Mental Health Guidelines Committee, December 2007
Patients with severe and persistent mental illness (SPMI) are commonly diagnosed with psychotic disorders, such as schizophrenia and schizoaffective disorder, and often have current or past experiences of hallucinations or delusions. SPMI diagnoses can also include mood disorders, such as bipolar disorder, or personality disorders, such as borderline personality disorder, which may or may not be associated with psychotic symptoms (see the Depression and Mania Guideline and Personality Disorders Guideline).
These patients often have impairments in social and occupational functioning that can result in social isolation and reliance on governmental economic supports. Fluctuations in mental health status, impairments in cognitive function, and lack of insight into having a mental illness may interfere with the patient’s ability to follow directions and to adhere to both HIV and mental health treatment (see Adherence to ART). Such considerations often require extra time and coordination of clinicians.
Studies documenting HIV infection rates among people with SPMI began to appear in the literature in the early to mid-1990s. Reported rates of HIV infection in these patients varied widely, from a low of 4% to a high of 23%. Most of these studies were conducted on New York City inpatient psychiatric units. The lowest reported rate of infection (4%) was found among patients who had been hospitalized for at least 1 year in a state psychiatric facility and represented those with the most chronic mental health disorders. Among patients admitted to psychiatric units, excluding those with a primary substance use disorder, the rates of HIV infection ranged from 5.5% to 8.9%. Infection rates ranged from 16.3% to 22.9% among mentally ill and chemically abusing (MICA) patients who were admitted to special units for the treatment of combined diagnoses of SPMI and alcohol or other substance use disorders .
Below are definitions of terms used in this chapter that may not be familiar in all primary care settings but that are commonly used among mental health professionals who manage patients with SPMI.
Glossary of Terms
- Severe and persistent mental illness (SPMI): SPMI refers to mental illnesses that can lead to substantially compromised social and occupational functioning. Patients with SPMI are commonly diagnosed with schizophrenia and schizoaffective disorder; other diagnoses can include mood disorders, such as bipolar disorder, or personality disorders, such as borderline personality disorder. However, it is important to note that the disorders described above do not always result in SPMI. Individuals with SPMI are frequently marginalized, vastly overrepresented in the prison population, and have a high incidence of comorbid medical conditions as well as a shortened lifespan.
- Positive, negative, and cognitive symptoms: SPMI is diagnosed by clinical symptoms that are generally categorized into positive and negative symptoms. Positive symptoms include hallucinations, delusions, and thinking disturbances, whereas negative symptoms are characterized by social withdrawal, blunted emotional response, and a lack of motivation. Cognitive symptoms include disorganized thoughts, difficulty concentrating and/or following instructions, difficulty completing tasks, and memory problems.
- Mentally ill chemical-abusing (MICA): This term is used by mental health providers to denote patients with the dual-diagnostic symptoms of both a SPMI and an active substance use disorder. Lifetime rates of alcohol and other substance use disorders have been reported to be approximately 50% among SPMI patients.
- McKinnon K, Cournos F, Herman R. HIV among people with chronic mental illness. Psychiatr Q 2002;73:17-31. [PubMed]
Acute Psychosis and Emergency Referrals
Patients with SPMI may present with either acute or chronic symptoms of illness. A person in an acute psychotic state will likely be very agitated and may pose a danger to him/herself or others. After addressing any life-threatening medical conditions, clinicians should refer patients exhibiting these types of behaviors for immediate psychiatric evaluation. If the symptoms are caused by interruption of psychotropic medications, resumption of these medications under the supervision of a psychiatrist may result in effective and timely stabilization of psychiatric symptoms. Patients presenting with delirium may have a severe and life-threatening neurologic or medical complication and should be sent immediately to the hospital (see Cognitive Disorders Guideline).
Psychotic illnesses are assumed to be primarily the result of neurotransmitter imbalances in the brain; however, psychotic disorders can also result from reactions to outside stressors or medications. These reactive psychoses are uncommon but do occur. They can be characterized by abrupt onset resulting from a severe stressor or the initiation of new medication. Acute psychotic episodes without a precipitant may or may not indicate a more chronic mental illness.
The differential diagnosis of an altered mental status is especially important in the presence of HIV infection because the virus itself is neurotropic and some of the opportunistic infections common in HIV-infected patients involve the central nervous system. Drug reactions to ARV medication may also result in psychiatric symptoms.
In addition to elevated rates of HIV infection, comorbidity with other medical conditions has also been reported in patients with SPMI. These include diabetes, hyperlipidemia, cardiovascular disease, obesity, malignant neoplasms, hepatitis C, osteoporosis, hyperprolactinemia, and irritable bowel syndrome . The side effects of antipsychotic medications contribute to some of these problems. However, clinicians may mistake physical complaints as psychosomatic symptoms. Several studies have shown that the detection rate of physical illness among people with mental health disorders is poor. Many of these undetected physical illnesses were found to be exacerbating or causing the patient’s mental health disorder .
Mental health professionals distinguish among positive, negative, and cognitive symptoms of psychosis (below). The positive symptoms are those most easily recognized by the clinician and include bizarre delusions and hallucinations. The positive symptoms are the most amenable to psychotropic treatment. Negative symptoms are more difficult to discern and treat. Patients with positive or negative symptoms that are not attributable to delirium or dementia should be referred for psychiatric assessment to clarify the patient’s diagnosis and treatment. Cognitive symptoms require careful assessment, particularly to distinguish between symptoms related to an underlying medical etiology from those associated with SPMI.
Positive symptoms of psychosis:
- Delusions, or false beliefs
- Hallucinations, which are most commonly auditory but can affect any of the senses
- Grandiosity, or an exaggerated sense of self-importance
- Suspiciousness, or being mistrusting and very guarded
- Hostility, or acting in an abusive or uncooperative manner
Negative symptoms of psychosis:
- Lack of drive or initiative
- Social withdrawal
- Emotional flatness or unresponsiveness
- Lack of spontaneity
- Concrete thought or difficulty in thinking abstractly
- Paucity of speech
- Poor communication skills
- Stereotyped thought or inflexible thinking that may seem unreasonable
- Physical symptoms that may involve poor grooming and hygiene
Cognitive symptoms: Cognitive symptoms associated with SPMI do not include delirium, which may be indicative of a serious non-psychiatric medical or neurologic illness, but do include the following:
- Problems with attention, information processing, new learning, and verbal recall
- Disorganized thinking, or inability to think in a logical manner
Cognitive symptoms may also result from mental retardation. This diagnosis can often be obtained from family members and other caretakers. There is usually a history of special schooling, and school records often contain IQ information. Clinicians should assess how these patients process information that is given to them. This can be performed by asking patients to explain in their own words what the clinician has told them. Of note, mental retardation also falls under Diagnostic and Statistical Manual IV-Text Revision Axis II disorders.
Mental retardation severity:
- Mild: IQ level of 50-55 to approx. 70
- Moderate: IQ level of 35-40 to 50-55
- Severe: IQ level of 20-25 to 35-40
- Profound: IQ level below 20 or 25
Treatment and Management
Patients with chronic SPMI often have a documented history of mental health treatment and also may have experienced episodes of acute psychosis. Clinicians should investigate a patient’s prior mental health treatment and contact the last known treating psychiatrist.
The importance of coordination of care between SPMI patients’ primary care clinicians and mental health providers cannot be overstated. A comprehensive treatment plan to coordinate mental health and medical care should be established in conjunction with a mental health provider.
When patients with SPMI do not agree to mental health evaluation and treatment by a mental health professional, the primary care clinician should consult with a psychiatrist, both initially and if assistance is required over time, when prescribing or changing psychotropic medications. If the healthcare team includes a licensed mental health professional (i.e., psychiatrist, clinical psychologist, clinical social worker, or psychiatric nurse), then the primary care clinician should consult with that team member on an ongoing basis regarding the patient’s treatment. Alternatively, the primary care clinician can establish a “silent partnership” outside of the team setting with a licensed mental health professional who can help the clinician develop a treatment strategy for the patient. Because psychiatrists are physicians and are familiar with medical illnesses and their treatment, as well as drug-drug interactions, initial consultation with a psychiatrist would be ideal for the primary care clinician to establish the patient’s overall care. If it is not possible to coordinate the patient’s overall care with a psychiatrist thereafter, then the medical provider should coordinate care with a licensed mental health professional in the primary role as silent partner for the nonpharmacologic aspects of the patient’s mental health care.
Many clinicians encounter patients with SPMI in their clinical practice. Some general guidelines for interacting with these patients in a partnership of care are listed below. If asked directly by the patient whether the clinician agrees with the patient’s beliefs, the clinician should respectfully explain that he/she see things differently but understands the patient’s concerns.
General guidelines for interacting with patients with SPMI:
- Become familiar with the person behind the illness; attempt to connect on a personal level
- Keep in mind that patients with SPMI are rarely physically violent (the low incidence of violence applies to all disorders associated with SPMI. However, comorbid substance use increases the risk of violence in these patients (see the Suicidality and Violence Guideline); potential for violence should be assessed on a case-by-case basis
- Be as straightforward as possible; do not be evasive or overly protective with medical information; the tendency of some patients with SPMI to be suspicious may be exacerbated by a clinician’s evasiveness
- Create a structured environment; patients with SPMI respond best when they know what is expected of them
- Do not try to change the belief systems of patients; delusional beliefs often do not prevent patients from understanding and following medical instructions
- Give them space; if they want to disengage in conversation, let them
People with SPMI may talk aloud to themselves, neglect their hygiene, or interact with others in a manner that may be perceived as odd or inappropriate. They may experience delusions, or perceptions that either have no basis in fact or are not held by the general population. However, patients with SPMI have capacity for reality-testing in other areas. Many of these patients can follow information and instructions for managing physical illness, particularly when their care takes place in a structured clinic setting and the staff conveys the message that their intent is to provide as much information as possible and to assist the patient in obtaining optimal medical care (see below). Clinicians should help all members of the staff develop and enhance their skills for working with patients with SPMI.
Maintaining the patient with SPMI in care:
- Assess patients’ psychosocial status regularly—housing, employment and/or social security disability benefits, health insurance, family and partner contacts, stability of relationships, including domestic violence screening
- Ask follow-up questions of patients regarding mental health and treatment progress as a routine part of clinic visits
- Monitor interactions between patients’ physical and mental conditions and the effects of psychotropic and other medications
- Make referrals to mental health care if the patient is not receiving mental health care
- Monitor adherence to recommended mental health treatment, including psychotropic medications, appointments with mental health providers, and attendance in support groups
- Include mental health diagnoses among other medical data, assessments, and plans
- Consider patients’ mental status before prescribing ARV medications
- Maintain follow-up phone contact with patients’ mental health treatment programs, including notifying programs of medication changes
- Monitor patients’ potential barriers to adherence to ARV therapy (ART) when applicable (refer to the Mental Health guideline Adherence to ART)
Clinicians and medical staff should be clear and respectful when giving patients information about their medical conditions and the strategies for the treatment of their conditions. The more open and direct the communication, the more likely the patient will accept a partnership of care. For example, “Your doctor will see you first, although you may have to wait 15 to 30 minutes because he/she is a bit backed up today. After your visit, the nurse will review your medications and answer any questions you may have about your medical care. You may also be asked to go to the lab for blood work.” Other patients may not react well to patients with SPMI, particularly during an acute episode, which can be distressing to other patients, both with and without SPMI. Clinicians should consider arranging clinic visits that minimize social stimulation, scheduling them early or late in the day and allowing extra time to coordinate the comprehensive care that these individuals frequently require.
Patients with severe mental health disorders should not be discriminated against when ARV treatment is considered. The likelihood of good adherence can be maximized by first addressing patients’ basic needs through their receipt of social support services when psychosocial challenges such as housing and income instability are present. Stabilization of psychiatric symptoms to the greatest extent possible is also necessary before initiation of ART.
Patients with severe affective disorders, such as bipolar disorder, have been found to have lower rates of adherence and to require increased efforts by care providers to overcome adherence barriers. By contrast, a retrospective study of Medicaid data has determined that patients with schizophrenia may be as adherent to ART as those without a serious mental health disorder, a finding that could reflect the benefit of integrating these patients into the healthcare system .
Adherence also can be enhanced when patients with SPMI are educated about their ARV treatment, including the potential side effects of psychotropic medications, as well as their potential interactions with ART and other medications. If side effects or interactions occur, clinicians and patients should discuss how they will be managed (refer to the Mental Health guideline Adherence to ART).
Patients with SPMI are at risk for sexual abuse and behaviors that can increase HIV transmission, including unprotected sex and injection drug use. Risk-reduction counseling and referral can address the risk factors that sexually active patients with SPMI often face. Management recommendations include the following:
Cases of coerced or forced sex:
- Intensive risk-reduction counseling that includes skills training in detecting and avoiding situations that increase risk for sexual violence.
- Rape crisis services, such as crisis counseling and emergency contraception, when patients present immediately after an episode of coerced sex.
- Referral for domestic violence services when appropriate.
Cases of inconsistent use of barrier protection: Intensive risk-reduction counseling, including the importance of effective barrier protection to avoid HIV transmission.
Cases of trading sex for money or drugs:
- Assistance with applying for benefits for food and housing and other services for which they might be eligible to reduce the likelihood of trading sex.
- Intensive risk-reduction counseling, including the importance of effective barrier protection to avoid HIV transmission.
- Referral for substance use treatment; in particular, injection drug users enrolled in methadone or buprenorphine programs are less likely to engage in high-risk behaviors such as unprotected sex or needle sharing; they are also more likely to adhere to HIV-related treatment and medication regimens (see Working With the Active User).
Sexual Risk Behaviors
Multiple sex partners are common among sexually active SPMI patients. One-third to one-half of sexually active psychiatric inpatients and outpatients have had multiple sex partners within the previous year. The sexual behavior of patients with SPMI can be secondary to the symptoms of a mental health disorder, such as hypersexuality during acute mania, and is also often characterized by a lack of condom use. These individuals are consequently at increased risk for transmitting HIV or, because the HIV status of sex partners is often unknown , becoming reinfected. Of particular concern are the high reported rates of coerced or forced sex among psychiatric outpatients. In one study, 14% reported that they were pressured into unwanted sex or otherwise sexually victimized in the previous year . It is important to educate patients about the risk of HIV transmission through unprotected sex. In addition, social services, including those for domestic violence, also may be necessary to address the heightened risks that these patients may experience.
Substance use disorders co-occur significantly among SPMI patients. Published reports estimate the co-occurrence to be approximately 50% over the course of the lifetime. Substance use may cause or exacerbate psychotic symptoms. The use of alcohol and other drugs is thought to contribute to HIV risk by increasing sexual desire, disinhibition of sexual behavior, promulgating trade of sex for money or drugs, and interfering with the use of safer sex practices. Among sexually active psychiatric inpatients and outpatients, 15% to 45% have reported intoxication with alcohol or other substances during sex in the past 6 to 12 months. Trading sex for drugs or for money to buy drugs within the past year was reported by 12% to 69% of sexually active patients. Unprotected sex with an injection drug user known to be HIV-infected in the previous 1 to 12 months was reported by 3% to 13% of psychiatric inpatients and outpatients .
Trading sex for money or drugs was more than three times as likely among patients with schizophrenia than among those with other diagnoses and more than five times as likely among those with certain positive symptoms, such as delusions .
Active substance or alcohol use is one of the few relatively consistent predictors of poor adherence to HIV treatment [6,7]. As such, clinicians should make appropriate referrals, including consulting a MICA specialist, when substance use disorders are identified in SPMI patients.
Patients with SPMI are at increased risk for suicide but are rarely violent toward others. Although some literature has shown an increase in violent tendencies for some subgroups of mental health patients, with comorbid substance use being the strongest association, most people with SPMI are nonviolent and respond eagerly to offers of help. However, people with SPMI are often suspicious, because of either the disorder itself or their experience with how others treat and react to them. Clinicians should be as straightforward as possible to dispel patient suspicion.
In the event that a patient with SPMI becomes threatening, the office or clinic should have a clearly stated plan for managing such emergencies. Such a plan may include protocols for contacting emergency services, escorting other patients from the area, safely isolating the patient from other patients, and ensuring that no one stands between the potentially violent patient and the exit.
- Walkup JT, Sambamoorthi U, Crystal S. Use of newer antiretroviral treatments among HIV-infected Medicaid beneficiaries with serious mental illness. J Clin Psychiatry 2004;65:1180-1189. [PubMed]
- McKinnon K, Carey MP, Cournos F. Research on HIV, AIDS, and severe mental illness: Recommendations from the NIMH National Conference. Clin Psychol Rev 1997;17:327-331. [PubMed]
- Carey MP, Carey KB, Kalichman SC. Risk for human immunodeficiency virus (HIV) infection among persons with severe mental illnesses. Clin Psychol Rev 1997;17:271-291. [PubMed]
- McKinnon K, Rosner J. Severe mental illness and HIV-AIDS. New Dir Ment Health Serv 2000;87:69-76. [PubMed]
- McKinnon K, Cournos F, Sugden R, et al. The relative contributions of psychiatric symptoms and AIDS knowledge to HIV risk behaviors among people with severe mental illness. J Clin Psychiatry 1996;57:506-513. [PubMed]
- Haubrich RH, Little SJ, Currier JS, et al. The value of patient-reported adherence to antiretroviral therapy in predicting virologic and immunologic response. AIDS 1999;13:1099-1107. [PubMed]
- Arnsten JH, Demas PA , Grant RW, et al. Impact of active drug use on antiretroviral therapy adherence and viral suppression in HIV-infected drug users. J Gen Intern Med 2002;17:377-381. [PubMed]
Mental Health Services and Programs
Mental health programs for people with SPMI may be located in hospital settings or in outpatient clinics in the community. Hospital-based psychiatric emergency departments are often best-suited to assess agitated patients and refer them to inpatient care if needed. Most hospital-based care is short-term because of the limited number of available long-term hospital beds. Many different organizations provide routine outpatient services. In addition, a variety of day programs are available where patients participate in groups focused on social, occupational, and self-management skills. Most commonly, psychotropic medication is prescribed by a psychiatrist, and other forms of therapy are conducted by social workers, psychologists, nurses, and other counselors. Programs for MICA patients combine mental health care with treatment for alcohol and other substance use disorders. Housing programs are also available for SPMI patients and offer a spectrum of supervision, from intensive to minimal.
Additional programs, such as intensive case management and assisted outpatient treatment, are also available to patients with SPMI. Intensive case management assigns the patient to a specialized case manager who carries a limited number of clients on his/her caseload in order to provide these patients with greater access and a higher level of care. Assisted outpatient treatment is provided through Kendra’s Law, which mandates psychiatric treatment for patients with serious mental health disorders who are unlikely to survive safely in the community without supervision. These services assess the needs of patients and connect patients with programs that can address those needs. For the New York State Office of Mental Health provides information about Kendra’s Law.
Support groups held in the community or within the psychiatric setting increase interaction between patients and their peers, which can decrease patients’ social isolation and help with self-management, including reduction in risk behaviors and maintaining or improving their physical health.
Resources are available in New York State for clinicians seeking assistance in caring for patients with SPMI. The New York State Office of Mental Health offers the Assertive Community Treatment (ACT) program, which is designed to offer services for patients with SPMI. See Local Mental Health Providers in New York State for a directory. New York City providers may also receive referrals through the NYC Health Mobile Crisis Teams by calling NYC Well:
- English: 1-888-NYC-WELL (1-888-692-9355), Press 2
- Spanish: 1-888-692-9355, Press 3
- Korean and Chinese: 1-888-692-9355, Press 4
- All other languages: 1-888-692-9355. Interpreters are available for 200+ languages. Stay on the line, and you will be connected to a counselor who can connect you to translator services.
- TTY for hearing-impaired callers: 711 (Relay Service for Deaf/Hard of Hearing). NYC Well Counselors are trained to accept calls from deaf and hard of hearing individuals using video relay services.
Mental Health Guidelines Committee, December 2007
|ALL RECOMMENDATIONS: SEVERE AND PERSISTENT MENTAL ILLNESS|
Acute Psychosis and Emergency Referrals
Treatment and Management
Mental Health Services and Programs