quality of life domains: physical functioning, pain, and energy/fatigue. HRQoL scores improved for participants in the study over time and in response to potent treatment, and the improvements were similar for men and women. Conclusions: Women with HIV/AIDS report substantially poorer HRQoL than men with HIV/AIDS in several HRQoL domains. However, changes in domain scores over time and in response to treatment do not differ significantly by gender, implying that changes in domain scores may be better HRQoL outcomes to compare between HIV-infected men and women in clinical trials than mean domain scores.     

中国艾滋病病毒感染者生命质量测定量表的编制

目的编制用于测定中国HIV感染者生命质量的量表，评价其信度和效度。方法参考现有量表，并与相关专家、基层疾病预防控制人员、HIV感染者进行访谈以形成初始量表，在443例HIV感染者中试用。根据条目应答率、因子分析、相关系数矩阵、内部一致性分析等进行条目精简，形成最终量表。分析最终量表的信度和效度。结果形成的中国HIV感染者生命质量量表（QOL—CPLWHA）共44个条目。各维度没有严重的天花板效应和地板效应（最高为21．0％），内部一致性信度系数均≥0．70，全量表的为0．90。量表总分2周重测信度系数为0．80，有2个维度的重测信度系数低于0．6，4个维度的在0．6～0．7之间。各条目的成维率均为100％。量表总得分与SF-36总得分的spearman相关系数为0．69。结论所形成的QOL—CPLWHA量表首次引入了敌意心理趋势维度。量表具有较好的内部一致性信度、结构效度及内容效度等，可应用于中国HIV感染人群。     

Quality of life among people living with HIV/AIDS in northern Thailand: MOS-HIV Health Survey

OBJECTIVES: Translation and psychometric evaluation of a Thai version of the Medical Outcomes Study HIV Health Survey (MOS-HIV) in Thailand. METHODS: A cross-sectional survey in Chiang Mai province, northern Thailand, with data collected in face-to-face interviews using a structured questionnaire designed to measure 10 scales of quality of life (QOL). We recruited 200 people with HIV/AIDS attending self-help groups in the municipal area. Standard guidelines were followed for questionnaire translation and psychometric evaluations. RESULTS: Item-level internal consistency and discriminant validity were reasonably established. Success rates were 93.8 and 97.4%, respectively. Scale-level internal consistency reliability of multi-item scales was satisfactory, ranging from 0.74 to 0.88, with all exceeding inter-scale correlations. Principal components analysis of item and scale scores identified two hypothesized dimensions of the MOS-HIV. The mental health component was strongly loaded by health distress, mental health, vitality and cognitive function scales, and physical health by role, physical and social functions, and pain scales. Respondents manifesting symptoms or reporting worsening health status scored significantly lower on all scales. CONCLUSIONS: These preliminary studies have shown the Thai version of the MOS-HIV to have psychometric properties comparable with those reported in previous surveys. Further testing and modification should make it useful as an HIV-specific QOL measure in Thailand.     

安徽省艾滋病抗病毒治疗病人生活质量与社会支持典型相关分析

目的了解接受抗病毒治疗的艾滋病病人的生活质量和社会支持现况及其相关性。方法采用简明健康调查量表（the MOS item short from health survey,SF-36）和社会支持评定量表（social science research solutions,SSRS）对选定人群进行生活质量和社会支持的调查及典型相关分析。结果抗病毒治疗艾滋病病人生活质量和社会支持得分均低于一般人群（均有P〈0.05）。病人社会支持与生活质量之间存在典型相关关系（F=7.48,P〈0.001）。反映生活质量的第一典型变量V1主要由心理健康和情绪角色限制决定;反映社会支持的第一典型变量W1主要由主观支持和对支持的利用度决定。结论抗病毒治疗艾滋病病人生活质量差,社会支持水平低。病人获得的主观支持越多或对支持的利用度越高,则其心理健康状况越好;越少或越低,则由情感问题所造成的职能限制越大。     

艾滋病患者抗病毒治疗依从性和生活质量现状及相关性探讨

目的了解艾滋病患者抗病毒治疗依从性及生活质量现状,探讨其相关性。方法采用美国社区艾滋病临床研究抗病毒用药自陈式问卷和SF-36生活质量问卷,整群抽取合肥市某区25例接受免费抗病毒治疗的患者进行问卷调查。结果本组患者的抗病毒治疗服药平均依从性为99.39%,艾滋病患者在SF-36生活质量各领域得分均低于常模,与健康人群在躯体功能（PF）、总体健康（GH）、社会功能（SF）以及精神健康（MH）等领域差异有统计学意义（P〈0.05）。结论接受抗病毒治疗的艾滋病患者生活质量得分偏低,应采用综合干预措施改善其生活质量。     

Assessing a conceptual framework of health-related quality of life in a HIV/AIDS population

With the recognition of health-related quality of life (HRQOL) as an important outcome in the course of HIV-disease, it is important to gain a better understanding of the complex relationships among the various factors that influence it. This study assesses a conceptual framework of HRQOL, consisting of disease status, socio-economic status (SES), behavioral variables, symptom status, role-specific functional status and HRQOL, among a multiethnic, economically disadvantaged population of individuals living with HIV/AIDS. Self-report data were collected from 348 patients receiving care at a large HIV/AIDS care center, serving residents of a large metropolitan area. The relationships between the study variables were examined using structural equation modeling. Results indicated that the hypothesized framework provided a well-fitted solution to the data, ²(44df)=57.62], p = 0.08 and root mean square error of approximation=0.03, 90% confidence interval 0.01; 0.05. This framework suggests that health-related variables fall along a continuum, beginning with disease status and ending in generic HRQOL. In addition, the framework suggests that behavioral factors (i.e., smoking status, alcohol consumption, and illicit drug use) and SES exert significant effects along this continuum and should be carefully considered when analyzing and interpreting HRQOL data.     

社会支持因素与维持性血液透析患者生存质量关系的研究

目的 探讨社会支持因素与维持性血液透析患者生存质量之间的关系,为临床治疗提供理论依据,提高维持性血液透析患者远期生存质量.方法 采用世界卫生组织生存质量测定简表(WHO2QOL-BREF)和社会支持评定量表对98例规律性血液透析患者生存质量、社会支持及其两者相关性进行评定分析并与健康对照组进行比较.结果 血透患者生理领...