Abstracts

Introduction

With medical progress, diseases once considered to be lethal have become treatable and the symptoms can be controlled, thereby increasing life expectancy (1)1  Panzini RG, Rocha NS, Bandeira DR, Fleck MPA. Qualidade de vida e espiritualidade. Rev Psiq Clín 2007; 34:105-15.. HIV infection is no longer a threat of eminent death but is instead a chronic condition associated with a higher life expectancy (2)2  Chiasson MA, Berenson L, Li W, Schwartz S, Singh T, Forlenza S, et al. Declining HIV/AIDS mortality in New York City. J Acquir Immune Defic Syndr 1999; 21:59-64.. However the social stigma and side effects of medication, such as lipodystrophy, interfere with the well-being of patients (3)3  Palella Jr. FJ, Delaney KM, Moorman AC, Loveless MO, Fuhrer J, Satten GA, et al. Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. N Engl J Med 1998; 338:853-60..Therefore, it has become particularly important to assess how people living with HIV/AIDS are living longer (1)1  Panzini RG, Rocha NS, Bandeira DR, Fleck MPA. Qualidade de vida e espiritualidade. Rev Psiq Clín 2007; 34:105-15..

There is a growing concern about quality of life among people living with HIV/AIDS (4)4  Geocze L, Mucci S, De Marco MA, Nogueira-Martins LA, Citero VA. Qualidade de vida e adesão ao tratamento antirretroviral de pacientes portadores de HIV. Rev Saúde Pública 2010; 44:743-9. ^, (5)5  O'Connell K, Skevington S, Saxena S; WHOQOL HIV Group. Preliminary development of the World Health Organization's Quality of Life HIV instrument (WHOQOL-HIV): analysis of the pilot version. Soc Sci Med 2003; 57:1259-75. ^, (6)6  Jelsma J, Maclean E, Hughes J, Tinise X, Darder M. An investigation into the health-related quality of life of individuals living with HIV who are receiving HAART. AIDS Care 2005; 17:579-88.. Quality of life refers to health status when taking into consideration multiple dimensions including social, psychological, physical and functional well-being. The World Health Organization (WHO) defines quality of life as "individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns" (7)7  The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41:1403-9. (p. 1403).

The literature reported no consensus on the several associations that have been made between the illness and quality of life. For instance, women living with HIV/AIDS have a worse quality of life than men (8)8  Zimpel RR, Fleck MPA. Quality of life in HIV-positive Brazilians: application and validation of the WHOQOL-HIV, Brazilian version. AIDS Care 2007; 19:923-30. ^, (9)9  Razera F, Ferreira J, Bonamigo RR. Factors associated with health-related quality of life in HIV-infected Brazilians. Int J STD AIDS 2008; 19:519-23. ^, (10)10  Gaspar J, Reis RK, Pereira FMV, Neves LAS, Castrighini CC, Gir E. Quality of life in women with HIV/AIDS in a municipality in the state of São Paulo. Rev Esc Enferm USP 2011; 45:230-6. ^, (11)11  Santos ECM, França Júnior I, Lopes F. Qualidade de vida de pessoas vivendo com HIV/AIDS em São Paulo. Rev Saúde Pública 2007; 41:64-71. ^, (12)12  Nojomi M, Anbary K, Ranjbar M. Health-related quality of life in patients with HIV/AIDS. Arch Iran Med 2008; 11:608-12. ^, (13)13  Pereira M, Canavarro MC. Gender and age differences in quality of life and the impact of psychopathological symptoms among HIV-infected patients. AIDS Behav 2011; 15:1857-69.. However, one study has reported no differences in quality of life with regard to gender (14)14  Belak Kovacević S, Vurusić T, Duvancić K, Macek M. Quality of life of HIV-infected persons in Croatia. Coll Antropol 2006; 30:79-84. and another has shown better quality of life among women (15)15  Fatiregun AA, Mofolorunsho KC, Osagbemi KG. Quality of life of people living with HIV/AIDS in Kogi state, Nigeria. Benin J Postgrad Med 2009; 11:21-7.. It is important to take into account the various cultural issues involving gender in the different regions where these studies were performed, a fact that may in some way have influenced the results. Studies that have used a representative sample and conducted multivariate statistical analysis of the subjects are important in efforts to solve these inconsistencies, but they are also scarce. Accordingly, the objective of the present study is to assess quality of life and to identify factors associated with quality of life among adult patients who attended an HIV/AIDS treatment referral center in the south of Brazil.

Methods

A cross-sectional study of the 690 people living with HIV/AIDS attending the Special Assistance Service for HIV/AIDS in Pelotas, Rio Grande do Sul State, Brazil (SAS-Pelotas), from December 2011 to June 2012 was carried out. It is important to point out that the SAS-Pelotas is the center that provides medical attention and antiretroviral medication to people living with HIV/AIDS in the city of Pelotas and the surrounding area. Ethical approval for the study was obtained from the Ethics Research Committees at the Catholic University of Pelotas (UCPel) and the Federal University of Pelotas (UFPel).

Inclusion criteria for participation in the study were: being 18 years old or older and having a record of HIV infection. Males and females responded to interview. Exclusion criteria were: presenting a clinical or cognitive condition that prevented a clear understanding of the research instruments, as in the case of a patient with a severe hearing impediment or under the effect of a psychoactive substance such as alcohol, or limitations in being able to respond to the questionnaire unaccompanied, as in the case of prisoners with a police escort. The interviews were conducted by five interviewers, who received prior training from the authors.

The World Health Organization Quality of Life Instrument, brief version, specific to people living with HIV/AIDS (WHOQOL-HIV Bref) was adapted and used to conduct an interview, given that other studies had reported difficulties faced by patients in understanding, thereby requiring frequent assistance when the questionnaire was self-administered (16)16  Carneiro AKJ. Avaliação da qualidade de vida dos pacientes com sorologia positiva para HIV, acompanhados ambulatorialmente no Instituto de Infectologia Emilio Ribas, São Paulo [Dissertação de Mestrado]. São Paulo: Programa de Pós-graduação em Ciências, Coordenadoria de Controle de Doenças, Secretaria da Saúde de São Paulo; 2010. . In addition, no significant differences were found in the results when the two methods (structured interviews vs. self-administered) were compared (17)17  Puhan MA, Ahuja A, Van Natta ML, Ackatz LE, Meinert C; Studies of Ocular Complications of AIDS Research Group. Interviewer versus self-administered health related quality of life questionnaires - does it matter? Health Qual Life Outcomes 2011; 9:30. .

A pilot study was conducted among 40 participants and the sample size was calculated using mean differences for each of the outcomes proposed by the quality of life instrument with each independent variable to ensure the reliability of the data. The largest sample size required was 572 participants for a confidence level of 95%. Considering a percentage of refusals and to control for confounding factors of 20%, the final required sample size was 688 participants.

Instruments

The survey instrument consisted of an interview that assessed socio-demographic and clinical issues.

Socio-demographic interview

The interview inquired about gender, skin color (self-reported by the participant as white or non-white), age, education attainment, employment status, socioeconomic status (Associação Brasileira de Empresas de Pesquisa. Critério de classificação econômica Brasil. http://www.abep.org, accessed on 12/Aug/2012 - a scale that classifies individuals into socioeconomic groups by possession of comfort items and level of education of household head), marital status (partnership for a year or more), children and religiosity (prays, attends mass, church or some other place of worship at least once a month).

Clinical interview

We gathered information regarding the means of infection (through sexual intercourse, exposure to hazardous biological material, drug use, blood transfusion, vertical transmission or does not know), time since diagnosis (how long the subject has known that they are living with HIV), antiretroviral medication (never or at least once), lipodystrophy (self-perception of changes in face, nape of neck, arms, chest/breasts, abdomen, buttocks and/or legs after the beginning of antiretroviral therapy: none, thinner or more swollen), comorbidities (self-reported diagnosis of hypertension, diabetes, cardiopathy, dyslipidemia, tuberculosis, hepatitis, chronic kidney disease, chronic lung disease, cancer) and HIV related hospitalizations (which referred to whether the subject had ever been hospitalized as a result of complications related to HIV infection). A question was also included regarding the individual's feelings about any type of social support they received related to the HIV infection, irrespective of the source of support: family, friends, health care or other (yes or no).

Data on the clinical stage of infection, CD4+ cell count (CD4+) and viral load, based on the most recent result over the previous six months, was retrieved from the medical charts at SAS-Pelotas. Patients were categorized by clinical stage as asymptomatic, symptomatic and AIDS, according to the Centers for Disease Control and Prevention (CDC-2008) (18)18  Schneider E, Whitmore S, Glynn KM, Dominguez K, Mitsch A, McKenna MT, et al. Revised surveillance case definitions for HIV infection among adults, adolescents, and children aged < 18 months and for HIV infection and AIDS among children aged 18 months to < 13 years: United States, 2008. MMWR Recomm Rep 2008; 57(RR-10):1-12. and the Brazilian Ministry of Health (19)19  Programa Nacional de DST e AIDS, Secretaria de Vigilância em Saúde, Ministério da Saúde. Critérios de definição de casos de AIDS em adultos e crianças. Brasília: Ministério da Saúde; 2004. guidelines used at the time of the data collection. CD4+ and viral load cutoff points were also considered in accordance with the HIV/AIDS guidelines at the time of data collection (20)20  Programa Nacional de DST e AIDS, Secretaria de Vigilância em Saúde, Ministério da Saúde. Recomendações para terapia anti-retroviral em adultos infectados pelo HIV. Brasília: Ministério da Saúde; 2008. ^, (21)21  Department of Health and Human Services. Guidelines for the use of antiretroviral agents in HIV-1- infected adults and adolescents. http://aidsinfo.nih.gov/guidelines (accessed on 12/Aug/2012).
http://aidsinfo.nih.gov/guidelines... . Undetectable viral load was defined as less than 50 viral copies/mL RNA.

The participants' use of psychoactive substances was assessed with the Alcohol Smoking and Substance Involvement Screening Test (ASSIST 2.0) which was adapted and validated for the Brazilian population (22)22  Henrique IFS, De Micheli D, Lacerda RB, Lacerda LA, Formigoni MLOS. Validação da versão brasileira do teste de triagem do envolvimento com álcool, cigarro e outras substâncias (ASSIST). Rev Assoc Med Bras 2004; 50:199-206.. This is a structured questionnaire with eight questions about the use of psychoactive substance (alcohol, tobacco, marijuana, cocaine/crack, stimulants, sedatives/hypnotics, inhalants, hallucinogens, opiates and others). Each response corresponds to a score ranging from 0 to 4, and the total sum can vary from 0 to 20. A score ranging from 0 to 3 is indicative of occasional use, from 4 to 15 indicates abuse and 16 or more indicates addiction. The variables related to abuse and dependence on alcohol, tobacco and illicit drugs were dichotomous (yes or no): occasional use/never (score ranging 0-3) or abuse/addiction (score ≥ 4).

The Hospital Anxiety and Depression Scale (HAD) was used to assess anxiety and depression (23)23  Botega NJ, Bio MC, Zomignani MA, Garcia Júnior C, Pereira WAB. Transtornos do humor em enfermaria de clínica médica e validação de escala de medida (HAD) de ansiedade e depressão. Rev Saúde Pública 1995; 29:355-63.. The scale consists of 14 multiple-choice questions divided into two sub-scales: depression and anxiety. Each scale has seven items and the overall score ranges from 0 to 21. The cutoff point was 8/9. Two dichotomous variables were created, based on the cutoff point for signs of anxiety and depression, yes or no.

Instrument for assessing quality of life

The quality of life assessment was performed using the WHOQOL-HIV Bref (24)24  World Health Organization. WHOQOL-HIV Bref. http://www.who.int/iris/handle/10665/77775 (accessed on 12/Aug/2012).
http://www.who.int/iris/handle/10665/777... . The instrument is based on the WHOQOL-Bref, the shorter form of the WHOQOL-100 (25)25  World Health Organization. WHOQOL-HIV. http://www.who.int/iris/handle/10665/77776#sthash.rxmDH1vA.dpuf (accessed on 12/Aug/2012).
http://www.who.int/iris/handle/10665/777... and is used on a large scale in several countries (10)10  Gaspar J, Reis RK, Pereira FMV, Neves LAS, Castrighini CC, Gir E. Quality of life in women with HIV/AIDS in a municipality in the state of São Paulo. Rev Esc Enferm USP 2011; 45:230-6. ^, (13)13  Pereira M, Canavarro MC. Gender and age differences in quality of life and the impact of psychopathological symptoms among HIV-infected patients. AIDS Behav 2011; 15:1857-69. ^, (14)14  Belak Kovacević S, Vurusić T, Duvancić K, Macek M. Quality of life of HIV-infected persons in Croatia. Coll Antropol 2006; 30:79-84. ^, (26)26  Chandra PS, Gandhi C, Satishchandra P, Kamat A, Desai A, Ravi V, et al. Quality of life in HIV subtypes C infection among asymptomatic subjects and its association with CD4 counts and viral loads: a study from South India. Qual Life Res 2006; 15:1597-605. including Brazil (10)10  Gaspar J, Reis RK, Pereira FMV, Neves LAS, Castrighini CC, Gir E. Quality of life in women with HIV/AIDS in a municipality in the state of São Paulo. Rev Esc Enferm USP 2011; 45:230-6.. The WHOQOL-HIV Bref provides a profile of quality of life with scores ranging from 4 (poorest quality of life) to 20 (best quality of life) across six domains: physical, psychological, independence level, social relationships, environment and spirituality/religiousness/personal beliefs.

The physical domain assesses pain and discomfort, energy and fatigue, sleep and rest and symptoms of people living with HIV/AIDS (for example: to what extent do you think your pain (physical) prevents you from doing what you need?). The psychological domain assesses positive feelings; thinking; learning; memory and concentration; self-esteem; body image and (physical) appearance; and negative feelings (for example: how much you are bothered by having - or have had - any unpleasant physical problem related to your HIV infection?). The independence level domain assesses mobility; activities of daily living; dependence on medication or treatments; and work capacity (for example: how much do you need any kind of medical treatment to function in your daily life?). The social relationship domain assesses personal relationships; social support; sexual activity; and social inclusion (for example: to what extent do you feel accepted by people you know?). The environment domain assesses physical security and protection, home environment (housing); financial resources and access to quality health and social care; opportunities to acquire new information and skills; participation in and opportunities for recreation/leisure; physical environment (pollution/noise/traffic/climate); and transportation (for example: how safe do you feel in your daily life?). The spirituality/religiousness/personal beliefs domain assesses spirituality/religion/personal beliefs, forgiveness and guilt, worries about the future, death and dying (for example: how much do you worry about death?).

Statistical analysis

After the application and coding of the instruments, data entry was performed using Epi Info 6.04 software (Centers for Disease Control and Prevention, Atlanta, USA). Double data entry was performed to ensure greater accuracy and reduce the potential for human error. The statistical analysis of the data was performed using SPSS 13.0 software (SPSS Inc., Chicago, USA). An analysis of statistical significance was performed to verify the differences in mean quality of life in relation to the independent variables under study, using the t test for dichotomous variables and ANOVA for ordinal and nominal variables. A multivariate analysis was performed using linear regression, adjusting for socio-demographic and clinical variables in relation to the domains of the WHOQOL-HIV Bref. This was performed following a multilevel hierarchic model for each domain of quality of life. Those associations with a p-value ≤ 0.2 in t test or ANOVA test were included in each model.

Results

Of the 690 patients who were invited to participate in the study, 625 agreed to participate and completed the questionnaire in a private interview. There were 57 refusals, with a lack of time given as the main reason for refusal. We excluded data from eight participants due to the exclusion criteria. The sociodemographic and clinical characteristics of the sample are presented in Table 1 and Table 2. In regard to gender and ethnicity, 51.8% were female and 70.1% were white. The mean age of the participants was 42 years (± 11.46), ranging from 18 to 79 years old, and the mean years of school attendance was 6.96 years (± 4.06). Most patients had children (75.7%), belonged to socioeconomic class C (59.8%) and reported following a religion (76.6%). Only 37.4% of participants were employed. Just over half of the participants (52%) reported a partnership lasting at least one year. 34 different therapeutic approaches were identified; the most frequent was the combination of Efavirenz + Zidovudine + Lamivudine (31.8%). Among the reported bodily changes, the most commonly observed after the initiation of antiretroviral therapy were excess fat deposition in the abdomen (29.2%), leg atrophy (20.9%) and facial lipoatrophy (15.2%). Hypertension and dyslipidemia were the most frequent comorbidities reported (23.5% and 23.1%, respectively). Using bivariate analysis, we calculated the mean differences in QoL according to the independent variables for each domain of the WHOQOL-HIV Bref (Table 3).

After the adjusted analysis the following factors were independently associated with quality of life scores in the physical, psychological and independence level domains: gender, age, education, employment status, socioeconomic status, signs of anxiety, signs of depression, abuse or addiction to other psychoactive substances, social support, HIV related hospitalizations, comorbidities, lipodystrophy and CD4+ (Table 4).

Age, gender, employment, socioeconomic status, partnership, signs of anxiety, signs of depression, social support, abuse or addiction to other psychoactive substances, antiretroviral medication and HIV related hospitalizations were independently associated with quality of life scores in the social relationships, environment and spirituality/religiousness/personal beliefs domains (Table 5).

Discussion

This study demonstrated the importance of sociodemographic variables to quality of life for people living with HIV/AIDS. Female patients had lower scores in the psychological and spiritual domains, with almost a point of difference in both. Similar results were found by Pereira & Canavarro (13)13  Pereira M, Canavarro MC. Gender and age differences in quality of life and the impact of psychopathological symptoms among HIV-infected patients. AIDS Behav 2011; 15:1857-69., using WHOQOL-HIV Bref. The lowest scores for quality of life in this group may be related to cultural, educational and socioeconomic differences between genders (10)10  Gaspar J, Reis RK, Pereira FMV, Neves LAS, Castrighini CC, Gir E. Quality of life in women with HIV/AIDS in a municipality in the state of São Paulo. Rev Esc Enferm USP 2011; 45:230-6.. Many women still live in a situation of economic and emotional dependence on their partner and face difficulties in the relationship, such as negotiating condom use during sexual intercourse (10)10  Gaspar J, Reis RK, Pereira FMV, Neves LAS, Castrighini CC, Gir E. Quality of life in women with HIV/AIDS in a municipality in the state of São Paulo. Rev Esc Enferm USP 2011; 45:230-6..

Participants younger than 47 years old had worse quality of life in all domains with the exception of the independence level domain. Significant differences remained after adjustment for other socio-demographic factors. Other studies found higher scores for quality of life in younger patients (13)13  Pereira M, Canavarro MC. Gender and age differences in quality of life and the impact of psychopathological symptoms among HIV-infected patients. AIDS Behav 2011; 15:1857-69. ^, (14)14  Belak Kovacević S, Vurusić T, Duvancić K, Macek M. Quality of life of HIV-infected persons in Croatia. Coll Antropol 2006; 30:79-84.. Age groups with different cutoffs and populations with different cultural aspects could explain this fact. Zimpel & Fleck (8)8  Zimpel RR, Fleck MPA. Quality of life in HIV-positive Brazilians: application and validation of the WHOQOL-HIV, Brazilian version. AIDS Care 2007; 19:923-30. found similar results to ours in their study also conducted in southern Brazil, using the WHOQOL-HIV instrument, which originated the WHOQOL-HIV Bref instrument used in our study. Although the effect of HIV infection may be added to the immunosenescence process (27)27  Deeks SG. HIV infection, inflammation, immunosenescence and aging. Annu Rev Med 2011; 62:141-55., contributing to a poorer quality of life in older people, this effect may not be valid for all domains of quality of life and be influenced by socio-cultural aspects. In particular, the spirituality domain points to a gradual increase in quality of life scores with advancing age. The results of the present study may be partly explained by Silva et al. (28)28  Silva J, Saldanha AAW, Azevedo RLW. Variáveis de impacto na qualidade de vida de pessoas acima de 50 anos HIV+. Psicol Reflex Crít 2010; 23:56-63. who reported that older people are less anxious about future events, including death and dying and suffer less of an impact of AIDS in their intimacy.

Not having a stable relationship was associated with poorer quality of life in the social relationships and environment domains, which is consistent with other results reported in the literature (9)9  Razera F, Ferreira J, Bonamigo RR. Factors associated with health-related quality of life in HIV-infected Brazilians. Int J STD AIDS 2008; 19:519-23. ^, (14)14  Belak Kovacević S, Vurusić T, Duvancić K, Macek M. Quality of life of HIV-infected persons in Croatia. Coll Antropol 2006; 30:79-84.. Long-term partnership provides better social support (29)29  Seidl EMF, Zannon CMLC, Tróccoli BT. Pessoas vivendo com HIV/AIDS: enfrentamento, suporte social e qualidade de vida. Psicol Reflex Crít 2005; 18:188-95., and, in addition, the need to disclose HIV status to a single person, the partner, reduces one of the biggest anxieties of seropositive individuals (14)14  Belak Kovacević S, Vurusić T, Duvancić K, Macek M. Quality of life of HIV-infected persons in Croatia. Coll Antropol 2006; 30:79-84..

Subjects were also asked about their perception of social support in relation to their HIV condition. A significant association was found between not feeling supported socially and having lower quality of life scores in five out of the six domains. People living with HIV/AIDS often suffer from social isolation, discrimination and marginalization, suggesting a strong impact from HIV on the social aspects of quality of life (14)14  Belak Kovacević S, Vurusić T, Duvancić K, Macek M. Quality of life of HIV-infected persons in Croatia. Coll Antropol 2006; 30:79-84. and reinforcing the importance of forming a social network to support HIV patients. The level of independence domain evaluates issues related to mobility, activities of daily living, dependence on medication or treatments and ability to work. There was no significant association between social support and this domain. Probably the question most social support refers to feelings and perceptions of the individual related to their status as HIV positive than the practical issues of everyday life.

The literature shows a trend of considering the existence of a stable relationship as a likely source of social support for people living with HIV/AIDS (30)30  Ferreira BE, Oliveira IM, Paniago AMM. Qualidade de vida de portadores de HIV/AIDS e sua relação com linfócitos CD4+, carga viral e tempo de diagnóstico. Rev Bras Epidemiol 2012; 15:75-84.. Due to the inclusion of questions about social support and marital status in our instrument our results showed differences between partnership and social support in the impact of quality of life, with a potential positive effect for social support regardless of maintaining a stable relationship.

Participants with low education levels with up to eight years of schooling, had lower quality of life scores in all domains, with the lowest score at the independence level domain, which assesses ability to work and daily activities, among other issues. Belak et al. (14)14  Belak Kovacević S, Vurusić T, Duvancić K, Macek M. Quality of life of HIV-infected persons in Croatia. Coll Antropol 2006; 30:79-84. and Gaspar et al. (10)10  Gaspar J, Reis RK, Pereira FMV, Neves LAS, Castrighini CC, Gir E. Quality of life in women with HIV/AIDS in a municipality in the state of São Paulo. Rev Esc Enferm USP 2011; 45:230-6. also found that higher education promotes better quality of life. Higher educational level often provides financial benefits and is directly related to employment and monthly income (10)10  Gaspar J, Reis RK, Pereira FMV, Neves LAS, Castrighini CC, Gir E. Quality of life in women with HIV/AIDS in a municipality in the state of São Paulo. Rev Esc Enferm USP 2011; 45:230-6.. People who have higher education possibly are more integrated in society and may have a better social network of family and friends (31)31  Van Vu T, Larsson M, Pharris A, Diedrichs B, Nguyen HP, Nguyen CTK, et al. Peer support and improved quality of life among persons living with HIV on antiretroviral treatment: a randomised controlled trial from north-eastern Vietnam. Health Qual Life Outcomes2012; 10:53..

Unemployment was associated with poorer quality of life in most domains, with the exception of spirituality. Similar results were found by Pereira & Canavarro (13)13  Pereira M, Canavarro MC. Gender and age differences in quality of life and the impact of psychopathological symptoms among HIV-infected patients. AIDS Behav 2011; 15:1857-69. and Razera et al. (9)9  Razera F, Ferreira J, Bonamigo RR. Factors associated with health-related quality of life in HIV-infected Brazilians. Int J STD AIDS 2008; 19:519-23.. The worst results were found among unemployed participants in the independence level domain; the best results were found among employed participants in the social relationship domain, which assesses social inclusion. According to Gaspar et al. (10)10  Gaspar J, Reis RK, Pereira FMV, Neves LAS, Castrighini CC, Gir E. Quality of life in women with HIV/AIDS in a municipality in the state of São Paulo. Rev Esc Enferm USP 2011; 45:230-6., being employed is a source of social structure, bringing positive feelings of usefulness for the individual. These results suggest that being employed can mean more than just financial benefits for these people (13)13  Pereira M, Canavarro MC. Gender and age differences in quality of life and the impact of psychopathological symptoms among HIV-infected patients. AIDS Behav 2011; 15:1857-69..

Low socioeconomic status was directly related to lower scores in all domains, which persisted after the adjustment for other sociodemographic factors. A similar result was found by Zimpel & Fleck (8)8  Zimpel RR, Fleck MPA. Quality of life in HIV-positive Brazilians: application and validation of the WHOQOL-HIV, Brazilian version. AIDS Care 2007; 19:923-30., using the WHOQOL-HIV instrument and the same socioeconomic classification as our study, and Gaspar et al. (10)10  Gaspar J, Reis RK, Pereira FMV, Neves LAS, Castrighini CC, Gir E. Quality of life in women with HIV/AIDS in a municipality in the state of São Paulo. Rev Esc Enferm USP 2011; 45:230-6., using WHOQOL-HIV Bref. Both studies evaluated quality of life in Brazilian populations. Personal income is partly determined by prior educational qualification and professional status, and these factors are associated with better quality of life (32)32  Martikainen P, Adda J, Ferrie JE, Smith GD, Marmot M. Effects of income and wealth on GHQ depression and poor self-rated health in white collar women and men in the Whitehall II study. J Epidemiol Community Health 2003; 57:718-23.. Moreover, income is a factor directly related to the conditions of health and functional capacity of the individual, and there is a relationship between low income and impaired health status (33)33  Fonseca MG, Bastos FI, Derrico M, Andrade CLT, Travassos C, Szwarcwald CL. AIDS e grau de escolaridade no Brasil: evolução temporal de 1986 a 1996. Cad Saúde Pública 2000; 16 Suppl 1:S77-87..

Tostes et al. (34)34  Tostes MA, Chalub M, Botega NJ. The quality of life of HIV-infected women is associated with psychiatric morbidity. AIDS Care 2004; 16:177-86. had already written that the presence of mental symptoms is one of the factors that limit quality of life in people living with HIV/AIDS. Souza Junior et al. (35)35  Souza Junior PRB, Szwarcwald CL, Castilho EA. Self-rated health by HIV-infected individuals undergoing antiretroviral therapy in Brazil. Cad Saúde Pública2011; 27 Suppl 1:S56-66. found that depression and anxiety were more frequent in seropositive patients than in the general population. In the present study, signs of depression and anxiety were related to lower scores in all domains, even after controlling for other variables. Among all variables, the lowest scores were attributed to participants with signs of depression in the independence level domain. Other authors (13)13  Pereira M, Canavarro MC. Gender and age differences in quality of life and the impact of psychopathological symptoms among HIV-infected patients. AIDS Behav 2011; 15:1857-69. ^, (36)36  Zimpel RR. Qualidade de vida, depressão e ansiedade em brasileiros HIV-positivos [Dissertação de Mestrado]. Porto Alegre: Faculdade de Medicina, Universidade Federal do Rio Grande do Sul; 2003. found negative correlations between the presence of depressive symptoms and anxiety with quality of life. Reis et al. (37)37  Reis AC, Lencastre L, Guerra MP, Remor E. Relação entre sintomatologia psicopatológica, adesão ao tratamento e qualidade de vida na infecção HIV e AIDS. Psicol Reflex Crít 2010; 23:419-29. highlighted that psychopathological symptoms negatively affect quality of life and adherence to antiretroviral treatment. Moreover, the literature reports that increased levels of stress and depression accelerate the deterioration of the immune system and disease progression (38)38  Leserman J. Role of depression, stress and trauma in HIV disease progression. Psychosom Med 2008; 70:539-45..

When we evaluated the data on drug use, we did not find associations with tobacco or alcohol abuse or dependence, however addiction to other psychoactive substances was independently associated with lower scores in the physical, the independence level and the environment domains. The literature presents contradictory results (31)31  Van Vu T, Larsson M, Pharris A, Diedrichs B, Nguyen HP, Nguyen CTK, et al. Peer support and improved quality of life among persons living with HIV on antiretroviral treatment: a randomised controlled trial from north-eastern Vietnam. Health Qual Life Outcomes2012; 10:53. ^, (36)36  Zimpel RR. Qualidade de vida, depressão e ansiedade em brasileiros HIV-positivos [Dissertação de Mestrado]. Porto Alegre: Faculdade de Medicina, Universidade Federal do Rio Grande do Sul; 2003. ^, (39)39  Korthuis PT, Zephyrin LC, Fleishman JA, Saha S, Josephs JS, McGroth MM, et al. Health-related quality of life in HIV-infected patients: the role of substance use. AIDS Patient Care STDS 2008; 22:859-67. ^, (40)40  Tran BX. Quality of life outcomes of antiretroviral treatment for HIV/AIDS patients in Vietnam. PLoS One 2012; 7:e41062. most likely due to the different classifications of the types of substances and different assessment instruments (41)41  Nahvi S, Cooperman NA. Review: the need for smoking cessation among HIV-positive smokers. AIDS Educ Prev 2009; 21:14-27. ^, (42)42  Patel N, Talwar A, Reichert VC, Brady T, Jain M, Kaplan MH. Tobacco and HIV. Clin Occup Environ Med 2006; 5:193-207., thereby limiting comparisons between results. People who are addicted to any type of drug, legal or illegal, live with many health risks such as imprisonment, and this may interfere with health care (32)32  Martikainen P, Adda J, Ferrie JE, Smith GD, Marmot M. Effects of income and wealth on GHQ depression and poor self-rated health in white collar women and men in the Whitehall II study. J Epidemiol Community Health 2003; 57:718-23..

Subjects with comorbidities and those who had a history of HIV related hospitalizations have lower quality of life scores in the environmental (hospitalizations), physical and independence level domains (hospitalizations and comorbidities). The presence of other symptoms and the use of a larger number of medication, with greater potential for side effects, may contribute to this result (30)30  Ferreira BE, Oliveira IM, Paniago AMM. Qualidade de vida de portadores de HIV/AIDS e sua relação com linfócitos CD4+, carga viral e tempo de diagnóstico. Rev Bras Epidemiol 2012; 15:75-84. ^, (43)43  Cardona-Arias J, Peláez-Vanegas L, López-Saldarriaga J, Duque-Molina M, Leal-Álvarez O. Calidad de vida relacionada con la salud en adultos con VIH/Sida, Medellín, Colombia, 2009. Biomédica (Bogotá); 31:532-44., creating a sense of dependency, affecting daily lives and limiting personal physical capacities.

The antiretroviral therapy that is currently available is able to significantly change the morbidity and mortality associated with HIV/AIDS (44)44  Oguntibeju OO. Quality of life of people living with HIV and AIDS and antiretroviral therapy. HIV AIDS (Auckl) 2012; 4:117-24.. In our sample, we found an independent relationship only with the environment domain, with the worst scores among participants who have never used the medication. It seems that patients feel more comfortable and secure while taking it, regaining a sense of well-being and hope for the future (36)36  Zimpel RR. Qualidade de vida, depressão e ansiedade em brasileiros HIV-positivos [Dissertação de Mestrado]. Porto Alegre: Faculdade de Medicina, Universidade Federal do Rio Grande do Sul; 2003.. Nevertheless, several side effects have been strongly linked with antiretroviral therapy. Among them, lipodystrophy is one that is particularly worrying, because it is responsible for changes in body shape. Patients perceive these changes as visible marks that identify them as having HIV, which can impact their psychosocial well-being and self-esteem, affect daily activities, and adherence to treatment (45)45  Fernandes APM, Sanches RS, Mill J, Lucy D, Palha PF, Dalri MCB. Síndrome da lipodistrofia associada com a terapia anti-retroviral em portadores do HIV: considerações para os aspectos psicossociais. Rev Lationam Enferm 2007; 15:1041-5.. In this study, participants who reported body changes after the initiation of antiretroviral therapy had significantly worse scores in the physical, psychological and independence level domains in the adjusted analysis.

Concerning the CD4+ count, we found an independent relationship with the physical and independence level domains, with the worst scores among participants with CD4+ cells ≤ 350. The quality of life studies with people living with HIV/AIDS used different cutoff points for CD4+, most likely in accordance with the current guidelines at the time the study was conducted. Nevertheless all studies show that the lower the CD4+ count, the poorer the quality of life (30)30  Ferreira BE, Oliveira IM, Paniago AMM. Qualidade de vida de portadores de HIV/AIDS e sua relação com linfócitos CD4+, carga viral e tempo de diagnóstico. Rev Bras Epidemiol 2012; 15:75-84. ^, (40)40  Tran BX. Quality of life outcomes of antiretroviral treatment for HIV/AIDS patients in Vietnam. PLoS One 2012; 7:e41062.. It is within reason to think that patients with low CD4+ counts experience a negative effect on their quality of life because they are more prone to disease symptoms, opportunistic infections and are likely to use more medication (26)26  Chandra PS, Gandhi C, Satishchandra P, Kamat A, Desai A, Ravi V, et al. Quality of life in HIV subtypes C infection among asymptomatic subjects and its association with CD4 counts and viral loads: a study from South India. Qual Life Res 2006; 15:1597-605. ^, (30)30  Ferreira BE, Oliveira IM, Paniago AMM. Qualidade de vida de portadores de HIV/AIDS e sua relação com linfócitos CD4+, carga viral e tempo de diagnóstico. Rev Bras Epidemiol 2012; 15:75-84..

It is important to highlight that only the most recent test result of CD4+ within the last six months preceding the interview was used for our analysis. Therefore, it is possible that the association between the CD4+ count and the quality of life refer to different time periods, as the assessment tool used (WHOQOL-HIV Bref) focuses on the past two weeks.

One limitation of this study is that the cross-sectional design does not allow conclusions about the causality between quality of life and socio-demographic and clinical variables. In addition, there could have been an under-representation of people with a history of addiction, as this population is less likely to be receiving medical care due to the stigma associated with drug use. ASSIST, a screening tool that has been validated and adapted for the Brazilian population, was used to measure this variable. In relation to the clinical stage of infection, the HIV/AIDS guidelines in force at the time of data collection were followed. However, the categorization used was notified at some time during the infection, which cannot take into account the current clinical stage of the participant. The sample selection must be considered when interpreting our findings. Samples selected from the university reference services, as in our study, tend to recruit people in better living conditions and health, and may consequently overestimate quality of life scores. One can expect lower scores for excluded populations and services with fewer resources (11)11  Santos ECM, França Júnior I, Lopes F. Qualidade de vida de pessoas vivendo com HIV/AIDS em São Paulo. Rev Saúde Pública 2007; 41:64-71.. As the SAS-Pelotas is the only treatment and medication dispensation center for people living with HIV/AIDS in the city, it is unlikely that this factor has significantly influenced our results.

It was observed that some clinical and socio-demographic characteristics were independently associated with poorer quality of life in different domains. It is important to emphasize that the co-occurrence of these factors may accentuate the poorer results found for quality of life.

Conclusions

Quality of life in this sample of people living with HIV/AIDS was influenced by factors beyond the physical and biological domains and was related directly to economic and social issues. Thus, an interdisciplinary assessment of this population is needed. Socio-demographic and lifestyle data should be considered in physical and clinical assessments given its strong association with the domains of quality of life in people living with HIV/AIDS.

Based on these results, we suggest that health care policies for this population should include programs that promote: (a) access to education; (b) reintegration into the labor market; and (c) other actions that aid financial independence. Employment, beyond its purpose as a source of funding, helps to minimize the stress related to HIV infection, provides opportunities for socialization and serves to improve quality of life.

In addition, the present study emphasizes the importance of social and emotional support in the context of HIV infection. Regardless of the source of this support, it is possible that these patients face the disease with less psychological distress and greater adherence to follow-up programs. The identification and effective management of psychopathological symptoms and abuse of or dependence on illicit drugs are essential in people living with HIV/AIDS due to their significant impact on quality of life. It is strongly recommended that instruments that are easy to apply for this purpose should be included in the clinical interview.

Physicians and health professionals assisting this population should be aware of the factors that affect the quality of life of people living with HIV/AIDS, and the assessment of quality of life must be added to the physical and clinical evaluation of these patients. Living better it is not merely living longer.

Acknowledgments

We thank the Catholic University of Pelotas (UCPel) for their financial support.

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