Psychological/Social Issues Associated with HIV Testing and OTC Home-Use HIV Tests

1. Psychological/Social Issues Associated with HIV Testing and OTC Home-Use HIV Tests Joseph Inungu, MD, DrPH Central Michigan University

2. Introduction • Diagnosis of HIV is associated with ongoing deterioration of the quality of life and a significant curtailment of life expectancy. • It is not surprising for the general public, as well as healthcare professionals, to assume that HIV diagnosis may lead to acute distress including anxiety, depression, or suicide (Green et al., 1996).

3. Introduction • This concern was confirmed in the literature showing a high prevalence of emotional distress, psychopathology, and suicide among HIV-infected people (Perry et al., 1984; Faulstich, 1987; Marzuk et al., 1988; Chuang et al., 1989; Dew et al., 1990).

4. Introduction • After 25 years of HIV epidemic, 40,000 new cases are being diagnosed annually in the USA. • The fact that HIV infection is being spread by people who are not aware of their serostatus underscores the need to increase the number of people who know their HIV serostatus (Janssen et al., 2001). • How can we achieve this objective without causing undue emotional distress as we contemplate the possibility of making HIV Rapid tests available over the counter?

5. Introduction The purpose of this presentation is to address the following questions: • What are the reasons people (adults or minors) seek HIV testing in the United States? • Does notification of a positive HIV test result in adverse emotional consequences? • Does notification of a positive HIV test lead to a sudden and substantial rise in suicide deaths or adverse social consequences?

6. What are the reasons people (adults or minors) seek HIV testing in the United States?

7. The percentage of adults who had ever tested for HIV has been increasing in the United States in the last 7 years.

8. Reasons for Seeking HIV testing • Several studies have examined the reasons adults seek HIV testing (Hardy et al, 1990; Kaiser Family Foundation, 2004; Inungu et al, 2002, 2005). • Since the findings are somewhat similar, I will summarize findings from my paper published in the 2005 edition of the Drug Benefit Trends (May) & The AIDS Reader (March).

9. Methods • Data from the 1998 and 2002 National Health Interview Surveys (NHIS) were used to determine the proportion of adults who ever tested for HIV in the USA in 1998 and 2002 and examine the reasons they sought HIV testing.

10. Results In 1998 31,138 adults were interviewed, 9728 (31.2%) reported they had been tested for HIV. In 2002 31,044 adults were interviewed, 10,760 (34.7%) had been tested for HIV. • Adults who ever tested for HIV in 1998 and 2002 were quite similar with regard to age, gender, race, ethnicity, education, and regional distribution.

11. 1998 n: 9,728 Female 56.9% 25-49 69.8% White 59.8% Married 47.4% 13-17 educ 60.3% South 37.9% 2002 n:10,760 60.2% 68.9% 58.0 % 49.5% 58.4% 40.2 % Characteristics of People Who Ever Tested for HIV

12. Reasons for Seeking HIV testing (Adults)

13. Reasons for Seeking HIV testing (Adults) Find out if Pregnancy Routine Health/Life Infected or delivery check up insurance Military induction

14. Although the CDCestimates that 50% of newly infected cases of HIV in the United States are younger than 25 years, youthremain underdiagnosed for HIV infection and are reluctant toseek HIV counseling and testing services (CDC, 1998) Adolescents are less likely than adults to accept HIV testing and theirposttest counseling return rate is about 60% (CDC, 1998). Lemp et al. (1994) found that 70% of the gay and bisexual HIV-infected young men in their sample did not know that they were HIV-positive before participating in the study. HIV testing Among Young Adults (13-24 years)

15. Murphy et al. (2000) studied 246 HIV-infected adolescents and 141 high-risk, uninfected adolescents at 15 sites nationwide to assess the reasons for testing: 73.6% of HIV-positive participants and 43.1% of HIV-negative participants reported being tested for HIV out of fear they had contracted the virus through sexual behavior 53.1% of HIV-positive participants and 66.1% of HIV-negative participants reported being tested for HIV based on healthcare providers’ recommendations. 25.7% of female participants and 30.2% of male participants reported being tested for HIV because of feeling sick. Reasons for Seeking HIV testing (Youth)

16. Pugatch et al. (2001) studied 204 youth, aged 18 to 25 years old in a state funded inpatient detoxification and found that the following factors were associated with test acceptance: a. Recent sexual activity b. Recent use of drug (metamphetamine or heroin combined with cocaine c. Recent perceived risk of HIV Reasons for Seeking HIV testing (Youth)

17. On the other hand, Rotheram-Borus et al. (1997) examined 272 high risk adolescents aged 13-23 years and reported that the most common reasons adolescents provided for not having been tested included: a. Fear of being under increased stress (47%), b. Fear of becoming suicidal (21%), c. Lack of importance of the test or result (14%), d. Fear of losing current housing (10%). The top two reasons were psychological in nature. HIV testing Among Young Adults (13-24 years)

18. Does notification of a positive HIV test result in adverse emotional consequences?

19. Psychological Issues Associated with HIV Test • The majority of studies have shown that people experience a high degree of distress at the time of testing (Ostrow et al., 1989; Jacobsen et al., 1990; Moulton et al., 1991; Perry et al.,1993, Sieff et al., 1999). • Once the test results become available, those who tested negative showed immediate relief of distress (Moulton et al., 1991; Perry et al.,1993, Sieff et al., 1999; Casadonte et al., 1990). • Notification of the result appears to dispel a sense of gloom in persons who incorrectly believed to be infected with HIV.

20. Psychological Issues Associated with HIV Test • With regard to a positive test result, discrepancy exists among various longitudinal studies: • The first group of studies (Coates et al., 1987; McCusker et al., 1988; Ostrow et al., 1989; Cochran et al., 1994; Morrison et al., 2002) reported a significant increase in total distress among HIV+ people compared the control group. • The second group of studies found a stable or non significant increase in psychological distress among HIV + people (Casadonte et al., 1990; Joseph et al., 1990; Moulton et al., 1991; Davis et al., 1995; Green et al., 1996; Rabkin et al., 1997) • The third group found a decline in severity of distress (Perry et al., 1993; Leiberish et al, 1997).

21. Factors Associated Adverse Psychological Effects People who experienced adverse emotional reactions were likely to: a. Have advanced HIV disease (Perry et al, 93) b. Previous history of psychiatric disorders (depression) (Perry et al, 1993) c. Be a Female (Morrison et al., 2002) d. Have low income (< $15,000/year) (Perry et al., 1993; Joseph et al., 1990) e. Be IDU or heterosexuals (Perry et al, 1993) f. Lack of social support (Cochran et al., 1994) g. Being African American ( Cochran et al., 1994) h. Young age ( Joseph et al, 1990).

22. Factors Associated Adverse Psychological Effects • There are limited longitudinal studies on changes of psychological symptoms among adolescent (Wilson et al., 2001). • Based on cross-sectional studies (Hein et al., 1995; Pao et al., 2000; Kalichman et al.,1997; Bachamas et al., 2002), adolescents have a high prevalence of psychiatric disorders (anxiety, depression, substance abuse, homelessness, runaway, sex abuse). • Their normative behaviors intersect with risk-taking behaviors (Futterman, 2004). • Adolescents do not handle stressful life event well. Younger teens (12-15 years) experience more distress than older teens (16-19 years) [Bachamas et al., 2002].

23. Factors Associated Adverse Psychological Effects Over the course of the HIV epidemic, studies reporting severe emotional reactions (denial, anxiety, depression, suicide ideation) were common during the early years of the epidemic (Coates et al, 1987; Ostow et al, 1989; McCusker et al., 1988 ). The number of studies reporting adverse emotional reactions diminished over time (Chesney et al., 1999). This change may be attributed to better pre and posttest counseling (Kelly and Murphy, 1994), but also may reflect some improvement in the public awareness (Chesney, 1999).

24. Review of Selected Studies • Rabkin et al. (1997) followed 112 HIV+ and 52 HIV- MSM for 4 years with semiannual psychological assessment. • All of the men had known their HIV status for at least 1 month before study entry.

25. Review of Selected Studies

26. Review of Selected Studies

27. Review of Selected Studies

28. Review of Selected Studies • Moulton et al. (1991) examined the psychological impact of notification in 107 MSM in San Francisco. • After HIV testing, subjects were invited to return for notification of the results. • Those who were positive and accepted to be informed about the test results (N=46) and those who did not want to be informed about the test result were examined (N=21) for psychological reaction.

29. Review of Selected Studies

30. Review of Selected Studies Median POMS score for HIV+ subjects who chose to be notified (solid circle) and who chose not to be notified (open circle).

31. Does notification of a positive HIV test lead to a sudden and substantial rise in suicide deaths?

32. Background • Suicide is the 8th leading cause of death in the United States and accounts for an average of 30,000 deaths per year. The total number of deaths has changed little over time (Mann, 2002). • Suicide rate in persons with cancer is two to 4 times that of the general population. The rate in persons with AIDS is 66 times that of the general population (Mann, 2002). • More than 90% of suicide victims have a diagnosable psychiatric illness (Isometsa et al., 1995)

33. Suicide • Perry et al. (1990) assessed suicidal ideation among 244 men and 57 women. Subjects filled the Beck Depression Inventory 2 weeks before and 1 week and 2 months after notification. • They found that among the 49 HIV+ subjects, the rates of suicidal ideation decreased from 28.6% at entry to 27.1% and 16.3% at the 1 week and 2 months. • Among the 252 HIV- subjects, suicidal ideation decreased from 30.6% at entry to 17.1% and 15.9% at follow up. • Among the 4.7% of seropositives and seronegatives with suicidal wishes, the Beck Depression Inventory suggested a clinical depression.

34. Suicide

35. Suicide • Grassi et al. (2001) studied suicide ideation and psychological morbidity among 81 HIV+, 62 HIV-/HCV+, and 152 HIV-/HCV- IDU. • They completed the Suicide Probability Scale (SPS), Brief Symptom Inventory, and Hospital Anxiety and Depression Scale. • No difference was found between the groups as far as the risk of suicide ideation at SPS, or psychological morbidity.

36. Suicide • Van Haastrecht et al. studied 86 HIV+ and 252 HIV- IDU for 4 years following notification of their HIV serostatus. • They recorded 7 suicides and 10 deaths from overdose. • Although the overall suicide/overdose rate was higher among HIV+ than HIV-, the rate ratio being 2.46 (95% CI 0.95-6.39) • High suicide/overdose risk shortly after test result notification was not reported. • The only 1 HIV+ IDU who died of suicide/overdose died after 6 months of first disclosure.

37. Suicide • Based on the literature, notification of the HIV positive serostatus does not appear to lead to a sudden and substantial rise in suicide death. • However, the development of HIV symptoms or the presence of severe depression may lead to suicide.

38. Does notification of a positive HIV test lead to adverse social reactions?

39. Social Adverse Reaction • Increased violence after HIV infection is a reality (Zieler et al. 2002, Gielen et al., 1997; Sowell et al., 2002; Decker et al., 2005). • In a study of 2864 HIV positive adults, Zieler et al. (2000) found that 20.5% of women, 11.5% of MSM, and 7.5% of heterosexual men reported physical harm since diagnosis, of whom half reported HIV status as a cause of physical harm. • Violence is particularly common in women. In the US, one third to one fifth of all women will be physically assaulted by a partner or ex-partner during their lifetime (AMA, 1992). Not only can gender-based violence lead to HIV infection, but it may also be a consequence of it.

40. Social Adverse Reaction • Sowell (2002) studied 275 HIV positive women 17 to 49 years. Before becoming HIV infected, 65% of them reported having been physically or sexually abused. After HIV diagnosis, 33% of the women reported been physically abused. • However, after reviewing the literature regarding violence and HIV status among women, Koenig and Moore (2001) found that violence is not statistically increased among HIV+ infected women compared to demographically and behaviorally similar uninfected women. • For a small proportion of women, violence may occur around disclosure or in response to condom negotiation.

41. Social Adverse Reaction • Klimax et al. (1998) interviewed 142 patients who attended a STD clinic and learned their HIV + serostatus 6-12 months before the interview. • They have disclosed their status selectively • Because of HIV, 4% had lost their job, 1% had been asked to move by landlord, and 1% had been assaulted.

42. Conclusions 1. People seek HIV testing for various reasons. The fact that adolescents appear to seek HIV testing following a recent high risk exposure is a matter of concern. More HIV education is needed in this age group. 2. The majority of studies discussed in this presentation were conducted in the 1980s and 1990s. Their findings may not be applicable today. Studies on psychological symptoms among HIV+ people during the antiretroviral era are needed. 3. The majority of these studies were unanimous about the relief of emotional distress following a negative test.

43. Conclusions 4. The discrepant findings with regard to a positive test are a matter of concern. 5. Differences in subjects and sites selection as well as the scales and/or instruments used may account for the difference (Gorp at al (1995). 6. However, the discrepancy may also suggests that factors other than notification play a more determinant role.

44. Conclusions • Although death from suicide is common among people with advanced HIV infection, notification of a positive HIV test does not appear to lead to a sudden and substantial rise in suicide death. 8. Social adverse reactions do occur following HIV diagnosis. They are often associated with lack of knowledge and fear.

45. THE END

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