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According to a 2011 National Alliance on Mental Illness (NAMI) survey, only 4.5% of individuals experiencing psychosis indicated that their health care provider recognized early signs of illness. Data from the HeadsUp Program Evaluation report (July 2020) indicates that 33.2% of PA FEP program participants referred to a PA FEP center by an inpatient psychiatric unit experienced signs of early psychosis that may have been overlooked or misattributed to other conditions.
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This can potentially lead to a delay in engagement in FEP care, and perhaps result in a more stressful or off-putting pathway into initial psychiatric treatment via involuntary hospitalization or the legal system. Research has indicated treatment interventions are more effective when offered early in illness course, and recent mental health reform has focused on early intervention for serious mental illness, including for FEP. This underscores the importance of identifying early psychosis symptoms and connecting an individual to specialized care.
Though the delay of diagnosis and/or treatment is often related to a complex array of individual, familial, cultural, and societal barriers, much of our early psychosis work aims to reduce the time between symptom onset and connection to FEP care.
Though the definition of psychosis varies to some degree among diagnostic sources, our PA FEP programs utilize the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) diagnostic criteria to define psychosis and therefore eligibility for care.
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In this context, the term psychosis refers to experiences of positive symptoms (i.e., hallucinations, delusions), negative symptoms (e.g., diminished emotional expression), disorganized speech, and/or disorganized (or catatonic) behavior. [American Psychiatric Association. (2013). Schizophrenia Spectrum and Other Psychotic Disorders. In Diagnostic and statistical manual of mental disorders (5th ed.) https://dsm.psychiatryonline.org/doi/full/10.1176/appi.books.9780890425596.dsm02]. Our programs include individuals with recent onset of such symptoms (see program chart).
Experiences of psychosis differ among individuals, and a course of illness can be difficult to predict, particularly in early phases. However, people often experience mild, less bothersome experiences of psychosis (i.e., subthreshold symptoms) prior to the onset of an acute first episode of psychosis and may return to this level of symptomatology (i.e., residual/attenuated symptoms) after an acute episode.
Some individuals have recurrent episodes of psychosis throughout their lifetime. Others may experience only one acute episode with subsequent recovery of prior functioning and no further episodes. Psychosis may be present in a number of different mental health conditions (e.g., bipolar and related disorders, depressive disorders, substance-related and addictive disorders). Individuals may experience co-occurring mental health conditions as well (e.g., anxiety disorders, trauma and stressor-related disorders, personality disorders).
Useful Screening Tools (see “Resources” section of this webpage below to link to suggested screening tools):
The prodromal phase is characterized by gradual, non-specific changes in a person’s thoughts, perceptions, behaviors and/or functioning. These symptoms can be noticeable to the person experiencing them or the people around them, but tend to be less bothersome and interfering than acute psychosis symptoms.
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The term prodromal is technically only appropriate when retrospectively referencing symptoms that definitively occurred prior to threshold psychosis symptoms. People experiencing prodromal, or subthreshold psychosis, symptoms who have never experienced threshold psychosis symptoms are referred to as being at Clinical High Risk for development of Psychosis (CHR-P). These experiences most commonly occur in the adolescent/young adult years.
Types of changes in feelings, thoughts, perceptions and behaviors can include:
• unusual thoughts about themselves or the world
• increased suspiciousness or wariness about others’ intentions or behaviors
• unusual perceptual experiences (e.g., occasionally hearing someone whisper or call their name or seeing shadows out of the corner of their eye, increased perceptual illusions/misperceptions of real sensory stimuli)
• sometimes talking in a way that is difficult for others to follow or that doesn’t seem to make sense
• appearing confused and/or finding it harder to follow conversations
• feeling more overwhelmed and/or stressed than before
• missing school/work or not being able to keep up at either
• more difficulty concentrating or focusing than before
• feeling disconnected from friends, family, or the world around them
• desire or need to be alone
• sleep disturbances (more or less sleep than before)
• mood disturbances (such as low/elevated mood and/or irritability)
Prior research indicates that individuals experiencing recent onset or worsening of these types of symptoms within the prior year have an increased risk, ranging from 10-30%, of transitioning to threshold psychosis within the next two years. While it is impossible to know on an individual basis if such symptoms will progress to an acute psychotic episode, they warrant attention and possible intervention.
The use of brief screening tools within school-based settings, medical care practices, and community mental health organizations can potentially facilitate early identification and rapid referral. Our HeadsUp team is available to provide customized training on screening approaches and tools. To find out more about these tools email: headsuppaorg@gmail.com.
Specialized care is available through PA CHR-P programs (PERC, HOPE TEAM, Dear Mind). At this stage, treatment typically emphasizes careful observation and psychotherapeutic intervention, including psychoeducation, along with peer and family support. Medication management may be considered.
During an acute psychotic episode, symptoms such as hallucinations, delusions and odd or disorganized speech or behaviors emerge more obviously and can be distressing, impairing, or even disabling. Appropriate treatment should be initiated as soon as possible, and can include referral to an FEP center or other outpatient mental health facility, or inpatient care.
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Hallucinations: Sensory experiences in the absence of a sensory stimulus, which can occur in any sensory modality (auditory, visual, gustatory, olfactory, somatic/tactile). That is, the person, hears, sees, tastes, smells, or feels in their body or on their skin, things that aren’t there. Common symptoms include: hearing single or multiple voices (simple or complex, abusive, neutral and even soothing), visual hallucinations (seeing people or objects that others do not) body sensations or feelings that are new and strange (electrical charges or small bugs crawling over a person’s limbs), tasting/smelling things that others do not (often unpleasant, but not exclusively so).
Delusions: Often referred to as fixed, false beliefs. The person believes, with full conviction, in something that most other people don’t believe. Common delusions include: persecutory delusions (false belief that someone or something is trying to trick, torment, spy or follow them), referential delusions (television, music or signs in the world refer specifically to them), grandiose delusions (believing they have special powers or abilities, or are a famous or very important person/being, such as a religious figure, musician, actor).
Cognitive disorganization: Speech and writing become disorganized and/or tangential. Individuals may formulate connections between words that seem illogical and/or they may have difficulty following conversations.
Negative Symptoms: A diminishing or absence of usually present emotions or behavior. Common negative symptoms include flattened affect (decreased expression of emotion in face, vocal intonations, and bodily gestures), avolition (diminished volition or will to initiate or sustain goal directed activities), anhedonia (decreased interest or pleasure in previously enjoyed activities); decreased emotional experience (feeling emotionally deadened or flat),
It is important to keep in mind that any given individual with psychosis may experience all, or only a few, of the above symptoms, and may experience them in a different way than we have described. The intensity and impact of particular symptoms can also vary enormously from individual to individual.
Research indicates that individuals tend to have better recovery outcomes (e.g., life satisfaction, engagement in school/work, reduction in symptomatology) when intervention occurs closer to the onset of psychotic symptoms (and therefore earlier on in their course of illness).
Coordinated Specialty Care (CSC) is a recovery-oriented treatment program for people with early psychosis. CSC promotes shared decision-making and uses a team of specialists who work with the client to create a personalized treatment plan. Check out and share this HeadsUp video, “What is Coordinated Specialty Care?”
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Each PA First Episode Psychosis (FEP) program is a little different but all offer a CSC treatment approach, which will often include:
Psychotherapy Talk therapy to help build personal skills of resiliency, management, and coping.
Supported Employment & Education Assistance Help continuing to engage in or adjust to school and work goals while receiving care.
Medication Management If necessary, finding the best medication at the lowest possible dose.
Peer Support Guidance from those currently on their own recovery path.
Case Management Skills and support to organize the practical issues presented during treatment. This includes communication with other team members.
Family Support and Education Tools designed to keep family members engaged and informed. The client and the team work together to make treatment decisions, involving family members as much as possible.
Our aim is to link an individual experiencing early psychosis symptoms with a CSC team as soon as possible after psychotic symptoms begin.
Once the determination is made that a client you have encountered may need to seek care for early psychosis, there are many resources available and we are here to help you connect that individual to the appropriate path of treatment.
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If you and your client are in the state of Pennsylvania, use our convenient Find a Center map which can help you find the nearest First Episode Psychosis (FEP) center. If you are outside the catchment area of our current FEP sites, or feel that travel would be burdensome, HeadsUp can help connect you to Tele-Health resources.
Not in Pennsylvania? Connect to the helpful SAMHSA Early Serious Mental Illness Treatment Locator OR PEPPNET for a National Directory of Early Psychosis Centers.
First episode psychosis centers are not always conveniently located to the people who need them. This may be particularly true for individuals or clinicians in rural communities. If you are working with a client who may be experiencing early psychosis, we are here to help connect you to information regarding care, research, and telehealth resources.
We offers professional consultative services via our HeadsUp Early Psychosis Mentor, a platform for Pennsylvania clinicians and treatment providers to pose questions to experts in the fields of early psychosis research and treatment. We are happy to provide you information based on your specific clinical needs, with the goal of providing the most up to date and evidenced based research guidance available.
Catherine (Cat) Conroy, M.Ed, Manager of HeadsUp
Neurodevelopment and Psychosis Section, Department of Psychiatry
Perelman School of Medicine, University of Pennsylvania
10th floor, Gates Pavilion, HUP
3400 Spruce Street, Rm. 10054, Philadelphia, PA 19104
headsuppaorg@gmail.com
We are available during standard business hours (Monday-Friday, 9am-5pm) to answer any questions you may have about our organization or to direct you to programs in Pennsylvania that can offer clinical help.
