Translation of the Schizophrenia Patient Outcomes Research Team Treatment Recommendations into an Educational Tool For Families and Consumers
Schizophrenia can seem like an impossible illness to understand. There are not a lot of books or magazine articles that explain how the disease works and gets worse. Being someone who suffers from schizophrenia (a consumer) or being a family member of a consumer can feel hard and like there is no where to understand the disease outside of what a doctor can tell you. You are not alone. It is believed that at any time there are 1.8 million Americans who are in the middle of suffering from acute schizophrenic. With schizophrenia being such a big problem and so many people being sick, there is constant research being done on all the different areas of the disease from how to talk to doctors to what kind of medication works best and how much of that medication should be given to control the disease without bad side effects. In the past 10 years there have been hundreds of research articles written by scientists and doctors explaining the new things they discovered about schizophrenia and the best way to treat the disease. Sadly, these new discoveries are usually shared between the scientists and are not easy for a consumer or family member to find and understand.
A group of researchers collected all of the new findings and scientific articles written about schizophrenia to review and see what discoveries were definite. They looked at all of the research and found that there are specific things that have been researched and rechecked to a point where the doctors can say that these 30 treatment recommendations the proven best possible way to care for someone with schizophrenia. Using these recommendations is called “evidence based practice” and it is hoped that
This small booklet is those 30 treatment recommendations that all doctors should be following written in a way for families and consumers to understand. This translation is for you to use both so you understand the illness and how you can better talk with your doctor about the treatment you are receiving.
THIS IS NOT MEDICAL ADVICE AND INFORMATION CHANGES QUICKLY, SO TALK WITH YOUR DOCTOR BEFORE MAKING DECISIONS-ed)
Treatment of Acute Symptom Episodes
The first seven recommendations are about treatment of “acute symptom of episode.” An acute symptom episode is when someone with schizophrenia is actively very sick. When you or you loved one starts to show the signs that you probably recognize by now that means things are about to get worse, that is an acute symptom. These first seven also talk about the first time someone gets sick and how to treat the first psychotic episode.
- Recommendation 1:
Antipsychotic medications, other than clozapine, should be the first thing that is used to reduce the symptoms of a psychotic episode. This means that when there are psychotic symptoms, do not wait for them to get worse, get medication immediately. The first response should always be to get the symptom under control with medication.
- Recommendation 2:
In this recommendation a certain minimum and maximum amount of the medication that should be given is described. It is important to understand what the dosage that a doctor is giving you or your loved one is and the chart is in the back, but keep in mind that there are sixteen medications listed in the PORT and the amount needed for each of them is different. The important part of this recommendation is that when medication is given for an acute episode it must be taken everyday for a minimum of six weeks. It has been found that for one episode the medication has to be taken for at least six weeks for the treatment to work. Even if it seems like the episode is over, the minimum six-week course has to be followed.
- Recommendation 3:
People suffering their first episode should be given a lower dose of any of the medications. People suffering their first episode should not be given the drug clozapine unless other medications have been tried first and found not to help.
- Recommendation 4:
In the past some doctors have used a kind of treatment where they give strong doses of medications as soon as there is the psychotic episode. It used to be believed that a big dose at the beginning of the episode would help end it faster, but the research has proven that the same normal dose should be given throughout the episode. When getting treatment for an episode, your doctor should give you the same dose for the whole minimum of six-week period and not lots of medicine for the first few days.
- Recommendation 5:
The research found that of the sixteen drugs used to treat an episode, none are better than any other is. The recommendations tell the doctors to use the medication that the patient likes the best and has worked before for the patient. This is very important to remember when getting treatment for an episode. There are sixteen different drugs that all treat the same. Since all of the drugs work the same the one that should be used is the one that has the least bad side effects. It also means that if one drug is not working for you or your loved one then there are 15 other ones that could also be tried. The goal is to find a drug that works, the first one that is tried is not the only thing you can do.
- Recommendation 6:
It is possible to take a blood sample that will tell the doctor how much of the medication is working in a persons body. The doctor only needs to monitor blood levels in some situations because the levels are not always correct. If you think the side effects are too great and over medication is happening, ask for a blood level. Blood levels are also sometimes used if the doctor suspects that the patient is not taking the medication. If you are a loved one of someone suffering from schizophrenia and you don’t think that they are taking their medicine, you can ask for a blood level for proof.
- Recommendation 7:
Sometimes the use of medication for schizophrenia can include extrapyramidal side effects. These effects include a feeling of restlessness and loss of spontaneity. You may have found that these troubling side effects seem worse than the disease. When this type of side effect is occurring, a doctor can prescribe drugs to fix the side effects. The drug commonly used is an antiparkinsons drug. The PORT recommendation says that the drug to control side effects should not be given in advance to prevent the effect from happening but that the doctor should wait until the patient tells them what side effects are troubling before prescribing more medication.
The next section of recommendations is about how to prescribe and treat the maintenance of the illness. After the psychotic episode is over, it is important to continue taking medication so another episode doesn’t occur.
- Recommendation 8:
When a patient experiences a good result on a medication and the symptoms have gone away or the illness has stabilized, the patient should continue to take the same medication for one year to reduce the risk of another episode or making the disease worse.
- Recommendation 9:
During the period after an acute episode, when the patient is taking the same medication for a full year, the level of the medication can be slowly reduced to a range where the symptoms do not come back. The standards include a number for doctors to follow but as a consumer or a loved one it is possible for you to ask if it is time to reduce the level of the medication-not stop taking it- just reduce the level. During the period of reducing the level of medication it is very important to pay close attention to make sure that the symptoms do not start coming back. If under a maintenance dose the symptoms start coming back, you should go to the doctor immediately.
- Recommendation 10:
Rechecking the medication and the health of the consumer should be ongoing. Just because a level has been reached where the consumer feels better it is very important to continue to regularly check with the doctor. In some case the medication level may be lowered even more or the doctor might notice symptoms that the patient did not. If the patient has had only one psychotic episode and nothing else happened during the full year of gradually reducing medicine, the doctor may say that it is okay to stop taking the medicine. When someone stops taking medicine is very important to understand that if you are not taking medication the symptoms could come back. For people who have had more than one episode, they should always take medication to control the disease and continue to see a doctor to make sure that the dose is correct.
- Recommendation 11:
Some doctors used to use a method of “targeted doses” where medicine was only given at certain times. This has been proven wrong. The best way to treat schizophrenia is to stay on the medication constantly and only change doses when the doctor thinks it is time. If your doctor wants to use “targeted dosage” bring in this booklet and explain that the research says that this is not a good idea. It may also be a reason for you to look for another doctor who knows about the best kinds of treatment.
- Recommendation 12:
There are ways of giving medication called depot medication where a shot is given that will deliver the right amount of medicine for a period of time so the person doesn’t have to take pills. Depot medication is as good as taking medication through pills and if you are not the kind of person who can remember to take pills everyday or you think that your loved one will not continue to take their medication then you should ask the doctor about depot medication.
Recommendations 13, 14 and 15 are about new antipsychotic medications and since the original PORT came out in 1995, there has been a great deal of new research into these medications and the standards will be revised to reflect these changes.
Sometimes when someone is suffering from schizophrenia they may also have other mental disorders that need to be treated. In other cases the side effect of the medication that works may be to cause symptoms like anxiety that are normally treated with medication also. This section is about when additional medications are needed.
- Recommendation 17:
People who have experienced a good result with antipsychotic medication to treat the schizophrenia may still have other symptoms like anxiety or depression. These other problems should be treated with additional medications. The standards recommend some specific drugs. The important thing for consumers and loved ones to remember is that even though the psychotic symptoms may have gone away, there may still be room for more drug treatment for other forms of mental illness and you can work with your doctor to fix these symptoms as well.
- Recommendation 18:
If the patient is using a newer antipsychotic drug but still have persistent symptoms of other disorders should be given the same treatment as in recommendation 17.
Electroconvulsive therapy, also known as shock therapy, has been proven to be effective in treating schizophrenia. The next set of recommendations say when the use of this treatment is the right choice to make and how this therapy should be used.
- Recommendation 19:
People who have not gotten better with medication should be considered for a trial of electroconvulsive therapy by itself or in combination with medication under three circumstances. If the person has been ill for less than a year, has been ill for more than a year but is in a state of getting another acute episode, or they have catatonic symptoms. Catatonic or affective disorders are when the person is not moving, active or showing any signs of being aware of their surroundings.
- Recommendation 20:
The number of treatments for a person with schizophrenia should be the same as for someone with an affective disorder, which is about 10 treatments.
- Recommendation 21:
There is a kind of shock treatment that is called regressive treatment; this kind should not be used on people with schizophrenia. If shock treatment is being considered for a loved one, talk to the doctor about what kind of treatment is being used and how many treatments the doctor is planning.
While medication is important to control schizophrenia, there are also some psychological therapies that can help once a person has stabilized. The next group talks about what kind of psychological treatment has been shown to work and what kind of people it will work for.
- Recommendation 22:
Individual and group therapy that talks about the past and uses interpretation of the unconscious does not work with people suffering from schizophrenia and should not be used.
- Recommendation 23:
The kinds of individual and group therapies that do work for people with schizophrenia include the following elements: education about the disorder, behavioral skills and skills that change the way you think about yourself and your illness. The therapy should focus on finding ways for the person to work around problems they have because of the illness and help come up with ways to deal with these problems.
When someone is recovering from a psychotic episode of schizophrenia, it is not only the patient’s life that is effected. Studies have proven that specific kinds of therapy and help for family members or other caregivers can help everyone involved deal with the disease in a better way.
- Recommendation 24:
Patients who have ongoing contact with their families should be offered a family therapy. The family therapy should be at least 9 months and should include educating family members about the disease, how to offer good support and crisis management skills in case their loved one gets sick again. The same therapy should be offered to caregivers that may not be family but are important in the patient’s life. For the consumer or loved one this means that controlling treatment and care should include talking to the doctor about all these other services and not just the medication.
- Recommendation 25:
The family therapy and help mentioned above should be offered to all families. It used to be thought that only families with a high level of emotion- like hostility or overenvolvement- would benefit from this type of therapy. It is now understood that all types of families would benefit from this therapy to help their loved one.
- Recommendation 26:
Some therapists used to use therapy based on the idea that the cause of schizophrenia was from the family. Science has proven this wrong and therapy that blames families for the illness should not be used.
Vocational (Job Training) Rehabilitation
For some consumers job training can be important in recovering from an episode of schizophrenia. This section describes which people would benefit from job training and what kinds of job training would be most appropriate.
- Recommendation 27:
When a person has stabilized their schizophrenia and is on a maintenance level of medication, it is often time for them to find a place in the world. Patients with schizophrenia should get job training to help get back into the job world when they have a background of working previously. Also, job training is important when the patient has a goal for themselves of getting a job to improve their life, seems like they would be good at working and has not had a history of many hospitalizations.
- Recommendation 28:
Job training for people with schizophrenia who are stable and living in the community is not enough. The job training is only the first part; other services are needed to back the training up. First, there should be pre-job training to help the patient get used to being back at work, next the job should be transitional. Recovering from and episode of schizophrenia and getting back to work requires some baby steps so the first job may not be as much as the person used to do. Finally, there should be ongoing counseling and even job clubs to offer support to the consumer.
Once someone is ready to leave the hospital there are different types of follow-up care and support that can be offered. This section talks about which types of care have had the best outcomes.
- Recommendation 29:
Some people who suffer from schizophrenia will continue to need a greater level of support in the community. It is important that systems are set up where the consumer can get assertive case management if they need it. This would be where a social service organization is found and a worker is assigned to make sure that the consumer is regularly checked on to insure that they stay as healthy as possible. Also, some people need assertive community treatment where they may live in a group house or go to a clubhouse during the day everyday. This is an important recommendation because it has been proven that the more involved and active case management and community treatment is better for the person than the old type of normal case management. Individuals with severe schizophrenia sometimes need a maximum level of community support.
- Recommendation 30:
The high level or assertive community programs should be aimed at patients who have had many repeat hospitalizations or a history of not staying on their medicine or getting sick again as soon as they leave the hospital. The more active treatment is different than a normal level of treatment. If you are the family member of someone who needs this level of treatment you should be asking the doctors and people at the hospital how assertive the treatment in the community is and try to get the most possible direct contact for your loved one.
Problem Statement: The 1990’s were politically called the decade of the brain. Research into the causes, treatment and management of schizophrenia made great bounds and the academic community is at a point where evidence based treatment can be a reality. However, the consumers of psychiatric treatment, their loved ones and family members are largely if not totally unaware of the advances in research and how this knowledge could help them to be active and informed partners in their management of the disease. Currently, there are no organized attempts to translate the research finding into a language that the consumers can understand. This project will develop a plan to translate the research to the consumers.
The National Alliance for Mental Illness (NAMI) claims over 250,000 members. The state and national conventions try to have experts give workshops to the consumers and family members but often there are no psychiatrists on the program.