- Email: [email protected]
Research on HIV, AIDS, and severe mental illness: Recommendations from the NIMH national conference
Clinical
Psychology
Review, Vol. 17, No. 3, pp. 327-331, 1997 Copyright 0 1997 Elsetier Science Ltd Printed in the USA. All rights reserved 0272-7358/97 $17.00 + .oo
PIIs0272-7358(97)00022-6
RESEARCH ON HIV, AIDS, AND SEVERE MENTAL ILLNESS: RECOMMENDATIONS FROM THE NIMH NATIONAL CONFERENCE Karen McKinnon New
York State Psychiatric
Michael Syracuse
Francine Columbia
ABSTRACT.
Institute
I? Carey University
Cournos University
We summarize tke recommendations for research that em.erged from a NIMH-
sponsored Conference on Hm AIDS, and Severe Mental Illness. Recommendations are made in four areas, namely, qbiakmiolo~ of HIV infection, e$demiolo~ of sexual and drug-use risk behaviors, risk reduction and transmission pevention,
and treatment of infected persons. This
research is urgently needed to adequately respond to the AIDS t@o!.emic among pea@ with severe mental illness. 0 1997 Elsevier Science Ltd
RECOGNIZING treatment
THE
decisions
National Institute clinicians, mental
scarcity of empirical
for people
information
with severe mental
of Mental Health convened health care administrators,
to guide HIV prevention
illness,
and
the Office
on AIDS of the
a National Conference and consumers. The
of researchers, conferees were
assigned to review the extant research and to set a new research agenda designed to understand and reduce the impact of the AIDS epidemic on this population. This Correspondence should be addressed to Karen McKinnon or Francine Cournos, 722 West 168 Street, Unit 112, New York, NY 10032; or to Michael P. Carey, Department of Psychology, Syracuse University, 430 Huntington Hall, Syracuse, NY 132442340; email: [email protected]. 327
328
K. McKinnon, M. I? Carey, and B Cournos
group then made recommendations for future research in four areas: epidemiology of HIV infection, epidemiology of sexual and drug-use risk behaviors, risk reduction and transmission prevention, and treatment of infected persons. This paper summarizes the recommendations that emerged at this Conference.
EPIDEMIOLOGY
OF HIV INFECTION
Eleven HIV seroprevalence studies of adults with severe mental illness have been published in peer-reviewed journals to date (see Cournos & McKinnon, this issue). These studies sampled cross-sectionally fewer than 3,000 psychiatric patients in the United States in a small number of geographic regions in predominantly urban sections of the country. Overall, the results of these studies indicate HIV infection rates ranged from 4% to 23%, with an average prevalence of 8% among psychiatric patients who have been tested for HIV. The members of the working group that reviewed this literature recommended that extant research must be broadened in a number of ways in order to learn the true distribution of HIV infection in this population. First, investigators must differentiate HIV-infected people with preexisting mental illnesses from those whose psychiatric illness occurs after infection. Because HIV directly infects the brain, a small proportion of people develop symptoms, typically in late-stage AIDS, that mimic those commonly seen with chronic psychotic disorders. It is not yet known whether HIV infection may increase the risk for psychiatric illness in an otherwise asymptomatic HIV-infected person. Defining the boundaries between these two different types of patients will help to clarify the extent to which preexisting severe psychiatric illness and associated conditions predispose an individual to HIV infection, as opposed to the extent to which HIV infection is a factor in vulnerability to later psychiatric illness. This important epidemiological task has not yet been done. In addition, direct comparisons between samples of people with severe mental illness and the larger communities from which they derive have not been made; these comparisons would allow researchers to conclude whether HIV infection rates are, indeed, higher among people with psychiatric disorders than others. Within the psychiatric population, some studies have examined associations between HIV infection and risk behaviors. However, these studies often relied on information obtained from patients’ medical charts that tend to underestimate both sexual and drug use risk behaviors. Studies that link HIV serostatus with self-reported risk behaviors would provide a more accurate estimate of HIV infection by transmission category. In addition, interviewing patients about their risk behaviors would allow researchers to explore the contexts in which risk-taking behaviors occur. All of these research topics must be investigated over time using longitudinal designs in order to learn whether the rate of HIV infection in this population has stabilized and how many new cases appear each year (i.e., incidence). New, comprehensive, multisite studies that sample people with severe mental illness in multiple urban, suburban, and rural locations in the U.S. are desirable, but constitute a more ambitious undertaking than any previous study. Ongoing studies of people with first-episode psychosis or long-term treatment for severe mental illness could add HIV-relevant measures to their protocols to answer some of the epidemiologic questions that remain unanswered more than a decade into the AIDS epidemic among people with severe mental illness.
Recommendations from the NIGH
EPIDEMIOLOGY
National Conference
OF SEXUAL AND DRUG-USE
329
RISK BEHAVIORS
Research on the behavioral epidemiology of HIV and AIDS among persons with a severe mental illness has been more abundant. Twenty-eight peer-reviewed studies were located that have examined HIV risk behaviors among people with severe mental illness in the U.S. (Carey, Carey, 8c Kalichman, this issue). Results from these studies indicate that as many as one third of all psychiatric patients sampled had a history of drug injection; one half to three quarters of patients sampled were sexually active in the past year, with approximately one third reporting multiple sex partners. A significant minority of those surveyed indicated that they had used drugs during sex and/or traded sex for drugs, money, or other goods. The vast majority of those surveyed used condoms inconsistently, if at all; yet it is not known whether the rate of condom use among psychiatric patients is significantly lower than in the general population. It is not yet known whether results from these cross-sectional studies reflect sexual and drug-use behavior norms among people with severe mental illness. Confidence in generalizing these findings is also undermined by a scarcity of reliability studies of self-reported behavior in this population. The behavioral epidemiology working group recommended that research needs be devoted to basic measurement concerns, including the reliability and validity of self-reported sexual and drug use behavior, and the development of new methods for documenting risk-taking. In addition, the link between specific features of severe mental illnesses and risking-taking has rarely been examined. The working group also encouraged greater attention to the contextual determinants of risk behavior, including the influence of gender, sexual victimization, social stress, living conditions, social networks, family and other relationships, and mental health policy - particularly that which restricts condom distribution - on behaviors associated with HIV risk. Both quantitative and qualitative studies are needed to understand patterns of risk behavior over time. RISK REDUCTION
AND TRANSMISSION
PREVENTION
INTERVENTIONS
Although effective cognitive-behavioral and skills-based interventions have been developed and tested with a number of populations (e.g., gay and bisexual men, people who inject drugs, prostitutes, high-risk urban women, and adolescents), few controlled studies have been completed with the severely mentally ill (Kelly, this issue). Those studies that have been done provide evidence that psychiatric patients can tolerate and benefit from frank discussions of intimate behaviors and AIDS, and they can improve their interpersonal and social skills relevant to risk reduction. However, much research remains to be done. First, research needs to address how factors and phenomena that are salient or unique to having a severe mental illness influence intervention response. Extant interventions need to be tailored for this population, taking into account psychiatric symptoms and their severity, including cognitive impairment; co-morbidities such as substance use disorders; the impact of psychiatric medication effects on libido; contextual reinforcers of risk and its reduction; and the influence of past trauma on risk-taking. The life circumstances that hinder and promote harm reduction warrant careful study. In addition, investigators must improve study methodology, both quantitative and qualitative, in order to enhance the utility of their findings. They need to identify, evaluate, and validate measures of outcome, effects, and power. Moreover, they must
K. McKinnon, M. rl Carey, and I;: Cournos
330
identify factors such as intervention setting and marketing strategies that engage the highest risk people in intervention trials. Differential interventions for HIV-positive and HIV-negative psychiatric patients may also be needed. Finally, investigators must test a broader repertoire of intervention models and these models must be assessed at multiple levels: individual, system, network, care provider, and community. In the process, researchers will be able to identify barriers to HIV prevention in treatment settings for people with severe mental illness and develop techniques to overcome barriers to prevention services for psychiatric patients. The utility of an intervention model can be measured by whether it can be used and sustained within existing systems of care for people with severe mental illness. TREATMENT
OF HIV-INFECTED
PEOPLE WITH
SEVERE MENTAL
ILLNESS
The most neglected area of research is the investigation of the course of HIV infection among persons who have a severe mental illness (McDaniel, Purcell, & Farber, this issue). Yet, HIV infection is an enormous problem in both public and private mental health treatment settings where many cases are unrecognized by patients, clinicians, and administrators. People with undetected infections cannot benefit from early medical interventions that slow disease progress. Because mandatory HIV testing of psychiatric patients is not warranted, the first task of researchers must be to examine individual, provider, and system motivations to detect infection among psychiatric patients. In addition, assessment tools to differentiate people with severe mental illness who become infected from those who acquire HIV and develop neuropsychiatric complications are needed. In the domain of treatment, integrated psychiatric and medical therapies are rarely provided. This becomes especially important with HIV-infected psychiatric patients because of the complexity of drug-drug interactions. Programs for treating both mental illness and HIV or AIDS must build on existing knowledge, use a case management approach, and focus on simultaneous treatment of dual and possibly triple or quadruple diagnoses. Mental health care providers will need effective training programs to advocate for integrated medical care for people with severe mental illness and improve family monitoring of patients’ health. Such programs must be compared to programs for HIV-infected people who do not have severe mental illness in order to understand their relative efficacy and to set quality control standards. Once such programs are developed, the next step will be to examine whether these settings meet the HIV-related physical and mental health care needs of their patients. Factors to examine include policies, practices, quality of care, staffing, financing, cost, geographic differences, and program type differences. Implementation must be followed by assessment of the extent to which people with severe mental illness actually receive HIV-related medical care. This may vary by stage of illness at which they enter treatment and the kinds of services they receive. Services must comprise the full range of known interventions from early treatment with antiviral medications, to clinical trials, to screening for risk behaviors, to risk/transmission reduction interventions, to treatment for co-morbidities. Receiving medical care for HIV infection may also vary by the setting in which treatment occurs and the degree of service integration for HIV, mental illness, and social services. Co-factors for medical care that must be examined include living arrangements, ethnicity, gender, family and other social supports, and type of insurance that pays for medical and psychiatric treatments. Barriers to HI&elated care for psychiatric patients must also
Recommendations from the NIMH National Conference
331
be identified. Those barriers thought to play a role are stigma, difficulties with informed consent, denial of illness, lack of expertise on the part of providers, compliance and adherence to complex treatment regimens, motivation, and fiscal, political and familial constraints. SUMMARY Research is needed to better understand the prevalence of HIV and AIDS among persons with severe and persistent mental illnesses across the United States. Epidemiological research must look broadly at HIV-related risk behavior, and examine the extent and social organization of sexual and drug-use behavior. Research efforts might begin by targeting high-risk individuals in community samples, and then extend into the general population of individuals troubled by the most severe mental illnesses. Assessment methods and data collection measures must be improved, and risk reduction strategies appropriate to the life circumstances of the severely mentally ill need to be developed, implemented, and evaluated. Integration of effective medical treatments with psychiatric treatments and psychosocial interventions is urgently needed. Only then can an adequate response to the AIDS epidemic among people with severe mental illness be achieved.
- The authors acknowledge the support of the National Institute on Mental Health (grants MH46251, K21-MHOllOl, and ROl-MH54929) and the New York State Office of Mental Health.
Acknowledpnents
Psychology
Review, Vol. 17, No. 3, pp. 327-331, 1997 Copyright 0 1997 Elsetier Science Ltd Printed in the USA. All rights reserved 0272-7358/97 $17.00 + .oo
PIIs0272-7358(97)00022-6
RESEARCH ON HIV, AIDS, AND SEVERE MENTAL ILLNESS: RECOMMENDATIONS FROM THE NIMH NATIONAL CONFERENCE Karen McKinnon New
York State Psychiatric
Michael Syracuse
Francine Columbia
ABSTRACT.
Institute
I? Carey University
Cournos University
We summarize tke recommendations for research that em.erged from a NIMH-
sponsored Conference on Hm AIDS, and Severe Mental Illness. Recommendations are made in four areas, namely, qbiakmiolo~ of HIV infection, e$demiolo~ of sexual and drug-use risk behaviors, risk reduction and transmission pevention,
and treatment of infected persons. This
research is urgently needed to adequately respond to the AIDS t@o!.emic among pea@ with severe mental illness. 0 1997 Elsevier Science Ltd
RECOGNIZING treatment
THE
decisions
National Institute clinicians, mental
scarcity of empirical
for people
information
with severe mental
of Mental Health convened health care administrators,
to guide HIV prevention
illness,
and
the Office
on AIDS of the
a National Conference and consumers. The
of researchers, conferees were
assigned to review the extant research and to set a new research agenda designed to understand and reduce the impact of the AIDS epidemic on this population. This Correspondence should be addressed to Karen McKinnon or Francine Cournos, 722 West 168 Street, Unit 112, New York, NY 10032; or to Michael P. Carey, Department of Psychology, Syracuse University, 430 Huntington Hall, Syracuse, NY 132442340; email: [email protected]. 327
328
K. McKinnon, M. I? Carey, and B Cournos
group then made recommendations for future research in four areas: epidemiology of HIV infection, epidemiology of sexual and drug-use risk behaviors, risk reduction and transmission prevention, and treatment of infected persons. This paper summarizes the recommendations that emerged at this Conference.
EPIDEMIOLOGY
OF HIV INFECTION
Eleven HIV seroprevalence studies of adults with severe mental illness have been published in peer-reviewed journals to date (see Cournos & McKinnon, this issue). These studies sampled cross-sectionally fewer than 3,000 psychiatric patients in the United States in a small number of geographic regions in predominantly urban sections of the country. Overall, the results of these studies indicate HIV infection rates ranged from 4% to 23%, with an average prevalence of 8% among psychiatric patients who have been tested for HIV. The members of the working group that reviewed this literature recommended that extant research must be broadened in a number of ways in order to learn the true distribution of HIV infection in this population. First, investigators must differentiate HIV-infected people with preexisting mental illnesses from those whose psychiatric illness occurs after infection. Because HIV directly infects the brain, a small proportion of people develop symptoms, typically in late-stage AIDS, that mimic those commonly seen with chronic psychotic disorders. It is not yet known whether HIV infection may increase the risk for psychiatric illness in an otherwise asymptomatic HIV-infected person. Defining the boundaries between these two different types of patients will help to clarify the extent to which preexisting severe psychiatric illness and associated conditions predispose an individual to HIV infection, as opposed to the extent to which HIV infection is a factor in vulnerability to later psychiatric illness. This important epidemiological task has not yet been done. In addition, direct comparisons between samples of people with severe mental illness and the larger communities from which they derive have not been made; these comparisons would allow researchers to conclude whether HIV infection rates are, indeed, higher among people with psychiatric disorders than others. Within the psychiatric population, some studies have examined associations between HIV infection and risk behaviors. However, these studies often relied on information obtained from patients’ medical charts that tend to underestimate both sexual and drug use risk behaviors. Studies that link HIV serostatus with self-reported risk behaviors would provide a more accurate estimate of HIV infection by transmission category. In addition, interviewing patients about their risk behaviors would allow researchers to explore the contexts in which risk-taking behaviors occur. All of these research topics must be investigated over time using longitudinal designs in order to learn whether the rate of HIV infection in this population has stabilized and how many new cases appear each year (i.e., incidence). New, comprehensive, multisite studies that sample people with severe mental illness in multiple urban, suburban, and rural locations in the U.S. are desirable, but constitute a more ambitious undertaking than any previous study. Ongoing studies of people with first-episode psychosis or long-term treatment for severe mental illness could add HIV-relevant measures to their protocols to answer some of the epidemiologic questions that remain unanswered more than a decade into the AIDS epidemic among people with severe mental illness.
Recommendations from the NIGH
EPIDEMIOLOGY
National Conference
OF SEXUAL AND DRUG-USE
329
RISK BEHAVIORS
Research on the behavioral epidemiology of HIV and AIDS among persons with a severe mental illness has been more abundant. Twenty-eight peer-reviewed studies were located that have examined HIV risk behaviors among people with severe mental illness in the U.S. (Carey, Carey, 8c Kalichman, this issue). Results from these studies indicate that as many as one third of all psychiatric patients sampled had a history of drug injection; one half to three quarters of patients sampled were sexually active in the past year, with approximately one third reporting multiple sex partners. A significant minority of those surveyed indicated that they had used drugs during sex and/or traded sex for drugs, money, or other goods. The vast majority of those surveyed used condoms inconsistently, if at all; yet it is not known whether the rate of condom use among psychiatric patients is significantly lower than in the general population. It is not yet known whether results from these cross-sectional studies reflect sexual and drug-use behavior norms among people with severe mental illness. Confidence in generalizing these findings is also undermined by a scarcity of reliability studies of self-reported behavior in this population. The behavioral epidemiology working group recommended that research needs be devoted to basic measurement concerns, including the reliability and validity of self-reported sexual and drug use behavior, and the development of new methods for documenting risk-taking. In addition, the link between specific features of severe mental illnesses and risking-taking has rarely been examined. The working group also encouraged greater attention to the contextual determinants of risk behavior, including the influence of gender, sexual victimization, social stress, living conditions, social networks, family and other relationships, and mental health policy - particularly that which restricts condom distribution - on behaviors associated with HIV risk. Both quantitative and qualitative studies are needed to understand patterns of risk behavior over time. RISK REDUCTION
AND TRANSMISSION
PREVENTION
INTERVENTIONS
Although effective cognitive-behavioral and skills-based interventions have been developed and tested with a number of populations (e.g., gay and bisexual men, people who inject drugs, prostitutes, high-risk urban women, and adolescents), few controlled studies have been completed with the severely mentally ill (Kelly, this issue). Those studies that have been done provide evidence that psychiatric patients can tolerate and benefit from frank discussions of intimate behaviors and AIDS, and they can improve their interpersonal and social skills relevant to risk reduction. However, much research remains to be done. First, research needs to address how factors and phenomena that are salient or unique to having a severe mental illness influence intervention response. Extant interventions need to be tailored for this population, taking into account psychiatric symptoms and their severity, including cognitive impairment; co-morbidities such as substance use disorders; the impact of psychiatric medication effects on libido; contextual reinforcers of risk and its reduction; and the influence of past trauma on risk-taking. The life circumstances that hinder and promote harm reduction warrant careful study. In addition, investigators must improve study methodology, both quantitative and qualitative, in order to enhance the utility of their findings. They need to identify, evaluate, and validate measures of outcome, effects, and power. Moreover, they must
K. McKinnon, M. rl Carey, and I;: Cournos
330
identify factors such as intervention setting and marketing strategies that engage the highest risk people in intervention trials. Differential interventions for HIV-positive and HIV-negative psychiatric patients may also be needed. Finally, investigators must test a broader repertoire of intervention models and these models must be assessed at multiple levels: individual, system, network, care provider, and community. In the process, researchers will be able to identify barriers to HIV prevention in treatment settings for people with severe mental illness and develop techniques to overcome barriers to prevention services for psychiatric patients. The utility of an intervention model can be measured by whether it can be used and sustained within existing systems of care for people with severe mental illness. TREATMENT
OF HIV-INFECTED
PEOPLE WITH
SEVERE MENTAL
ILLNESS
The most neglected area of research is the investigation of the course of HIV infection among persons who have a severe mental illness (McDaniel, Purcell, & Farber, this issue). Yet, HIV infection is an enormous problem in both public and private mental health treatment settings where many cases are unrecognized by patients, clinicians, and administrators. People with undetected infections cannot benefit from early medical interventions that slow disease progress. Because mandatory HIV testing of psychiatric patients is not warranted, the first task of researchers must be to examine individual, provider, and system motivations to detect infection among psychiatric patients. In addition, assessment tools to differentiate people with severe mental illness who become infected from those who acquire HIV and develop neuropsychiatric complications are needed. In the domain of treatment, integrated psychiatric and medical therapies are rarely provided. This becomes especially important with HIV-infected psychiatric patients because of the complexity of drug-drug interactions. Programs for treating both mental illness and HIV or AIDS must build on existing knowledge, use a case management approach, and focus on simultaneous treatment of dual and possibly triple or quadruple diagnoses. Mental health care providers will need effective training programs to advocate for integrated medical care for people with severe mental illness and improve family monitoring of patients’ health. Such programs must be compared to programs for HIV-infected people who do not have severe mental illness in order to understand their relative efficacy and to set quality control standards. Once such programs are developed, the next step will be to examine whether these settings meet the HIV-related physical and mental health care needs of their patients. Factors to examine include policies, practices, quality of care, staffing, financing, cost, geographic differences, and program type differences. Implementation must be followed by assessment of the extent to which people with severe mental illness actually receive HIV-related medical care. This may vary by stage of illness at which they enter treatment and the kinds of services they receive. Services must comprise the full range of known interventions from early treatment with antiviral medications, to clinical trials, to screening for risk behaviors, to risk/transmission reduction interventions, to treatment for co-morbidities. Receiving medical care for HIV infection may also vary by the setting in which treatment occurs and the degree of service integration for HIV, mental illness, and social services. Co-factors for medical care that must be examined include living arrangements, ethnicity, gender, family and other social supports, and type of insurance that pays for medical and psychiatric treatments. Barriers to HI&elated care for psychiatric patients must also
Recommendations from the NIMH National Conference
331
be identified. Those barriers thought to play a role are stigma, difficulties with informed consent, denial of illness, lack of expertise on the part of providers, compliance and adherence to complex treatment regimens, motivation, and fiscal, political and familial constraints. SUMMARY Research is needed to better understand the prevalence of HIV and AIDS among persons with severe and persistent mental illnesses across the United States. Epidemiological research must look broadly at HIV-related risk behavior, and examine the extent and social organization of sexual and drug-use behavior. Research efforts might begin by targeting high-risk individuals in community samples, and then extend into the general population of individuals troubled by the most severe mental illnesses. Assessment methods and data collection measures must be improved, and risk reduction strategies appropriate to the life circumstances of the severely mentally ill need to be developed, implemented, and evaluated. Integration of effective medical treatments with psychiatric treatments and psychosocial interventions is urgently needed. Only then can an adequate response to the AIDS epidemic among people with severe mental illness be achieved.
- The authors acknowledge the support of the National Institute on Mental Health (grants MH46251, K21-MHOllOl, and ROl-MH54929) and the New York State Office of Mental Health.
Acknowledpnents