First Episode Psychosis and the NAVIGATE Treatment Model in Oklahoma Susan Gingerich, MSW NAVIGATE Training Coordinator

Agenda Some basic facts about psychosis Recognizing signs of emerging psychosis Treatment for early psychosis NAVIGATE Coordinated Specialty Care Teams Oklahoma’s NAVIGATE Teams

First, did you know… Approximately 100,000 youth and young adults experience an episode of psychosis each year—that’s 274 young people each day. 1 The average duration of untreated psychosis in the US is more than 2 years. Systems of care wait for patients with the illness to come to them. 2 3X as many young people who have experienced psychosis will drop out of school compared to their peers. 3 1 calculated from McGrath, J. et al. Epidemiologic Reviews. 2008; 30: Marshall, M. et al. Arch Gen Psychiatry. 2005; 62: Goulding, S. et al. Schizophr Res. 2010; 116(2-3): 228.

Did you know… The most common violent act by someone with psychosis is suicide. At least 10% of people who experience schizophrenia will die by suicide compared with 1% for the general population. 4 The World Health Organization ranks psychosis as the 3 rd most disabling condition in the world (Retrieved 11/19/2014) 5 (Retrieved 11/19/2014)

And, did you know… Treatment works! 77% of those experiencing first episode psychosis will have a remission of symptoms with medication. 6 Tohen M. et al. Biol Psychiatry. 2000; 48: 467–476.

A Message of Hope: Welcome to a New Era in the Treatment of Schizophrenia Oklahoma is one of the pioneers in the U.S. in implementing a Coordinated System of Care (CSC) for individuals who are first experiencing the symptoms of psychosis The NAVIGATE program is a CSC designed specifically for these individuals and their families By providing early, effective, and coordinated treatment, you will be helping to build the best possible foundation for these individuals to experience recovery, and to live full, rewarding lives.

What is Psychosis? Psychosis refers to a condition of the mind described as involving a "loss of contact with reality.” People experiencing psychosis may exhibit some personality changes and thought disorder (hallucinations, delusions, odd speech). Depending on its severity, this may be accompanied by unusual or bizarre behavior, as well as difficulty with social interaction and impairment in carrying out daily life activities. The experience of psychosis can be very frightening. Like “dreaming while you are awake” Occurs in 3/100 people at some point in their lifetime

Psychosis Can Be Caused by Many Things Drugs Alcohol Stress Environmental deprivation Sleep deprivation Damage to the brain Mental illness

Treatment of psychosis depends on cause Drugs and alcohol related psychosis benefits from substance abuse treatment Stress benefits from decreasing stress in the environment and teaching stress management Environmental deprivation benefits from gradually re-introducing person to a rich stimulating environment Sleep deprivation benefits from returning person to a safe environment where sleep is promoted and sleep strategies are taught Brain damage benefits from specialized neurological-based treatment With time, treatment and the elimination of the causal factor (if possible), many episodes of psychosis end spontaneously

Schizophrenia is the most common mental illness with psychosis 1 out of 100 people have a risk of developing schizophrenia at some point in their life Most likely to appear in late teens or early twenties Needs a coordinated and comprehensive approach to treatment

Symptoms of Schizophrenia Delusions Hallucinations Disorganized speech Disorganized or catatonic behavior “Negative symptoms” such as lack of interest, energy, initiative or sense of pleasure Cognitive difficulties—problems with focus, attention, and memory Medications tend to be most helpful for the items in blue and less effective for the items in green

To Receive a Diagnosis of Schizophrenia Usually 2 of the Criterion A symptoms for at least a month – Delusions – Hallucinations – Disorganized speech – Disorganized or catatonic behavior – “Negative symptoms” such as lack of interest, energy, initiative or sense of pleasure Have a decline in functioning

Most Common Signs of Emerging Psychosis Performance in school, work, or family life is rapidly dropping Spending a lot of time alone, in their room Doing or saying things that seem strange, even bizarre Depression Irritability Having problems sleeping

Additional Signs of Emerging Psychosis Social withdrawal Hostility or suspiciousness Decline in personal hygiene Flat, expressionless gaze Inability to cry or express joy Inappropriate laughter or crying Oversleeping or insomnia Odd or irrational statements Forgetful; unable to concentrate Extreme reaction to criticism Strange use of words or way of speaking

Where Individuals with Earl Psychosis Are Often First Identified Inpatient facilities Emergency rooms Crisis services Religious leaders and their congregations Pediatricians, primary care, and family doctors Middle Schools High Schools Children’s Services Foster Care

Where Individuals with First Episodes of Psychosis Are Often First Identified Colleges Technical schools Police departments Jail systems Substance abuse programs for young people HOWEVER, REMEMBER: FAMILY is often first to notice signs of psychosis

Typical Interventions for Psychosis Medication Possible hospitalization—usually short-term Psychotherapy Case management—referrals for income support (SSI, SDI, TANF), health insurance, housing, SNAP Vocational counselling Family counselling

NAVIGATE Program for First Episode Psychosis Treatment

Brief History of NAVIGATE In 2009, NIMH launched the RAISE Initiative, and awarded contracts to two teams to develop early treatment programs for persons with first episode psychosis --The Connection Program (now OnTrackUSA) at the Research Foundation for Mental Hygiene at Columbia University in NYC --The Early Treatment Program (now NAVIGATE) at the Feinstein Institute for Medical Research in Manhasset, NY ( Your state is focusing on the components of NAVIGATE.

Research for NAVIGATE Program We conducted a randomized controlled trial to compare NAVIGATE with the typical kind of care available in local community mental health agencies to individuals recently diagnosed with a psychosis A special emphasis of the study was not just making sure participants in NAVIGATE went to the hospital less—we wanted to see if we could also help them get back to work or school and have a better quality of life. All the NAVIGATE clinicians were carefully trained and monitored The team carefully collected a wide range of outcome data to compare the two treatments

Research Design Participants received treatment at 34 community facilities. The facilities were randomly assigned – 17 NAVIGATE sites – 17 Community Care sites (control sites) People who joined the study were treated and assessed for at least 2 years The study is still ongoing and will compare the results of treatment of the two groups at five years

Study Participants (during research) Sample size: 400 – 10 – 20 at each site (34 sites in all) Age One of these diagnoses is in the differential – schizophreniform disorder – schizophrenia – schizoaffective disorder – psychotic disorder NOS – brief psychotic disorder Less than six months of lifetime treatment with antipsychotic medications

NAVIGATE and Control Sites During Research Phase

RAISE-ETP Study Design with Cluster/Site Randomization RAISE – ETP n = 404 NAVIGATE 17 sites n = 223 COMMUNITY CARE 17 sites n = 181

RAISE : Outcomes Compared to clients getting customary care treatment, NAVIGATE clients: Were more likely to stay in treatment Had greater reductions in symptoms Had greater improvements in quality of life Had great rates of participation in work or school

RAISE Outcomes, Cont’d The shorter the Duration of Untreated Psychosis (“DUP”), the better the outcome Therefore, the SOONER psychosis is identified and treated, the BETTER

Here’s where NAVIGATE is happening now… MichiganMississippi OklahomaVirginia FloridaMontana California (Humboldt County)Missouri IowaWashington Pennsylvania (Erie)New York (Buffalo) ISRAEL

Specifics of the NAVIGATE Treatment Program

NAVIGATE is Designed to Help Psychosis Related to a Schizophrenia Diagnosis Schizophrenia—a type of psychosis Schizoaffective Disorder—psychosis blended with mood symptoms Schizophreniform (less than 6 months of symptoms)

Foundation of the NAVIGATE Treatment Program Based on the stress-vulnerability model Emphasizes recovery and resiliency Uses principles of illness management Uses principles of psychiatric rehabilitation Informed by special issues for first episode psychosis clients

Medications

Using Principles of Illness Management Relapses & symptoms can be reduced by: – Antipsychotic medications – Minimization of drug & alcohol abuse – Reduction of stress – Increasing social support & meaningful activities – Increasing coping skills

Using Principles of Psychiatric Rehabilitation Targets recovery outcomes directly Common methods: teaching skills & providing environmental supports Social rehabilitation methods Supported employment/education methods Teaching resiliency skills Family/social support

Taking into Consideration the Special Issues for First Episode Psychosis Clients Their developmental stage The trauma related to experiencing psychosis

Developmental Stage Younger age, many living with parents Peer relationships & opinions very important Involved in school and/or early job experiences In process of separating from families Developing romantic relationships Extra sensitive to being told what to do High rate of substance use Often feel invincible (e.g., “What I’m experiencing can’t be anything serious”)

Trauma of Experiencing Psychosis Experience of psychosis traumatic for client & relatives Posttraumatic stress disorder (PTSD) reactions are a common response to psychotic symptoms & treatment experiences PTSD reactions to first episode psychosis are related to increased distress & decreased functioning Special focus in NAVIGATE on helping clients process the trauma of their psychotic episode

Specific NAVIGATE Interventions Individualized Medication Management Family Program Supported Employment and Education (SEE) Individual Resiliency Training (IRT) Sometimes separate case management and/or peer specialist services

Individualized Medication Management Overall strategy: Start low, go slow, and pay close attention to side effects Use a questionnaire to monitor client adherence, symptoms, and side effects Regularly assess physical factors such as weight, lipid levels, glucose levels and BMI

Family Program Provides family (including client) with education about psychosis, coping strategies, skills for communicating and solving problems Goals of the program: – Shore up family relationships for the long haul – Change the trajectory of the illness by supporting resumption of role functioning and social pursuits – Reduce stress and burden in family members

Family Program 8 family education sessions – Facts about Psychosis – Facts about Medication – Facts about Coping with Stress – Facts about Developing Resiliency – Relapse Prevention Planning – Developing a Collaboration with Mental Health Professionals – Effective Communication – A Relative’s Guide to Supporting Recovery from Psychosis

Supported Employment and Education (SEE) The goal of SEE is to help people develop and achieve personally meaningful goals related to their careers, their education and their employment SEE services are individualized for each person based on their preferences, goals and values SEE services are provided based on the person’s choice to pursue employment, or education, or both Different from vocational counseling that people may be familiar with (e.g., no long waiting period) Vast majority of services takes place OUTSIDE THE OFFICE

Individual Resiliency Training (IRT) Goal is to promote recovery by identifying client’s strengths and enhancing illness self management skills – Assists clients in learning about psychosis, processing their experience of psychosis, developing relapse plan, increasing resiliency, learning specific strategies and skills to achieve own personal goals; IRT clinician may also provide case management – Weekly or twice a month sessions until standard and selected individualized modules are completed

IRT Standard Modules Orientation Assessment/initial goal setting Education about psychosis Relapse prevention planning Processing the psychotic episode Developing resiliency – Standard module Building a bridge to your goals

IRT Individualized Modules Dealing with negative feelings Coping with symptoms Substance use Having fun and developing relationships Making choices about smoking Living healthy Developing additional resiliency – Individualized module

Case Management Assists clients in accessing resources such as housing, medical care, transportation, parenting classes, insurance Case management needs can be high for early treatment clients as they begin treatment Can be provided by team members or by a separate case manager

Peer Specialist Services Can assist clients by sharing their experiences (as indicated) to decrease client’s sense of aloneness, providing examples that increase clients sense of hope and optimism, helping clients take active steps towards achieving their personal goals (e.g., help set up area in apartment for doing homework)

How the Team Works Together Clients (and usually families) meet all team members at the beginning of treatment Team strives to have each client receive the benefits of each intervention Team members continually share information and strategies Team members “piggyback” appointments In dealing with challenges, team member with strongest rapport is utilized Whole team meets together weekly

NAVIGATE Team in Oklahoma Hope Community Services NAVIGATE Team Oklahoma City Leslie Hebert, Director of Children and Youth Services and Leader of NAVIGATE Team hopecsi.org Training planned for Tulsa area in the coming year.

Website for NAVIGATE:

Summary We are greatly looking forward to working alongside you as your community helps clients and their loved ones find their own personal roads to recovery By implementing NAVIGATE, your community is contributing significantly to the new era in schizophrenia treatment: helping people with first episode psychosis get back on their developmental paths & reduce the long-term disability of schizophrenia Thank you for your commitment and dedication to your community.