An evaluation of quality of life and its determinants among people living with HIV / AIDS from Southern Brazil

This cross-sectional study evaluated the quality of life and its associated factors among people living with HIV/AIDS at a regional reference center for the treatment of HIV/AIDS in southern Brazil. WHOQOL-HIV Bref, ASSIST 2.0, HAD Scale, and a questionnaire were used to assess 625 participants on quality of life, clinical and sociodemographic characteristics, drug use, depression and anxiety. Multivariate analysis was performed through linear regression. The lowest results for quality of life were associated with being female, age (< 47 years), low education levels, low socioeconomic class, unemployment, not having a stable relationship, signs of anxiety and depression, abuse or addiction of psychoactive substances, lack of perceived social support, never taking antiretroviral medication, lipodystrophy, comorbidities, HIV related hospitalizations and a CD4+ cell count less than 350. Psychosocial factors should be included in the physical and clinical evaluation given their strong association with quality of life domains. Quality of Life; HIV; Acquired Inmunodeficiency Syndrome Resumo Este estudo transversal avaliou a qualidade de vida e seus fatores associados em pessoas vivendo com HIV/AIDS em um centro de referência regional para o tratamento desta enfermidade no Sul do Brasil. WHOQOL-HIV Bref, a ASSIST 2.0, HAD Escala e um questionário foram utilizados para avaliar 625 participantes sobre a qualidade de vida, características clínicas e sociodemográficas, uso de drogas, depressão e ansiedade. A análise multivariada foi realizada por regressão linear. Pior qualidade de vida foi associada com sexo feminino, idade (< 47 anos), baixa escolaridade, baixa classe socioeconômica, desemprego, não ter um relacionamento estável, um indicativo de ansiedade e depressão, abuso ou dependência de substâncias psicoativas, falta de apoio social percebido, nunca tomar a medicação antirretroviral, lipodistrofia, comorbidades, internações relacionadas ao HIV e contagem de células CD4+ < 350. Fatores psicossociais devem ser incluídos na avaliação física e clínica, dada a sua forte associação com os domínios de qualidade de vida. Qualidade de Vida; HIV; Síndrome de Imunodeficiência Adquirida http://dx.doi.or/10.1590/0102-311X00000514 Cad. Saúde Pública, Rio de Janeiro, 31(4):800-814, abr, 2015 ARTIGO ARTICLE 800 QUALITY OF LIFE AND HIV/AIDS 801 Cad. Saúde Pública, Rio de Janeiro, 31(4):800-814, abr, 2015 Introduction With medical progress, diseases once considered to be lethal have become treatable and the symptoms can be controlled, thereby increasing life expectancy 1. HIV infection is no longer a threat of eminent death but is instead a chronic condition associated with a higher life expectancy 2. However the social stigma and side effects of medication, such as lipodystrophy, interfere with the well-being of patients 3.Therefore, it has become particularly important to assess how people living with HIV/AIDS are living longer 1. There is a growing concern about quality of life among people living with HIV/AIDS 4,5,6. 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 (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 8,9,10,11,12,13. However, one study has reported no differences in quality of life with regard to gender 14 and another has shown better quality of life among women 15. 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.

625 participants on quality of life, clinical and sociodemographic characteristics, drug use, depression and anxiety.Multivariate analysis was performed through linear regression.The lowest results for quality of life were associated with being female, age (< 47 years), low education levels, low socioeconomic class, unemployment, not having a stable relationship, signs of anxiety and depression, abuse or addiction of psychoactive substances, lack of perceived social support, never taking antiretroviral medication, lipodystrophy, comorbidities, HIV related hospitalizations and a CD4+ cell count less than 350.Psychosocial factors should be included in the physical and clinical evaluation given their strong association with quality of life domains.

Introduction
With medical progress, diseases once considered to be lethal have become treatable and the symptoms can be controlled, thereby increasing life expectancy 1 .HIV infection is no longer a threat of eminent death but is instead a chronic condition associated with a higher life expectancy 2 .However the social stigma and side effects of medication, such as lipodystrophy, interfere with the well-being of patients 3 .Therefore, it has become particularly important to assess how people living with HIV/AIDS are living longer 1 .
There is a growing concern about quality of life among people living with HIV/AIDS 4,5,6 .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 (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 8,9,10,11,12,13 .However, one study has reported no differences in quality of life with regard to gender 14 and another has shown better quality of life among women 15 .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 .In addition, no significant differences were found in the results when the two methods (structured interviews vs. self-administered) were compared 17 .
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 (part-Cad.Saúde Pública, Rio de Janeiro, 31(4):800-814, abr, 2015 nership 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 and the Brazilian Ministry of Health 19 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 20,21 .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 .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 .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 .The instrument is based on the WHOQOL-Bref, the shorter form of the WHOQOL-100 25 and is used on a large scale in several countries 10,13,14,26 including Brazil 10 .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 , 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 .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 .
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 13,14 .Age groups with different cutoffs and populations with different cultural aspects could explain this fact.Zimpel & Fleck 8 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 , 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 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 9,14 .Long-term partnership provides better social support 29 , 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 .
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 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.
Cad. Saúde Pública, Rio de Janeiro, 31(4):800-814, abr, 2015 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 , using the WHOQOL-HIV instrument and the same socioeconomic classification as our study, and Gaspar et al. 10 , 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 .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 .
Tostes et al. 34 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 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 13,36 found negative correlations between the presence of depressive symptoms and anxiety with quality of life.Reis et al. 37 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 .
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 31,36,39,40 most likely due to the different classifications of the types of substances and different assessment instruments 41,42 , 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 .
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 great-er potential for side effects, may contribute to this result 30,43 , 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 .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 .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 .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 30,40 .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 26,30 .
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 crosssectional 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 .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 sociodemographic 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.

Calidad de Vida; VIH; Síndrome de Inmunodeficiencia Adquirida
Contributors S. M. K. Passos and L. D. M. Souza contributed to the conception and design of the study, the acquisition, analysis, and interpretation of data; they participated in the drafting of the article and revised it critically for important intellectual content and approved the version to be published.Both authors agreed to be accountable for all aspects of the study in ensuring that questions related to the accuracy or integrity of any part of the study are appropriately investigated and resolved.

Table 1
Sociodemographic characteristics of people living with HIV/ AIDS attending the Special Assistance Services for HIV/AIDS in Pelotas, Rio Grande do Sul State, Brazil (SAS-Pelotas), from December 2011 to June 2012 (N = 625).

Table 2
Clinical characteristics of people living with HIV/AIDS attending the Special Assistance Services for HIV/AIDS in Pelotas, Rio Grande do Sul State, Brazil (SAS-Pelotas), from December 2011 to June 2012 (N = 625).

Table 3
Mean differences among quality of life domains of 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 (N = 625).