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Early Interventions for Psychosis First Episodes and High-Risk Populations Alexandra Andrada, Sharyl J. Nass, and Joe Alper, Rapporteurs Forum on Mental Health and Substance Use Disorders Board on Health Care Services Board on Health Sciences Policy Health and Medicine Division Proceedings of a Workshop
NATIONAL ACADEMIES PRESS 500 Fifth Street, NW, Washington, DC 20001 This activity was supported by Purchase Order No. 75FCMC22P0038 with the Centers for Medicare & Medicaid Services and Contract No. HHSN263201800029I, Order No. HHSN26300025 with the National Institutes of Health (National Institute on Alcohol Abuse and Alcoholism, National Institute on Drug Abuse, National Institute of Mental Health), and by the American College of Clinical Pharmacy, American Psychiatric Nurses Association, American Psychiatric Association, American Psychological Association, Centers for Disease Control and Prevention, Council on Social Work Education, Janssen Research & Development, LLC, National Academy of Medicine, Office of the Assistant Secretary for Planning and Evaluation, Think Bigger Do Good Policy Series (a partnership of the Scattergood Foundation, Pegâs Foundation, Patrick P. Lee Foundation, and Peter & Elizabeth Tower Foundation), U.S. Department of Veterans Affairs, and Well Being Trust. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Numberâ13: 978-0-309-69760-6 International Standard Book Numberâ10: 0-309-69760-3 Digital Object Identifier: https://doi.org/10.17226/26832 This publication is available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334- 3313; http://www.nap.edu. Copyright 2023 by the National Academy of Sciences. National Academies of Sciences, Engineering, and Medicine and National Academies Press and the graphical logos for each are all trademarks of the National Academy of Sciences. All rights reserved. Printed in the United States of America. Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2023. Early interventions for psychosis: First episodes and high- risk populations: Proceedings of a Workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26832.
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PLANNING COMMITTEE FOR A WORKSHOP ON EARLY INTERVENTIONS FOR PSYCHOSIS: FIRST EPISODES AND HIGH-RISK POPULATIONS1 DOST ÃNGÃR (Cochair), Chief, Psychotic Disorders Division, McLean Hospital; William P. and Henry B. Test Professor of Psychiatry, Harvard Medical School RUTH SHIM (Cochair), Associate Dean of Diverse and Inclusive Education, Director of Cultural Psychiatry, and the Luke & Grace Kim Professor in Cultural Psychiatry, University of CaliforniaâDavis DEANNA BARCH, Chair and Professor of Psychological and Brain Sciences, Washington University in St. Louis JOHN MICHAEL KANE, Professor and Chairman, The Donald and Barbara Zucker School of Medicine at Hoffstra/Northwell; Northwell Health, Zucker Hillside Hospital KATHY PHAM, Director of Policy and Professional Affairs, American College of Clinical Pharmacy KRISTINA D. WEST, Social Science Analyst, Office of Behavioral Health, Disability, and Aging Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services Project Staff ALEXANDRA ANDRADA, Director, Forum on Mental Health and Substance Use Disorders and Program Officer LAURENE GRAIG, Senior Program Officer (Acting Forum Director MayâOctober 2022) ADRIENNE FORMENTOS, Research Associate (Until May 2022) ANESIA WILKS, Senior Program Assistant SHARYL J. NASS, Director, Board on Health Care Services Consultant JOE ALPER, Consulting Writer 1 The National Academies of Sciences, Engineering, and Medicineâs planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rap- porteurs and the institution. v
FORUM ON MENTAL HEALTH AND SUBSTANCE USE DISORDERS1 MARGARITA ALEGRÃA (Cochair), Harvard Medical School ROSALIE L. PACULA (Cochair), University of Southern California ERIN BAGALMAN, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services KIRSTEN BERONIO, Centers for Medicare & Medicaid Services CARLOS BLANCO, National Institute on Drug Abuse, National Institutes of Health CARLA M. CANUSO, Janssen Research and Development, LLC CHRIS M. CROWE, U.S. Department of Veterans Affairs W. PERRY DICKINSON, University of Colorado (Representing the American Board of Family Medicine) ANTHONY T. ESTREET, Morgan State University (Representing the Council on Social Work Education) RICHARD G. FRANK, Brookings Institute HOWARD H. GOLDMAN, University of Maryland School of Medicine ROBERT K. HEINSSEN, National Institute of Mental Health, National Institutes of Health KRISTIN KROEGER, American Psychiatric Association JAN L. LOSBY, Centers for Disease Control and Prevention R. KATHRYN MCHUGH, Harvard Medical School and Mclean Hospital (Representing the American Psychological Association) BENJAMIN MILLER, Well Being Trust ANNIE PETERS, National Association of Addiction Treatment Providers KATHY PHAM, American College of Clinical Pharmacy JOE PYLE, Scattergood Foundation (Representing Think Bigger Do Good Policy Series) DEIDRA ROACH, National Institute on Alcohol Abuse and Alcoholism, National Institutes of Health MARY ROARY, Substance Abuse and Mental Health Services Administration GLORINDA SEGAY, Indian Health Service RUTH SHIM, University of CaliforniaâDavis MATTHEW TIERNEY, University of CaliforniaâSan Francisco, School of Nursing (Representing the American Psychiatric Nurses Association) 1 The National Academies of Sciences, Engineering, and Medicineâs forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution. vi
Reviewers This Proceedings of a Workshop was reviewed in draft form by indi- viduals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical com- ments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We thank the following individuals for their review of this proceedings: DOST ÃNGÃR, Mclean Hospital, Harvard Medical School OLADUNNI OLUWOYE, Washington State University RICHARD FRANK, Brookings Institution Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by ALAN F. SCHATZBERG, Stanford Uni- versity School of Medicine. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies. vii
Acknowledgments The National Academies of Sciences, Engineering, and Medicineâs Forum on Mental Health and Substance Use Disorders wishes to express its sincere gratitude to the planning committee co-chairs Dost Ãngür and Ruth Shim for their valuable contributions to the development and organi- zation of this workshop. The forum wishes to thank all the members of the planning committee, who collaborated to ensure a workshop complete with informative presentations and rich discussions. Finally, the forum wants to thank the speakers and moderators, who generously shared their expertise and their time with workshop participants. Support from the many spon- sors of the Forum on Mental Health and Substance Use Disorders is critical to its work. The sponsors include the Centers for Medicare & Medicaid Ser- vices, the National Institutes of Health (National Institute on Alcohol Abuse and Alcoholism, National Institute on Drug Abuse, National Institute of Mental Health) and the American College of Clinical Pharmacy, American Psychiatric Nurses Association, American Psychiatric Association, American Psychological Association, Centers for Disease Control and Prevention, Council on Social Work Education, Janssen Research & Development, LLC, National Academy of Medicine, Office of the Assistant Secretary for Plan- ning and Evaluation, Think Bigger Do Good Policy Series (a partnership of the Scattergood Foundation, Pegâs Foundation, Patrick P. Lee Foundation, and Peter & Elizabeth Tower Foundation), U.S. Department of Veterans Affairs, and Well Being Trust. ix
Contents BOXES AND FIGURES xiii ACRONYMS AND ABBREVIATIONS xv PROCEEDINGS OF A WORKSHOP 1 OVERVIEW OF THE WORKSHOP 1 IDENTIFYING POPULATIONS AT RISK FOR PSYCHOSIS AND INTERVENTIONS TO REDUCE RISK 4 EARLY INTERVENTIONS FOR FIRST EPISODES OF PSYCHOSIS 7 The Epidemiology and Social Patterning of Psychosis 8 Online Screening for Mental Health 11 Discussion 15 CURRENT MODELS OF CARE 16 Team-Based Model for Collaborative Care 16 New Journeys Program of Washington State and Pathways to Care 19 Strengths of CSC in California and Challenges to Growth 21 OnTrackNY 25 Discussion 28 EVIDENCE ON SHORT- AND LONG-TERM OUTCOMES 29 Five-Year Outcome Data from the RAISE Early Treatment Program 29 Racial Analysis of Social Determinants of Psychosis: A Better Frame for Unmet Needs? 33 xi
xii CONTENTS State Mental Health Agency Support for CSC Programs and Use of the Federal Mental Health Block Grant 10 Percent Set-Aside 38 Discussion 44 EXPLORING POLICY OPPORTUNITIES 45 SAMHSAâS ROLE IN FIRST-EPISODE PSYCHOSIS 45 Community Programs for Outreach and Intervention with Youth and Young Adults Through the Clinical High Risk for Psychosis Grant Program 46 Expanding, Improving, and Sustaining Early-Psychosis Services in the United States 47 Advocacy for Improved Policies 50 Policy Futures 52 Discussion 55 CLOSING REMARKS 59 REFERENCES 62 APPENDIX A: STATEMENT OF TASK 70 APPENDIX B: WORKSHOP AGENDA 71 APPENDIX C: SPEAKER, MODERATOR, AND PLANNING COMMITTEE BIOGRAPHICAL SKETCHES 77
Boxes and Figures BOXES â 1 Key Observations Made by Individual Workshop Participants about Care for People with Early Psychosis, 3 â 2 Suggestions for Future Research from Individual Workshop Participants, 45 â3 Suggestions Made by Individual Workshop Participants to Improve Care for People with Early Psychosis, 60 FIGURES â 1 Psychosis risk map by county based on MHA online screening results, 14 â 2 Downstream and upstream factors that can produce health disparities and inequities in access to care, 20 â 3 The coordinated specialty care approach of OnTrackNY, 27 â 4 Components of the NAVIGATE CSC intervention used in the RAISE Trial, 31 â 5 Hypothesized model of systemic racism and psychosis in the United States, 35 â 6 Percent of CSC early-psychosis program clients experiencing adverse life events, before and after participation in the program, 40 â 7 Self-perception of changes in well-being among CSC early-psychosis program participants, 40 xiii
xiv BOXES AND FIGURES â 8 Number of coordinated specialty care programs for early psychosis by state, 2022, 41 â 9 Coordinated specialty care models for early psychosis that states were using in 2021, 42 10 Coordinated specialty care component use among early-psychosis programs, 42 11 Use of standardized measures by CSC programs for early psychosis, 43
Acronyms and Abbreviations AMP-SCZ Accelerating Medicines Partnership ProgramâSchizophrenia ASPE Assistant Secretary for Planning and Evaluation CBT cognitive behavioral therapy CDC Centers for Disease Control and Prevention CMS Centers for Medicaid & Medicare Services CSC coordinated specialty care EPI-CAL California Collaborative Network to Promote Data-Driven Care and Improve Outcomes in Early Psychosis EPINET Early Psychosis Intervention Network FY fiscal year IPS individual placement and support IUSM Indiana University School of Medicine LGBTQIA+ lesbian, gay, bisexual, transgender, queer and/or questioning, intersex, and asexual and/or ally MHA Mental Health America MHBG mental health block grant MOST Moderated Online Social Therapy xv
xvi ACRONYMS AND ABBREVIATIONS NASMHPD National Association of State Mental Health Program Directors NDCC National Data Coordinating Center NIH National Institutes of Health NIMH National Institute of Mental Health NRI NASMHPD Research Institute PANSS Positive and Negative Syndrome Scale PARC Prevention and Recovery Center PHQ-9 Patient Health Questionnaire 9 PQ-B Brief prodromal questionnaire PTSD post-traumatic stress disorder QLS Heinrichs-Carpenter Quality of Life RAISE Recovery After Initial Schizophrenia Episode SAMHSA Substance Abuse and Mental Health Services Administration SSA Social Security Administration UCD University of CaliforniaâDavis