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Ciência & Saúde Coletiva

Print version ISSN 1413-8123

Ciênc. saúde coletiva vol.20 no.4 Rio de Janeiro Apr. 2015

https://doi.org/10.1590/1413-81232015204.00522014 

Article

Quality of life of people living with HIV/AIDS treated by the specialized service in Vitória-ES, Brazil

Gabriella Barreto Soares 1  

Cléa Adas Saliba Garbin 1  

Tânia Adas Saliba Rovida 1  

Artênio José Ísper Garbin 1  

1Departamento de Odontologia Infantil e Social, Faculdade de Odontologia de Araçatuba, Universidade Estadual Paulista Júlio de Mesquita Filho. R. José Bonifácio 1193, Vila Mendonça. 16015-050 Araçatuba SP Brasil. gabriella.barreto@yahoo.com.br


ABSTRACT

The aim of this study is to establish the factors that influence the quality of life of people living with HIV/AIDS being treated at a specialized public service. The participants answered the questionnaire on sociodemographic conditions, issues related to HIV and daily habits. The quality of life was analyzed using the HIV/AIDS-targeted quality of life (HAT-QoL) instrument with 42 items divided into 9 fields: General Activity, Sexual Activity, Confidentiality Concerns, Health Concerns, Financial Concerns, HIV Awareness, Satisfaction with Life, Issues related to Medication and Trust in the Physician. Bivariate and multiple linear regressions were performed. Of the participants, 53.1% were women and had a mean age of 42 years. In analyzing the quality of life, the HAT-QoL domain with the lowest average was Financial Concerns (39.4), followed by Confidentiality Concerns (43.2), Sexual Activity (55.2) and Health Concerns (62. 88). There was an association between the variables: not being gainfully employed (p < 0.001), being mulatto or black (p = 0.045) and alcohol consumption (p = 0.041) with the worst quality of life scores. Inadequate socioeconomic and health conditions had a negative impact on the quality of life of people with HIV/AIDS.

Key words: HIV; Quality of life; Health services

RESUMO

O objetivo do presente estudo é verificar os fatores que influenciam na qualidade de vida das pessoas que vivem com HIV/AIDS assistidas no serviço especializado. Os entrevistados responderam os questionários sobre condições sociodemográficas, aspectos relacionados ao HIV e hábitos. A qualidade de vida foi analisada por meio do instrumento HAT-QoL, com 42 itens divididos em nove domínios: Atividade Geral, Atividade Sexual, Preocupações com Sigilo, Preocupação com a Saúde, Preocupação Financeira, Conscientização sobre o HIV, Satisfação com a Vida, Questões relativas à medicação e Confiança no médico. Análises bivariadas e regressão linear múltipla foram realizadas. Dos entrevistados, 53,1% eram mulheres e tinham média de idade de 42 anos. Na análise da qualidade de vida, o domínio do HAT-QoL com menor média foi Preocupação financeira (39,4), seguido de Preocupação com sigilo (43,2), Atividades sexuais (55,2) e Preocupação com a saúde (62,88). Houve associação entre as variáveis não ter vínculo trabalhista (p < 0,001), ser pardo ou negro (p = 0,045) e consumir bebida alcoólica (p = 0,041), com piores escores da qualidade de vida. Condições socioeconômicas e de saúde inadequadas apresentaram impacto negativo na qualidade de vida das pessoas com HIV/AIDS.

Palavras-Chave: HIV; Qualidade de vida; Serviços de saúde

Introduction

More than 30 years since the discovery of the first case of HIV / AIDS in the world,the Acquired Immunodeficiency Syndrome (AIDS) is still considered a major problem for public health. Despite scientific advances and investments for control and therapy, there is a continuous growth of the infection in the population. Only in Brazil are recorded, on average, 35,000 new cases of AIDS per year1 , 2.

Worldwide, it is estimated that in 2012 there were 35.3 million people between men, women and children infected with HIV. Only in 2012, 2.3 million people were infected with HIV and 1.6 million died from AIDS, mostly due to inadequate access to treatment and attention services3. In Brazil, since the identification of the first case of AIDS, from 1980 until June 2012, 656,701 cases were identified, with more than 253,706 deaths, which have the underlying cause defined as "diseases by the HIV virus." The disease is concentrated in sub-populations aged 20 to 59 years, with 11 years of study and a gender ratio of 1.7 men for every woman with AIDS2.

Advances in antiretroviral therapy (ART) led to a reduction in morbidity and mortality from AIDS, and population studies show improvement in survival of patients with this disease, having at 25, a median life expectancy of 32.5 years from the moment they start the treatment4.

In 1996, in a pioneering and innovative way, Brazil signed the law guaranteeing universal free access to medicines for people with HIV / AIDS5 , 6. This technological development has changed the profile of the epidemic in the sense of its chronicity, providing opportunities to individuals with HIV / AIDS to live better with the disease. That is, the antiretroviral therapy (ART) enabled the transformation of a syndrome that previously was culturally perceived as a result of a death foretold, in a disease with prospects of chronicity7.

This therapy has provided considerable benefits to its user, such as increased survival, decrease in hospitalizations and the occurrence of opportunistic complications and mortality associated with HIV / AIDS8. The Ministry of Health points out that ten years after the implementation of this policy in Brazil, 180,000 people were already receiving treatment in the country and there was a 34% reduction in mortality and morbidity in 70% of AIDS cases, considering only the period between 1996 and 2002.

With the improvement in life expectancy of these people, the quality of life becomes an important tool for evaluating the health of these individuals9. The variation in the Brazilian population's quality of life has created various social strata in which they operate vulnerable subgroups to HIV / AIDS, increasingly associated with the impoverishment process. This fact has contributed to situations of abandonment of treatment, worsening of the disease and, consequently, increased spending on treatment of complications of people living with HIV / AIDS10.

Little research has been conducted that evaluated the quality of life of people living with HIV / AIDS in Brazil. Thus, the present study investigated the quality of life associated with sociodemographic conditions, issues related to HIV, health habits of people living with HIV / AIDS assisted in the publicreference service in Vitoria (ES), Brazil.

Methodology

This is an exploratory quantitative study of cross-sectional analytical cut, held in the public health service provided to people living with HIV/AIDS, STD / AIDS Reference Center, which operates since 1992 in Vitoria (ES), Brazil.

Around 1,500 people living with HIV / AIDS are accompanied by the STD / AIDS Reference Centre, and on this basis, the sample size (n) was calculated by a Simple Random Sample, with a total of 177 patients, margin of error of 7% and a 95% confidence level. The sample selection was random, since they were attended to by the service. Included were patients with a confirmed diagnosis of HIV infection, above 18 years of age and who agreed to participate in the study.

Data collection was held for four months in 2012, after a pilot study in which all variables were tested.

The quality of life data were collected by a validated HAT-QoLinstrument, prepared by Holmes and Shea11, originally written in English, but translated and validated in Brazil by Galvão et al.12. This instrument was selected to be specific for assessing the quality of life of people living with HIV / AIDS, and has good psychometric properties, good internal consistency and evidence of construct validity. The HAT-QoL has 42 items divided into nine domains: General Activity, Sexual Activity, Secrecy concerns, Health Concerns, Financial Concerns, Awareness about HIV, Satisfaction with Life, Issues related to medication and Confidence in the doctor. The response for all items is obtained through a Likert scale that contains: all the time, most of the time, some of the time, a short time and no part of the time. For each question, only an option is written down that corresponds to that which best characterizes the last four weeks experienced by the patient. The scores are calculated according to the answers and range from one to five, with one representing a worst state and five in a better state or condition. The scores obtained in each domain are transformed into an index-weighted from 0-100, and the closer the index is to 100, the better the quality of life12.

The data relating to sociodemographic questions, issues related to HIV and habits were obtained through a structured questionnaire, developed specifically for this study. The sociodemographic variables include: nationality, age, gender, race, marital status, education, employment status and family income. Related to HIV and habits are: viral load, CD4 count, date of diagnosis of HIV infection mode, use of antiretroviral therapy, smoking habits, alcohol consumption, drug use and condom use before and after the diagnosis of the disease.

Descriptive analyzes were performed for the sociodemographic characterization of the population, through measures of central tendency (single frequency, mean and median) and measures of dispersion (standard deviation). The sample involved in the research set normal probability distributions, verified by the Kolmogorov and Smirnov tests (p = 0.100), and the hypotheses were verified with the help of parametric statistics.The region for the rejection or not any of these hypotheses considered a significance level of 0.05. Statistical analysis of variance (ANOVA) and multiple linear regression tests with elimination of non-significant variables were performed. The selection of independent variables for the multiple linear regression models was performed according to a stepwise model. After adjusting the multiple linear regression models, with a 95% confidence interval, the p - values were estimated. All statistical analyzes were performed using the SPSS version 17.0 software.

The study was approved by the Ethics in Research Committee with human beings of the Paulista State University, Araçatuba Dental School and performed with the understanding and written consent from each participant.

Results

Of the 177 study participants, more than half of the sample were women (53.1%), with a mean age of 42 years. Most were mixed (61.6%) and was not in a steady relationship (48.6%). As for education, 53.1% had eight years or less of schooling and 7.3% could not read and write. Of the respondents, 20.3% were not employed and 63.8% had a monthly income of one to two minimum wages (Table 1).

Table 1. Sociodemographic characteristics of people living with HIV / AIDS assisted at the HIV / AIDS Reference Center, Vitoria, Brazil. 2012. 

Variables Frequency %
Gender
Feminine 94 53.1
Masculine 83 46.9
Race
White 30 16.9
Black 38 21.5
Brown 109 61.6
Marital status
Single 86 48.6
Married 27 15.3
Widowed 13 7.3
Common Law 31 17.5
Separated/Divorced 20 11.3
Education
Illiterate 13 7.3
8 or < years of study 94 53.1
9 to 11 years of study 51 28.8
12 or > years of study 19 10.7
Work link
Employed 141 79.7
Unemployed 36 20.3
Family income
Less than 1 MS 18 10.2
1 to 2 MS 113 63.8
3 to 4 MS 33 18.6
More than 4 MS 10 5.7
None 3 1.7

Regarding the tests, 78.2% had CD4 counts greater than 350 cells / mm3, and 61.6% of undetectable viral load. As for the time of discovery of HIV diagnosis, 35.0% said they had more than 10 years, and 86.4% of patients were between 20 to 50 years when they received the result. The contamination was via heterosexual relationship in 55.9% of the respondents and 53.1% said they did not know how they contracted the virus. Most patients were ART users (77.4%). Of the patients, 77.4% did not smoke, 67.2% did not consume alcohol and 95.5% of patients said they did not make use of illicit drugs. Regarding the use of condoms during sexual intercourse, 67.8% said they always use and 6.8% said they never use, even after the discovery of contamination.

In assessing the QoL, the domain with the lowest average was Financial concern (39.4), followed by Concern with secrecy (43.2), Sexual activities (55.2) and Health concerns (62.88). And the highest averages were: Confidence in the doctor (96.18) and Issues related to medication (86.54) (Table 2).

Table 2. HIV / AIDS assisted in the HIV / AIDS Reference Center, Vitoria, Brazil. 2012. 

Domains Average SD Alpha Cronbach’s
Financial concern 39.40 33.94 0.67
Concerns about the confidentiality of infection 43.25 27.38 0.71
Sexual Activity 55.24 38.70 0.71
Health concerns 62.88 19.41 0.65
Awareness about HIV 74.99 32.40 0.62
General activity 75.86 24.46 0.64
Satisfaction with life 78.54 27.99 0.61
Issues related to medication 86.84 18.06 0.69
Confidence in the doctor 96.18 13.56 0.70

The results of the bivariate analysis between the mean values of the HAT-QoL domains with the sociodemographic variables, issues related to HIV, and health habits, can be seen in Tables 3 and 4.

Table 3. Bivariate analysis of standardized scores of the HAT-QoL domains according to sociodemographic variables of people living with HIV / AIDS assisted in the HIV / AIDS Reference Center, Vitoria, Brazil. 2012. 

Variables General Sexual Secrecy Health Financial
Activity Activity Concern Concern Concern
Age
18-34 81.8 65.4 35.1 55.6 48.4
35-44 76.4 59.5 41.2 61.8 30.7
45-70 71.8 45.2 49.8 68.0 42.2
P value 0.109 0.014 0.017 0.004 0.021
Gender
Feminine 72.0 45.8 39.0 58.8 33.1
Masculine 80.2 65.8 47.7 67.4 46.4
P value 0.025 0.001 0.041 0.003 0.009
Race
White 72.3 59.9 55.5 64.8 44.4
Black 76.3 52.8 40.2 63.5 42.1
Brown 76.6 54.7 40.9 62.1 37.0
P value 0.692 0.740 0.02 0.773 0.491
Marital Status
Single/ Common Law 80.2 54.8 45.2 62.9 38.8
Married 74.0 70.0 46.2 66.4 38.3
Widowed 63.0 12.8 36.5 61.1 43.7
Separated/Divorced 74.1 50.4 48.7 64.5 45.1
P value 0.114 0.000 0.216 0.687 0.900
Education
Illiterate 62.6 50.6 42.6 66.1 18.3
8 or < years of study 76.8 50.5 44.3 61.7 37.3
9 years or more of study 75.1 57.7 42.6 62.7 42.4
P value 0.162 0.079 0.921 0.683 0.015
Work link
Employed 84.4 69.7 36.7 64.4 46.7
Unemployed 67.9 41.8 49.2 61.4 32.5
P value 0.000 0.000 0.002 0.296 0.005
Family income
Less than 1 MS 57.0 41.6 52.5 56.1 18.0
1 to 2 MS 77.0 53.1 41.0 63.8 39.2
3 to 4 MS 83.7 68.6 47.2 66.2 53.5
More than 4 MS 84.4 55.0 36.0 61.0 49.0
P value 0.002 0.146 0.684 0.557 0.006
Age
18-34 67,7 81,8 84,2 92,6
35-44 70,8 77,2 88,6 97,7
45-70 83,2 77,7 86,6 96,7
P value 0,021 0,687 0,476 0,157
Gender
Feminine 69,0 72,0 85,1 94,9
Masculine 81,7 85,8 88,7 97,5
P value 0,009 0,001 0,184 0,198
Race
White 82,5 75,6 92,3 98,9
Black 76,9 81,8 87,2 99,1
Brown 72,2 78,1 85,1 94,4
P value 0,285 0,644 0,158 0,089
Marital Status
Single/ Common Law 73,8 80,0 88,0 97,9
Married 85,5 82,2 82,8 97,2
Widowed 64,7 64,9 89,8 91,6
Separated/Divorced 77,9 76,8 85,9 90,8
P value 0,312 0,425 0,722 0,177
Education
Illiterate 69,9 76,0 78,8 93,6
8 or < years of study 71,6 78,7 86,6 96,7
9 years or more of study 79,5 76,2 89,1 96,2
P value 0,325 0,663 0,335 0,834
Work link
Employed 77,9 85,3 88,7 95,9
Unemployed 72,2 72,2 85,0 96,3
P value 0,246 0,002 0,167 0,839
Family income
Less than 1 MS 72,2 60,5 89,5 92,1
1 to 2 MS 74,1 80,2 87,1 96,9
3 to 4 MS 81,3 82,7 86,3 97,4
More than 4 MS 76,8 94,4 85,0 96,6
P value 0,572 0,003 0,931 0,123

Table 4. Bivariate analysis of standardized scores of the HAT-QoL domains according to variables related to HIV and the habits of people living with HIV / AIDS assisted in the HIV / AIDS Reference Center, Vitoria, Brazil. 2012. 

In the multiple linear regression model for the Financial concern domain, it was associated with higher variable scores: higher level of education and do not smoke, while not having a work link was associated with lower scores (Table 5).

Table 5. Multiple linear regression for the quality of life variable of people living with HIV / AIDS assisted in the HIV / AIDS Reference Center, Vitoria, Brazil. 2012. 

HAT-Qol quality of life domains Explanatory variables B P value
Financial Concern (0.462) Presents 9 years or more of studies 10.430 0.002
Non smoker 19.784 0.002
No work link -15.601 0.004
Concern with secrecy (r = 0.311) More advanced age 7.534 0.007
Is brown or black -5.684 0.045
Sexual Activity (r = 0.318) No work link -19.943 0.001
Consumes alcoholic beverages -12.758 0.041
Health Concern (0.437) Is of the masculine gender 10.289 0.001
Does not use illicit drugs 20.722 0.006
Is 18 to 34 years of age 3.890 0.046

B = coefficient of the regression model, r= coefficient of determination.

In the Secrecy concern domain, older age was positively associated with better scores, while the fact that being brown or black had a negative association. There was a negative association to the Sexual activity domain, not having awork link and alcohol consumption.

In the analysis of the Heath concern domain, being male, have less age and not using illicit drugs were associated with higher scores on the QoL.

Discussion

Most patients attending the STD / AIDS Reference Center in Victoria were of poor income and had little schooling, as seen in the literature that HIV infection has greater weight on the disadvantaged and the socially marginalized13.

Another important aspect is in relation to contamination for heterosexual relationships, which is in agreement with the epidemiological profile of HIV for a few years now: heterosexuals and women, internalization and pauperization14 - 16.

In the analysis of the scores of the quality of life domains, the results showed that the lowest averages are: Financial concerns, Secrecy concerns, Sexual activity and Health concerns, results that corroborate the findings of other studies using the HAT-QoL scale11 , 12 , 17.

The obtained average rate (39.4), in the Financial concern domain probably was due to the low per capita income of the respondents, which hinders the survival of the individual. This finding may indicate that income, in addition todeterring its value linked to living conditions and services, may influence the health status, which further hinders their integration into the work force18. People living with HIV / AIDS who have no work links have a worse quality of life than those that work, and this is also observed in another study10. Therefore, the chronic disease brings new changes, including issues related to occupation, and employment does not only have the importance of financial benefit, but is also a form of social and emotional integration, and identity19 , 20.

The participants in this study, with regards to concern with secrecy, were even affected in the demand for health care because these patients stopped going to the doctor or other health professionals for fear of having to report that they have the HIV virus and suffer prejudice on account of the unpreparedness of the professional21. Therefore, concern about confidentiality is a very common situation among these individuals, which happens because of the fear of being seen as a carrier of a disease still very stigmatized by society. This makes having a double life, because only a few people from their friendships are chosen to know of their serological condition15.

Life with HIV / AIDS leads to changes in the sexual activity of people, and the conditions under which they find themselves due to infection lead to fear of sexual intercourse, which makes for avoiding relationships, even having sexual desires22.

This implies commitment in the sexual activity domain on the quality of life, and the fact that having no work links and alcohol consumption further strengthened to a worse quality of life.

The fear of being abandoned and rejected by the partner is an aspect due to the seropositivity of HIV, and is present in the lives of individuals with HIV / AIDS23. The possibility of maintaining emotional-sexual relationships is a key aspect in the lives of individuals with HIV / AIDS that contributes to a better QoL. The partner is an important source of emotional support, which can be expressed by the care and help in performing daily activities, monitoring the consultations stimulus for maintenance treatment, and social support from family, friends and partners associated with a better QoL24.

The concern with health domain investigates the concern of respondents in living with the virus and its consequences, and the self-assessment in relation to health, knowledge of laboratory parameters and the concern with a prognosis of death, situations that possibly prevent the well-being12. From this perspective, in the present study, the year of HIV diagnosis was associated with this domain for the reason that people with recent discovery of the infection do not accept the fact of the disease, which leads to discouragement with life and with health care, which implies low scores. In the multiple regression, the fact of not using illicit drugs had a positive association in this domain, which demonstrates the individual's care with their health and well-being.

Despite the impact of HIV / AIDS in the psychological health and social relationships of infected individuals, as well as life satisfaction, the use of ART led to a positive effect on the health, providing the deconstruction of the idea of death arising from the diagnostic of the carrier of HIV / AIDS and the construction of better prospects for life15. With the advent of ART, living with HIV / AIDS allowed for rethinking and reframing HIV infection, deconstructing the idea of death to a more human perspective, in which the individual lives better every day with HIV, allowing the reconstruction of professional projects and emotional life, with the insertion in the labor market and the establishment of affective-sexual links7.

The results showed sociodemographic and clinical characteristics of these individuals similar to other surveys conducted with Brazilian people living with HIV / AIDS10 , 12 , 20. There are some limitations in this study, such as the voluntary participation of respondents, which may have had moreindividuals concerned with their health and higher education. The study is of cross-sectional nature, which precludes causal inferences. Due to the nature of the study of anonymity, itis not possible to collect any information about those who did not answer the questionnaire completely. The instrument of quality of life, though it may be validated in Portuguese, and the educational level of the respondents may have had answers in which participants answered even without understanding the question.

Despite these limitations, the study shows that there are many factors that influence the quality of life of people living with HIV / AIDS, and socioeconomic and inadequate health conditions negatively influence the quality of life of these individuals. From these results, the need to implement public policies for social inclusion that promote better living conditions is evident, greater access to health services and the formal labor market, to foster the scope of citizenship and a better QoL for people living with HIV / AIDS.

Understanding the quality of life of these people is critical, considering the chronic course of infection, the possibility of treatment and longer survival and living with a stigmatizing, transmitted, incurable disease so far, with numerous biopsychosocial consequences that impact the quality of life.

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Received: July 06, 2014; Accepted: October 08, 2014

Collaborations GB Soares, CAS Garbin, TAS Rovida and AJI Garbin also participated in all stages of the preparation of the article.

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