National Alliance on Mental Illness
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Research With Broad Health Policy Implications Highlighted in NAMI Decade of the Brain
Arlington, VA -- Several promising, large-scale studies suggest early intervention in schizophrenia may forestall the worst long-term outcomes for this devastating brain disorder, reports the latest issue of The Decade of the Brain, a quarterly science-based publication of the National Alliance for the Mentally Ill (NAMI). Further, some promising data are emerging that augur the possibility of preventing the most debilitating and financially draining symptoms.
"Thousands of American families know that schizophrenia can strike just as teen-aged sons and daughters are poised to advance in education, careers, and adult lives," said Laurie M. Flynn, NAMI's executive director. "The results are usually a quick descent to severe disability that lasts a lifetime and an overwhelming drain on family resources that leads many into crushing poverty."
Schizophrenia affects up to three million Americans, with teenagers and young adults comprising 50 percent of the new cases. This life-altering brain disorder impairs a person's ability to think clearly, manage emotions, make decisions, and relate to others. It is characterized by hallucinations, delusions, confused thinking, and blunted or erratic emotions. The total cost in the United States for schizophrenia in hospitalizations, treatments, lost wages, family care-giving costs, and losses due to suicide is estimated at $50 billion.
"Until recently, a diagnosis of schizophrenia was tantamount to a death sentence," said Flynn, who has an adult child with a severe mental illness. "This research and the continued development of effective treatments offer real hope for those cut down by this all-consuming brain disorder."
Research Suggests Broad Policy Implications At the onset of schizophrenia a child typically is still a dependent and covered by a parent's health insurance policy. Fewer than 10 percent of insurance policies in this country provide coverage for severe mental illness equal to that for physical disorders. A family usually exhausts current benefits and, in the face of mounting bills, empties out a college fund, re-mortgages a home, or depletes a retirement nest egg. Many parents then face the decision of pushing their child into public welfare programs or not getting treatment at all, an option with dire consequences according to the latest research.
"Scientific evidence is mounting that early access to treatment is a vital linchpin for better long-term outcomes for persons with schizophrenia," said NAMI's Flynn. "In this age of skyrocketing health care costs, it's 'penny-wise and pound-foolish' not to ensure that these young men and women have adequate care. If providing early treatment can halt schizophrenia's severe drain on personal finances and public resources, not to do so portends disastrous, long-term fiscal implications."
As part of its national Campaign to End Discrimination, NAMI is working in more than 30 states to end unfair insurance practices, an effort that was spurred by last year's bipartisan push to pass federal legislation moving the country closer to full insurance parity for serious mental illness.
"Most families run out of coverage long before running out of illness. Now research is validating what direct experience has shown us. Treatment works."
Highlights from Decade of the Brain
The spring 1997 edition of The Decade of the Brain features four articles by researchers who discuss data emerging from studies and programs that have been designed to assess the role of early intervention and its affect on the course and treatment of schizophrenia.
Untreated Psychosis and the Pathophysiology of Schizophrenia: How They Affect the Course and Treatment of the Illness. Jeffrey A. Lieberman, M.D., professor and vice chairman of psychiatry at the University of North Carolina at Chapel Hill.
· With schizophrenia, the deterioration process almost always occurs in the early phases of the illness, which may last up to five years after the initial psychotic episode. The illness then reaches a plateau, and although "there may be subsequent exacerbations," there is no continued decline in functioning and no increase in residual symptoms.
· Lieberman interprets recent research "as suggesting that the active psychotic phase of the illness may signal an underlying pathological process that further injures the brain…[and] if not treated in time can be irreversible." He concludes that "early detection and intervention programs and methods of more effective initial treatment, including the use of antipsychotic drugs as first-line treatments" could lead to a dramatic reduction in the cumulative morbidity of schizophrenia…[and] save many patients from the full extent of the devastation that schizophrenia can cause in its victims."
The Prevention of Schizophrenia: Rationale and Strategies. Thomas H. McGlashan, M.D., professor of psychiatry, Yale University School of Medicine/chief executive officer, Yale Psychiatric Institute.
· The ultimate aim of early detection and intervention is true primary prevention, which is to eliminate the vulnerability to schizophrenia or to "block its expression developmentally." Working toward this as-yet-unattained aim, McGlashan and colleagues have launched a program in Norway designed to reduce the duration of untreated illness from the onset of prepsychotic symptoms in first-episode psychosis until treatment and to test whether this reduction results in improved prognosis.
- The program includes a special early detection team that will respond within hours to calls about possible cases of first-episode psychosis or of prepsychotic symptoms. Two years of treatment and research assessment will evaluate the effect of the timing of treatment-early vs. later. The researchers will determine whether early treatment results in a more rapid response and a better two-year course and outcome.
· In a separate study, McGlashan and Yale colleagues are designing a clinical trial with high-risk patients who are judged to be close to experiencing a psychotic episode to see how effective medication is for preventing onset, delaying onset, or reducing the incidence of schizophrenia.
Early Intervention in Australia. Patrick D. McGorry, Ph.D., professor at the Department of Psychiatry, University of Melbourne, Australia; Dominic Miller, publications and promotions officer, Early Psychosis Prevention Intervention Centre Statewide Services.
· The "delay between the onset of a psychosis and the commencement of effective treatment is associated with major damage to the social and family environment and vocational prospects" of young people with schizophrenia.
· The Early Psychosis Prevention and Intervention Centre (EPPIC) in Melbourne, Australia, was developed as a comprehensive model of care for patients age 16 to 25 to counter the delay between initial onset and treatment and its associated damage by identifying and treating early symptoms of psychosis and providing comprehensive services to tackle the issues young people face.
-A mobile assessment team provides information and support through each stage of assessment; offers cognitively oriented psychotherapy to help prevent the depression, anxiety, demoralization, and lowered self-esteem associated with a psychotic episode; and promotes the use of antipsychotic medication in low doses, which has been found to be very effective in first-episode psychosis and in reducing the problem of non-compliance.
-Outpatient case managers and families are central to the functioning of EPPIC and to the reduction of relapse.
-EPPIC's evolution has been guided by research, including the study of the pre-psychotic phase of illness and the pathways to initial treatment, the study of the needs of children whose parents are psychotic, and a comprehensive follow-up study that will allow further evaluation of EPPIC as a service. Early research results have been favorable.
Early Intervention in Schizophrenia: What Do We Know and What Does It Mean. Richard Jed Wyatt, M.D., chief of neuropsychiatry, National Institute of Mental Health (NIMH); Ioline D. Henter, research associate/writer, NIMH Neuropsychiatry Branch
· This article discusses four types of studies that provide evidence that early intervention with antipsychotic medications affects the long-term course of schizophrenia.
· Acknowledging that these studies must be interpreted cautiously, the authors nevertheless believe that they "provide tantalizing clues" about advantages of early intervention.
· Also raised are a number of difficult questions, such as how early is early intervention needed and for which patients does it make a difference.
NAMI is the nation's largest grassroots organization dedicated solely to improving the lives of persons with severe mental illnesses, including schizophrenia, bipolar disorder (manic-depressive illness), major depression, and anxiety disorders. NAMI has more than 140,000 individual members and 1,140 state and local affiliates in all 50 states, the District of Columbia, Puerto Rico, and Canada. NAMI's efforts focus on support to persons with serious brain disorders and to their families; advocacy for nondiscriminatory and equitable federal and state policies; research into the causes, symptoms, and treatments for brain disorders; and education to eliminate the pervasive stigma toward severe mental illnesses.
Editor's Note: Subscriptions to The Decade of the Brain, a quarterly science-based newsletter published by the National Alliance of the Mentally Ill, are available free to the media. Call Melissa Wajnert at (703) 516-7961 and ask for a media subscription. Subscriptions are available to the public for $20 a year. Mail a check (payable to The Decade of the Brain) to NAMI, Colonial Place Three, 2107 Wilson Blvd., Suite 300, Arlington, VA 22201-3042.