AIDS Behav DOI 10.1007/s10461-014-0885-x
ORIGINAL PAPER
Factors Associated with a Delay in Seeking HIV/AIDS Treatment in Sa˜o Paulo, Brazil Zarifa Khoury • Rebeca S. Silva • Wilza Villela
Ó Springer Science+Business Media New York 2014
Abstract This quantitative cross-sectional study of HIV/ AIDS patients (N = 1,520) in Sa˜o Paulo evaluated factors associated with a delay in seeking care. Analysis included Chi square tests and multiple logistic regression. Care was sought at the AIDS stage in 56.7 % (861) of patients, and 48.2 % (732) had a CD4 count B350 cells/mm3; 9 % (136) delayed seeking care for 6 months or more after a positive HIV test. Women sought medical care earlier after testing (odds ratio (OR) = 1.79; P = 0.0227), but were already symptomatic (OR = 1.90; P = 0.0004). Partners of seropositive patients (OR = 3.92; P = 0.0000) also sought care symptomatic. Reasons for late presentation for care were non-acceptance of HIV diagnosis (OR = 24.56; P = 0.0000), treatment refusal (OR = 55.34; P = 0.0000), and physical disability (OR = 1.90; P = 0.0414). Necessary strategies for HIV treatment and prevention include improved education and access to services.
Resumen Estudio estratificado muestra transversal cuantitativo (N = 1.520) de HIV/SIDA se llevo´ a cabo en Sa˜o Paulo. Para el ana´lisis de resultados, se utilizo´ la prueba de chi-cuadrado y regresio´n logı´stica mu´ltiple. Buscar cuidado con el SIDA fue 56.7 %(861), 48.2 % (732)con CD4 B350cel/mm3 y los sujetos que buscaban
Z. Khoury (&) R. S. Silva W. Villela Universidade Federal de Sa˜o Paulo, Bloc A1. 2nd Floor, Room 211, Av. Albert Einstein 627 Morumbi, Sa˜o Paulo, SP 05651-901, Brazil e-mail: [email protected] R. S. Silva e-mail: [email protected] W. Villela e-mail: [email protected]
atencio´n hasta seis meses despue´s de la prueba del VIH fue del 9 % (136). Mujeres buscaban atencio´n antes (OR = 1.79; P = 0.0227), pero ya enfermas (OR = 1.90; P = 0.0004). Compan˜eros de seropositivos buscaban atencio´n enfermos (OR = 3.92; P = 0.0000). Las rasones eran: personas no aceptan el diagno´stico de VIH (OR = 24.56; P = 0.0000) y no quieren que se traten (OR = 55.34; P = 0.0000), deficiente fı´sico (OR = 1.90; P = 0.0414). Estrategias necesarias incluyen educacio´n y acceso a los servicios.
Keywords HIV
AIDS Late care Antiretroviral therapy
Palabras clave SIDA buscar atencio´n fines de seguimiento la terapia antirretroviral las personas con VIH
Introduction The effectiveness of an AIDS program can be compromised by the substantial proportion of people who are referred too late for clinical treatment [1, 2]. Highly active antiretroviral therapy (HAART) improves clinical and immunological outcomes and reduces healthcare costs, including medications and complex procedures. It allows long-term control of HIV-1, and reduces the risk of onward HIV transmission [3]. In Brazil, governmental medical services provide free treatment for HIV, which includes specialized units for testing and treatment, accreditation of public hospital beds, procedures and protocols for monitoring treatment, and universal access to ART. National prevention strategies
123
AIDS Behav
include campaigns clarifying the modes of HIV transmission and prevention, campaigns aimed at increasing testing, educational programs, promotion of harm reduction methods, and distribution of resources [4]. These efforts have resulted in a deceleration of the mortality rate in the country, stabilizing at about 6.4 deaths per 100,000 inhabitants since 2000. Likewise in Sa˜o Paulo, the mortality rate decreased from 31 deaths per 100,000 in 1995 to eight deaths per 100,000 in 2010, which has been virtually stable since 2000 [4–7]. The late presentation into HIV care remains a problem worldwide, even in developed countries, and leads to increased morbidity and mortality, especially during the first year of treatment as many patients are already severely ill. Delays in presentation to health care facilities also result in an increase in the number of hospitalizations because of a higher incidence of opportunistic infections and higher rates of HIV transmission, considering that a high viral load enhances transmissibility [7–11]. A recent recommendation for the Brazilian clinical protocol and therapeutic guidelines for managing HIV infection was to offer early treatment to all HIV-positive adults. It is hoped that this initiative will help to attenuate new HIV infections, with a reduction in the risk of transmitting the virus to a sexual partner [12]. The problem of individuals entering HIV care at a late stage has been reported by other authors and defined as patients who delay seeking care following HIV diagnosis [13–15]. Such patients often present with severe immunosuppression (CD4 count 50–350 cells/mm3) [13–15] and AIDS-related illnesses [13]. In 2009, Adler et al. [13] proposed a combination of three parameters in the definition of late presentation of HIV infection, including time, CD4 count, and clinical features. The objective of this study was to determine the frequency and determinants of presentation to care of patients with advanced HIV disease who discovered their diagnosis at this stage, and of patients with delayed presentation after HIV diagnosis at an earlier stage. This is the first study on late presentation into care conducted in Sa˜o Paulo.
Methods This quantitative cross-sectional study was carried out in Sa˜o Paulo City, Brazil from July 2009 to July 2010. Participants (N = 1,520) over 18 years of age were identified in the 2007–2008 Health Service Information System, VIGISERV (Surveillance System Services), and recruited on a voluntary basis from 15 free public access sexually transmitted disease (STD)/AIDS outpatient units, which were responsible for the medical care of 59.4 % of HIV/
123
AIDS cases in Sa˜o Paulo during the period [16]. Study patients were stratified by STD/AIDS outpatient unit, HIV status (HIV-seropositivity or AIDS), and sex. The study was approved by the ethics committees at the Federal University of Sa˜o Paulo and the Department of Health of Sa˜o Paulo under protocol numbers 207708 and 28308, respectively. This study defined late presentation or an inappropriate time for HIV care as: a patient who had an AIDS-defining illness, based on the Centers for Disease Control and Prevention criteria [17]; a patient with initial CD4 count B350 cells/mm3 at the time of seeking HIV/AIDS assistance; and a patient with delayed entry into HIV medical care of C6 months after a positive HIV test. A questionnaire was presented to such patients to investigate the factors involved in late attendance at a health clinic, and markers that defined late disease. Collected data were stored in the EPINFO program and analyzed using the SPSS 19 software package (IBM Corp., Armonk, NY, USA). The analysis of factors related to late presentation for HIV/AIDS care was divided into two parts. A Chi square test compared the independent and dependent variables, then the data were analyzed using multiple logistic regression. The dependent variables considered for statistical analysis were: time between the first HIV test and seeking specialized medical care, and late stage diagnosis at the time of seeking healthcare, with significant AIDS-defining diseases and laboratory changes (CD4 T cell count B350/ mm3). The independent variables were: sex, race, profession (working or nonworking), sexual preference, seropositive sexual partner, education (in years), type of housing, monthly wage, individual monthly income, number of dependents, contribution to family income, number of children (if women), presence of any physical disability, time of physical disability (pre-AIDS or postAIDS), site of HIV testing, unsatisfactory HIV test communication, HIV results shared with someone, non-acceptance of the possibility of HIV infection (skepticism), nonacceptance of an HIV diagnosis, fear of facing the disease, inadequate care expectation, treatment refusal, chemical dependency, difficulty in accessing medical services, nature of access difficulty, reason for the testing, own decision to perform the test or third party involvement, signs or symptoms of AIDS, defining illnesses presented, and history of previous hospitalizations. Forward selection logistic regression was used to identify independent variables that could best explain the dependent variables, namely the time of awareness of HIV positivity, presentation with an AIDS-defining sign or symptom prior to and/or on arrival at the specialized HIV/ AIDS clinic, and CD4 count B350/mm3 in the first test performed at the clinic. A significance level of 5 % was used, assuming a statistical power of 80 % for each fitted
AIDS Behav
model. The power of the test was considered 80 %, which was the lowest power found.
Results A total of 1,520 subjects were enrolled in the study. The participants were predominantly male, heterosexual, not afro-descendants, living in a single household, professionally active, had at least 11 year’s education, had monthly earnings up to 1,500 dollars, had no significant physical disability, the majority of female participants had children, and about 30 % of subjects reported injection drug use. The median age was 38 years (range, 18–81 years). Sociodemographic characteristics are shown in Table 1. Nine percent (136) of subjects delayed seeking care for 6 months or more after a positive HIV test. Care was sought at the AIDS stage in 56.7 % (861) of patients and 48.2 % (732) had a CD4 count B350 cells/mm3 at presentation for treatment (Table 2). When we considered time for presentation for HIV treatment C6 months, the Chi square test revealed the following significant factors: male sex; physical disability; and variables associated with HIV diagnosis and care (skepticism, non-acceptance of diagnosis, fear of facing the disease, treatment refusal, services with inadequate care expectation). In the logistic regression analysis, the Table 1 Sociodemographic characteristics of participants in Sa˜o Paulo, Brazil (N = 1520) Characteristics
N
Percentage (%)
Male
990
65.1
Female
530
34.9
Heterosexual
1,122
73.8
Man that have sex with man (MSM)
396
26
Sex
Exposure category for HIV infection Sexual
Women that have sex with women
2
0.2
456
30
Race/ethnicity other than Afro-descendants (White 729, Mulato 560, Asian 2, Indian 2)
1,313
86.4
Monthly wage up to 1,500 dollars
1,210
81.6
Studied at least 11 years
1,273
84.2
Living in a single household
1,382
90.9
Employed
1,306
86.2
Women with children
456
Absence of physical disability
1,344
82.2 of women 88.7
Intravenous drug use
Table 2 Characteristics of participants identified as those with delay in treatment-seeking in Sa˜o Paulo, Brazil Time to treatment (Cut-off in months)
Total
Late: C6 months
136 (8.9 %)
Patients with AIDS-defining signs or symptoms
73 (53.68 %)
Early: \6 months
1,384 (91.1 %)
Patients with AIDS-defining signs or symptoms
594 (42.98 %)
Total patients
1,520
Clinical definition (AIDS-defining signs or symptoms) Yes Total patients
861 (56.7 %) 1,518
No information
2
CD4 count CD4 B350/mm3
732 (48.2 %)
Total patients
1,520
Table 3 Logistic regression analysis of HIV treatment delay C6 months Factor
Odds ratio
P value
Treatment refusal (Yes vs. No)
55.34
0.000
Skepticism about diagnosis (Yes vs. No)
24.56
0.000
Non acceptance of diagnosis (Yes vs. No)
13.70
0.000
Fear of facing the disease (Yes vs. No)
13.17
0.000
Physical disability (Yes vs. No)
1.90
0.041
Sex (M vs. F)
1.79
0.023
forward selection method showed a significant association for skepticism, refusal to accept the diagnosis or treatment, fear of facing the disease, physical disability, and male sex (Table 3). The Chi square test for a time delay and the presence or non-presence of AIDS sign or symptoms found no association between those who did and did not delay C6 months (P = 0.453). In subjects with a CD4 count B350 cells/mm3, the Chi square test showed significance for patients who were tested in specialized sexually transmitted disease (STD)/AIDS clinics, had an HIV-seropositive partner, had unsatisfactory revelation of HIV diagnosis, and who dismissed the diagnosis. After forward selection logistic regression, an association was found between CD4 count B350 cells/mm3 and having an HIV test in a non-specialized HIV/AIDS unit (odds ratio = 2.02; P = 0.000). The Chi square test and forward logistic regression analysis of presentation with an AIDS-defining sign or symptom showed significance for the following variables: female sex, HIV-seropositive partners, afro-descendants, absence of physical disability, and HIV testing in a specialized STD/AIDS unit. Occupation (active or inactive)
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AIDS Behav Table 4 Logistic regression of presentation with an AIDS-defining sign or symptom (previous to and/or at the time of seeking HIV treatment) Factor
Odds ratio
P value
Seropositive sexual partner (Yes vs. No)
3.92
0.0000
Physical deficiency (No vs. Yes)
2.82
0.0000
Place of HIV test (specialized STD/AIDS units vs. non-specialized STD/AIDS units)
2.48
0.0000
Sex (F vs. M)
1.90
0.0000
Race/ethnicity (afro-descendants vs non-afrodescendants)
1.50
0.0250
only showed significance in the Chi square test and not in the logistic regression analysis. The variables associated with presentation with AIDS-defining signs or symptoms are presented in Table 4.
Discussion The 15 free public access STD/AIDS outpatient units, where patients were enrolled in the study, were responsible for medical care of 59.4 % of HIV/AIDS cases in Sa˜o Paulo. The demographics of the study sample were similar to those reported in the Epidemiological Bulletin of Sa˜o Paulo City, which reported all AIDS cases in the city, in the same period. Despite free public access to Brazilian HIV/ AIDS programs (prevention, testing and ART), this study found that a large proportion of newly diagnosed patients may not benefit from this policy. Current trends show that HIV transmission mainly occurs among heterosexual couples, as seen in this sample. Since the beginning of the HIV epidemic in the 1980 s, the epidemiology has changed from groups at risk of AIDS to groups perceived to be vulnerable to HIV infection and who must take preventive measures during sexual activity. This study found that 9 % of the patients did not receive HIV-related care until at least 6 months after their first positive HIV test, and that 73 (54 %) of this group presented for treatment with advanced disease. This proportion was lower than in other studies that reported a delay in initiating HIV care. In a French study (1997–2007) by Ndiaye et al., 17 % of 1819 HIV-infected patients in Belgium and France had delayed presentation, defined as attendance for treatment with advanced HIV disease, or HIV diagnosis [6 months before initiation of treatment [18]. An Italian multicenter study (1997–2000) by Girardi et al. in Italy reported that 26.3 % of 968 HIV-infected patients on their first HIV care visit could be defined as delayed presenters and had[6 months between their first HIV-positive test and
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presentation for HIV care, or were late testers who had advanced HIV disease at diagnosis [15]. The non-acceptance of HIV diagnosis seemed to be the most important finding to explain delayed presentation for treatment. HIV prevention campaigns must improve knowledge about vulnerability to HIV infection and the groups particularly at risk. Stigma about the disease and its treatment can be ameliorated through information, training of health staff, and making HIV testing more routine and non-discriminatory in general medical services. This study also found that physical disability was significantly associated with a delay in seeking care after HIV testing. Physical barriers in accessing medical care were reported by Groce in the ‘‘World Survey HIV/AIDS and Deficiency’’ [19]. The Center for Interdisciplinary Research on AIDS at Yale School of Public Health studied the impact of physical barriers in reducing access to medical care in HIV/AIDS cases. This study included 2800 HIV/AIDS and disability organizations around the world and found that physical (handicap) and sensory (blindness, deafness) barriers reduced access to medical care, and thus increased the probability of delayed presentation. We found a high percentage of patients with intravenous drug use (30 %), perhaps because ‘‘The Brazilian Reduction of Damage Program’’ applied to drug users. The Brazilian Minister of Health applied a preventive needle exchange program only to drug users at Public HIV Care Units, and this Health Program perhaps attracted such a population to these Public HIV Care Units [7]. However, we did not find an association between intravenous drug use and increased probability of late presentation, in contrast with Girardi et al. in Italy who reported that injection drug use significantly increased the probability of delayed presentation for treatment [15], and Ndiaye et al. in France, who found that injection drug use significantly increased the probability of delayed presentation [18]. The logistic regression analysis found that male patients were more likely to present for treatment C6 months after diagnosis in Sa˜o Paulo City. Hibbard and Pope in a study of 1,648 outpatients aged 18–59 over 7 years also found that women used HIV medical services more than men [20]. A prospective multicenter cohort in France (N = 4516) from January 1996 to June 2005 reported that heterosexual men and women, particularly couples with children, were found to be at high risk of late testing [21]. Although the present study observed that women sought medical assistance earlier than men, many still tested in a late phase and were likely to have a seropositive sexual partner. Many studies have reported a reduced perception of HIV infection risk involving women and couples [20–22]. Clinically, a low CD4 count of B350 cells/mm3 was associated with having a test in a non-specialized HIV/ AIDS unit. There was an association between clinical
AIDS Behav
presentation with an AIDS-defining sign or symptom and a seropositive partner, no physical disability, testing at a specialized HIV unit, female sex, and being of African descent. A study of 540 subjects at the Campos Eliseos HIV testing and treatment unit, conducted from April to June 2006, showed that a significant number (43 %) of AIDS patients were referred by non-HIV specialized units [23]. These individuals probably did not perceive themselves as being at risk of acquisition of HIV infection and/or had a low perception and interpretation of signs and/or symptoms of AIDS [20]. Patients of African descent were more likely to seek assistance once they were ill. This is consistent with the study of Mor et al., who studied the effects of sociodemographic factors on health service use among 939 patients with HIV infection in the Robert Wood Johnson Foundation’s AIDS Health Service Program in nine communities across the United States. The study concluded that: ‘‘removing the financial constraints of HIV medical care alone is insufficient to reduce barriers to seeking HIV health care, and improve compliance with HIV medical care and innovative approaches for improving access are needed’’ [24]. The same observation applies in Sa˜o Paulo City, where the public health services are universal and patients have free access, but there are still delays in accessing treatment. In conclusion, this study found that despite advances in HIV prevention and care, use of the benefits and services available was problematic for a considerable proportion of HIV subjects in Sa˜o Paulo. The reasons for delayed access to AIDS care were mainly related to awareness, self-perception of HIV risk, and stigma of AIDS disease and treatment. Education about HIV risk behavior and risk groups should be widely disseminated. A review of the current model of care is required, with improvement and training of human resources in HIV testing and a better multidisciplinary structure for care after diagnosis. It is also necessary to continue to evaluate the objectives and effectiveness of the strategies for HIV infection control. Acknowledgments The authors thank the STD/AIDS National Program and Oswaldo Cruz Foundation for financial support.
4. 5. 6. 7. 8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
18.
19. 20.
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ORIGINAL PAPER
Factors Associated with a Delay in Seeking HIV/AIDS Treatment in Sa˜o Paulo, Brazil Zarifa Khoury • Rebeca S. Silva • Wilza Villela
Ó Springer Science+Business Media New York 2014
Abstract This quantitative cross-sectional study of HIV/ AIDS patients (N = 1,520) in Sa˜o Paulo evaluated factors associated with a delay in seeking care. Analysis included Chi square tests and multiple logistic regression. Care was sought at the AIDS stage in 56.7 % (861) of patients, and 48.2 % (732) had a CD4 count B350 cells/mm3; 9 % (136) delayed seeking care for 6 months or more after a positive HIV test. Women sought medical care earlier after testing (odds ratio (OR) = 1.79; P = 0.0227), but were already symptomatic (OR = 1.90; P = 0.0004). Partners of seropositive patients (OR = 3.92; P = 0.0000) also sought care symptomatic. Reasons for late presentation for care were non-acceptance of HIV diagnosis (OR = 24.56; P = 0.0000), treatment refusal (OR = 55.34; P = 0.0000), and physical disability (OR = 1.90; P = 0.0414). Necessary strategies for HIV treatment and prevention include improved education and access to services.
Resumen Estudio estratificado muestra transversal cuantitativo (N = 1.520) de HIV/SIDA se llevo´ a cabo en Sa˜o Paulo. Para el ana´lisis de resultados, se utilizo´ la prueba de chi-cuadrado y regresio´n logı´stica mu´ltiple. Buscar cuidado con el SIDA fue 56.7 %(861), 48.2 % (732)con CD4 B350cel/mm3 y los sujetos que buscaban
Z. Khoury (&) R. S. Silva W. Villela Universidade Federal de Sa˜o Paulo, Bloc A1. 2nd Floor, Room 211, Av. Albert Einstein 627 Morumbi, Sa˜o Paulo, SP 05651-901, Brazil e-mail: [email protected] R. S. Silva e-mail: [email protected] W. Villela e-mail: [email protected]
atencio´n hasta seis meses despue´s de la prueba del VIH fue del 9 % (136). Mujeres buscaban atencio´n antes (OR = 1.79; P = 0.0227), pero ya enfermas (OR = 1.90; P = 0.0004). Compan˜eros de seropositivos buscaban atencio´n enfermos (OR = 3.92; P = 0.0000). Las rasones eran: personas no aceptan el diagno´stico de VIH (OR = 24.56; P = 0.0000) y no quieren que se traten (OR = 55.34; P = 0.0000), deficiente fı´sico (OR = 1.90; P = 0.0414). Estrategias necesarias incluyen educacio´n y acceso a los servicios.
Keywords HIV
AIDS Late care Antiretroviral therapy
Palabras clave SIDA buscar atencio´n fines de seguimiento la terapia antirretroviral las personas con VIH
Introduction The effectiveness of an AIDS program can be compromised by the substantial proportion of people who are referred too late for clinical treatment [1, 2]. Highly active antiretroviral therapy (HAART) improves clinical and immunological outcomes and reduces healthcare costs, including medications and complex procedures. It allows long-term control of HIV-1, and reduces the risk of onward HIV transmission [3]. In Brazil, governmental medical services provide free treatment for HIV, which includes specialized units for testing and treatment, accreditation of public hospital beds, procedures and protocols for monitoring treatment, and universal access to ART. National prevention strategies
123
AIDS Behav
include campaigns clarifying the modes of HIV transmission and prevention, campaigns aimed at increasing testing, educational programs, promotion of harm reduction methods, and distribution of resources [4]. These efforts have resulted in a deceleration of the mortality rate in the country, stabilizing at about 6.4 deaths per 100,000 inhabitants since 2000. Likewise in Sa˜o Paulo, the mortality rate decreased from 31 deaths per 100,000 in 1995 to eight deaths per 100,000 in 2010, which has been virtually stable since 2000 [4–7]. The late presentation into HIV care remains a problem worldwide, even in developed countries, and leads to increased morbidity and mortality, especially during the first year of treatment as many patients are already severely ill. Delays in presentation to health care facilities also result in an increase in the number of hospitalizations because of a higher incidence of opportunistic infections and higher rates of HIV transmission, considering that a high viral load enhances transmissibility [7–11]. A recent recommendation for the Brazilian clinical protocol and therapeutic guidelines for managing HIV infection was to offer early treatment to all HIV-positive adults. It is hoped that this initiative will help to attenuate new HIV infections, with a reduction in the risk of transmitting the virus to a sexual partner [12]. The problem of individuals entering HIV care at a late stage has been reported by other authors and defined as patients who delay seeking care following HIV diagnosis [13–15]. Such patients often present with severe immunosuppression (CD4 count 50–350 cells/mm3) [13–15] and AIDS-related illnesses [13]. In 2009, Adler et al. [13] proposed a combination of three parameters in the definition of late presentation of HIV infection, including time, CD4 count, and clinical features. The objective of this study was to determine the frequency and determinants of presentation to care of patients with advanced HIV disease who discovered their diagnosis at this stage, and of patients with delayed presentation after HIV diagnosis at an earlier stage. This is the first study on late presentation into care conducted in Sa˜o Paulo.
Methods This quantitative cross-sectional study was carried out in Sa˜o Paulo City, Brazil from July 2009 to July 2010. Participants (N = 1,520) over 18 years of age were identified in the 2007–2008 Health Service Information System, VIGISERV (Surveillance System Services), and recruited on a voluntary basis from 15 free public access sexually transmitted disease (STD)/AIDS outpatient units, which were responsible for the medical care of 59.4 % of HIV/
123
AIDS cases in Sa˜o Paulo during the period [16]. Study patients were stratified by STD/AIDS outpatient unit, HIV status (HIV-seropositivity or AIDS), and sex. The study was approved by the ethics committees at the Federal University of Sa˜o Paulo and the Department of Health of Sa˜o Paulo under protocol numbers 207708 and 28308, respectively. This study defined late presentation or an inappropriate time for HIV care as: a patient who had an AIDS-defining illness, based on the Centers for Disease Control and Prevention criteria [17]; a patient with initial CD4 count B350 cells/mm3 at the time of seeking HIV/AIDS assistance; and a patient with delayed entry into HIV medical care of C6 months after a positive HIV test. A questionnaire was presented to such patients to investigate the factors involved in late attendance at a health clinic, and markers that defined late disease. Collected data were stored in the EPINFO program and analyzed using the SPSS 19 software package (IBM Corp., Armonk, NY, USA). The analysis of factors related to late presentation for HIV/AIDS care was divided into two parts. A Chi square test compared the independent and dependent variables, then the data were analyzed using multiple logistic regression. The dependent variables considered for statistical analysis were: time between the first HIV test and seeking specialized medical care, and late stage diagnosis at the time of seeking healthcare, with significant AIDS-defining diseases and laboratory changes (CD4 T cell count B350/ mm3). The independent variables were: sex, race, profession (working or nonworking), sexual preference, seropositive sexual partner, education (in years), type of housing, monthly wage, individual monthly income, number of dependents, contribution to family income, number of children (if women), presence of any physical disability, time of physical disability (pre-AIDS or postAIDS), site of HIV testing, unsatisfactory HIV test communication, HIV results shared with someone, non-acceptance of the possibility of HIV infection (skepticism), nonacceptance of an HIV diagnosis, fear of facing the disease, inadequate care expectation, treatment refusal, chemical dependency, difficulty in accessing medical services, nature of access difficulty, reason for the testing, own decision to perform the test or third party involvement, signs or symptoms of AIDS, defining illnesses presented, and history of previous hospitalizations. Forward selection logistic regression was used to identify independent variables that could best explain the dependent variables, namely the time of awareness of HIV positivity, presentation with an AIDS-defining sign or symptom prior to and/or on arrival at the specialized HIV/ AIDS clinic, and CD4 count B350/mm3 in the first test performed at the clinic. A significance level of 5 % was used, assuming a statistical power of 80 % for each fitted
AIDS Behav
model. The power of the test was considered 80 %, which was the lowest power found.
Results A total of 1,520 subjects were enrolled in the study. The participants were predominantly male, heterosexual, not afro-descendants, living in a single household, professionally active, had at least 11 year’s education, had monthly earnings up to 1,500 dollars, had no significant physical disability, the majority of female participants had children, and about 30 % of subjects reported injection drug use. The median age was 38 years (range, 18–81 years). Sociodemographic characteristics are shown in Table 1. Nine percent (136) of subjects delayed seeking care for 6 months or more after a positive HIV test. Care was sought at the AIDS stage in 56.7 % (861) of patients and 48.2 % (732) had a CD4 count B350 cells/mm3 at presentation for treatment (Table 2). When we considered time for presentation for HIV treatment C6 months, the Chi square test revealed the following significant factors: male sex; physical disability; and variables associated with HIV diagnosis and care (skepticism, non-acceptance of diagnosis, fear of facing the disease, treatment refusal, services with inadequate care expectation). In the logistic regression analysis, the Table 1 Sociodemographic characteristics of participants in Sa˜o Paulo, Brazil (N = 1520) Characteristics
N
Percentage (%)
Male
990
65.1
Female
530
34.9
Heterosexual
1,122
73.8
Man that have sex with man (MSM)
396
26
Sex
Exposure category for HIV infection Sexual
Women that have sex with women
2
0.2
456
30
Race/ethnicity other than Afro-descendants (White 729, Mulato 560, Asian 2, Indian 2)
1,313
86.4
Monthly wage up to 1,500 dollars
1,210
81.6
Studied at least 11 years
1,273
84.2
Living in a single household
1,382
90.9
Employed
1,306
86.2
Women with children
456
Absence of physical disability
1,344
82.2 of women 88.7
Intravenous drug use
Table 2 Characteristics of participants identified as those with delay in treatment-seeking in Sa˜o Paulo, Brazil Time to treatment (Cut-off in months)
Total
Late: C6 months
136 (8.9 %)
Patients with AIDS-defining signs or symptoms
73 (53.68 %)
Early: \6 months
1,384 (91.1 %)
Patients with AIDS-defining signs or symptoms
594 (42.98 %)
Total patients
1,520
Clinical definition (AIDS-defining signs or symptoms) Yes Total patients
861 (56.7 %) 1,518
No information
2
CD4 count CD4 B350/mm3
732 (48.2 %)
Total patients
1,520
Table 3 Logistic regression analysis of HIV treatment delay C6 months Factor
Odds ratio
P value
Treatment refusal (Yes vs. No)
55.34
0.000
Skepticism about diagnosis (Yes vs. No)
24.56
0.000
Non acceptance of diagnosis (Yes vs. No)
13.70
0.000
Fear of facing the disease (Yes vs. No)
13.17
0.000
Physical disability (Yes vs. No)
1.90
0.041
Sex (M vs. F)
1.79
0.023
forward selection method showed a significant association for skepticism, refusal to accept the diagnosis or treatment, fear of facing the disease, physical disability, and male sex (Table 3). The Chi square test for a time delay and the presence or non-presence of AIDS sign or symptoms found no association between those who did and did not delay C6 months (P = 0.453). In subjects with a CD4 count B350 cells/mm3, the Chi square test showed significance for patients who were tested in specialized sexually transmitted disease (STD)/AIDS clinics, had an HIV-seropositive partner, had unsatisfactory revelation of HIV diagnosis, and who dismissed the diagnosis. After forward selection logistic regression, an association was found between CD4 count B350 cells/mm3 and having an HIV test in a non-specialized HIV/AIDS unit (odds ratio = 2.02; P = 0.000). The Chi square test and forward logistic regression analysis of presentation with an AIDS-defining sign or symptom showed significance for the following variables: female sex, HIV-seropositive partners, afro-descendants, absence of physical disability, and HIV testing in a specialized STD/AIDS unit. Occupation (active or inactive)
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AIDS Behav Table 4 Logistic regression of presentation with an AIDS-defining sign or symptom (previous to and/or at the time of seeking HIV treatment) Factor
Odds ratio
P value
Seropositive sexual partner (Yes vs. No)
3.92
0.0000
Physical deficiency (No vs. Yes)
2.82
0.0000
Place of HIV test (specialized STD/AIDS units vs. non-specialized STD/AIDS units)
2.48
0.0000
Sex (F vs. M)
1.90
0.0000
Race/ethnicity (afro-descendants vs non-afrodescendants)
1.50
0.0250
only showed significance in the Chi square test and not in the logistic regression analysis. The variables associated with presentation with AIDS-defining signs or symptoms are presented in Table 4.
Discussion The 15 free public access STD/AIDS outpatient units, where patients were enrolled in the study, were responsible for medical care of 59.4 % of HIV/AIDS cases in Sa˜o Paulo. The demographics of the study sample were similar to those reported in the Epidemiological Bulletin of Sa˜o Paulo City, which reported all AIDS cases in the city, in the same period. Despite free public access to Brazilian HIV/ AIDS programs (prevention, testing and ART), this study found that a large proportion of newly diagnosed patients may not benefit from this policy. Current trends show that HIV transmission mainly occurs among heterosexual couples, as seen in this sample. Since the beginning of the HIV epidemic in the 1980 s, the epidemiology has changed from groups at risk of AIDS to groups perceived to be vulnerable to HIV infection and who must take preventive measures during sexual activity. This study found that 9 % of the patients did not receive HIV-related care until at least 6 months after their first positive HIV test, and that 73 (54 %) of this group presented for treatment with advanced disease. This proportion was lower than in other studies that reported a delay in initiating HIV care. In a French study (1997–2007) by Ndiaye et al., 17 % of 1819 HIV-infected patients in Belgium and France had delayed presentation, defined as attendance for treatment with advanced HIV disease, or HIV diagnosis [6 months before initiation of treatment [18]. An Italian multicenter study (1997–2000) by Girardi et al. in Italy reported that 26.3 % of 968 HIV-infected patients on their first HIV care visit could be defined as delayed presenters and had[6 months between their first HIV-positive test and
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presentation for HIV care, or were late testers who had advanced HIV disease at diagnosis [15]. The non-acceptance of HIV diagnosis seemed to be the most important finding to explain delayed presentation for treatment. HIV prevention campaigns must improve knowledge about vulnerability to HIV infection and the groups particularly at risk. Stigma about the disease and its treatment can be ameliorated through information, training of health staff, and making HIV testing more routine and non-discriminatory in general medical services. This study also found that physical disability was significantly associated with a delay in seeking care after HIV testing. Physical barriers in accessing medical care were reported by Groce in the ‘‘World Survey HIV/AIDS and Deficiency’’ [19]. The Center for Interdisciplinary Research on AIDS at Yale School of Public Health studied the impact of physical barriers in reducing access to medical care in HIV/AIDS cases. This study included 2800 HIV/AIDS and disability organizations around the world and found that physical (handicap) and sensory (blindness, deafness) barriers reduced access to medical care, and thus increased the probability of delayed presentation. We found a high percentage of patients with intravenous drug use (30 %), perhaps because ‘‘The Brazilian Reduction of Damage Program’’ applied to drug users. The Brazilian Minister of Health applied a preventive needle exchange program only to drug users at Public HIV Care Units, and this Health Program perhaps attracted such a population to these Public HIV Care Units [7]. However, we did not find an association between intravenous drug use and increased probability of late presentation, in contrast with Girardi et al. in Italy who reported that injection drug use significantly increased the probability of delayed presentation for treatment [15], and Ndiaye et al. in France, who found that injection drug use significantly increased the probability of delayed presentation [18]. The logistic regression analysis found that male patients were more likely to present for treatment C6 months after diagnosis in Sa˜o Paulo City. Hibbard and Pope in a study of 1,648 outpatients aged 18–59 over 7 years also found that women used HIV medical services more than men [20]. A prospective multicenter cohort in France (N = 4516) from January 1996 to June 2005 reported that heterosexual men and women, particularly couples with children, were found to be at high risk of late testing [21]. Although the present study observed that women sought medical assistance earlier than men, many still tested in a late phase and were likely to have a seropositive sexual partner. Many studies have reported a reduced perception of HIV infection risk involving women and couples [20–22]. Clinically, a low CD4 count of B350 cells/mm3 was associated with having a test in a non-specialized HIV/ AIDS unit. There was an association between clinical
AIDS Behav
presentation with an AIDS-defining sign or symptom and a seropositive partner, no physical disability, testing at a specialized HIV unit, female sex, and being of African descent. A study of 540 subjects at the Campos Eliseos HIV testing and treatment unit, conducted from April to June 2006, showed that a significant number (43 %) of AIDS patients were referred by non-HIV specialized units [23]. These individuals probably did not perceive themselves as being at risk of acquisition of HIV infection and/or had a low perception and interpretation of signs and/or symptoms of AIDS [20]. Patients of African descent were more likely to seek assistance once they were ill. This is consistent with the study of Mor et al., who studied the effects of sociodemographic factors on health service use among 939 patients with HIV infection in the Robert Wood Johnson Foundation’s AIDS Health Service Program in nine communities across the United States. The study concluded that: ‘‘removing the financial constraints of HIV medical care alone is insufficient to reduce barriers to seeking HIV health care, and improve compliance with HIV medical care and innovative approaches for improving access are needed’’ [24]. The same observation applies in Sa˜o Paulo City, where the public health services are universal and patients have free access, but there are still delays in accessing treatment. In conclusion, this study found that despite advances in HIV prevention and care, use of the benefits and services available was problematic for a considerable proportion of HIV subjects in Sa˜o Paulo. The reasons for delayed access to AIDS care were mainly related to awareness, self-perception of HIV risk, and stigma of AIDS disease and treatment. Education about HIV risk behavior and risk groups should be widely disseminated. A review of the current model of care is required, with improvement and training of human resources in HIV testing and a better multidisciplinary structure for care after diagnosis. It is also necessary to continue to evaluate the objectives and effectiveness of the strategies for HIV infection control. Acknowledgments The authors thank the STD/AIDS National Program and Oswaldo Cruz Foundation for financial support.
4. 5. 6. 7. 8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
18.
19. 20.
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