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News on Research and Medicines


[*]Geodon FDA Approval (Summer, '01)
[*]Behaviors and Feelings that Precede the Onset of Schizophrenia by Agnes Hatfield, Ph.D.  (Spring, '01)
[*]Psychiatric Research News in Brief by Agnes Hatfield, Ph.D. (Spring, '01)
[*]New Medications in Development (Winter, '99)
[*]Millions Not Getting Basic Treatment, PORT Study (Spring '98, revised August '00)
[*]Notes from the Recent Maryland Psychiatric Research Conference (Spring '98)

The NAMI headquarters website, www.nami.org, has a great deal of information on illnesses, treatments and research. Click on the following for more information:

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Geodon FDA Approval

 

Pfizer is pleased to announce that the FDA has approved the use of Geodon (ziprsidone HCI), an antipsychotic medicine for the treatment of schizophrenia.  Geodon is available in 20 mg, 40 mg, 60 mg and 80 mg capsules.  If you have any questions, or require additional information, please contact Pamela Gemmel at 212-229-8406.

 

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Behaviors and Feelings that Precede the Onset of Schizophrenia

There is increasing evidence that the earlier treatment can begin the better the outcome for Schizophrenia.  To intervene as early as possible, it is important to know the signs and symptoms that precede the actual onset of psychosis.  two researchers in Norway asked a sample of 19 individuals to recall the feelings and behaviors that precede the onset of their illness.  These patients found this difficult to do because changes occurred gradually, language was inadequate to describe their strange feelings, and they sometimes preferred to conceal these experiences.  Nevertheless patients and families were able to relate enough information to be of use to the researchers.

Patients reported a sense of losing themselves of not knowing who they were.  They has a pervasive sense of unreality and became preoccupied with a particular idea.  They had great difficulty with concentration, racing thoughts, and fear of losing control.  Their visual and auditory perceptions were unusually strong an troublesome.

Patients and their families noted four kinds of behaviors that occurred frequently during this prodromal period.  Most individuals quit school, university, or job usually after a long, unhappy struggle.  They exhibited marked shifts away from practical, social interest to introverted and individual interest such as meditation, religion, and mysticism.  Most of the individuals displayed marked and lasting social passivity, withdrawal, or isolation.  Parents reported marked and lasting change in global appearance or behavior.  They said “something was basically changed or wrong.”  They noted strange speech, preoccupation with irrelevant details, ignoring basic responsibilities, and impaired hygiene.

The researchers, Drs. Moller and Husby, acknowledge the difficulty in getting families and primary physicians to identify these prodromal symptoms early on so that they could bring their relative in for evaluation before the onset of psychosis.  They  recommend educate strategies directed toward: (1) teaching adolescents and young adults to identify subjective experience that might indicate the need to seek help; (2) educating parents, teachers, and counselors about at-risk behaviors that should be noted, and (3) enhance the knowledge of primary physicians about behaviors that should be noted, and (3) enhance the knowledge of  primary physicians about behaviors that indicate a need for referral to a psychiatrist.  (Moller, Paul & Husby, Ragnhild, “The Initial Prodrom in Schizophrenia:  Searching for Naturalistic Core Dimensions of Experience and Behavior”.  Schizophrenia Bulletin, 26(1):  217-232-2000.

Reported by Agnes Hatfield, Ph.D.

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Psychiatric Research News in Brief

All three of the Nobel Laureates in Medicine in year 2000 were researchers which had received support from NARSAD (National Alliance for Research in Schizophrenia and Depression).  NAMI members are entitled to be proud of this achievement.  NAMI was very involved in the founding of NARSAD and is one of its three current sponsors.  

One Nobel Laureate, Dr. Arvid Carlsson discovered that dopamine acts as a neurotransmitters in the brain, sending signals from one cell  to another.  Another winner, Dr. Paul Greengard furthered our understanding of the way messages are carried by neurotransmitters, and the third, Dr. Eric Kandel, was able to connect long and  short term memory to changes in nerve cells.  (NARSAD Research Newsletter, Fall 2000)

Agnes Hatfield, Ph.D.

 
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Millions with Schizophrenia Not Getting Basic Treatment, Landmark Study Shows Care Lags Far Behind Science

NAMI Empowers Consumers, Families to Take Control of Care by Putting First-of-its-kind Treatment Guide Directly in Their Hands

ARLINGTON, VA - In response to the alarming results of a landmark study which reveals that more than half of individuals with schizophrenia receive inadequate care, the National Alliance for the Mentally Ill (NAMI) released new treatment guidelines for this vulnerable population. Designed to help consumers and their families become more skillful partners in treatment decisions, the NAMI Consumer and Family Guide to Schizophrenia Treatment was widely distributed to consumers, families and healthcare providers around the country.

The Schizophrenia Patient Outcomes Research Team (PORT) Treatment Recommendations and the results of a corresponding study of actual patient care, both published in an 1998 issue of Schizophrenia Bulletin, underscore the need for greater efforts to ensure that treatment research findings are translated into clinical practice.

"It's a disgrace that more than half of the two-plus million Americans suffering from schizophrenia today receive substandard care," said NAMI Executive Director Laurie Flynn. "Sadly, this report comes as no surprise to thousands of families coping with this disorder. It merely confirms an abysmal level of care that far too many experience first-hand.

"Given what science has taught us about brain disorders and the remarkable schizophrenia treatments now available, individuals with this devastating illness have an unprecedented chance at real recovery today," said Flynn. "It's inexcusable for healthcare providers to ignore these life-improving advances.

"The NAMI guide empowers people to push for the treatments and services that have been shown to work," said Flynn. "It's a much-needed tool for recovery, and we want it in the hands of every person who needs it."

Schizophrenia Treatment Recommendations

Based on an exhaustive review of current scientific evidence documenting the most effective treatments, a team of more than 15 scientists from three major research centers has developed the first science-based guidelines for schizophrenia treatment: The Schizophrenia Patient Outcomes Research Team (PORT) Treatment Recommendations. Funded by the National Institute of Mental Health and the Agency for Health Care Policy and Research, the five-year study identifies medical treatments and non-medical services that have been proven to reduce schizophrenia symptoms and improve recovery.

The researchers organized a total of 30 treatment recommendations into seven categories of intervention:

  1. anti-psychotic medications;
  2. additional medications for depression, anxiety or hostility;
  3. electro-convulsive therapy;
  4. psychological treatments;
  5. family interventions;
  6. vocational rehabilitation; and
  7. assertive community treatment.

Schizophrenia Patient Study

Combining the expertise of the Center for Research on Services for Serious Mental Illness (at Johns Hopkins University and the University of Maryland), the University of Maryland Center for Mental Health Services Research, and the Maryland Psychiatric Research Center (at the University of Maryland), the research team went on to study the actual treatment received by hundreds of individuals with schizophrenia to determine how well their care conformed to the corresponding treatment recommendations.

The researchers found alarming rates of inappropriate dosages of anti-psychotic medications; untreated depression; untreated side effects; second-class treatment of African Americans; inadequate family supports; and minimal vocational rehabilitation and community-based treatment programs.

Overview of key findings:

Inappropriate dosages of anti-psychotic medications.

While most patients with schizophrenia do receive anti-psychotic medication, only 29.1 percent receive the appropriate dosage over the long-term. About one-third (31.9 percent) of patients are prescribed above the recommended dosage range and another third (39.1 percent) below range.

Depression not treated.

Fewer than half of the patients who also have depression receive antidepressant medication, despite the fact that 15 percent of people with schizophrenia commit suicide.

Untreated side effects.

Although the majority of study participants (74.2 percent of inpatients and 79.1 percent of outpatients) reported side effects from their anti-psychotic medications, only about half of these (53.9 percent inpatients and 46.1 percent outpatients) receive appropriate treatment to counteract these side effects.

"Outdated prescribing practices is a major contributor to the well-documented problem of relapse," said Laurie Flynn of NAMI. "Many individuals give up hope of ever feeling better and not surprisingly drop out of treatment. Much of the noncompliance and resulting disability might be reduced dramatically, if providers adhered to the PORT medication recommendations."

Second-class treatment of African Americans.

African Americans are almost twice as likely to be overmedicated with anti-psychotic medications (27.4 percent of minority patients versus 15.9 percent of their Caucasian counterparts), which also corresponds to a higher reported rate of side effects. In addition, African Americans are twice as likely to be denied medication for serious symptoms of depression (29.6 percent versus 47.3 percent of their Caucasian counterparts).

Inadequate family supports.

Fewer than 10 percent of families of outpatients with schizophrenia receive education and support, even though the vast majority of families are in regular contact with their relative with schizophrenia and family education has been shown to improve clinical outcomes.

Vocational rehabilitation lacking.

Even though 85 to 90 percent of individuals with serious mental illness are unemployed, less than one-fourth (22.6 percent) of those with schizophrenia are involved in any type of employment assistance program.

"Studies have consistently shown that vocational rehabilitation not only leads to significant gains in employment, but may also replace day treatment or partial hospitalization," said Flynn. "Employment assistance is critical for people to regain independence, dignity and purpose."

Minimal community-based treatment.

Only between 2 percent and 10 percent of individuals with schizophrenia are participating in assertive community treatment programs even though they are widely known to be highly effective in treating the most severe cases of schizophrenia and in preventing relapse and hospitalization.

The Program for Assertive Community Treatment (PACT) model consists of a team of care providers who provide direct treatment and support to people with schizophrenia where they live, not in a clinical setting. PACT team members make sure medications are being taken, watch out for early signs of worsening symptoms, and help clients with daily tasks, such as grocery shopping, managing money, and scheduling doctor appointments.

"Hospitalizing a person with a serious mental illness costs three to five times as much as providing comprehensive community services," said Flynn. "Many relapses could be prevented by such intervention. It makes no sense that clinicians are not translating 25 years of documented PACT success into daily practice. Don't they believe in recovery?"

New Schizophrenia Treatment Guide for Consumers and Families

Given the pervasive lack of appropriate care, NAMI has translated the PORT treatment recommendations into an easy-to-understand guide outlining the necessary core treatments that science has consistently proven work for people with schizophrenia. The advocacy groups is distributing the NAMI Consumer and Family Guide to Schizophrenia Treatment to its 1,140 affiliates nationwide, state and community mental health facilities, mental health providers, hospitals, and managed care companies in all 50 states.

"The PORT study indicts our healthcare system for failing to change old and ineffective patterns of care for schizophrenia," said Flynn. "Perhaps the best strategy for improving the lives of people with this debilitating illness is to get these treatment recommendations directly into the hands of consumers and families who will begin to demand no less than what works. While we cannot yet cure schizophrenia, we can give those who suffer from it a real chance for full and productive lives."

For more information on the PORT study, check out the NAMI headquarters update on PORT.



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Notes from the Recent Maryland Psychiatric Research Conference

from Agnes Hatfield, Ph.D.

Many NAMI members look forward to the annual conference of the Maryland Psychiatric Institute as a place to hear some of the most stimulating discussions and learn about the latest research in schizophrenia. The 1997 conference, held on November 24th, definitely lived up to its reputation. Some highlights of the conference are shared below.

Childhood Schizophrenia

Dr. Judith Rappaport of the National Institute of Mental Health said that schizophrenia was not distinguished from autism until 1971. Attempts to diagnose schizophrenia in children today are still difficult. Some people with early childhood schizophrenia may have a period which looks like autism. It is also difficult to differentiate schizophrenia from Multi-Dimensional Illness (MDI).

Children who have MDI continue to have a similar disorder as they grow up. The disorder does not turn into schizophrenia.

Children with schizophrenia tend to have more severe pre-morbid symptoms. They tend to resemble poor outcome adults. They have brain abnormalities similar to the later onset individuals; for example, smaller brain volume. There is enormous variability among patients. Dr. Rappaport feels that childhood-onset schizophrenia is the same disorder as that which occurs later in life.

Dr. Rappaport reports dramatic success treating young patients with clozapine.

Medication Compliance

Dr. Wayne Fenton of Chestnut Lodge reviewed extensive research on reasons for individuals with schizophrenia not adhering to their prescribed medications. Dr. Fenton said that we need to understand the decision making process of the individual that leads to noncompliance.

Although sometimes thought to be related to treatment compliance the following are not factors that relate to compliance: intelligence, education, age, gender, or number of relapses. Relapse is generally not a learning experience.

Some of the factors that do relate to noncompliance are severity of pathology, substance abuse, and side effects of medication. Severity of side effects are probably the strongest predictors. People with grandiose delusions may also resist medications because these beliefs produce great self esteem when they are present.

The delayed consequences of non-adherence to medication is a problem. The person has difficulty associating lack of medications with the symptoms he or she is experiencing. People are more compliant when they feel better after taking something. This is rarely the case in schizophrenia. There are psychological aspects to taking medication that need to be considered. Taking medications may have a negative meaning to some individuals.

  • It may be a control issue or expression of anger at family or provider
  • It may be equated with sickness
  • It may be equated with poison invading the body
  • It may be considered a sign of weak character

People more often adhere to their medications if they live with relatives or if they have stable housing. Also important are good patient-physician relationships and clinical settings which are comfortable and inviting. People need to perceive the benefits as outweighing the adverse effects in achieving their goals. Money and transportation are crucial factors in complying with treatment.

The Ethics of Research

Dr. Will Carpenter addressed the issue of ethics in research, especially the importance of informed consent. To give informed consent a person must have an understanding of the procedure, ability to reason about it, and be free to make a choice.

Dr. Carpenter felt it was necessary to have medication-free subjects to do accurate research and that it can be predicted that will be no long-lasting adverse effects from this experience.

New Drug Treatments

Dr. Robert Conley of the MD Psychiatric Research Institute, began his talk by pointing out that between 1975 and 1990 there were no new neuroleptics on the market. Since 1990, four new medications have received FDA approval; Clozaril, Risperdal, Xyprexa, and Serequel.

None of the new medications is perfect, but they tend to be a marked improvement over traditional drugs for many people. The criteria of effectiveness are: effectiveness with both positive and negative syptoms, greater compliance, low side effects, and simple dosing (once a day is preferred).

There are side effects with new medications that are troubling. Clozaril has risk of weight gain and cardiovascular problems as well as white bloood cell suppression.

The effectiveness of Risperdal is in a narrow range of about 3 to 5 mgs. More is not better. Too much results in extrapyramidal side effects. On the other hand, Xyprexa is now being prescribed in higher dosages than at first. The average is now in the range of 15 to 17 mgs.

The recommendation now is to give all people with schizophrenia a trial with the newer atypical medications if possible.


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NAMI Maryland
To send an E-mail to NAMI Maryland, click here==> namimd@nami.org
This document was prepared by Janet Edelman. jedelman@comcast.net

newsre.htm -- Revised: Monday, October 30, 2006