Shared decision-making preferences of people with severe mental illness

OBJECTIVE: Perceived roles and preferences were explored for shared decision making among persons with severe mental illnesses. METHODS: In this pilot study, 30 adult clients with severe mental illness in a community mental health center were surveyed about decision making regarding psychiatric medications, rehabilitation, and general medical care. RESULTS: Clients generally expressed a desire for greater participation in decisions about psychiatric care than they currently experienced. Regarding use of new psychiatric medications, 23 persons (77%) preferred autonomous or shared roles, but only 11 (37%) rated their current roles as more than passive (z=-2.83, p=.005). Clients were less likely to prefer a passive role in medication decisions about psychiatric care than about general medical care (seven persons, or 23%, versus 23 persons, or 77%; z=-3.01, p=.003). CONCLUSIONS: Most clients with severe mental illnesses prefer shared decision making, particularly in relation to their mental health care.     

Employees' perspectives on ethically important aspects of genetic research participation: a pilot study

PURPOSE: Insights from genetic research may greatly improve our understanding of physical and mental illnesses and assist in the prevention of disease. Early experience with genetic information suggests that it may lead to stigma, discrimination, and other psychosocial harms, however, and this may be particularly salient in some settings, such as the workplace. Despite the importance of these issues, little is known about how healthy adults, including workers, perceive and understand ethically important issues in genetic research pertaining to physical and mental illness. METHOD: We developed, pilot tested, and administered a written survey and structured interview to 63 healthy working adults in 2 settings. For this paper, we analyzed a subset of items that assessed attitudes toward ethically relevant issues related to participation in genetic research on physical and mental illness, such as its perceived importance, its acceptability for various populations, and appropriate motivations for participation. RESULTS: Our respondents strongly endorsed the importance of physical and mental illness genetic research. They viewed participation as somewhat to very acceptable for all 12 special population groups we asked about, including persons with mental illness. They perceived more positives than negatives in genetic research participation, giving neutral responses regarding potential risks. They affirmed many motivations for participation to varying degrees. Men tended to affirm genetic research participation importance, acceptability, and motivations more strongly than women. CONCLUSION: Healthy working persons may be willing partners in genetic research related to physical and mental illnesses in coming years. This project suggests the feasibility and value of evidence-based ethics inquiry, although further study is necessary. Evidence regarding stakeholders' perspectives on ethically important issues in science may help in the development of research practices and policy.     

Placement challenges: implications for long-term care of dementia sufferers

Caregivers and long-term care staff seek appropriate placements for dementia sufferers, but there is little empirical research to guide such decision-making. However, recent national trends in mental health care have emphasized the placement of persons with serious mental illness in privatized, community-based residences. This body of empirical research has indicated that persons with psychosis, substance use disorder, assaultive behavior, and medication noncompliance have shorter tenure in these residential settings. These findings are also important for other, more traditional health care settings, as the patients discharged from community residences may require assistance on occasion from such other settings. This study continues the inquiry into the characteristics of patients with serious mental illness, who have shorter tenure in community residences. Dangerous behaviors, treatment-resistant psychosis, medical illnesses, and social-interpersonal skill deficiencies were common causes for discharge in this study. Since there remains a paucity of published empirical studies on the issue for patients with Alzheimer's disease and other dementias, we present the implications of, and guidelines for, addressing these issues in dementia sufferers in long-term care settings.     

Ethical issues in psychiatric research on children and adolescents

Psychiatric research on children and adolescents is ethically justified by the need to reduce the burden that mental illnesses place on young people, their families, and society. Such research must be conducted with careful attention to the ethical principles of beneficence, justice, and respect for persons. Child and adolescent psychiatrists who collaborate on research trials or advise patients and families about research participation should consider nine domains when evaluating the ethical acceptability of particular protocols. These domains include scientific merit and design; expertise, commitment, and integrity; risks and benefits; confidentiality; participant selection and recruitment; informed consent and decisional capacity; incentives; institution and peer/professional review; and data presentation. Special ethical issues in child and adolescent psychiatry research concern the use of randomized, controlled treatment trials; the informed consent process for research involving adolescents; the therapeutic misconception; and conflicts of interest in physician referrals.     

Use of depot antipsychotic medications for medication nonadherence in schizophrenia

Objectives: To describe factors associated with initiation of depot antipsychotic medications in psychiatric outpatients with schizophrenia and recent medication nonadherence. Methods: A national sample of psychiatrists reported on adult outpatients with schizophrenia who were nonadherent with oral antipsychotic medications in the last year. Results: In total, 17.6% of psychiatrists initiated depot antipsychotic injections. Initiation was significantly and positively associated with public insurance, prior inpatient admission, proportion of time nonadherent, average or above average intellectual functioning, and living in a mental health residence. Use was inversely associated with using second-generation antipsychotics and other oral psychotropic medications prior to medication nonadherence. Psychiatrists who were male, nonwhite, and more optimistic about managing nonadherence were more likely to initiate depot injections. Conclusions: Initiation of depot injections is a joint function of patient, physician, treatment, and setting factors. Use of long-acting preparations in this population is uncommon despite clinical recommendations urging their use.     

Community-based long-term care for older persons with severe and persistent mental illness in an era of managed care.

The authors describe current needs and trends in the mental health care, including long-term care, of older persons with severe and persistent mental illness. The literature suggests that emerging models of managed long-term care hold promise for integrated services but do not currently address the specialized mental health needs of this patient group. The authors review issues in financing long-term mental health care, including controversies over fee-for-service and carve-out and carve-in arrangements. Without mechanisms to adequately finance services, adjust for risk, and measure outcomes, the authors conclude, managed care arrangements will be in conflict with the goal of high-quality care for older adults with severe and persistent mental illness. Proposed directions for future models of care for this group include integration of mental health and medical services, integration of specialized geropsychiatric services with developing community-based long-term care systems, blended financing under shared risk arrangements, and assurance of accountability and outcomes under managed care.     

Integration of cognitive behavioral therapy into psychiatric rehabilitation day programming

Cognitive Behavioral Therapy has substantial empirical support for the treatment of people with severe and persistent mental illnesses. Efforts to integrate this type of therapy into psychiatric rehabilitation practices are growing. This paper describes an innovative integration of Cognitive Behavioral Therapy into a psychiatric rehabilitation day program attended by people with severe and persistent mental illnesses and frequently co-occurring substance use disorders. The challenges of maintaining the cognitive model and other core features of Cognitive Behavioral Therapy in a heterogeneous, large, group-based program are discussed.     

Treatment prospects for persons with severe mental illness in an urban county jail

OBJECTIVE: A retrospective study of inmates with severe mental illness in a large, urban county jail aimed to obtain information about their psychiatric and criminal histories and status, the psychiatric services they used while incarcerated, and the challenges they might present in psychiatric treatment after release. METHODS: The authors ascertained demographic characteristics, diagnoses, psychiatric and legal histories, and current psychiatric condition and treatment from jail psychiatric records of a random sample of 104 male inmates with mental illness and from electronic county mental health records and state records of criminal histories. RESULTS: Seventy-eight inmates (75%) were diagnosed as having a severe mental illness. Of these, 59 (76%) required inpatient care or its equivalent for part of their time in jail for the current offense. Of the inmates with severe mental illness, 92% had a history of nonadherence to medications before this arrest, 95% had prior arrests, 72% had prior arrests for violent crimes against persons, and 76% were known to have a history of substance abuse. CONCLUSIONS: A large percentage of persons with severe mental illness received their acute psychiatric inpatient treatment in the criminal justice system rather than in the mental health system. The persons with severe mental illness in this study would present a major challenge in treatment in any setting given their psychiatric and criminal histories. The resources of the mental health system need to be greatly expanded, with priority given to treating persons who are criminalized or who are in danger of becoming criminalized.     

Use of antipsychotic medications among HIV-infected individuals with schizophrenia

Persons with schizophrenia face elevated risk of infection with HIV. While HIV therapy is demanding, patients diagnosed with both conditions also require appropriate and consistent management of their psychiatric illness, for the same reasons that generally apply to persons with schizophrenia and because untreated psychiatric illness can interfere with full participation in HIV care. This study examines the correlates of use of and persistence on antipsychotic medications among HIV-infected individuals with schizophrenia, using merged New Jersey HIV/AIDS surveillance data and paid Medicaid claims. Persistence was defined as at least 2 months of medication use in a quarter. We identified 350 individuals who were dually diagnosed with HIV and schizophrenia. Overall, 81% of these beneficiaries had at least one claim for an antipsychotic medication at some point between 1992 and 1998. Multivariate techniques were used, including simple logistic regressions on use and robust longitudinal regressions that controlled for repeated observations on the same individual and treatment gaps. Among users of antipsychotic medications, persistence was very low at 37%. Racial/ethnic minorities were less likely to receive atypical antipsychotic medications. Use of atypical antipsychotics was associated with higher persistence. Our study confirmed past findings of racial disparities in the receipt of atypical antipsychotic medications. Findings suggest that use of atypical medications may benefit individuals dually diagnosed with HIV and serious mental illness.     

A comparison of type 2 diabetes outcomes among persons with and without severe mental illnesses

OBJECTIVE: Type 2 diabetes is an important comorbid medical condition associated with schizophrenia. The objective of this study was to compare glycosylated hemoglobin (HbA(1c)) levels of patients who had type 2 diabetes and schizophrenia with those of patients who had type 2 diabetes and major mood disorders and those who had type 2 diabetes but who did not have severe mental illness. METHODS: A sample of 300 patients with type 2 diabetes was recruited from community mental health centers in the greater Baltimore region and nearby primary care clinics. Of these, 100 had schizophrenia, 101 had a major mood disorder, and 99 had no identified severe mental illness. HbA(1c), the main outcome measure, was compared between the group with schizophrenia and the other two groups. RESULTS: All three groups had HbA(1c) values above recommended levels. HbA(1c) levels were significantly lower among patients with schizophrenia than among patients who did not have severe mental illness but were not significantly different from those of patients who had major mood disorders. Patients for whom olanzapine was prescribed had higher HbA(1c) levels than those for whom other antipsychotic agents were prescribed. CONCLUSIONS: All three groups of patients require improved diabetes treatment to achieve acceptable HbA(1c) levels. There may be previously unrecognized benefits for diabetes management among persons with severe mental illnesses who are receiving regular mental heath care, but these individuals may also have risk factors that can influence diabetes outcomes and HbA(1c) levels.     

International clinical trials with applicability to mentally impaired individuals: the conundrum of third world sites

Research on the effectiveness of treatment programs in early stages of severe mental illness raise significant ethical questions when conducted in industrialized countries that have adequate protections for the human subjects of biomedical and behavioral research. Before embarking on similar trials in developing countries, researchers face formidable barriers that must first be addressed and overcome. The challenges to external sponsors of research in conducting ethically responsible clinical trials in developing countries include at least the following: the existence of alternative belief systems regarding the causes and treatment of mental illness; difficulty in implementing the results of successful research in resource-poor countries; providing for adequate prior ethical review in the host country of the proposed study; and problems in ensuring that voluntary, informed consent is properly obtained from research subjects or their legally authorized representatives. Global justice demands that we not adopt one ethical standard for rich countries and another for resource-poor countries.     

Improving treatment adherence in patients with schizophrenia

Nonadherence to antipsychotic medications is an enormous challenge for clinicians and patients in the treatment of schizophrenia. Nonadherence and partial adherence are associated with high rates of relapse, rehospitalization, and suicide attempts. Assessing adherence can be difficult because patients are likely to overestimate their medication adherence and may not report skipping doses or discontinuing medication. Strategies for assessing and improving adherence rates among patients with schizophrenia, including the use of long-acting depot antipsychotic medications, are discussed.     

Use of nursing homes in the care of persons with severe mental illness: 1985 to 1995

OBJECTIVE: The study examined patterns of care for persons with mental illness in nursing homes in the United States from 1985 to 1995. During that period resident populations in public mental hospitals declined, and legislation aimed at diverting psychiatric patients from nursing homes was enacted. METHODS: Estimates of the number of current residents with a mental illness diagnosis and those with a severe mental illness were derived from the 1985 and 1995 National Nursing Home Surveys and the 1987 and 1996 Medical Expenditure Surveys. Trends by age group and changes in the mentally ill population over this period were assessed. RESULTS: The number of nursing home residents diagnosed with dementia-related illnesses and depressive illnesses increased, but the number with schizophrenia-related diagnoses declined. The most substantial declines occurred among residents under age 65; more than 60 percent fewer had any primary psychiatric diagnosis or severe mental illness. CONCLUSIONS: These findings suggest a reduced role for nursing homes in caring for persons with severe mental illness, especially those who are young and do not have comorbid physical conditions. Overall, it appears that nursing homes play a relatively minor role in the present system of mental health services for all but elderly persons with dementia.     

A naturalistic study of risperidone maintenance treatment of outpatients with severe mental illness.

In a naturalistic study of the effectiveness of atypical antipsychotics for the long-term outpatient treatment of persons with severe and persistent mental illness, 19 patients began taking risperidone and were prospectively evaluated. Nine patients dropped out of risperidone treatment before three months; four of them later responded to clozapine. The ten patients who completed the study on risperidone were less severely ill at baseline. Three completers with unremitting negative symptoms required a combination of risperidone and typical antipsychotics. The results suggest that risperidone is effective for about half of patients with severe and persistent mental illness. Very ill patients who are not responsive to risperidone or combined antipsychotic therapy will likely benefit from clozapine.     

Recovery and Serious Brain Disorders: The Central Role of Families in Nurturing Roots and Wings

Recovery in severe mental illness is a powerful concept for consumers, invoking a journey through understanding and acceptance of illness and disability, along with hope for a quality life, self-empowerment, and responsibility. Although not widely recognized, the journey toward recovery is also important for family members of individuals with severe mental illnesses, who often serve in a care-giving or supportive role for their loved ones. From the family perspective, to make recovery a real possibility, several issues must be confronted. First, progress toward recovery must acknowledge and involve care-giving and supportive family members, recognizing their significant role in the lives of many individuals with severe mental illnesses as well as the journey of family members in understanding and accepting a severe mental illness in a loved one. Second, a real, recovery-oriented system implements treatments and supports shown to be effective. In this day and age, the gap between research findings and ordinary care condemns too many consumers and their families to outcomes far short of what is possible. This includes not only medications, psychotherapy, employment services, dual diagnosis services, housing and other supports for consumers, but also family education, shown to be effective by a large body of research. Third, a recovery-oriented system of care cannot afford to dance around the thorniest and most controversial issues in severe mental illnesses—such as individuals with the most intractable forms of illness or the relatively infrequent but very real situations in which either consumers or family members are assaultive or abusive. All of these elements are essential if recovery is to be more than a slogan, but rather a true goal in a system of care that respects consumers with these disorders and their care-giving family members. There are only two lasting bequests we can hope to give our children. One is roots; the other, wings. (Hodding Carter)NAMI Campaign to End Discrimination     

Pharmacoeconomic evaluation of schizophrenia in Taiwan: model comparison of long-acting risperidone versus olanzapine versus depot haloperidol based on estimated costs

Antipsychotics are the keystone in schizophrenia treatment. Although the benefits of the new generation of antipsychotics has been demonstrated over the last decade, the issues of patient compliance and higher purchasing price of atypical antipsychotics remain unresolved. Risperidone is the only atypical antipsychotic agent with long-acting formulation. Long-acting risperidone is a water-based injection and it has been associated with a low level of pain. The aim of the present study was to test whether an improvement in compliance with the use of a long-acting risperidone, compared with olanzapine and depot haloperidol, can increase the effectiveness and the cost-effectiveness indexes. An economic comparison model with decision tree, rather than a prospective design with real clinical drug trial, was applied. The unit cost for each medical procedure was obtained from the claimed-database of the Bureau of National Health Insurance in Taiwan. An executive committee simulated the incidence of extrapyramidal side-effects and proposed a therapeutic model for each strategy based on a literature review. The probabilities of treatment response of different agents and those of different mental health states were estimated by the executive committee and 10 senior psychiatrists who were randomly selected. Sensitivity analysis was performed for drug cost-effectiveness and compliance improvement for using long-acting risperidone. The results showed that long-acting risperidone is more cost-effective than either olanzapine or depot haloperidol for treating schizophrenia patients whose conditions are stable and whose illness duration ranges from 1 to 5 years. The comparison model with the Kaplan-Meier decision tree may serve as an alternative to prospectively designed studies for cost-effectiveness of atypical antipsychotics.     

Treatment of the psychotic patient who is violent.

Aggression among patients with serious mental illness occurs relatively infrequently, but it is a significant concern for patients, relatives, mental health professionals, and the public. Recognition of this risk and providing access and continuity of appropriate psychiatric care should be major clinical and administrative objectives in the management of violence in psychotic patients. To date, pharmacologic approaches have been unclear and inconsistent. At present, typical antipsychotics continue to have a primary role in acute management and in long-term management, in which noncompliance necessitates the use of long-acting depot neuroleptic preparations. Atypical antipsychotics in acute and long-acting intramuscular forms doubtless will influence and expand the choice for acute management of hostile psychotic patients and the long-term management of poorly compliant patients who are at risk to become violent on relapse. Persistent aggression should be managed by atypical antipsychotics with a preferential indication for clozapine, for which the most data on efficacy are available. The role of adjunctive medications is presently unclear. A major focus of care should be to refine legal processes and to conduct intervention studies aimed at enhancing treatment compliance. Violence risk reduction is not only crucial from a societal perspective, but also it is a humanitarian necessity to alleviate the burden and stigma for patients with serious mental illness.     

The diffusion of new antipsychotic medications and formulary policy

Spending on antipsychotic medications continues to escalate as new products such as atypicals are increasingly used to treat schizophrenia and other conditions. Given that per person spending on behavioral health benefits is shrinking while spending on pharmaceutical products is increasing, the psychotropic portion of mental health expenditures is likely to continue to increase in the future. The diffusion of these new behavioral health technologies, or the rate at which these products have spread through the market, has been very uneven. Differences in adoption and diffusion rates of psychotropic medications across insurance settings, geographic regions, or subpopulations defined by age, gender, or racial or ethnic groups have important implications for the quality of care received by persons with mental illnesses. This article reviews the evidence on the diffusion of antipsychotic medication and discusses the implications of formulary policies on diffusion, addressing the health care service and administrative context in which the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) project is being conducted and which it is intended to inform.     

Is antipsychotic medication stigmatizing for people with mental illness?

Antipsychotic medications are clearly identified as important in the treatment of individuals with schizophrenia and with bipolar disorder. However, negative societal reaction related to having a serious mental illness and the socially undesirable side effects associated with antipsychotic medication treatment may combine to worsen stigma associated with treatment for mental illness. Specific stigmatizing effects of antipsychotic therapy may be difficult to evaluate independently from factors such as symptoms, insight into illness and side effects. Attitudes towards antipsychotic medication may be positive in individuals who recognize therapeutic drug effects, however other individuals may view medications negatively due to a sense of stigma. Stigma among individuals with bipolar disorder in relation to treatment with antipsychotic medication has not been well addressed in the literature. An additional concern among individuals with bipolar disorder who receive antipsychotic medications may be the notion that antipsychotics are 'schizophrenia drugs', and thus an inappropriate treatment for their condition. Antipsychotic medications can be stigmatizing for patients with serious mental illness, however the roots of stigma are extensive, and efforts to minimize stigma can only be successful when addressed by the individual with illness, their families and loved ones, treatment providers and society at large.     

Regular sources of medical care among persons with severe mental illness at risk of hepatitis C infection

OBJECTIVE: An estimated 19.6 percent of persons with severe mental illness are infected with the hepatitis C virus. Given the pressing need to identify and treat persons with severe mental illness who are at risk of hepatitis C infection and transmission, the authors sought to estimate the proportion of hepatitis C-positive and -negative persons with severe mental illness who have a regular source of medical care. METHOD:S: Data for this study were obtained from 777 adults with severe mental illness at four diverse geographic sites at which respondents with severe mental illness participated in a structured interview and laboratory testing for HIV infection, AIDS, hepatitis B infection, and hepatitis C infection. RESULTS: In bivariate analyses, 54.2 percent of hepatitis C-positive and 62.5 percent of hepatitis C-negative study participants with severe mental illness had a regular source of medical care. In multivariate analyses in which potential confounders were statistically controlled for, hepatitis C-positive persons with severe mental illness were less than half as likely as hepatitis C-negative persons to have a regular source of care. Being older, married, insured, or employed or having self-reported health problems increased the likelihood of receiving care. Being black or male or living in a community with high exposure to community violence lowered those odds. CONCLUSION: There is an urgent need to improve access to medical care for persons with severe mental illness, especially those who may be at high risk of or are already infected with the hepatitis C virus.