After demonstrating quietly through several years of research that clinical care at STEP—Specialized Treatment in Early Psychosis—is effective, Vinod Srihari, MD and his team are stepping out in a more public way with Mindmap, a public information campaign aimed at improving early detection of psychotic illness.
Psychosis is not well understood by the public at large and often stigmatizing for people who have it. Treatment works best when patients seek help early. But how can they seek help when they and/or their families may not understand what is happening, or where to turn for care?
Dr. Srihari and his team at Connecticut Mental Health Center (CMHC), a community mental health center jointly run by the Yale Department of Psychiatry and Connecticut Department of Mental Health & Addiction Services (DMHAS), seek to address this knowledge gap with Mindmap.
What is psychosis?
Psychosis is a mental health problem that causes people to perceive or interpret things differently from those around them. It may involve hallucinations or delusions and is commonly caused by schizophrenia, medical illness, or the use of drugs or alcohol. Psychosis affects approximately 3% of the world's population; most had their first experience with it before they turned 35. In the words of the Mindmap campaign, it is "a young person’s disease."
During the first few years after psychosis onset, the content and quality of a patient's treatment matter profoundly and may be a major factor in determining the later course of the illness.
STEP professionals know how to provide effective care for patients in this critical period (read about their most recent research findings here). "FES," or "First Episode Services," is the term now being used to describe this standard of care, outlined on the STEP website.
But through Mindmap STEP seeks to do more than provide FES. "We want to find patients earlier and bring them into effective care more quickly," Dr. Srihari explains. Research has shown that the delay between onset of frank psychotic symptoms and entry into care can be measured in years. Srihari says this delay is unacceptable.
"When there is a delay," he explains, "we allow young people to be exposed to avoidable distress and disability. We may also delay their return to the important tasks we all face in our youth, of building the lives we choose to live."
"Few teams around the world have been able to implement early detection," he continues. "That is the goal of Mindmap."
How Mindmap works
Mindmap addresses the challenge of early detection through a broad-based education effort that combines professional outreach with a social media and advertising campaign. It is based on a highly successful campaign in Norway known as TIPS. Thanks to TIPS, Norwegians have been talking openly about schizophrenia for years. TIPS promotes awareness in many ways, including by offering regular public events and educational forums, and has been shown to shorten the duration of untreated psychosis (DUP) significantly. Thomas McGlashan, MD, professor emeritus of and senior research scientist in the Yale Department of Psychiatry, was one of the early principal investigators of TIPS and now continues this work through Mindmap.
During the three-year Mindmap campaign, STEP will work with a wide range of partners including high schools and colleges, religious communities, police departments, primary care centers, the judicial system, social welfare system, policy makers, and more. Outreach goals are to disseminate reliable information to those who interact frequently with young people, to share Mindmap resources, and to let partners know how to contact STEP for consultation and/or clinical evaluation.
Mindmap will combine this professional outreach with a social marketing approach to empower caregivers and patients to seek care. The Mindmap website (www.mindmapct.org) offers interactive features, information about psychosis, and a telephone number to call for private consultations and referrals.
Jessica Pollard, PhD, STEP's clinical director, says Mindmap seeks to address common myths and misunderstandings about psychotic illness. "Just being more open about it will help," she explains. "Many people do not know how common psychosis is and that it primarily affects young people."
Pollard underscores the importance of early detection, the primary goal of Mindmap. "When I've worked with people immediately after onset," she reflects, "I have seen firsthand how much more we can do for patients and just what a positive impact early intervention has."
To qualify for STEP care, patients must be within three years of their first episode of psychosis, often called the "first break." They must be 16-35 years of age and live in one of eight towns: New Haven, North Haven, East Haven, West Haven, Hamden, Bethany, Woodbridge, and Orange. Eligible patients will receive care for two years at no cost to them, regardless of insurance. Individuals who are considered "high risk" for psychosis but have not yet experienced their first break will be referred to the PRIME Clinic at CMHC.
Srihari says the eight-town region is based on two considerations: reasonable length of travel for patients, and what it takes to cover a geographical area using a targeted media campaign.
"The new Mindmap campaign is an exciting tool that can be used to reach people in the appropriate towns that will be served by this project," says DMHAS Commissioner Pat Rehmer. "Intervening early in psychosis can be an important part of positive outcomes. This campaign will provide information to young adults and their families about options available to support behavioral health."
Researchers want to know whether Mindmap makes a difference in reaching patients early in the course of illness. Supported by a grant from the National Institutes of Health (NIH), Dr. Srihari and fellow Yale investigators will study the effectiveness of Mindmap in Greater New Haven while co-investigators at the Massachusetts Mental Health Center’s PREP Clinic, Larry Seidman, PhD and Matchari Keshavan, MD, run the study's control site. The two groups meet regularly to ensure that assessments at both sites are equal; the design of the study is published here.
Past research at STEP
From 2006-2013, STEP operated as a pilot clinic at CMHC with support from the Connecticut Department of Mental Health & Addiction Services. The idea was to test empirically based, international standards of care in a public mental health setting in the United States. While clinical teams in other countries offer intensive outreach and community-based treatment—sending clinicians to clients' homes, for example—STEP at CMHC would attempt to provide the same quality of care more affordably, from their offices at the mental health center and with higher patient-provider ratios. The results of this study, funded by the Donaghue Foundation and the NIH, demonstrated that STEP care works (in press, Psychiatric Services). When compared to people receiving "usual care" in the community, STEP patients spent less time in the hospital and were significantly more likely to return to school or work. (Click here and here to learn more about the roots of STEP at CMHC.)
The new frontier
Mindmap extends the work of STEP by focusing on early detection and improved access to care. This is the next frontier in the treatment of psychotic illness. Success will mean dramatically improving the lives of many young people and their families.
"The experience of a young person with psychosis, when the world begins to change around them and they no longer feel safe, is challenging at the best of times and terrifying at the worst," Dr. Srihari reflects. "There is a lot we can do to make this journey easier that it is now."
"We need a system of care that reflects what we would all want to happen if that young person was our own child."