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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. doi: 10.17226/25652.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. doi: 10.17226/25652.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. doi: 10.17226/25652.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. doi: 10.17226/25652.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. doi: 10.17226/25652.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. doi: 10.17226/25652.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. doi: 10.17226/25652.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. doi: 10.17226/25652.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. doi: 10.17226/25652.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. doi: 10.17226/25652.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

TEMPOROMANDIBULAR DISORDERS: PRIORITIES FOR RESEARCH AND CARE Enriqueta C. Bond, Sean Mackey, Rebecca English, Cathy T. Liverman, and Olivia Yost, Editors Committee on Temporomandibular Disorders (TMDs): From Research Discoveries to Clinical Treatment Board on Health Sciences Policy Board on Health Care Services Health and Medicine Division A Consensus Study Report of PREPUBLICATION COPY: UNCORRECTED PROOFS

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 This activity was supported by a contract between the National Academy of Sciences and the U.S. Department of Health and Human Services: National Institutes of Health (NIH) (Office of the NIH Director and the National Institute of Dental and Craniofacial Research). 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 Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/25652 Additional copies of this publication are 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 2020 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2020. Temporomandibular Disorders: Priorities for Research and Care. Washington, DC: The National Academies Press. https://doi.org/10.17226/25652. PREPUBLICATION COPY: UNCORRECTED PROOFS

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY: UNCORRECTED PROOFS

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY: UNCORRECTED PROOFS

COMMITTEE ON TEMPOROMANDIBULAR DISORDERS (TMDs): FROM RESEARCH DISCOVERIES TO CLINICAL TREATMENT ENRIQUETA C. BOND (Chair), President, Emeritus Burroughs Wellcome Fund, QE Philanthropic Advisors SEAN MACKEY (Vice Chair), Chief, Division of Pain Medicine, Stanford University Medical Center PENNEY COWAN, Founder and Chief Executive Officer, American Chronic Pain Association DAVID DEITZ, Principal, David Deitz & Associates, LLC FRANCESCA C. DWAMENA, Professor of Medicine, Michigan State University ROGER B. FILLINGIM, Distinguished Professor, University of Florida MARGARET M. HEITKEMPER, Professor and Chair, Biobehavioral Nursing & Health Systems, University of Washington FRANCIS KEEFE, Professor of Psychiatry and Behavioral Sciences, Duke University Medical Center KATE LORIG, Professor Emerita, Stanford University School of Medicine RICHARD OHRBACH, Professor, Department of Oral Diagnostic Sciences, University at Buffalo School of Dental Medicine AMANDA C. PUSTILNIK, Professor of Law, University of Maryland Carey School of Law SRINIVASA N. RAJA, Professor of Anesthesiology and Critical Care, Medicine and Neurology, Johns Hopkins University School of Medicine CORY M. RESNICK, Assistant Professor of Oral and Maxillofacial Surgery, Harvard School of Dental Medicine ANTONY ROSEN, Vice Dean for Research, Mary Betty Stevens Professor of Medicine, Johns Hopkins University School of Medicine KATHLEEN A. SLUKA, Kate Daum Research Professor, Department of Physical Therapy and Rehabilitation Science, University of Iowa Carver College of Medicine BARBARA G. VICKREY, Professor and System Chair, Neurology Department, Icahn School of Medicine at Mount Sinai ROBERT WEYANT, Professor, University of Pittsburgh School of Dental Medicine HAI YAO, Ernest R. Norville Endowed Chair and Professor of Bioengineering and Craniofacial Biology, Clemson University and Medical University of South Carolina Study Staff CATHY T. LIVERMAN, Study Director REBECCA ENGLISH, Study Director OLIVIA YOST, Associate Program Officer SIOBHAN ADDIE, Program Officer KENDALL LOGAN, Senior Program Assistant ANDREW M. POPE, Director, Board on Health Sciences Policy SHARYL NASS, Director, Board on Health Care Services Consultants JUSTIN DURHAM, School of Dental Sciences, Newcastle University ERIN HAMMERS FORSTAG, Common Good Consulting GARY SLADE, University of North Carolina School of Dentistry PREPUBLICATION COPY: UNCORRECTED PROOFS v

Reviewers This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We thank the following individuals for their review of this report: Allan Basbaum, University of California, San Francisco Daniel B. Carr, Tufts University School of Medicine Terrie Cowley, The TMJ Association Daniel Derksen, University of Arizona Luda Diatchenko, McGill University Scott Fishman, University of California, Davis Charles S. Greene, University of Illinois at Chicago Jennifer A. Haythornthwaite, Johns Hopkins University School of Medicine Kevin D. Huff, Center for Advanced General Dentistry, Dover, OH Jon Kusiak, National Institute of Dental and Craniofacial Research (retired) Cato T. Laurencin, University of Connecticut William Maixner, Duke University School of Medicine Jeffrey P. Okeson, University of Kentucky Christian Stohler, Columbia University Medical Center Dennis C. Turk, University of Washington Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by Dan G. Blazer, Duke University School of Medicine, and Michelle M. Mello, Stanford Law School and Stanford University School of Medicine. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies. PREPUBLICATION COPY: UNCORRECTED PROOFS vii

CONTENTS PREFACE xiii SUMMARY S-1 1 INTRODUCTION 1-1 Complexity of TMDs, 1-4 Challenges in Care: Patient Experiences, 1-5 Identifying the Appropriate Model for TMD Care and Research, 1-6 Key Themes, 1-8 Organization of this Report, 1-10 References, 1-11 2 DEFINITIONS AND SCOPE: WHAT ARE TMDS? 2-1 Terminology: What Term Should Be Used for This Set of Disorders?, 2-2 Diagnostic Criteria to Categorize Types of TMDs, 2-5 Types of TMDs, 2-12 Understanding the Etiologies of TMDs, 2-16 Factors in the Disease Course of a TMD, 2-20 What Can Be Learned from Other Pain Conditions?, 2-25 What Can Be Learned from Other Orthopedic Conditions?, 2-27 Conclusions and Research Priorities, 2-28 References, 2-30 3 INDIVIDUAL AND SOCIETAL BURDEN OF TMDS 3-1 Prevalence of TMDs, 3-2 Incidence of TMDs, 3-7 Burden and Costs of TMD, 3-12 Comorbidities, 3-17 Risk Factors for TMDs, 3-22 Conclusions and Research Priorities, 3-24 References, 3-26 PREPUBLICATION COPY: UNCORRECTED PROOFS ix

4 STATE OF THE SCIENCES ON TMDS 4-1 Recent Biomechanical and Bioengineering Research on the TMJ, 4-2 Neurobiology of Orofacial Pain and TMDs, 4-11 Neuroimmune Interactions and TMDs, 4-21 Neuroendocrine Interactions, Stress Response, and TMDs, 4-23 Biomarkers and Molecular Genetics of TMDs, 4-26 Neuroimaging of the CNS: Exploration of TMD Phenotypes, 4-32 Psychosocial Factors Underlying TMDs, 4-34 Application of Data Science Methodologies and Novel Technologies to TMD Research, 4-35 TMD Research Funding, 4-35 Moving the Research Enterprise Forward, 4-37 A National Collaborative Research Consortium and Framework for Action, 4-40 Conclusions, 4-46 References, 4-47 5 CARING FOR INDIVIDUALS WITH A TMD 5-1 First, Do No Harm, 5-1 Prevention and Early Detection, 5-3 Assessment and Diagnosis of TMDs, 5-4 TMD Treatments, 5-6 Improving and Disseminating Evidence, 5-25 Conclusions, 5-35 References, 5-36 6 IMPROVING TMD HEALTH CARE: PRACTICE, EDUCATION, ACCESS, AND COVERAGE 6-1 TMD Health Care Pathways, 6-1 Improving Interprofessional Education and Collaboration, 6-4 Strengthening Education and Training, 6-6 Improving Access to Specialty Care, 6-17 Improving Payment and Coverage, 6-22 Conclusions and Research Priorities, 6-28 References, 6-30 7 IMPROVING PATIENT, FAMILY, AND PUBLIC EDUCATION AND 7-1 AWARENESS ABOUT TMDS Overcoming Stigma, 7-3 Increasing Patient and Family Education and Improving Communication with Health Care Professionals, 7-5 Raising Public Awareness and Knowledge about TMDs, 7-11 Conclusion and Research Priorities, 7-15 References, 7-16 PREPUBLICATION COPY: UNCORRECTED PROOFS x

8 NEXT STEPS AND RECOMMENDATIONS 8-1 Build and Sustain Collaborative and Multidisciplinary Research, 8-2 Improve Access to and Quality of TMD Health Care, 8-7 Improve Health Care Professional Education about TMDs, 8-11 Raise Awareness, Improve Education, and Reduce Stigma, 8-13 Opportunities for Action, 8-15 References, 8-16 APPENDIXES A Workshop and Open Session Agendas A-1 B Committee Biographical Sketches B-1 C Commissioned Paper by Gary Slade and Justin Durham C-1 D Masticatory System: Anatomy and Function D-1 PREPUBLICATION COPY: UNCORRECTED PROOFS xi

Preface Everyday activities, including eating and talking, are often difficult for people with temporomandibular disorders (TMDs), and many of them suffer with severe chronic pain due to this condition. Common social activities that most people take for granted, such as smiling, laughing, and kissing, can become unbearable. This dysfunction and pain, and its associated suffering, take a terrible toll on affected individuals, their families, and their friends. Individuals with TMDs often feel stigmatized and invalidated in their experiences by their family, friends, and, particularly, a health care community that frequently relies on “seeing” a condition in order to treat it. Misjudgments and a failure to understand the nature and depths of TMDs can have severe consequences—more pain and more suffering—for individuals, their families and our society. People with TMDs, desperate for solutions, often seek out multiple clinicians, turning to dubious treatments in search of a cure, which can potentially lead to iatrogenic injury and costly, yet ineffective, treatments. This study—focused on improving TMD care and identifying research directions— occurs at a time of both challenges and opportunities for progress in this field. TMDs are especially challenging because they often require care across medicine, dentistry, and other fields of health, and yet, given the current divide between the medical and dental fields in the United States, such coordinated care rarely happens. The medical–dental divide is further exacerbated by a payment system that inadequately reimburses for the complex care needed by people with TMDs. Clinicians can be affected by bias, limitations in their knowledge and training, and differences in the systems in which different types of clinicians work. Efforts are needed to break down these silos and devote research efforts aimed at understanding this complex set of disorders and improving patient care. Furthermore, research is needed to learn more about the structure and function of the temporomandibular joint and the management of its associated disorders. Many TMDs do not exist in isolation, but rather are frequently associated with other painful conditions such as headache, neck and back pain, irritable bowel syndrome, fibromyalgia, sleep disorders, and chronic fatigue syndrome. Despite these challenges, a number of opportunities exist, such as in increasing patient involvement in order to help move health care forward and in new research tools and technologies that can expand the current understanding of the etiology and progression of TMDs. In responding to the study’s broad task—which stretches from research to education to care—this report aims to provide an overview of the current state of knowledge on TMDs and to focus its recommendations on near- and long-term actions to move the field forward in such a way that it improves care for individuals with a TMD as rapidly as possible. The committee’s work greatly benefited from the compelling insights that were so graciously shared by many individuals with TMDs and their family members. These individuals described their often arduous and costly experiences in living with these often complex PREPUBLICATION COPY: UNCORRECTED PROOFS xiii

xiv PREFACE conditions, including the challenges of trying to navigate through fragmented and divided dental and medical health care systems and frequently dealing with health professionals who were largely unfamiliar with TMDs. We are grateful to these people for sharing their stories, hopes, disappointment, and anger in their written comments and testimonials. We kept those shared messages at the forefront of our deliberations and focus while creating this report. The committee also greatly appreciates the information provided by workshop speakers as well as by many others who shared information to the committee. The feedback from the report reviewers was invaluable. We especially thank the study sponsors for their work on TMDs and for their support of this study: the Office of the Director at the National Institutes of Health and the National Institute of Dental and Craniofacial Research. It was our great privilege to work with such dedicated committee members, each of whom thoroughly engaged in the study, generously shared their expertise, and contributed significant time and effort to this endeavor. This was a complex task, and the committee members stepped up to meet the challenge. Their reasoned and thoughtful discussions made this report possible. We were all fortunate to work with a diligent and outstanding team of National Academies of Sciences, Engineering, and Medicine staff, and we deeply thank Cathy Liverman, Rebecca English, Olivia Yost, Kendall Logan, and Siobhan Addie, led by Andrew Pope and Sharyl Nass, board directors in the Health and Medicine Division. We also thank Erin Hammers Forstag for her writing and editing work and Daniel Bearss of the National Academies library staff for his assistance conducting detailed literature searches for the committee and staff. The committee worked to develop this report in an objective manner based on the available evidence and knowledge. During this process we were acutely aware of the limitations in existing evidence and the data to support that evidence. These limitations and the opportunities to transform our understanding of TMDs helped guide our recommendations. TMDs results from a complex interplay between biological, biomechanical, psychological, and social factors that transcend simple explanations. Efforts are needed to enhance our understanding of TMDs from cells to society, taking advantage of team-science approaches to these complex problems. Further progress will be made through the development and use of new tools, metrics, and biomarkers to diagnose TMDs and forecast their trajectory, predict treatment efficacy, and monitor advances in improving health and well-being. The education and training of health care professionals about TMDs and incentivizing them to work individually and in teams will be critical for making improvements in providing care of individuals with recent onset TMDs, chronic TMDs, or high-impact TMDs. Enhanced models of care will incentivize health care professionals to provide the most optimal care for people with TMDs—and do so in a way that is culturally sensitive and patient-centric. It is the committee’s hope that this report will provide a springboard to move this field forward. Enriqueta C. Bond, Chair Sean Mackey, Vice Chair Committee on Temporomandibular Disorders: From Research Discoveries to Clinical Treatment PREPUBLICATION COPY: UNCORRECTED PROOFS

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Temporomandibular disorders (TMDs), are a set of more than 30 health disorders associated with both the temporomandibular joints and the muscles and tissues of the jaw. TMDs have a range of causes and often co-occur with a number of overlapping medical conditions, including headaches, fibromyalgia, back pain and irritable bowel syndrome. TMDs can be transient or long-lasting and may be associated with problems that range from an occasional click of the jaw to severe chronic pain involving the entire orofacial region. Everyday activities, including eating and talking, are often difficult for people with TMDs, and many of them suffer with severe chronic pain due to this condition. Common social activities that most people take for granted, such as smiling, laughing, and kissing, can become unbearable. This dysfunction and pain, and its associated suffering, take a terrible toll on affected individuals, their families, and their friends. Individuals with TMDs often feel stigmatized and invalidated in their experiences by their family, friends, and, often, the health care community. Misjudgments and a failure to understand the nature and depths of TMDs can have severe consequences - more pain and more suffering - for individuals, their families and our society.

Temporomandibular Disorders: Priorities for Research and Care calls on a number of stakeholders - across medicine, dentistry, and other fields - to improve the health and well-being of individuals with a TMD. This report addresses the current state of knowledge regarding TMD research, education and training, safety and efficacy of clinical treatments of TMDs, and burden and costs associated with TMDs. The recommendations of Temporomandibular Disorders focus on the actions that many organizations and agencies should take to improve TMD research and care and improve the overall health and well-being of individuals with a TMD.

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