sexta-feira, 6 de julho de 2012

Circumstances of HIV diagnosis

Como as pessoas ficam sabendo que são portadoras de HIV? Essa era a minha pergunta. O trabalho abaixo foi apresentado oralmente em Genebra em 1998. Não fiz revisão: o meu inglês da época era ainda pior que hoje.

Esse trabalho foi a primeira publicação da noção de "risco moral", em contraposição a "risco biológico", que estive desenvolvendo e ainda considero um dos pilares da vulnerabilidade das pessoas a agravos. Essa noção será um pouco mais trabalhada ao desenvolver técnicas de educação, e eu a considero um dos embriões da noção de "ingenuidade", e também da forma como passei a pensar a distinção entre "erro" e "ilusão" (veja-se o artigo sobre tecnologia educativa aplicada a teatro, neste blog). Aqui está a versão completa, pois os registros do congresso (livro e CD) publicaram apenas os resumos.

XII World AIDS Conference
July 1, 1998, Geneve

Session “Stigma and discrimination”

Circumstances of diagnosis
of HIV Infection
in Belo Horizonte, Brazil

M. A. CAMPOS,              Infectious and Parasitic Diseases Out-patients Unit, Eduardo de Menezes Hospital, Fundação Hospitalar do Estado de Minas Gerais, Belo Horizonte, Brazil

INFECTIOUS DISEASES STUDY GROUP Eduardo de Menezes Hospital, FHEMIG, Belo Horizonte, Brazil


INTRODUCTION

Belo Horizonte, a 2.5 million people city, has the fourth largest number of notified AIDS cases in Brazil. The AIDS accumulated prevalence by November/97 was  0.12%. There are three public services attending HIV/AIDS patients at the city. Eduardo de Menezes Hospital is one of them, part of the state web of laboratory, hospitalar and out-patients assistence (Minas Gerais State Hospitalar Foundation - FHEMIG). It offers trainning and post-graduation on Infectology (medical residence) and a reference for Parasitic and Infectious Diseases to Minas Gerais and other states of the country. A large number of HIV infected patients received there present with AIDS at diagnosis. This study assesses the circumstances under which testing for HIV is done in order to produce guidelines for early diagnosis and care and better understanding of how these diagnosis have been made.


MATERIALS AND METHODS

Between August/97 and March/98 all patients attended by the author and two residents of infectology at Eduardo de Menezes Hospital (EMH) in or out-patient units were invited to answer a standard questionnare about how they were found to be HIV-positive. The questionnare was answered by the patient him/herself or by a relative. Analysis of 282 valid questionnare was done using EPI-INFO 6.02.


RESULTS AND DISCUSSION

Four patients denied participating. A total of 295 questionnare were completed, 13 excluded. Among the 282 selected patients, females were 74 (27.66%) of the sample. The rate male/female was 2.62. The mean age at diagnosis was 32.4 years, median 31 years, range of 18 to 80 years. There were no statiscally diference of age among gender.

Fluent reading was reported by 60 (21.28%) and 18 (6.38%) are completly illiterate. Only 7 (2.48%) have post-graduation. The familial income is lower than US$7200.00/yr for 192 (68.1%) and 39 (13.83%) are destitute, without any regular income and dependents of the social security (table 1).

Table 1 - Familial income of the patients (N=282)

Familial Income (US$/year)
Freq
Percent
Cum.
no regular income
39
13.83%
13.83%
0-3,600.00
75
26.60%
40.43%
3,700 - 7,200
78
27.66%
68.09%
7,300 - 12,000
28
9.93%
78.02%
12,100 - 18,000
17
6.03%
84.05%
>18,000
17
6.03%
90.08%
no data
28
9.93%
100%
TOTAL
282
100%




As a result of such social conditions - poor understanding and lack of familial suport to help self care - adherence to complex medicines schedules are a problem to the patient and  a concern about emergence of viral (and other pathogens, like Mycobacterium tuberculosis) resistance. In spite of the availability of the anti-retroviral drugs to all patients (Brazil was the first country in the world to offer these drugs for free in a public health services basis) the decision of how to treat such patients is an addicional challenge for Brazilian health-care-workers: the world wide inclination to “treat smart” must consider also patient skills to deal with complex and few changeable prescriptions.

A total of 172 (61%) of the 282 patients were admitted at EMH with confirmed serology (usually 2 ELISA and 1 Wester Blot). At least 1/3 of these patients will demand complete or confirmatory HIV serology from the EMH laboratory. Of those 172 already diagnosed as HIV-positive, 22 (12.8%) did not know about their disease or the reason they were sent to the EMH. It is not seldom the family refuse to tell to the patient his/her status and demand the same policy from health care workers.

When asked “who requested the anti-HIV test?”, the answers were: a reference service for 103 (36.52%); a clinician for 144 (51.06%); a judge or police officer, the patient himself or an employer for 7 (2.48%); others (patients relative, parent or friend, Non-Governamental Organizations) for 3 (1.06%).

The reasons for testing are described on table 3.

Table 3 - Answers to the question “why were you tested to HIV?” (N=282)


Reason for testing
Freq
Percent
Cum.
Immune Disfunction
Sign or symptoms
177
62.77%
62.77%
Screening of contacts of HIV positive persons
52
18.44%
81.21%
Blood Banks screening
11
3.90%
85.11%
STD clinics surveillance
10
3.55%
88.66%
Compulsory testing in jail
9
3.19%
91.85%
Compulsory testing in brothels
8
2.84%
94.69%
Compulsory testing in army
4
1.42%
96.11%
Other reasons (*)
5
1.76%
97.87%
no data
6
2.13%
100%
TOTAL
282
100%


* to get a green card to USA (2), after rape (2), curiosity about HIV status (1).

A total of 21/282 (7,45%) of these persons were compulsorily tested. Girls who are sex workers have little power and, in spite of to know it will be done, they can not to refuse because testing (and been negative) is a condition to work in some brothels, wich proudly announce their “health girls”. If we add the two patients tested as a condition to obtain green-card to live in United States, at least 8.16% of these people were tested under some kind of coercitive pressure.

Two patients claim they were tested after suffering rape. One was a prisioner in a crowded municipal jail, raped by 8 other prisioners. He had also a history of IDU, but these situation (rape on jails) is not seldom and an extremelly serious problem. The legal implications of the case are obvious. The other raped patient argues he was raped two years ago by an unknown man, but he did not went to the police, had Kaposi Sarcoma and were psychologically disturbed. So, we believe the rape is probably a invention, a manner to avoid talk about a possible homosexuality.

Of those tested due to clinical suspicion, 58/177 (32.77%) did not authorize testing or receive pre-test counselling, even when attended at a reference service (including the EDH). Adding that 23 compulsorily tested to these 58 who did not authorize testing, a total of 28.72% of the sample had a diagnosis process ethically disturbed. We also perceived a tendency - by the care-givers - of doing of the initial raport and counselling pre or pos-test a banality: some patients wich relate receiving of counselling, in fact were not able to explain simple things about the testing, what to do after receiving results or where to search for care.

Route of HIV infection was sex for 212/282 (75.18%) - 46 (21.7%) of these had less than 3 sex partners within the past two years; unknown for 51/282 (18.09%). Of these 51, 8 (15.69%) had past STD history.

Homosexual men were 98/208 (47.12%) and had a higher chance of been diagnosed before illness than women who got AIDS from a single partner: OR 3.88 (1.79-8.42) - Table 3. They seems be “over-tested” when compared to married women, wich are “under-tested” - a clear confusion between what we calls “the concepts of moral and biologic risk” - and also are more able to search for care and have better perception of their own risk than women do.

Four of the married women with signs of severe immune disfunction were exhaustively - and sometimes invasively - investigated by many physicians (searching for hypotireoidism, myeloma, lymphomas, etc) before someone consider the hypotesis of HIV infection - in fact, a exclusion diagnosis to them. Two of them had children aged less than five years old. One became pregnant when already ill and had her immune disfunction imputed to the pregnancy.



Table 3 - Statistical comparison between stage of HIV infection at diagnosis for “non-promiscuous”  women and homosexual men (N=149)



Stage of disease at diagnosis:


AIDS
ARC or Assymptomatic

Women married or with a single partner (51/74=68.92%)
31
20
51
Homosexual men
(98/208=47,12%)
28
70
98

59
90
149


                      OR= 3.88 Exact confidence limits: (1.79<OR<8.42)
                      Chi-Square - Yates corrected: 13.24              (p=0.002745)


Using the CDC and/or Caracas criteria for adults and adolescents HIV-infection classification and AIDS case definition, the clinical stage at diagnosis was AIDS for 155 (54.96%), AIDS Related Complex (ARC) for 31/282 (10.99%) assymptomatic for 89/282 (31.56%).

The first HIV-related illness was cerebral toxoplasmosis for 22/155(14.19%); wasting for 20 (12.9%); tuberculosis for 18 (11.61%); Candida for 12 (7.74%); chronic diarrhoea for 8 (5.16%); PCP for 6 (3.87%), advanced CMV retinitis for 6 (3.87%). A clear bias here is the highest chance to inform the infections more easily diagnosed or causing more severe illness. Of patients with HIV-related complaints (weight loss, fatigue, headache, neuropathy), 36.12% had been seen by at least one other doctor before the one who requested the anti-HIV testing.


CONCLUSIONS:

Confusion between the concepts of moral and biologic risk, lack of knowledge of early HIV infection symptoms and epidemic trends, lack of initial rapport makes diagnosis of HIV infection delayed and messy for these patients. Homosexual men are more promptly tested and able to search for care than married women. To improve early diagnosis, general population and physicians must be informed about the wide variety of non-specific symptoms of early HIV infection and Brazilian epidemic trends towards “empoverishment”, “feminization”, “juvenilization”, and “decentralization”.




Acknowlegments:

The author wants to express his gratitude to the patients and to some colleagues, members of the Hospital Eduardo de Menezes Infectious Diseases Study Group, wich so friendly helped by many ways:

Harewton Bicalho - MD

João Gentilini - MD

Leandro Santi - MD
Luciana Lara - MR
Lucinéia Carvalhais - MD
Silvia Hess - MD
Tania Marcial - MD

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