Quality of life of people living with HIV/AIDS in São Paulo, Brazil
Elisabete Cristina Morandi dos SantosI; Ivan França JuniorII; Fernanda LopesI
IPrograma de Pós-Graduação em Saúde Pública. Faculdade Saúde Pública (FSP). Universidade de São Paulo (USP). São Paulo, SP, Brasil
IIDepartamento de Saúde Materno-Infantil. FSP-USP. São Paulo, SP, Brasil
OBJECTIVE: To assess quality of life of people living with HIV/AIDS.
METHODS: Cross-sectional study conducted in an AIDS outpatient service based on consecutive sampling during the second half of the year 2002. There were selected 365 men and women aged 18 years or older who were attended by the infectious disease physician. Sociodemographic and recent drug use variables and data on clinical conditions were obtained using a questionnaire and quality of life was analyzed using WHOQOL-bref.
RESULTS: Scores of the four domains (physical, psychological, social relationships and environment) were very similar. There were statistically significant differences in mean scores for the environment domain according to skin color, with blacks and pardos having lower scores. Women also had the lowest scores for the psychological and environmental domains. Higher income was significantly associated to higher scores in all domains of quality of life, except for the social relationships domain. Subjects with CD4+ cell counts below 200 cells/mm3 had lower scores for the physical domain. In all domains significantly lower scores were seen for those receiving psychiatric treatment or with an indication for such treatment.
CONCLUSIONS: Despite differences in sex, skin color, income, and mental and immunological status, people living with HIV/AIDS have better (physical and psychological) quality of life than other patients but lower quality in social relationships domain. The latter domain could reflect stigmatization and discrimination associated to the difficulties of disclosing their HIV status in social settings and for a safe sex life.
Key words: Acquired immunodeficiency syndrome, psychology. Quality of life. Life style. Socioeconomic factors. Cross-sectional studies.
From 1980 to June 2006, 433,067 AIDS cases were notified in Brazil. Between 1995 and 2004, the disease incidence rate increased from 14.1 to 19.7 per 100,000 inhabitants while its mortality rate decreased from 8.7 to 6.2 per 100,000 inhabitants.1 This case/death dissociation can be attributable to the introduction of highly active antiretroviral therapy (HAART)2 and, starting from 1996, its universal free distribution to around 170,000 HIV-infected people in Brazil. As survival of infected people increases, the focus shifts to their quality of life.
The term quality of life is applied in everyday language and in several different area of knowledge and work. Quality of life has recently been scientifically defined and it has been employed as synonymous of health status, functional status, psychological well-being, life happiness, need satisfaction and assessment of one's own life.3
Studies on people living with HIV/AIDS have used the term health-related quality of life (HRQOL)5,7,4 to assess the impact of health on social activities and mobility focusing whether there are or not signs and symptoms and effects of new drugs or health interventions.7 HRQOL assessment does not include aspects such as the level of satisfaction with one's own life, especially regarding to income, housing conditions, employment, environment, sexuality, among others.
Published studies on quality of life of people living with HIV/AIDS in Brazil4,10-11 used a variety of questionnaires.
The purpose of the present study was to assess quality of life scores of people living with HIV/AIDS.
A cross-sectional study based on a non-probabilistic consecutive sample of patients attending an AIDS service called "Casa da Aids" was conducted between September 23 and December 18, 2002. Casa da Aids is a specialized university service lovated in downtown city of São Paulo that, at the time of the study, had enrolled 4,000 patients.
Eligible patients were those living with HIV/AIDS, 18 years or older, who attended periodical consultations with an infectious disease specialist. Patients attending visits for diagnosis confirmation or who had a medical status that prevented their participation were excluded.
The estimated sample size was 385 subjects based on previous studies, 95% confidence level and 2% standard error of mean.1,5 The first six patients coming in for their periodical visit with the infectious disease specialist, at the three different visit hours and in all days of the week during the study period, were invited to participate. Of 392 patients invited, 365 accepted to participate, 25 refused and two did not complete all interviews.
Sociodemographic and recent drug use information were obtained through a self-administered questionnaire and data related to medical status, such as HIV exposure category and signs and symptoms in the last three months, were collected from medical records.
Quality of life was assessed using the WHOQOL-bref2,4,13 questionnaire applied by trained interviewers. The WHOQOL-bref is an easy-to-use instrument developed by the World Health Organization (WHO) and validated in Brazilian Portuguese.2
The WHOQOL-bref comprises 26 items whose answers should refer to situations occurring within two weeks prior to the interview and is divided into four domains: physical health, psychological health, social relationships, and environment. The physical health domain measures pain and discomfort; energy and fatigue; sleep and rest; mobility; daily life activities; dependence on medications or treatments; and work capacity. The psychological health domain measures positive feelings; thinking, learning, memory and concentration; self-esteem; bodily image and appearance; negative feelings; spirituality, religion and personal beliefs. The social relationships domain includes personal relationships; social support; and sexual activity. And the environment domain measures physical safety and security; home environment; financial resources; health and social care: accessibility and quality, opportunities for acquiring new information and skills; participation in and opportunities for recreation and leisure activities; physical environment (pollution, noise, traffic, climate and transport).5
The equation suggested by WHO2 was applied to overall estimation of each domain with scores ranging between four and 20. Data statistics were means, standard deviations, minimum and maximum values, and medians. Kolmogorov-Smirnov test was used to assess normality of distributions.
For the analysis of potential differences between mean scores of quality of life, t-Student or Mann-Whitney tests and variance analysis or Kruskal-Wallis test were applied when needed. For the sake of result interpretation, scores between 4 and 10 were considered as low level; between 10 and 14.9 as intermediate level; and between 15 and 20 as high level.6 Multiple comparisons of means were performed using Tukey's HSD (honestly significant differences) test.
The study protocol was approved by the ethics committees of Faculdade de Medicina and Faculdade de Saúde Pública of Universidade de São Paulo. Interviews and medical record consultations were carried out after subjects had read and signed the free informed consent form.
Mean age of 365 interviewees was 39.3 years (SD = 9.1 years), about half were male and 40% were single. More than half of them self-referred as white, 31% as mulatto, and 98% as black. Median income was R$ 600.00, and 15% of interviewees reported having no income (Table 1).
Median CD4+ cell count was 343 cells/mm3.
Mean time elapsed since they knew their HIV-positive status was five years, and 315 interviewees (86.5%) were on antiretroviral therapy (ARVs). Most subjects have neither indication for psychiatric care nor were being followed up for any psychiatric conditions three months prior to the interview (Table 1).
Table 2 shows scores of quality of life domains. It can be noted that mean scores were similar in all domains.
Table 3 shows sociodemographic information and mean scores of quality of life domains and their respective mean differences.
Comparison of mean raw scores of quality of life in men and women showed a statistically significant difference in the environment and psychological health domains with lower scores for women in both domains.
A statistically significant difference between score means was found for skin color in the environment domain. Multiple comparisons using Tukey test showed white subjects had better scores than pardo and black.
These comparisons also revealed significant differences in the physical health domain: lower scores were seen among subjects who did not attend school or completed middle school education compared to those with higher education. In the environment domain, there were similar differences and lower scores were seen among those with middle school education or no education and higher scores were found among those with higher education.
Tukey's multiple comparisons multiple for income (in minimum monthly wages, MMW) in the physical health domain revealed lower scores for those with no income or income up to three MMWs compared to those with income equal to or greater than five MMWs. In the social relationships domain, there was a statistically significant difference only for those with income between one to three MMWs and those with income equal to or greater than nine MMWs.
In the environment domain, the same pattern was seen in those with lower income (lower than 3 MMWs or no income) who had lower scores of quality of life.
Clinical and epidemiological characteristics of subjects are presented in Table 4 as well as mean scores of quality of life domains along with their respective mean differences.
There were no statistically significant differences between quality of life domains and current use of ARVs, age, marital status, living with a partner, having had sex within one month prior to the interview, HIV infection route and cigarette smoking within one month prior to the interview.
Subjects who had indication for or were receiving psychiatry care within three months prior to the interview had significantly lower mean scores of quality of life in all domains.
Those who did not have any general signs and symptoms within three months prior to the interview had higher mean scores in the physical health domain.
There were no statistically significant differences in mean scores in the psychological health, social relationships and environment domains according to CD4+ cell count. Those with >350 CD4+ cells/mm3 in any domain had higher mean scores compared to other groups.
The variable time elapsed since HIV diagnosis indicated that subjects who knew their HIV status for two to five years had mean higher scores than those who knew it less than two years in the environment domain. There were statistically significant differences in mean scores of quality of life according to marijuana and inhaled cocaine use within three months prior to the study (Table 5).
People living with HIV/AIDS who attended Casa da AIDS in 2002 had quality of life scores in the physical and psychological health domains close to the high level (between 15 and 20) while their scores in the social relationships and environment domains fell in the intermediate level (between 10 and 14.9). In Belo Horizonte7 and Taiwan1,4 studies, lower results were found in the physical and psychological health domains with scores in the intermediate level. These differences can be partly explained by the diversity of the samples studied. Subjects of the present study were on ARVs for a long time while those studied in Belo Horizonte had recently started treatment. The sample of the Taiwan study was younger and had a greater proportion of men (96%) than Casa da AIDS sample and some interviewees were living in a shelter supported by a religious institution. Owing to non-random recruiting of subjects, the present study findings cannot be generalized to other specialized services. However, the consecutive sampling method used in this study has been considered one of the best non-probabilistic approaches.5
In the validation study of WHOQOL-bref in Brazil, Fleck et al2 verified that patients from different clinical specialties (outpatients and inpatients from internal medicine, psychiatric surgery, and gynecology) in a university hospital in Porto Alegre (southern Brazil) had scores in the intermediate level (between 10 and 14.9) in the physical and psychological health and environment domains. Scores of the social relationships domain fell within the high level (between 15 and 20). Comparatively to Casa da AIDS patients, only the control group (non-patients) of Fleck et al2 study had scores within the high level in the physical and psychological health domains. On the other hand, concerning the social relationships domain, the subjects of the present study had higher scores compared only to psychiatric patients. In regard to the environment domain, AIDS patients had lower scores compared to clinical and control patients in Fleck et al2 study.
In short, people living with AIDS have better quality of life, i.e., physical and psychological health, than other patients but worse quality of life in the social relationships domains. This latter can reflect stigma and discrimination associated to difficulties to disclose their HIV status in social settings (work, family, and friends) and for a comfortable sex life. The study findings indicate that distinctive features of people living with HIV/AIDS can negatively affect issues in the social relationships domains (personal relationships, social support and sexual activity).
Few studies for the assessment of quality of life of people living with HIV/AIDS3,6,8,7 have used the WHOQOL-bref1,4,4 while others, which are not comparable to the present study, used different instruments (MOS, SF-36, HAT-QoL). Besides, the WHOQOL group developed the WHOQOL-100 and WHOQOL-HIV instruments, which have not been yet validated in Portuguese, at the time of the present study. Even considering the methodological limitations of this analysis, it is important to contrast the present study findings with those from studies on quality of life and HIV/AIDS.
Starace et al12 in a validation study of WHOQOL-HIV comprising 134 Italian men and women, reported lower scores in the environment domain. It is worth noting that this questionnaire consists of questions from WHOQOL-100 instrument in addition to 35 specific questions for people living with HIV/AIDS, making a total of 135 questions and seven domains. In this study,12 higher scores were found in the level of independence domain, followed by psychological health, beliefs of people living with HIV/AIDS (fear of disease progression, fear of being left alone as disease progresses, feeling uncomfortable in the presence of other people with HIV), physical health, social relationships and spirituality domains. In the present study, when compared to men, women were found to have lower scores lower in the psychological health and environment domains.
In a study investigating women living with HIV/AIDS conducted in three cities of the state of São Paulo, Paiva et al9 reported the following factors as harmful to their quality of life: "changes in sexual and affective life due to difficulties to disclose their diagnosis; ongoing daily negotiation for condom use; fear of rejection; and hard decisions concerning their desire to have a family".
According to Tostes,4 negative impacts on quality of life of people living with HIV/AIDS seem to be more profound in women because they have lower earnings and schooling; they are financially dependent on their partners; they are overwhelmed with home chores and caring for their children and other relatives; their socioeconomic condition deteriorates as disease progresses; and because the majority were infected by their (current or former) partners, which could arouse feelings of great sorrow, anger, and disappointment.
As women try to meet all their home, family and work commitments, they may disregard their health care and prioritize all other activities.8 In other words, gender inequalities have an impact on women's quality of life.
With respect to time elapsed since HIV diagnosis, owing to free access to more powerful ARVs in the mid-1996, it is possible there has been a lower impact on the environment domain in this group. This group most likely learned their HIV status when HIV drugs were less effective.
It is also possible that those who knew their HIV status for less than two years had the lowest scores because they were still trying to conform to a new life situation, which had a negative impact on issues dealt in the environment domain, as Campos7 described. The present study documents quality of life scores and their variation measured by an instrument validated in Brazil, WHOQOL-bref, which provides an opportunity to apply it to people living with HIV/AIDS and therefore indicate priority intervention areas. The study sample is representative of patients attending visits with infectious disease specialists at Casa da AIDS with few losses and refusals. There were no differences in sociodemographic characteristics of interviewees and of those refusing to participate in the study (data not shown).
Since it is a university reference service, significant differences in quality of life scores found among black (black and pardo), women, people with lower income and schooling and those with indication for or receiving psychiatric care are suggestive of social inequalities. Hence the study findings cannot be generalized to other services in São Paulo and other regions. Samples based on reference university services usually comprise patients with better health and life conditions and overestimation of quality of life scores can be expected. In contrast, lower scores can be expected in marginalized populations and those attending services with less resources.
As the WHOQOL instrument measures quality of life within two weeks prior to the interview, information provided is a snapshot which minimizes potential recall bias. AIDS patients have good quality of life in the physical and psychological health domains but face difficulties in the social relationships and environment domains. The inclusion of quality of life assessment through standardized instruments in medical follow-up can help to identify the most crucial domains in these patients' life and allow to providing more specific and better care.
ECM dos Santos held a MSc fellowship from Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES). F Lopes held a PhD fellowship from Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq). I França-Junior currently holds a PQ-2 fellowship from CNPq.
To Prof. Maria do Rosário Latorre of Faculdade de Saúde Pública of Universidade de São Paulo (USP) and Prof. Aluísio Segurado of Faculdade de Medicina-USP for suggestions on the manuscript. To Casa da Aids staff for their involvement in this study and support.
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Ivan França Junior
Av. Dr. Arnaldo, 715 sala 218
01246-940 São Paulo, SP, Brasil
This article's authors participate of the Núcleo de Estudos de Prevenção da Aids da Universidade de São Paulo.
ECM dos Santos was supported by Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (Capes; Master's degree Scholarship); F Lopes was supported by Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq; Doctorate Scholarship). I França Jr was supported by CNPq (Productivity in research PQ-2).
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