Diagnosis and Interventions
There is a spectrum of diagnosis with new onset psychosis that serves as a guidepost, including an array of psychiatric diagnoses, which are important to informing any decisions regarding intervention and treatment.
Diagnosis with psychosis is further complicated by the nature of the condition, which may be transient, intermittent, short-term or part of a longer-term psychiatric condition. For these reasons and more, diagnosis can be a difficult process.
In addition to diagnostic difficulties, finding the right intervention and treatment strategies can be confusing. The field of early intervention to prevent and improve outcomes for people with psychosis is gaining popularity. The creation of a strength-based, shared decision-making culture for choices of intervention has not fully taken root, but is actively in process. The research base on what helps people in the early stages of psychosis is growing, including the areas of medications, alternative therapies, shared decision making, cognitive behavioral treatment, brain training and the importance of family support.
Here at NAMI, we know that the sooner early symptoms and mental illness can be recognized and evaluated, the sooner that risks can be reduced and/or treatment can begin. This section strives to equip individuals and families with information that will enhance their understanding of the challenges associated with diagnosis, treatment, interventions and symptom management.
Earlier Diagnosis: The Controversy and the Potential
In terms of early intervention in a psychiatric diagnosis, most health care providers use the Diagnostic and Statistical Manual of Mental Disorders, currently in its fourth edition, with an updated edition in development. The DSM-IV focuses on traditional mental illnesses and psychosis due to medical conditions and substance use.
There is increasing interest in seeing if people living with emerging psychosis can be identified earlier in order to improve clinical outcomes. For the first time, the American Psychiatric Association (APA) is recommending adding a new diagnostic category to the DSM 5, due out in May 2013. The reasoning behind this diagnosis is analogous to the earlier identification of other medical concerns (like high blood pressure and diabetes) but remains controversial, as some of the people who are identified will not develop a psychiatric illness. For this reason, the diagnosis may be placed in the appendix of the DSM 5 to be studied further as opposed to being included in the main diagnostic framework. This discussion within the APA illustrates the interest and complexity in moving the field in the direction of early identification.
The new APA category was first called Risk Syndrome, which later morphed into Attenuated Psychosis Syndrome. NAMI submitted comments to the American Psychiatric Association on the proposed diagnostic category, then called Risk Syndrome. NAMI favored approaching the issue with recognition of the suffering caused by years of delay in diagnosis, and also with caution to the risk of over-identification. In its comments, NAMI emphasized that when indicated, non-medication strategies (called “psychosocial interventions”) that have no side effects should be the lead intervention.
The APA identified the following rationale supporting the diagnosis of Attenuated Psychosis Syndrome:
The potential benefit of establishing a category involves the evidence that psychotic illness is most effectively treated early in the course raising the potential that early intervention may have long lasting benefit that is not achievable with later therapeutic intervention. Also, as clarified in a recent IOM report, prevention science requires application. It seems reasonable to anticipate that mental disorders will gradually develop interventions for primary and secondary prevention associated with a number of disorders.
For these reasons, a risk syndrome for psychosis is being considered for either the appendix or possibly the list of disorders. Immediate issues relate to the unanswered question as to whether ordinary users of DSM 5 in ordinary settings will be able to reliably and validly identify cases based on criteria developed and validated by expert investigators. (DSM 5 Attenuated Risk Syndrome rationale).
Clearly the field is evolving in its conceptualization of the very early stages of psychosis and more research and evidence will help to make this clearer over time.
The Importance of a Complete Medical Evaluation
Getting a thorough medical workup is important to understanding the cause and diagnosis of psychosis. Most psychoses are ultimately psychiatric, but it is important to rule out other medical causes as these have different treatment pathways. For example, some medical issues (like an infection or out-of-control diabetes) may worsen existing psychosis and respond to treatment. Health care providers need to take a good history and conduct exams and laboratory studies as needed.
One diagnostic method health care providers may use to assess medical risk for brain-based symptoms such as psychosis is with the MINT, or Metabolic, Infectious, Neurologic, Traumatic, model:
- Has the person ingested drugs as above and has there been a toxicology screen performed?
- Has the person recently taken steroids or amphetamines? Is the person withdrawing form alcohol?
Here is what is known so far about certain substances and their relationship to psychosis:
- Marijuana is a hallucinogenic drug and appears to activate or trigger psychosis in vulnerable individuals. This risk correlates with earlier and more intensive use.
- Methamphetamine (including crystal meth):
- Amphetamine psychosis is an uncommon, but known, phenomenon of individuals who take “speed” or other stimulants, usually in excess, thus triggering a psychotic episode.
- These are classified as hallucinogenic drugs.
- Ketamine (“Special K”):
- An anesthetic that may produce psychosis.
- Steroids are known to be “mood looseners” which can activate mania or depression in vulnerable people. Steroids, in larger doses, also can produce psychosis.
- Is there a reversible medication effect?
- Has there recently been a medical intervention or surgical procedure?
- Are there other rare metabolic causes that can be identified (e.g. porphyria or Wilson’s disease)?
- For a person with an already existing psychosis, is there a metabolic condition (e.g. poorly controlled diabetes or infection) that is making the condition worse?
- Is there any infectious process (e.g. Lyme disease or meningitis) that could be related to the psychosis?
There is ongoing research investigating other possible infectious causes such as toxoplasmosis.
- Is there a neurologic condition that could be causing the symptoms?
An example of such a condition is temporal lobe epilepsy (TLE, also called partial complex seizures). This is a seizure in a part of the brain that involves perception, and hallucinations can result from the seizures, which do not cause a loss of consciousness. A history of a head injury is commonly associated with TLE. TLE requires anti-seizure medications and places care on a different pathway than antipsychotic therapy.
An EEG (electroencephalogram) is a procedure that studies electrical activity in brain and will be needed for diagnosis.
- Does the person evidence any other neurologic symptoms such as headache? If so, evaluation for rare conditions, such as brain tumors, should be evaluated. A neuro-imaging study like a CT scan or MRI may be undertaken to evaluate these possibilities.
- Has there been a traumatic brain injury?
Understanding the history of head injuries and trauma is important to better appreciate the role of injury in the presentation. Traumatic Brain Injuries (TBI) can present with many different cognitive and emotional aspects including in rare cases psychosis.
Challenges and Delays in Diagnosis
There are many challenges in assessing a new onset psychosis. First, the person may be quite afraid and overwhelmed and may not appreciate that their delusions or hallucinations are driven by an illness. This, of course, complicates any natural motivation for help seeking. For people who cannot appreciate their symptoms (a condition called anosognosia in medical terminology), additional challenges follow.
Once medical causes have been ruled out, psychiatric diagnostic interviews are required. In addition, other tools may be used to understand what is happening in the brain, such as neuropsychological testing, which shows how a brain is functioning in more detail (executive functioning, memory, attention, etc.). In some cases, it may be useful to help determine more about how the psychosis is impacting other important cognitive functions like memory attention and ability to prioritize tasks.
For families, providing support and navigating the medical system can be quite stressful in this time. For both the impacted individual and families, consider attending NAMI’s Family-to-Family education program to learn from others who have “been there” and to gather information on the illnesses, strategies to use the service system better and the all-important role of self-care.
Peoples’ experiences differ in the area of getting a diagnosis or reaching an understanding of the appropriate intervention and treatment. Sometimes people present with clear and persistent symptoms and get good state of the art care, and get accurate diagnosis. In some people, symptoms may change or present differently over time, making a diagnosis more elusive or challenging. Understanding the time course of a psychosis presentation is essential. If for example, the psychosis occurred in the context of a manic episode, then treatment for both the bipolar disorder and the underlying psychosis is essential. If the psychosis is longer lived, then a diagnosis may not be as easy as you may think. NAMI’s 2010 survey of individuals living with schizophrenia found, on average, a nine-year delay between the respondent’s first experience of a symptom and finally receiving the correct diagnosis of schizophrenia. We know that delays in getting help may adversely impact important areas of life including relationships, work, and may lead to self-medication with drugs, and even unnecessary criminal justice involvement. This emphasizes the need for an early and accurate diagnosis.
Psychiatric Conditions Associated with Psychosis
In many cases of psychosis, there is no reversible medical cause. In that case, getting a better understanding of how these symptoms are organized and associated with other experiences (such as depression or post-partum) is critical to better inform psychiatric diagnosis and treatment. It is important to recognize that many people do well living with illnesses that involve psychosis, and that getting support and help will improve your opportunities for recovery and managing your condition.
The psychiatric conditions associated with psychosis are listed below. They fall into several broad categories. It may be helpful to review the information provided on very early onset of psychosis, young adults and new onset psychosis, later in life new onset psychosis and short-term psychosis to help understand diagnostic challenges inherent in the array of psychosis conditions. The Diagnostic and Statistical Manual (DSM) IV has the diagnostic criteria listed for these conditions:
Schizophrenia Spectrum Conditions often Associated with Psychosis
Interfering with a person's ability to think clearly, manage emotions, make decisions and relate to others, schizophrenia-spectrum disorders impair a person's ability to function to their potential when it is not treated. Although no single symptom positively identifies schizophrenia, psychosis is usually present as part of a combination of symptoms and individual's symptoms can change over time.
The symptoms of schizophrenia are divided into three categories: positive, negative and cognitive symptoms. The positive symptoms are also known as “psychotic symptoms”, hallucinations and delusions, because the person has lost touch with reality in certain ways.
Mood Disorders Associated with Psychosis
Intense mood states can be associated with psychosis. Serious depression and mania are associated with psychosis and these need different treatments and interventions than the primary thought disorders listed above. The doctor will ask about patterns of mood, sleep and energy levels to delineate the possible relationship between mood states and psychosis.
Other Conditions that Can Present in Times of Stress
Other psychiatric conditions can present with psychosis at times, even though they are not conceptualized primarily as psychotic illnesses. Examples of this can be found in:
Where to Get Help
It can be overwhelming and confusing to find the right place to get help. The quality of information may vary with different websites or treatment centers. Wherever you start your journey of trying to understand this experience—whether with your significant other, your parent, clergy, friend, primary care doctor or a mental health professional—here are various issues about which to be aware:
- There are specialized centers in many cities that focus specifically on the comprehensive assessment and treatment of a first episode of psychosis. These creative and youth-focused programs are springing up due to increase interest and research momentum to help understand the problem better and earlier in order to improve outcomes. These programs are multidisciplinary and involve creating a welcoming environment for young adults that includes psychiatric assessment, work and school connections/support, family support, and medication education, as needed. These programs offer anther unique resource: other young adults who are dealing with the same issue, and often quite successfully. This list is a resrouce for the prodrome and very early phases assessment and the RAISE site at NIMH is also a place to access for first episode resources. You are not alone and a community of other young adults sharing this journey makes the experience less lonely. Pain share is pain halved.
- Your family needs support in order to help you. NAMI was founded by mothers who wanted to improve their kids’ lives and to find their own support, too. NAMI’s Family-to-Family program is a course led by family members of people who have psychiatric illnesses and provides information and support for family members so that they can help you better. The course is free and lasts 12 weeks. In a 2010 study, the Family-to-Family program has been shown to be effective in reducing anxiety, increasing coping skills and providing information for families. The NAMI Basics program for caregivers of youth is another resource for families encountering this condition.
- Your state mental health authority (often referred to as the Department f Mental Health (DMH) or Office of Mental Health (OMH) may have a call center or information on their website. However, these systems are quite variable in terms of whether they are geared to the first episode of psychosis and may instead focus on chronic mental illnesses. Review the NAMI Grades the Statesreport or a review of state mental health system’s information response as assessed by NAMI or to learn more about your state’s mental health care system.
- Contacting your local teaching or university hospital to locate their department of psychiatry may be beneficial as the topic of the first episode of psychosis has attracted research support. For example, in Boston, two Harvard affiliated academic centers have specialized programs for individuals experiencing new onset psychosis (Massachusetts General Hospital and Massachusetts Mental Health Center). Even if an academic center does not have such a comprehensive approach, they will be able to offer an initial evaluation and should know of the closest center.
- Additionally, the NIMH funded multi-site Recovery After an Initial Schizophrenia Episode (RAISE) study is seeking individuals for entry into its efforts to better understand how to alter the course of schizophrenia.
- Individuals learning to live with psychosis or in recovery with their mental health conditions often benefit from support and information offered through peers who have a shared experience. The NAMI Peer-to-Peer education program, NAMI Connection support groups, NAMI on Campus groups located on some college campuses and StrengthofUs.org, a social networking site for young and emerging adults with mental health conditions, are examples of some resources available for individuals that are helpful to many.
The treatment options for early onset psychosis are organized into two broad categories, psychosocial interventions and biological interventions.
Psychosocial interventions are treatment strategies that attend to the person, his or her strengths, thinking patterns, supports, experience and his or her environment. These have a growing research base and have been shown to be effective in the early stages of psychosis. The treatment options for early onset psychosis are organized into two broad categories: psychosocial interventions and medications options. Many people find they do best with both interventions that are tailored to their preferences, strengths and goals. One key is to get a comprehensive evaluation as noted above in order to have the best available information to inform the menu of options, and then to work collaboratively to try interventions and learn from experience.
Examples of psychosocial interventions are:
- Cognitive Behavioral Therapy. CBT is a series of strategies designed to help the person observe and even change how they think and act. For depression, where CBT is well studied, CBT might focus on recognizing and deemphasizing a person’s negative beliefs. For psychosis, the CBT strategy might look at how the hallucinations do and do not support the person’s well being. For example: Are the voices wrong about you? Can they be ignored? British practitioners Turkington and Kingdon, among others, have been promoting this model for years and it is being studied and applied with greater frequency in the U.S.
- Cognitive Enhancement Therapy. CET is a novel model that seeks to build brain capacity through the use of exercises and social support. CET uses computer and live groups to foster the maxim that “neurons that fire together, wire together” There is growing evidence that this strategy can enhance some of the cognitive vulnerabilities that commonly occur with psychosis.
- Family Psychoeducation and Support. Family involvement is essential to promoting the well being of the individual with a psychotic illness. There are two well-studied interventions. As noted earlier, NAMI’s Family-to-Family has been shown by research to improve the family’s experience of efficacy, coping and reducing anxiety. It is available in 48 states locations and multiple languages. It is a 12-week course for family members. Another well-studied model is the Multifamily Group model developed by William MacFarlane, M.D. These groups include multiple individuals who are living with a psychosis and their families who work together to bond, collaborate, problem solve, and learn from each other. This model has a strong research base to show reduction in hospitalization and improved social functioning.
- Young Adult Peer programming. In young adult programming, problem solving and support groups connect individuals with their peers and can be led by a staff or by a per who has moved ahead in their recovery. These groups can offer connections, support around developmentally normal tasks like returning to work and school, and looking at issues related to substance abuse.
- Supported Employment and Education. These are evidence-based practices that have stood the test of randomized controlled trials to prove their efficacy. Supported employment offers a real job and coaching/support to help the person problem solve in real time. This “place in a job, then train” employment model has grown stronger as the former conceptualization of practice jobs for people with psychotic processes is not research proven.
- Psychotherapy. Accessing supportive professionals (in addition to the peers above) who can help the person process their experience and learn to maximize coping strategies can make a powerful difference. These psychotherapy relationships can offer support, integrate family work, provide connections to CBT, CET and other psychosocial interventions. Learn more about the biology of psychotherapy as one treatment intervention.
The two primary biological interventions currently considered during early episode psychosis are medications and fish oil supplements.
These interventions, also known as neuroleptics (and the intriguing possibility of fish oil as an intervention in the very early stages of possible psychosis) work at the biology of the psychosis. Finding out what supports and interventions are right for the person is a shared decision between the person and the caregivers. People understandably need to feel safe in order to try these interventions so a respectful supportive and collaborative approach works best on every level. Most people find they do best with a combination of interventions that are tailored to their situation and strengths and they reevaluate their care plan as they move forward.
Antipsychotic medications are medicines that intervene in the brain to address hallucinations, delusions and associated behavior. As a class of medicines they were first discovered in the 1950s and medical investigation continues today to research the next generation of medications.
For specifics about any one medication, NAMI.org has comprehensive medication fact sheets written by an independent group of pharmacists, the College of Psychiatric and Neurologic Pharmacists.
All antipsychotic medications have FDA indications, benefits and risks. It is important to understand the properties of any medication you are taking so it is important to ask the doctor why they are recommending one compound over another in order to help inform your decision.
Broadly, antipsychotic medications fall into two classes:
- First-generation Antipsychotics:
These medicines have similar biological mechanism in common—they block dopamine receptors in the brain. This can generate reduction in psychosis symptoms, but the symptoms often recur when the medicine is stopped. These medicines all carry risks of movement problems when given over time (a condition called tardive dyskinesia) and require regular monitoring for the development of this risk as well as other risks. All first-generation antipsychotic medications have the same impact on symptoms but do have different intensity of side effects to inform treatment selection. As a general rule, these medicines do not cause the same level of weight gain, risk of adult onset diabetes as many of the second-generation medications (SGAs).
- High-potency first generation antipsychotics (like haloperidol) have side effects that can include muscle tightness, pacing, and Parkinson like symptoms.
- Lower potency first generation antipsychotic medicines (like chlorpromazine) also have the same basic mechanism of action but also have different side effect profile. Sedation and lowered blood pressure are examples of the common side effects with low potency first generation antipsychotics.
- Medium-potency first generation medications (like perphenazine) demonstrate moderate amounts of both side effects.
- Second-generation Antipsychotics (SGAs):
This is class of medicines developed in the 1990s and since then. They do not have the same biologic mechanism or side effect profile activity or risk as the first generation medicines noted above. They are active in the dopamine system and also in other neuroreceptors, such as the norepinephrine system. There is a range of medicines in this class (list from schizophrenia brochure) that each offer differential impact on neuroreceptors. Selecting a compound requires thoughtfulness and collaboration with the person seeking symptom relief. The challenge is to identify the medicine most likely to be effective, offer the best side effect profile (e.g. sedation can be a helpful side effect for people who cannot sleep well). In order to do this the doctor will ask about prior response history and tolerability when selecting a medicine.
SGAs (also called SGAs or atypicals as they do not impact the movement centers in the brain as much, thereby having fewer movement side effects) variably increase weight gain and the risk of diabetes, both of which increase cardiac risk. Newer treatments are in development in order to offer a third generation of antipsychotic medication.
Medication selection is still more of an art than a science. There is research momentum that aims to provide more personalized medicine to identify who will respond to which medication, but there is no test for this predictive response at the time of this writing.
Clozapine is the only second-generation medication that is approved by the FDA for treatment resistant psychosis, has been shown to reduce suicide in individuals with schizophrenia, and may reduce substance abuse craving in some individuals. This treatment has many side effects (drooling weight gain diabetes and more) but should be considered if the responses to two trials of antipsychotics at adequate dose and duration have not showed a robust response. The literature on the use of clozapine in the first episode of psychosis has not yet reached a consensus.
G. Paul Amminger, M.D., and his colleagues investigated the use of marine fish oil as a possible preventative agent in teens and young adults at risk for psychosis in Vienna, Austria. The study randomized 81 young people aged 13-25 who had shown some early signs of psychosis into two groups, one that received fish oil and one that received a placebo (coconut oil), each for three months. The groups also received some psychosocial interventions. After one year, 4.9 percent of the fish oil treated group progressed to psychosis while 27.5 percent progressed to psychosis in the placebo group.
Read more about this study in the Research section of this site or in the NAMI Advocate article on this topic.
Using Antipsychotic Medications in the Prodromal Phase
The detection of a prodromal or risk phase (when very early possible symptoms such as isolation, withdrawal or bizarre thought patterns or not fully present in the context of other associated symptoms) has generated understandable controversy. The advantages of identifying illnesses early is compelling, yet the concern is that young adults who will not develop a full psychosis will be over identified, over diagnosed and therefore over medicated. This concern is why NAMI’s position paper to the APA on this proposed diagnostic category for DSM 5 emphasizes psychosocial interventions in the prodromal phase, as these have no side effects and may be helpful. As mentioned in this site, cognitive behavioral therapy, family psychoeducation, vocational and educational support are examples of the psychosocial interventions that may be helpful for a young adult who has some emerging symptoms of a psychotic process. Also mentioned and of note is the small but compelling randomized controlled study in Europe that showed that fish oil was helpful in preventing conversion to a full psychosis in a group of young adults who had some early symptoms of psychosis.