MHID Foundation's Conference Report by Mental Health Issues of Diabetes Foundation

The Mental Health Issues of Diabetes Supported Primarily by

Co-Sponsored by

JDRF,

Juvenile Diabetes Research Foundation and

the Ducat Family Fund

R E P O R T

Advisory Board Honorary Chairman: Arthur Rubenstein, MBBCh Co-Chairs: Lou Philipson, MD, PhD • Barbara Anderson, PhD • Lee Ducat Faculty Members: Fran E. Cogen, MD • Daniel Davidow, MD • Alan Delamater, MD Eileen Gelick • Tyler Genthe • Ann E. Goebel-Fabbri, PhD • Kenneth Gorfinkle, PhD Margaret Grey, DrPH, RN, FAA • Michael Harris, PhD • Alan Jacobson, MD • Karen Johnson Suzanne Bennett Johnson, PhD • Georgeanna Klingensmith, MD • Lori Laffel, MD, MPH Ake Lernmark, MD, PhD • Howard Nathan • Debra K. Osteen • Marian Rewers, MD, PhD Camillo Ricordi, MD • Tony Rogowski • John Rolland, MD, MPH • Martin Schappell Mark Schutta, MD • Mark Sperling, MBBS • Paula Trief, PhD • Garry Welch, PhD Jill Weissberg-Benchell, PhD, CDE • Howard Wolpert, MD

Our deepest appreciation to Universal Health Services, Inc., UHS, the Juvenile Diabetes Research Foundation, JDRF and the Ducat Family Fund, DFF, for providing the financial support to design and implement this groundbreaking conference, “The Mental Health Issues of Diabetes” and this Report of Conclusions and Recommendations.

For more information visit “The Mental Health Issues of Diabetes Foundation” at www.mhidglobal.org or contact Lee Ducat, MHID Foundation President or Conference Co-Chairs: Lou Phillipson, MD, PhD, Barbara Anderson, PhD and Arthur Rubenstein, MBBCh

The Mental Health Issues of Diabetes Conference TABLE OF CONTENTS Co-Chairmen of the Conference/Comments Lou Philipson, MD, PhD, Barbara Anderson, PhD, Arthur Rubenstein, MBBCh, Lee Ducat Introduction “Integrating Mental Health Care and Diabetes Care: A New Paradigm of Care for Persons with Diabetes Across the Life Span” Faculty Agenda “National Conference of the Mental Health Issues of Diabetes” Monday, October 7, 2013 and Tuesday, October 8, 2013 Keynote “Mental Health Issues of Diabetes” Griffin P. Rodgers, MD, MACP, Director NIDDK Panel 1 Type 1 Diabetes Advocates Conference Workgroup Reports Workgroup I “The Integration of Medical and Mental Health Treatment for Type 1 Diabetes Patients and their Families” – Chair, Jill Weissberg-Benchell, PhD, CDE Workgroup 2 “The Prioritization of Major Psychosocial Issues in a New Treatment Design” Co-Chairs, Marian Rewers, MD, PhD and Kenneth S. Gorfinkle, PhD Workgroup 3 “Model for Mental Health Screening and Intervention in Type 1 Patients and Families for Depression, Suicide, Drug Addiction and Eating Disorders” Chair, Georgeanna Klingensmith, MD Workgroup 4 “Potential Future Research Projects and Resources Needed to Test New Paradigm of Treatment”, Co-Chairs, Ake Lernmark, MD, PhD, Paula Trief, PhD and Suzanne Bennett Johnson, PhD Final Reports of the Conference on “Mental Health Issues of Diabetes” A Review of “The Mental Health Issues of Diabetes” Conference Recommendations from the Conference, “Mental Health Issues of Diabetes” Conference Workgroup Recommendations Conference Summary Comments and Recommendations The Co-Chairmen, led and supported the coordination and design of “The Mental Health Issues of Diabetes” Conference. Funding support was provided primarily from UHS, Inc., (Universal Health Services, Inc.), JDRF, (Juvenile Diabetes Research Foundation), and the Ducat Family Fund. Lee Ducat coordinated, designed, and implemented “The Mental Health Issues of Diabetes” Conference, which is the basis of this report for Type 1 Diabetes patients and their families and professionals in the field.

COMMENTS FROM THE CO-CHAIRS PRESENTED AT THE CONFERENCE

Lou Philipson, MD, PhD Professor, Medicine and Pediatrics Director Kovler Diabetes Center, University of Chicago It is my huge pleasure to be a part of this amazing gathering of people from all over – not only all over the country, but around the world, to discuss a topic close to all of our hearts: “The Mental Health Issues of Diabetes”. This conference is suitably titled, a national one, but really is an international conference. I’m on the faculty of the University of Chicago and got to know Lee ducat through our work at NDRI and her involvement in Chicago. When Lee heard about some of the things we were doing; attempting to integrate psycho-social aspects into our care of people with diabetes at the University of Chicago, she was reminded that this was something that she had pioneered for the last few decades. This is not her first conference on psycho-social issues in diabetes, it’s not her second conference in psycho-social issues, it’s her third conference. Always making this an important issue of Type 1 diabetes. The faculty of our conference is virtually a who’s who of the most exciting, creative people in the field with great supporters too that have made our meeting happen. I wanted to thank everyone for coming. I wanted to thank in particular, Debra Osteen and University Health Services, Inc., and they will be thanked multiple times for their support of this meeting. I wanted to thank Dr. Arthur Rubenstein for being our spiritual and moral compass in terms of making this conference happen. Barbara Anderson, PhD Professor of Pediatrics, Associate Head Psychology Section, Baylor College of Medicine It’s so nice to be at this conference with so many dear friends and colleagues from over the years. Lee kept saying to me, why is everybody saying yes to presentations, being on the agenda, and at the conference? Why did everyone I invited say yes? I told Lee because I think in the heart of every person here, they know that it is finally time to create the double helix that we all know has been. The psycho-social issues of diabetes aren’t something separate, they are inextricably intertwined with the medical management of this disease. I think everyone at this conference feels and knows that it is finally time to stop talking and start doing. So hopefully we will hear some ideas about that. Arthur Rubenstein, MBBCh Professor of Medicine Division of Endocrinology, Diabetes and Metabolism Former Dean and EVP for the Health System Raymond and Ruth Perelman School of Medicine, University of Pennsylvania Good morning everyone. It’s a pleasure to have you here. I can tell you briefly that when Lee started the JDF, I told her it wouldn’t work. She ignored me and look what happened. And then she started NDRI, I said it’s a hopeless concept. She said, well, I’ll get it to work. She did. Then, when she came to me and said she wanted to really study and have a conference about mental issues related to diabetes, I said, what a great idea! I knew that after all the wrong things I had said in the past I should agree even though inside me I may have had some reservations. 2

When I took care of diabetic children, Type 1 patients and their families, it was obvious that giving insulin and exercise and nutrition and so forth is just one part of the challenge. The mental health issues are right up there as some of the biggest challenges. And because we haven’t dealt with them at the depth and level that we should, this conference is very, very timely and really important in so many ways. And, of course, the way Lee has organized it, and her thinking about it and planning is impeccable. My guess is that out of these two days something really, really important will emerge that will make a big difference for diabetic patients and their families. So one can keep on talking about Lee for a very long time, and we will have time during the course of the next two days to pay tribute to her, but this is a groundbreaking conference from many points of view! What I wanted to do for this conference was to say to you that we should all contribute openly. There are people here from all levels and walks of life discussing diabetes issues and problems. We tried to plan the conference so that it would be most open for discussion and with a variety of presentations, and that’s a different kind of conference than just long lectures. We tried to make the lectures or the presentations short, mainly through the composition of the panels. We really would like everybody to contribute their knowledge and wisdom and experience in a way that will make our knowledge base so much better, and so I would encourage you to do that. With that I want to welcome you all. We should have a really exciting time. I think the conference will be wonderful. I would encourage all of you to participate. Lee Ducat Founder and First President JDRF, HBDI, NDRI, MHID While working with JDRF, The Juvenile Diabetes Research Foundation, NDRI, The National Disease Research Interchange, and especially with the families with diabetes patients, I have always been aware of the impact of the mental health aspects of diabetes. Even though this area was extremely important, it has remained virtually unnoticed, but coming into focus in the world community. After founding JDRF, when my son was diagnosed with Type 1 diabetes, my priority was to look for a cure. The cure remains elusive, however, in my contact with families over the years, the mental health issues remained to be addressed. They are incredibly important to the families and to the care of children with Type 1 diabetes and to the siblings in the family. I gathered information on the current research and research funding. After looking into the mental health field in regard to those treating Type 1 diabetes, I realized that increased funding was needed from the federal government, NIH, and NIDDK for research in the mental health areas of Type 1 diabetes. As we look at the mental health issues it becomes clear that Type 1 diabetes can affect the mental health of the patient and concurrently the mental health of the patient affects the daily commitment to the regime of “self-care” over a lifetime. “Depression” is prevalent among patients with diabetes while most other mental health issues remain virtually undetected, undiagnosed, and undertreated. I started this initiative, gathered the top experts in the field to present at our conference which was designed and implemented in October 2013. “The Mental Health Issues of Diabetes” Conference brought together top experts in the field, including those in the mental health area of diabetes. In fact, a considerable amount of data had been gathered with funding from NIDDK which underscores the impact of mental health issues of diabetes on Type 1 treatment. It is my fervent hope that we have cast a bright new light on this unmet need with the help of so many already in the field. My deepest gratitude to all who made our initial conference successful and continue to be committed to this renewed effort to structure a new treatment for Type 1 patients throughout the world, especially to my co-chairs Barbara Anderson, Lou Philipson and Arthur Rubenstein. 3

Introduction

INTEGRATING MENTAL/BEHAVIORAL HEALTH CARE AND DIABETES MEDICAL CARE A NEW PARADIGM OF CARE FOR PERSONS WITH TYPE 1 DIABETES ACROSS THE LIFESPAN

Lee Ducat, Arthur Rubenstein, MBBCh, Louis H. Philipson, MD, PhD, Barbara J. Anderson, PhD Why call for a new paradigm of health care for persons with type 1 diabetes (T1D)?

The incidence of T1D is increasing globally and doubling every 20 years. The diagnosis of T1D increases the risk by 2-3 fold for comorbid mental health conditions of depression, anxiety disorders, and eating disorders. The treatment of T1D is primarily self-management as opposed to clinician-managed. Diabetes selfmanagement demands a complex set of behavioral tasks that must be balanced by the person/family living with T1D. 24 hours a day, with no “vacation” days. Self-management tasks involve checking blood glucose multiple times a day in order to adjust the multiple doses of insulin needed throughout the day and night, and all balanced with foods eaten and physical activity which also impact blood glucose levels. Now in 2014 national and international guidelines and “best practices” call for psychosocial screening and mental health services for persons with T1D, yet very few clinics or hospitals in the U.S. provide integrated mental and behavioral health services in health care for persons with T1D. Why is now the time for a new paradigm of care in which mental/behavioral health is an integral part of diabetes medical care? Behavioral health is a term now commonly used to expand upon the

older term mental health. In 1979 the behavioral health field was defined as “promoting a philosophy of health that stresses individual responsibility in the... maintenance of health and the prevention of illness and dysfunction by a variety of self-initiated individual or shared activities”. Traditional mental health issues are central to persons living with T1D given their increased risk for depression, anxiety disorders, and eating disorders. However, the concept of behavioral health is especially apt when discussing living with T1D because of the high level of vigilance and behavioral demands required to avoid seriously out of range blood glucose levels. The National Institute of Diabetes, Digestive Diseases and Kidney (NIDDK) has increasingly recognized the importance of behavioral issues in T1D through recent funding announcements dedicated to behavioral research initiatives in T1D as well as funding for training of behavioral scientists in T1D research. However in the U.S., there has yet to be a focused call by consumer advocacy groups for the design, implementation, and evaluation of new paradigms of integrated care. At the Mental Health Issues in Diabetes Conference (October 7-8, 2013,Philadelphia, PA), in his keynote address at the conference, Dr. Griffin Rodgers, MD, MACP, Director of the National Institute of Diabetes, Digestive Diseases, and Kidney, of the National Institutes of Health (NIH), stated: “A complex balancing of behavioral tasks is required to achieve good glucose control and avoid hypoglycemia... The burden of living with T1D is enormous”. This conference included stakeholders from the National Institutes of Health, the community of persons living with Type 1 diabetes (T1D) and their families, diabetes consumer advocacy groups, the insurance industry, as well as psychologists, psychiatrists, endocrinologists, nurse practitioners, and educators who are nationally, and internationally recognized leaders in T1D research and care. The Mental Health Issues of Diabetes Conference provided an opportunity for the conference organizers to translate the personal stories and the science presented at the conference into the Viewpoint, to provide a rationale for the integration of behavioral health care and medical health care for persons with T1D, identify barriers to this integration, and suggest strategies for surmounting these barriers to forge a new paradigm of care. 6

A Rationale for Integration of mental/behavioral health into diabetes medical care. In 2001 the

largest and most comprehensive international study in diabetes, the DAWN Study, which included both patients and health care providers documented that: “Diabetes self-management is often less than optimal; self-management problems are due in large part of psychosocial problems; diabetes related distress is common and persistent, but rarely assessed or addressed; health care professionals recognize the depression is also common, but few patients are referred for psychological care; initiatives to address diabetes related distress and other psychosocial issues must have a high priority to improve outcomes.” This final point, “to improve outcomes” emphasizes the urgency for integrating behavioral/mental health into the care of persons with T1D. Mental/behavioral health challenges compromise adherence to treatment and increase the risk for the serious short and long-term physical complications of poorly controlled T1D, which can result in blindness, amputations, cardiovascular events, stroke, kidney failure, cognitive decline, compromised quality of life, s well as premature death. The financial cost to society and to health care systems is catastrophic, and the human suffering that results in profound. In fact, there is now sufficient evidence that the Standards of Medical Care in Diabetes – 2014 published recently by the American Diabetes Association recommend: “It is reasonable to include assessment of the patients’ psychological and social situation as an ongoing part of the medical management of diabetes. Routinely screen for psychosocial problems such as depression and diabetes related distress, anxiety, eating disorders, and cognitive impairment.” These 2014 Standards of Medical Care also recommend: “People with diabetes should receive medical care from a team that may include physicians, nurse practitioners, physician’s assistants, nurses, dietitians, pharmacists and mental health professionals with expertise in diabetes...this collaborative and integrated team approach”. Barriers to this “integrated team approach” and to integrating mental health care and screening into diabetes medical care are rooted in many layers of the current health care systems: lack of

reimbursement for mental/behavioral health services, especially those that are preventive; a serious shortage of mental health providers with expertise in diabetes; a similar shortage of medical providers with training common mental/behavioral health challenges, such as diabetes distress, depression, and family burden; and the absence of incentives for diabetes clinics to provide integrated and multi-disciplinary team care. Strategies for addressing these barriers could include: restructuring training programs for mental health practitioners and medical providers to include multi-disciplinary training between medical and mental health clinicians so that working as a team is introduced early and reinforced in medical schools and professional training programs; increased collaboration between key diabetes organizations (ADA< JDRF) to advocate for reimbursement for mental health services in diabetes and to incentivize diabetes clinics that follow guidelines for integrated behavioral and medical care by giving them “program recognition” status; to build partnerships between academic mental health programs and established community based mental health programs and facilities to expand mental/behavioral health services for individuals and families living with diabetes who would benefit from diabetes trained mental health providers in the community. In summary, a new paradigm of care for persons with T1D and their families will require bold

and sustained leadership and partnerships from consumer organizations, from professional training and education programs; from insurance companies, from professional societies, from hospital organizations, and from funders to build, staff, and evaluate different care models to demonstrate that integrated care is cost effective as it promotes optimal health and quality of life for individuals and families living with Type 1 diabetes. We can visualize the new paradigm. Can we work together to Actualize it? 7

Faculty

FACULTY “MENTAL HEALTH ISSUES OF DIABETES” CONFERENCE

Co-Chairmen Lou Philipson, MD, PhD, Professor, Medicine & Pediatrics, Director, Kovler Diabetes Center, University of Chicago, Barbara Anderson, PhD, Professor of Pediatrics, Associate Head, Psychology Section, Baylor University Medical Center, Lee Ducat, Founder, First President, JDRF, Founder, First President, HBDI, Founder, First President, NDRI, Arthur Rubenstein, MBBCh, Professor of Medicine, Division of Endocrinology, Diabetes and Metabolism, Former Dean and EVP for the Health System, Raymond and Ruth Perelman School of Medicine, University of Pennsylvania Panel 1 Advocates Tyler Brooke Genthe, Eileen Gelick, Board of Chancellors, JDRF, Howard Nathan, President, Gift of Life, Debra K. Osteen, Senior Vice President, Universal Health Services, Inc., President, Behavioral Health Division, Tony Rogowski, President, Crown South Realty Fran Cogen, MD,CDE Professor of Pediatrics, George Washington School of Medicine and Health Sciences, Director, Childhood and Adolescent Diabetes, Children’s National Medical Center, Washington, DC Daniel N. Davidow, MD Medical Director, Cumberland Hospital for Children and Adolescents Alan Delamater, PhD Director, Professor, Clinical Psychology, University of Miami Robert Gabbay, MD Chief Medical Officer, Joslin Diabetes Center, Senior Vice President, Associate Professor Medicine Harvard Medical School Ann Goebel-Fabbri, PhD Assistant Professor, Harvard, Clinical Psychologist, Joslin Diabetes Center Kenneth S. Gorfinkle, PhD Assistant Clinical Professor, Columbia University, Psychologist, Naomi Berrie Center Margaret Grey, DrPH, RN, FAA Dean and Annie Goodrich Professor, Yale University School of Nursing Michael A. Harris, PhD Director of Psychology, Child Development and Rehabilitation Center, Oregon Health & Science University Alan M. Jacobson, MD Chief Research Officer, Winthrop-University Hospital Suzanne Bennett Johnson, PhD Distinguished Research Professor, Department of Behavioral Sciences and Social Medicine Florida State University College of Medicine

Georgeanna Klingensmith, MD Chief, Pediatric Clinics, Professor of Pediatrics, Barbara Davis Center, University of Colorado Lori Laffel, MD, MPH Chief of Pediatric, Adolescent and Young Adult Section, Associate Professor of Pediatrics, Harvard Medical School, Chief Investigator, Joslin Diabetes Center Ake Lernmark, MD, PhD Principal Investigator, Professor, Lund University, Malmo, Sweden Marian Rewers, MD, PhD Clinical Director, Barbara Davis Center for Diabetes, Professor of Pediatrics, University of Colorado, School of Medicine Camillo Ricordi, MD Professor of Surgery and Medicine, Distinguished Professor and Chief, Cellular Transplant Center, University of Miami John Rolland, MD, MPH Clinical Professor of Psychiatry, University of Chicago, Executive Co-Director and Co-Founder, Chicago Center for Family Health Mark Schutta, MD G. Clayton Kyle Associate Professor in Diabetes, Medical Director, University of Pennsylvania, Rodebaugh Diabetes Center Mark Sperling, MBBS Professor of Pediatrics, Childrenâ&#x20AC;&#x2122;s Hospital of the University of Pittsburgh School of Medicine Paula Trief, PhD Senior Associate Dean for Faculty Affairs and Development, Professor of Medicine, SUNY Medical University Jill Weissberg-Benchell, PhD, CDE Associate Professor, Psychiatry and Behavioral Sciences, Northwestern University, Feinberg School of Medicine Garry Welch, PhD Associate Professor, Psychiatry, Director, Tufts University School of Medicine, Behavioral and Mental Health Section Howard Wolpert, MD Assistant Professor, Harvard School of Medicine, Director of Joslin Diabetes Center, Institute of Technology Translation

Agenda “Mental Health Issues of Diabetes” Conference

CO N F E R E N C E AG E N D A - D AY I 7:00 – 8:30 am

Registration and Continental Breakfast

8:30 – 9:00 am

Welcome

Arthur Rubenstein, MBBCh, Honorary Chairman Professor of Medicine, Division of Endocrinology, Diabetes and Metabolism, Former Dean and EVP for the Health System, Raymond and Ruth Perelman School of Medicine, University of Pennsylvania Lou Philipson, MD, PhD, Co-Chairman Professor, Medicine & Pediatrics, Director, Kovler Diabetes Center, University of Chicago Barbara Anderson, PhD, Co-Chairman Professor of Pediatrics, Associate Head, Psychology Section, Baylor College of Medicine Lee Ducat, Co-Chairman Founder, First President, JDRF, Founder, First President, HBDI, Founder, First President, NDRI Debra K. Osteen, Senior Vice President, Universal Health Services, Inc., King of Prussia, PA President, Behavioral Health Division 9:00 – 9:30 am

Keynote

Griffin P. Rodgers, MD, MACP, Director, NIDDK National Institute of Diabetes, Digestive and Kidney Diseases, National Institutes of Health

9:30 – 10:30 am

PA N E L I Type I Diabetes Medical Treatment and Mental Health Issues The Perspective of Patients and Their Families Panel Chairman

Lee Ducat, Founder, JDRF, Founder, HBDI, Founder, NDRI Panel Members

Tyler Brooke Genthe, Freshman, Spotswood High School, Spotswood, NJ Eileen Gelick, Past National President, JDRF, Board of Chancellors, JDRF, Chicago, IL Debra K. Osteen, Senior Vice President, Universal Health Services, Inc., King of Prussia, PA President, Behavioral Health Division Tony Rogowski, President, Crown South Realty, Atlanta, GA Howard Nathan, President/CEO, Gift of Life Donor Program Founder and President, Gift of Life Institute, Philadelphia, PA

10:30 am – 12:30 pm

PA N E L I I Type I Diabetes Medical Treatment and Research Panel Chairman

Lou Philipson, MD, PhD, Professor, Medicine & Pediatrics Director, Kovler Diabetes Center, University of Chicago The Chicago Model

Lou Philipson, MD, PhD The Pittsburgh Model Applying Evolving Knowledge in the Care of the Child With Diabetes

Mark Sperling, MBBS, Professor of Pediatrics, University of Pittsburgh Children’s National Medical Center Model Family Centered Care for Type I Diabetes

Fran Cogen, MD, CDE, Director, Childhood and Adolescent Diabetes Program Associate Professor of Pediatrics, Department of Endocrinology and Diabetes, Childrens National Medical Center

CO N F E R E N C E AG E N D A - D AY I Penn Rodebaugh Diabetes Center Model

Mark Schutta, MD, Medical Director, Rodebaugh Diabetes Center Associate Professor of Diabetes, University of Pennsylvania The Barbara Davis Center Approach to Providing Patient Centered Pediatric and Young Adult Diabetes Care

Georgeanna Klingensmith, MD, Professor of Pediatrics, Chief, Pediatric Clinics Barbara Davis Center for Diabetes Behavioral Considerations in the Optimization of Glycemic Control of Adults with Type 1 Diabetes

Howard Wolpert, MD, Senior Physician, Joslin Diabetes Center Diabetes Research Update Cellular Therapies to Regenerative Medicine

Camillo Ricordi, MD, Stacy Joy Goodman Professor of Surgery Distinguished Professor of Medicine, Biomedical Engineering, Microbiology and Immunology Director, Cell Transplant Center and DRI, Diabetes Research Institute 12:15 – 12:30 pm

Discussion

Lou Philipson MD, PhD 12:30 – 1:30 pm

Buffet Luncheon

1:30 – 3:30 pm

PA N E L I I I The Scope of Mental Health Issues of Diabetes Panel Chairman

Barbara Anderson, PhD, Professor of Pediatrics Associate Head, Psychology Section, Baylor College of Medicine Understanding Mental Health Issues, A Foundation for Diabetes Care Diabetes and Mental Health, Where the Rubber Meets the Road

Alan Jacobson, MD, Chief Research Officer, Winthrop-University Hospital The Barbara Davis Center Experience Patient Access to Care and Mental Health Quality

Marian Rewers, MD, PhD, Professor of Pediatrics & Medicine, University of Colorado School of Medicine Clinical Director, Barbara Davis Center for Diabetes The Naomi Berrie Center Model, “Diabetes, A Mind-Body Journey”

Kenneth Gorfinkle, PhD, Assistant Clinical Professor, Medical Psychology Presbyterian and Children’s Hospital, Columbia University Consulting Psychologist, The Naomi Berrie Diabetes Center Primary Prevention Approaches Through the Pediatric Years Addressing Psychosocial Needs

Jill Weissberg-Benchell, MD, PhD, Associate Professor of Psychiatry, Northwestern University Behavioral and Mental Health Challenges of Type 1 Diabetes Opportunities For Prevention and Early Intervention with a Team Approach

Lori Laffel, MD, MPH, Chief, Pediatric, Adolescent and Young Adult Section Investigator, Genetics and Epidemiology Section, Joslin Diabetes Center The Cumberland Model

Daniel Davidow, MD, Medical Director, Cumberland Hospital for Children and Adolescents Eating Disorders in Type 1 Diabetes, What We Know and Don’t Know

Ann Goebel-Fabbri, PhD, Clinical Psychologist, Joslin Diabetes Center Assistant Professor of Psychiatry, Harvard Medical School 15

CO N F E R E N C E AG E N D A - D AY I Families & Diabetes Addressing Psychosocial Needs to Reduce Risk and Promote Resilience

John Rolland, MD, Clinical Professor of Psychiatry and Behavioral Neurosciences, University of Chicago, Pritzker School of Medicine, Executive Co-Director, Chicago Center for Family Health 3:15 – 3:30 pm

Discussion

Barbara Anderson, PhD

3:30 – 4:45 pm

PA N E L I V The Scope of Mental Health Issues in Those “At Risk” for Diabetes and Family Members Panel Chairman

Ake Lernmark, MD, PhD Mental Health Issues in Individuals Screened at Birth for Diabetes Risk

Ake Lernmark, MD, PhD, Professor, TEDDY Study, Lund University/CRC Department of Clinical Sciences Lessons Learned from the TEDDY Study The Psychological Impact of Learning Your Child is “At Risk” for T1D

Suzanne Bennett Johnson, PhD, Distinguished Research Professor Department of Medical Humanities and Social Sciences, Florida State University College of Medicine Emotional and Interpersonal Challenges of Spouses and Partners of Adults with Type I Diabetes

Paula Trief, PhD, Senior Associate Dean for Faculty Affairs and Faculty Development, Professor of Psychiatry and Medicine, State University of New York Upstate Medical University Key Psychosocial Issues of Diabetes in Youth, Successful Team Management

Alan Delamater, PhD, Professor of Pediatrics and Psychology Director, Clinical Psychology, Department of Pediatrics, University of Miami 4:30 – 4:45 pm

Discussion

Ake Lernmark, MD, PhD

4:45 – 5:45 pm

PA N E L V Innovations in Treatment, Reimbursement Issues Panel Chairman

Garry Welch, PhD, Director, Behavioral Medicine Research, Baystate Health Center Research Associate Professor of Psychiatry, Tufts University School of Medicine The Integration of New Remote Home Monitoring Technologies with “Team Care” in Diabetes

Garry Welch, PhD Using Technology to Deliver Behavioral Interventions

Margaret Grey, DrPH, RN, FAA, Dean & Annie Goodrich Professor, Yale University School of Nursing Novel Intervention for Youth Repeatedly Hospitalized for DKA

Michael Harris, PhD, Professor, Pediatrics, Chief of Pediatric Psychology, Child Development and Rehabilitation Center, Oregon Health & Science University How Will the Changing Health Care Reimbursement Landscape Support Innovation

Robert Gabbay, MD, PhD, Chief Medical Officer, Senior Vice President, Joslin Diabetes Center 5:45 – 6:00 pm

Discussion, Adjournment

7:00 pm

Cocktails and Dinner

CO N F E R E N C E AG E N D A - D AY I I 7:00 – 8:30 am

Breakfast Buffet

8:30 – 9:00 am

Charge to Workgroups – Ballroom South Introduction of Workgroup Chairmen Workgroup Member Assignments and Subjects Conference Co-Chairmen

Lou Philipson, MD, PhD, Barbara Anderson, PhD, Lee Ducat Goals Identify the core psychosocial issues at each stage of development across the life span that could be organized into standardized modules to integrate mental health care with the medical care of persons with Type 1 Diabetes. Develop a model for screening for mental health risk factors such as depression, suicide, drug addiction, and eating disorders as part of a new paradigm of care for persons with Type 1 Diabetes in which mental and physical health care are both priorities. Define a research agenda for validating a new paradigm of care for persons with Type 1 Diabetes in which, through the use of standardized psychosocial modules, mental and physical health care are both priorities. 9:00 – 10:30 am

The Plan: Creating a New Paradigm for Type I Diabetes Treatment The Approach: Design of Standardized Modules for Diabetes Medical Treatment and Mental Health Therapy Discussion Leader - Arthur Rubenstein, MBBCh, Honorary Chairman Discussants

Barbara Anderson, PhD Fran Cogen, MD, CDE Daniel N. Davidow, MD Lee Ducat Alan Delamater, PhD Robert Gabbay, MD Eileen Gelick Ann Goebel-Fabbri, PhD Kenneth S. Gorfinkle, PhD Margaret Grey, DrPH, RN, FAA Michael A. Harris, PhD Alan M. Jacobson, MD Susan Bennett Johnson, PhD 10:30 am – 1:30 pm

Georgeanna Klingensmith, MD Lori Laffel, MD, PhD Ake Lernmark, MD, PhD Debra K. Osteen Lou Philipson, MD, PhD Marian Rewers, MD, PhD Tony Rogowski John Rolland, MD, MPH Mark Schutta, MD Paula Trief, PhD Jill Weissberg-Benchell, PhD, CDE Gary Welch, PhD Howard Wolpert, MD

Four Workgroup Discussion Sessions Workgroup Chairmen

Georgeanna Klingensmith, MD

Marian Rewers, MD, PhD

Ake Lernmark, MD, PhD

Jill Weissberg-Benchell, PhD, CDE 17

CO N F E R E N C E AG E N D A - D AY I I

WO R KG RO U P I Workgroup I Chairman - Jill Weissberg-Benchell, PhD, CDE

The Integration of Medical and Mental Health Treatment for Type 1 Diabetes Patients and their Families Identify the major psychosocial issues, supported by data, and how they could be integrated into the treatment of Type 1 Diabetes for children, adolescents, young adults and their families in a new paradigm of care for persons with Type 1 Diabetes in which mental and physical health care are priorities, considering innovations in treatment and reimbursement issues. Workgroup I Participants

Fran Cogen, MD, CDE Eileen Gelick Margaret Grey, DrPH, RN, FAA Susan Bennett Johnson, PhD

Arthur Rubenstein, MBBCh Mark Schutta, MD Howard Wolpert, MD

WO R KG RO U P I I Workgroup II Co-Chairmen - Marian Rewers, MD, PhD and Kenneth S. Gorfinkle, PhD

The Prioritization of Major Psychosocial Issues in a New Treatment Design Identify the major psychosocial issues, supported by data, and how they could be integrated into the treatment of Type 1 Diabetes for children adolescents, young adults and their families in a new paradigm of care for persons with Type 1 Diabetes in which mental and physical health care are both priorities. Workgroup II Participants

Barbara Anderson, PhD Daniel N. Davidow, MD Alan Delamater, PhD

Lori Laffel, MD, PhD Tony Rogowski

WO R KG RO U P I I I Workgroup III Chairman - Georgeanna Klingensmith, MD

Model for Mental Health Screening and Intervention in Type I Patients and Families for Depression, Suicide, Drug Addiction and Eating Disorders For the new paradigm of care for persons with Type 1 Diabetes in which mental and physical health care are equal priorities, propose a model for screening for depression, suicide, drug addiction, and eating disorders which could be integrated into ongoing diabetes health care in order to prevent and treat these devastating mental health complications in persons with Type 1 Diabetes. Workgroup III Participants

Ann Goebel-Fabbri, PhD Alan M. Jacobson, MD Debra K. Osteen 18

Lou Philipson, MD, PhD John Rolland, MD, MPH

CO N F E R E N C E AG E N D A - D AY I I

WO R KG RO U P I V Workgroup IV Co-Chairmen - Ake Lernmark, MD, PhD, Paula Trief, PhD,

Suzanne Bennett Johnson, PhD Potential Future Research Projects and Resources Needed to Test New Paradigm of Treatment Predict future research projects and resources needed to assess the effectiveness of a new paradigm of care for persons with Type 1 Diabetes in which, through the use of standardized psychosocial modules, mental and physical health care are both priorities, considering innovations in treatment and reimbursement issues. Workgroup IV Participants

Lee Ducat Robert Gabbay, MD

1:30 – 3:30 pm

Michael Harris, PhD Garry Welch, PhD

WO R KG RO U P R E P O RTS Workgroup Chairmen

Jill Weissberg-Benchell, PhD, CDE Georgeanna Klingensmith, MD 3:30 – 4:00 pm

Ake Lernmark, MD, PhD Marian Rewers, MD, PhD

Summary, Final Comments and Adjournment Conference Co- Chairmen

Barbara Anderson, PhD Lee Ducat

Lou Philipson, MD, PhD Arthur Rubenstein, MBBCh

Keynote Griffin P. Rodgers MD, MACP Director NIDDK, NIH

KEYNOTE Griffin P. Rodgers, MD, MACP, Director NIDDK National Institute of Diabetes, Digestive and Kidney Diseases, National Institutes of Health

RESEARCH AT NIDDK: TYPE 1 DIABETES AND PSYCHOSOCIAL FACTORS International and US data, through approximately 2002, indicate that Type 1 diabetes has been increasing in incidence and, in fact, doubling every 20 years. Data from the â&#x20AC;&#x153;SEARCH for Diabetes in Youthâ&#x20AC;? study demonstrate statistically significant increases in Type 1 prevalence between 2001 and 2009. Data indicates that the non-Hispanic, white population continues to have the highest prevalence; however, there is a statistically significant increase in type 1 diabetes in African-Americans, Hispanics, and Asian and Pacific Islanders. Although the highest prevalence still remains in young people between 10 and 19 years of age there is a statistically significant increase in the prevalence in youth between five and nine years of age over the eight year study observation period. Despite the considerable progress in the treatment of Type 1 diabetes over the past few decades there remains considerable room for advancement. Diabetes damages nearly every organ system and is the leading cause of kidney failure, adult blindness, as well as amputations. Diabetes can also lead to cardiovascular disease, chronic skin ulcers, periodontal disease, depression, pregnancy related complications and urologic complications. NIH supported clinical trials have shown that tight control of blood glucose levels prevent or delay the complications of diabetes. Unfortunately, it is difficult to obtain optimal blood sugar control for many individuals living with type 1 diabetes. The NIDDK supports research at all stages of type 1 diabetes including research focused on preventing onset, slowing the progression, improving treatment and prevention, and arresting or reversing complications. This talk will highlight some of the NIDDK supported research across all stages of type 1 diabetes and then focus on some of our ongoing and new initiatives and priorities specific to behavioral and psychosocial research in T1D. The Epidemiology of Diabetes Interventions and Complications Study (EDIC) is an observational study examining the durability of the effect of intensive glycemic treatment in reducing complications of Type 1 diabetes as well as risk factors associated with the long-term complications of type 1 diabetes. The study began in 1994 after the DCCT ended and follows nearly 95% of the 1441 participants previously enrolled in the Diabetes Control and Complications Trial (DCCT). The DCCT demonstrated conclusively that intensive treatment (mean HbA1c 7.2%) reduced the development and progression of diabetic retinopathy, nephropathy and neuropathy, compared to conventional treatment (mean HbA1c 9.0%). The primary aim of EDIC is to examine the long-term effects of conventional versus intensive diabetes treatment received during the DCCT on the subsequent development and progression of microvascular, neuropathic and cardiovascular complications. The study also examines the influence of genetic factors and other factors such as HbA1c, blood pressure, lipid levels, and treatment modalities on the development and progression of these complications. Study participants have now been followed for close to 30 years from the initiation of this trial. DCCT/EDIC clearly demonstrated that tight glucose control can have a lasting and substantial effect on future complications as evidenced by a 76% reduction in eye disease, 50% in kidney, 60% in diabetic neuropathy, and a 57% reduction in cardio-vascular disease. The study provides a strong imperative to find improved approaches to achieving intensive glycemic control. 22

The restoration or replacement of beta cells is one important approach to improving glycemic control and the treatment of type 1 diabetes. Two NIDDK led efforts are underway. One is the “The Beta Cell Biology Consortium”, which, in a sense, is a Manhattan project to develop cell-replacement therapies for diabetes through beta cell regeneration or differentiation or reprograming of progenitor cells into pancreatic beta-cells. The second, the “Clinical Islet Transplantation Consortia” tests the safety and efficacy of islet transplantation in individuals with Type 1 diabetes and severe uncontrollable hypoglycemia or end stage renal disease. “The Type 1 Diabetes Genetic Consortium”, is an international study which has thus far identified well over 50 genes or gene regions that increase risk of type 1 diabetes. The “TEDDY Study” is a bold effort to look for environmental determinants of type 1 diabetes in youth. This study has screened some 450,000 infants and enrolled over 8000 at high genetic risk who are being studied longitudinally for a period of 15 years to determine factors in the environment which may trigger autoimmune destruction of the beta cells of the pancreas. Another area of great interest is to stop the autoimmune attack and to preserve beta cell function. Two complementary research consortia, “The Type 1 Diabetes TrialNet” sponsored by NIDDK, as well as NIAID’s “Immune Tolerance Network” examine approaches to slow or reverse the disease process. Despite the tremendous advancement in treatment over the past few decades, diabetes management requires individuals to engage daily in complex balancing of medications, behavioral tasks, attention to diet and to activity in order to achieve good glucose control while avoiding hypoglycemia. Lapses in these behaviors, including avoiding blood glucose monitoring and skipping or delaying or under-dosing or over-dosing insulin can result in hypoglycemia or hyperglycemia and life-threatening diabetic ketoacidosis. NIDDK supports behavioral science research to address diabetes management across the lifespan, including research to identify and overcome barriers to adherence including potential mental health co-morbitites such as depression, distress and anxiety. This research focus includes developing and testing treatment approaches that are appropriate to the unique needs of various age groups such as very young children, adolescents, young adults, and the elderly. A new initiative has been established to support research to develop, refine and pilot test innovative strategies to improve diabetes management in young children with type 1 diabetes (5 years of age or younger) titled, “Improving Diabetes Management in Young Children with Type 1 Diabetes”. Treatment regimens can be especially challenging for very young children and their families. For example, smaller insulin doses can be more challenging to calculate and young children are more susceptible to hypoglycemia, particularly at night. There are also challenges specific to development, such as a young child’s more limited ability to detect and communicate changes in their physical status, unpredictable/picky eating, and variable activity and sleep patterns. Further, parents of young children with type 1 diabetes often report stress related to things such as constant vigilance and fear of hypoglycemia. At the end of the funding period, there should be a well characterized intervention that has been demonstrated to be safe, feasible to implement, acceptable in this target population and promising and ready to be tested in a larger efficacy trial. Adolescents and young adults are an age group that is at particularly high risk for poor diabetes management. Complex and demanding treatment regimes may be especially difficult for adolescents and young adults. Adolescents experience significant developmental changes at puberty combined with increased peer influence and issues related to emerging autonomy and increased responsibility for life choices. Young and emerging adults are often faced with significant financial, healthcare, social interpersonal transitions 23

that make it challenging to adhere to a diabetes management regime. Improved intervention is needed to enhance adherence to prescribed regimes. Improved interventions need to be developed and tested. Five grants have been funded to develop and test novel interventions with investigators focusing on behavioral economic approaches, working memory, stress management, motivation enhancement, social learning and positive affect as a means to improve diabetes outcomes in this age group. Factors that facilitate or impair good glucose management are different across the lifespan. Clearly the needs and support required are not the same for a 40 year old or a teenager or someone who is 65 years of age. The data that exists about diabetes self-management in adults with Type 1 diabetes is limited. An improved understanding of the social, economic, environmental, behavioral, emotional and medical management factors in adults is needed to identify possible targets for intervention. For example, in working age adults, we need to understand specific life stage issues and their effects on diabetes selfmanagement, such as building and caring for a family and establishing and maintaining a career. In older adults we need to understand the management of diabetes in the context of age and diabetes related changes in functioning, such as the onset of cardiovascular disease, various musculoskeletal disorders, end stage renal disease, painful neuropathy, cognitive impairments, and hearing loss or changes in life situations such as in assisted living or nursing home facilities. We are very interested in better understanding these factors within the new initiative, titled “Understanding Barriers and Facilitators to Type 1 Diabetes Management in the Adult”. Depression co-occurs in people with diabetes at a higher rate relative to the general population. It is associated with less participation in diabetes self-management, higher acute hyper- and hypoglycemic complications, as well as increased rates of chronic complications and mortality. However, there is limited data specific to Type 1 diabetes and depression as much of the existing literature includes mixed samples of individuals with both Type 2 and Type 1 diabetes without adequate power to detect unique factors related to Type 1 diabetes. Further, the mechanisms underlying higher co-morbidities are not clear and are a potential area for future research. To better understand the state of the science and identify research gaps, the NIDDK organized an “International Conference on Diabetes and Depression” in October 2012; a multi-disciplinary and multi-national meeting focused on the co-morbidity of these two significant and chronic conditions. The meeting highlighted the need to understand how to best treat patients with co-morbid mental health conditions, such as depression, but also including anxiety, eating disorders and attention deficit disorders. We recognize that behavioral and psycho-social factors play a core role in diabetes management and are within our strategic plan. Advances in diabetes technologies, such as continuous glucose monitors, insulin pumps and artificial pancreas systems, are bringing hope for improved glycemic control individuals with Type 1 diabetes. However, the best treatment approaches are only effective if they are used correctly and their use is sustained. Research is needed to enhance the use of diabetes technologies and explore ways to use health information technologies to further improve adherence and care and extend the reach and cost effectiveness of efficacious intervention. The NIDDK certainly looks forward to hearing the recommendations that result from this particular meeting. I once again want to thank you for inviting me to give the keynote, at this very important conference.

Panel 1 Type 1 Diabetes Advocates

TRANSCRIPTION The Mental Health Issues of Diabetes National Conference Tuesday, October 8, 2013

PANEL 1

Ducat:

Will members of panel one please come up and take your seat. We felt it very appropriate in the design of our conference, although there are so many experts on the faculty, that you needed to hear the point of view of the families and the patients. I had looked at other conferences that were tailored to the mental health illnesses of diabetes and somehow the voice of the patient and the family wasn’t prominent in the deliberations. So being the mother of a patient and being an advocate for diabetes care and for patients, I thought it was important that we hear from people who are parents with diabetes patients in their families and people who have diabetes. I don’t know what these people are going to say. I did not ask them. The only thing I did was ask them to be on the panel. I do know that one of our youngest on the panel, somewhat newly diagnosed, is feeling a little uneasy about being the youngest person in the room. I am going to start by talking to Tyler.

Tyler:

Hi!

Ducat:

I’m going to ask her some questions. If you, in the audience, would like to ask her questions, we can provide for that as well. Someone said, how did you and Tyler get connected, well, you know I am connected with a lot of young people with diabetes who call me. She didn’t call me. I got a letter from her teacher who said one of my students wrote an essay about you and I am sending the essay to you. Well, the title of the essay was what?

Tyler:

“The Person of the Millennium”.

Ducat:

“The Person of the Millennium”. Well, how can you ignore that? So, I got in touch with Tyler and I was intrigued by her reaction to diabetes. And I thought a newly diagnosed young person with diabetes might be someone that we want to hear from. So Tyler, how did you feel when you were diagnosed? Can you remember that moment?

Tyler:

Well, I felt like I was alone in everything and I was crying a lot. And even though my older sister was there, because she has diabetes too, but I still felt like I was, an outcast almost. It was just terrible.

Ducat:

Oh my goodness. Did you get lots of hugs?

Tyler:

Yeah, most of my friends, they didn’t even know where I was because I just went to the hospital and I didn’t tell anyone until after I got out.

Ducat:

How did you feel about being in the hospital?

Tyler:

I didn’t like it, but at the same time I did because I got to miss school, so…

Ducat:

There are good parts to everything, right?

Tyler:

I felt that day that I was the only one that had it. And then I found JDRF now I know that there are a bunch of people that have it and they all feel the same way.

Tyler:

I felt that day that I was the only one that had it. And then I found JDRF now I know that there are a bunch of people that have it and they all feel the same way.

Ducat:

Quite a bunch, like more than a million.

Tyler:

Yeah.

Ducat:

What’s the reaction of your friends?

Tyler:

Well, my friends don’t really care. I don’t know how else to say it but they don’t know much about it and they want to know. Some of them are really willing to know but most of them think there’s enough awareness, and you could just shut up pretty much. And I said, you’re not my friend if you don’t want to listen to this because this is my life now.

Ducat:

You haven’t lost any friends though.

Tyler:

Well, some of them don’t want to be friends with me because I talk about diabetes too much. In fact, I don’t want to be friends with them if they think I talk about it too much because I do, I’ll admit it. I talk about diabetes every day but that’s just because I live with it every day.

Ducat:

What about the treatment? Do you find it okay? Overwhelming?

Tyler:

I don’t like shots. I don’t let doctors give me shots. So I guess giving myself a shot was like the most anxiety-filled thing I have ever done. But I actually did it! And I think it’s better than getting a shot from a doctor just because I can control what I’m doing. I have an insulin pump now, it’s better regulated than the needle.

Ducat:

How do you feel about being here? I know you told me yesterday that everybody here is old. [Laughter!]

Tyler:

No offense, guys. I’m 16.

Ducat:

I said no, they’re not all, “old”, but they’re not as young as you are, right! But is this too heavy an atmosphere for you? I worried about you being a part of this panel.

Tyler:

I honestly feel amazing to be here. And I’ve met people that I’ve honestly cried over, just meeting them.

Ducat:

Like who did you cry over?

Tyler:

I cried last night because I met Camillo Ricordi – he’s like my “all-star”.

Ducat:

Oh, she’s hyperventilating now!

Tyler:

I don’t know, I think it was a little too much preparing a speech and everything and being able to be up with you guys, just because I’m so young. It’s really great to be here. Thank you for having me.

Ducat:

Oh well, thank you for coming. And I think that’s your mom who’s taking pictures of us—

Tyler:

Hey!

Ducat:

She’ll have a permanent recording. So do you still think I’m the “Person of the Millennium”?

Tyler:

Yes, definitely.

Ducat:

Well thank you. I appreciate that.

Tyler:

You’re welcome.

Ducat:

That’s what got you here you know.

Tyler:

Yeah, I know.

Ducat:

What do you think – let’s end on this – would be the most important thing to you, as a teenager, in terms of facing life with diabetes?

Tyler:

I think that they should start teaching more about it in school because it helps with bullies, – well I mean they’re still going to bully you for having it, just because you know, it’s like weird to have diabetes. I think that they should have it taught in school so we don’t get made fun of for spreading more awareness about it.

Ducat:

I think that’s a great suggestion. And there are many schools and school nurses and school doctors who do provide an awareness of diabetes. And certainly we could get to your teacher about that because she still writes to me.

Tyler:

She still does?

Ducat:

Yeah. We have friends out there who can affect some of these things and that’s very positive! There’s more needed on the awareness of diabetes throughout our population, not only among your friends. That would help you incredibly, maybe we can talk more about that during the conference.

Tyler:

Okay.

Ducat:

Okay. Does anybody have a question for Tyler?

Catherine: Hi Tyler! I’m Catherine, I’m also a Type I Diabetic and … You mentioned that your sister has diabetes. Tyler:

Yeah.

Catherine: And I grew up the only person in my family with Type I. And I was just wondering what that was like for you, if it was helpful or if, in some ways, it made it more difficult? Tyler:

Well, it was helpful because in the beginning I had no idea what diabetes really was. And then once my sister told me everything – she said, oh you can pull the diabetes card, like, oh sorry, I can’t do that, I’m diabetic. I guess she made it easier for me than harder.

Ducat:

Are there any other questions?

Jacobson:

Hi! I’m Alan Jacobson.

Tyler:

Hi!

Jacobson:

I was curious about your comments about school in terms of how the teachers, the administration, the nurses reacted. How easy you have found it to deal with them and they with you as you’ve been adapting to it. Are they highly responsive? Do they understand it? Is it a struggle?

Tyler:

Well, most of them do understand. I actually teach more to the nurse than she teaches me, which is kind of funny. But my teachers, sometimes yell at me if I have food out and they yell at me if my pump goes off. And I’m like, I’m diabetic! If you want me in your class then I guess you’re going to have to let me do this or I’ll just leave and go to the nurse. But they re very understanding, most of them. So I think it’s actually been a lot less stress off of me that they know and understand.

Jacobson:

Are you on any sports teams where diabetes comes into play?

Tyler:

Well, I tried out for cheerleading and I didn’t make it because I couldn’t do stunting. And I was just like, whatever. I can’t do this, sorry.

Ducat:

There was a question over here.

Nicole:

I have a question. Hi Tyler! I’m Nicole—

Tyler:

Hi!

Nicole:

I have diabetes also, so you’re not alone in the room. There are lots of us.

Ducat:

This is Nicole Johnson, Miss America 1999. [Applause]

Nicole:

Tyler, I thought you said something really, really important at the beginning about your friends and about relationships. And if you are able, I would love for you to expand more on that. What kind of things could the people in this room – create, develop, invent that would help you – and other people like you – in that process of communicating with your friends?

Tyler:

Well, I really don’t know. I guess they could have some kind of PowerPoint presentation in my school to show how that affects me. They say that I’m over sensitive to diabetes comments. They say, Billy has 50 candy bars. He eats all of them. What does he have now? Diabetes, ha, ha, that’s so funny and so untrue too! I guess you can’t really do anything about it. It happens.

Ducat:

Well, this might be, Nicole, something that some of our workgroups might look at because apparently some more needs to be done. Not enough is being done. I think that’s a very important point. Thank you.

Man:

Lee, may I ask a question?

Ducat:

Okay.

Man:

Tyler, last night you shared a story with us around the dinner table. . . Last night, we met Tyler at dinner and she shared a story with us that I think points to two really important things. One, that life as a teenager with diabetes is different today than it was 10 years ago. And two, that laughter is the best medicine and there is no substitute for that in dealing with chronic conditions. And if you’d share that story, I’d love to hear it again.

Tyler:

Wait, it was the one with the diabetes joke, right? Okay, so a diabetic goes to a sleepover, brings a bunch of clothes that she knows that she’s not going to wear, but forgets her meter at home. We still laugh about it today, it’s like, oh, what’d she forget? Her meter. It’s so funny. Yeah.

Ducat:

We’ve gotten so much from Tyler. You have to know she’s an unusual student. Her teacher wrote me glowing reports about the work that she does and the essay that she wrote for me was extraordinary. I see a great future for you, Tyler as a writer or a speaker or a joker, I’m not sure.

Tyler:

All three.

Ducat:

So, thank you for being here. We will get on with the rest of our panel now. Each one is going to talk from their own perspective. Will you guys introduce yourselves. You know, I know you all well, but please introduce yourselves.

Gelick:

Good morning, I’m Eileen Gelick. I’m a mother of a boy – a man who’s got diabetes and a granddaughter who’s got diabetes. I’ve been involved with the Juvenile Diabetes Foundation for 40 years. I’ve watched the progression of this disease over the years. I am honored to be here and among you. I always am awed by how hard you work in what you do and how 29

hard you try to help us with this terrible disease. You’re a hard act to follow, Tyler, but I am going to do my best. And I want to thank you all for being here today. Lee asked me to be a part of this panel and once again join her in the pursuit of yet another very neglected complication of diabetes, ”Mental Health Issues”. She called me and said, Eileen, would you do this? Of course, I immediately said yes. So, we are here today and I’m supposed to talk about complications of diabetes. You all know about the complications of diabetes so well and how it affects the patient, the family. So I’d like to just tell you a story – a life story and you can judge for yourself the mental health implications of diabetes on the patient and the family. Thirty-nine years ago, a five-year-old boy, Evan, was suddenly hospitalized, diagnosed with Type I Diabetes. Celebrated his sixth birthday in the hospital and was taught to give himself insulin shots with two different kinds of insulin combined in a needle that would often plug, and which it did frequently. He kept practicing on an orange. He was told to “double void”. What’s that to a six-year-old? Test his urine – how humiliating at that age – and hope it turns out blue, not orange. Blue becoming your favorite color. He was given a weighed gram diet – a conversion table, so if he had the flu, he could translate it into available glucose. And he was sent home after five days and told to hope for the best. Parents were afraid, angry, frustrated by what seemed to be an evitable, gloomy, a shortened lifespan of their child and suffering from horrific complications. Books on living with diabetes were few and far between and so you went to the medical library and bought the textbook that your pediatrician had written. Frightening images appeared to be the very grim future. So you, as a parent, muster your determination not to have your child sit in the middle of the road waiting for the truck to hit. You join an organization, you raise money for research, you serve on national advisory boards, and you travel the world trying to recruit anyone who could help. Siblings were also afraid. They were afraid to be responsible for their brother knowing that he could have an insulin reaction at any time. Since there was no home glucose testing, they’d have to call the paramedics. And also they were afraid for themselves – were they going to get diabetes too? Family life was to resume. Life was supposed to return to normal. Parents were determined to make their child’s life normal. School, hockey, sleep-overs at friends’ house, camps, family vacations, all required careful planning and many good family and friends willing to assume the responsibility of caring for a child with diabetes; sleeping with one eye and ear open 24/7, testing urine in the morning, which gave four-hour results, at best, that you could do nothing about unless he was spilling ketones, giving your child the shot, weighing his breakfast and lunch on the gram scale, making sure those Life Savers, which were appropriately named, were in his pocket, and sending him off to school hoping he would return alive. Now, you tell me, is that normal? Words like non-compliant, cheating, lying over test results, filling out charts and graphs for the month ten minutes before you saw the doctor and denial of your disease and the implication of not taking care of yourself. These words and actions only instill guilt, fear, and bad feelings about yourself. Words like, if I grow up not when I grow up come into the conversation. 30

But the child continues with his life, assumes the burdens of his disease, and does participate as happily as possible, never complaining. He goes into high school, goes on an exchange program to France, and you stand – and you could in those days – on the roof of the garage watching the plane fly off and you wonder if you did the right thing. We did. During those years, we looked for psychiatrists and psychologists who could help him and the family deal with the realities of living with a chronic disease. No one could be found, even though some were tried. Then, very successful college and graduate school years during which no complications appeared. And then marriage. And then, 20 years into the disease, just like clockwork, just like the book said, the nightmares became a reality. Retinopathy, laser treatments, three vitrectomies, kidney transplant, pancreas explant, neuropathy, gangrene – left leg amputation, right to follow soon, depression, and who knows what is to come. During those years, he had two beautiful daughters who bring us all great joy. But their worry, stress, and tension for their father does not come without consequences. Then, a shocking surprise. His younger daughter, Olivia, was diagnosed with Type I Diabetes at the age of four. She is now 11. The first words out of her mouth, when she was diagnosed were will I need a kidney transplant too? And so the cycle begins again for us. And many. And though they tell me that she will never have complications because she is on the pump, home glucose monitoring, better insulin, etc. From what I observe, the same fear factor still exists. Vigilance is still required, as we’ve heard of today. Falling off the wagon is still not allowed. Variation is difficult to control. Guilt and shame is still there. Worry of the potential of complications and living with a chronic disease that so consumes everything you do has to affect you. You appear happy, an achiever, participating and loving life every day. But the real worry still exists. We have not found a cure for diabetes and better treatment for the complications. And though we have, and are trying to, as you all know and as you are all trying, it is an elusive and complicated disease. And though some treatment has improved, and we need to believe we are getting there, we still need to persevere. The need for mental health providers that deal with this specific disease is essential to help support our kids get through the day of living with diabetes. None of them live a normal life, no matter how hard we try to convince ourselves that this is normal. I can only hope that you, in this room, can put together an ambitious plan to address this important and neglected complication of diabetes. And I look forward to learning from you today. And thank you for coming. Ducat:

I would like to add that Eileen and Michael have been leaders in the diabetes effort, in the Juvenile Diabetes Research Foundation, in the government, at the NIH. Eileen has been twice, and I can’t figure out why twice, if my memory is correct, national – international president of the Juvenile Diabetes Research Foundation. So, what she gave to you today was her ultra personal experience. And despite it all, she has been driven, persuasive, and very passionate about finding the cure for diabetes. Thank you, Eileen. We have a question for you, Eileen.

Woman:

Eileen, thank you so much. I have Type I as well, and have devoted my life to research, particularly qualitative research and social science to try to find what’s going on in families. It’s only been two years ago that I asked my mother what was it like for you on diagnosis? You know, I had thought about it myself and what I had gone through and I appreciate your story to a great extent, the worry and the complications. She just broke down and 31

cried with me, as an adult, just because she couldn’t release that when I was young. She was told that I would have a life as normal as possible. And I was supposed to act normal, and that meant denial a lot of times of the disease and of all of the things that I was worried about. So I do appreciate your story and I just want to reiterate that. I’m wondering how you do get through the worry about complications, since this is a conference about mental health and diabetes. Because it is so difficult, it would help to have your insight. Gelick:

Thank you. You get through it like you get through everything in life, day by day, and you take each one on individually. You search around the world for the best doctors and I’ve been blessed to be able to have the best doctors and my son has been blessed with having them. And I think initially you get through it because of – well, I got through it because of his strength, his personal strength to overcome all the challenges in his life and how he faced those challenges, which were great. And those endless days in the hospital and recuperation and physical therapy and on and on, and traveling to get medical care. It was his strength, actually, that helped me be strong and face the realities, and his real desire to live. I mean, he chose life! That’s not true for everyone, but he chose life. Thank you.

Ducat:

One more question.

Rubenstein: Hi, my name is Mark Rubenstein and I was diagnosed in 1950 with Type I Diabetes – that was 63 years ago. And Eileen and I have gone back a long time and have known each other and sorry to hear about the complications of your son. Lee has been my support and the person I could always look to and, of course, with Carol Laurie. You know, the family help is probably the most important. My parents had no idea what diabetes was, nor did any body else except probably for the Joslin Clinic back in 1950. But I remember the most im portant part was that Elliott Joslin said to me, you’ve got to keep your head up and you’ve got to be in good control. And every time I see you, I am going to ask you what your last blood sugar was. And if it wasn’t good enough, I’m going to get you back in control and keep it there. Between good control and good insulin, now I’m on a pump and continuous glucose monitor, and a lot of exercise and a lot of support from my wife and daughter, I’ve been able to live through it for 63 years, with a couple of complications, but fortunately nothing major. I just give you a lot of credit, Eileen, for your time and effort to support your family and grandchild. Gelick:

Thank you.

Ducat:

The next panelist is Debbie Osteen.

Osteen:

Lee asked me to share a personal story. I, as you know, I mentioned earlier that I work for a healthcare company. But coping with Type I Diabetes became a personal focus for me and my family when my daughter was diagnosed with Type I at age 11. She is now 16. We were out of town attending a family wedding in Denver, Colorado, and we came to the realization that our daughter had this chronic disease. And I can remember sitting in the ER with my daughter. And I remember she patted my arm – because I was the one who was crying. And I remember thinking, well, she’s handling this well. I didn’t understand what was to come. Fortunately, Denver has a valuable resource in the Barbara Davis Center and they helped us manage the medical issues through the weekend. And I remember the physician there said call my cell phone any time you need me even though he knew he was not going to see us again. But I still am grateful for what he did to extend himself to us.

In Philadelphia, we came back and we did receive medical support through an endocrinology group. We were struck, at the time, with the overwhelming aspect of managing Type I Diabetes and the life-threatening complications, which Eileen has talked about. I’ll be honest; I was almost totally focused on the physical aspects of the disease that overnight completely transformed my daughter’s life as she began her teenage years. And it also transformed and changed my family’s life as well. Even though I had a sister with a son who had been diagnosed at the same age, I had very little real understanding of the emotional aspect of this chronic disease, even though I had watched my nephew. But it was not real to me because even though as a relative I did not have the pressure of handling that every day. So, as we focused on the daily management of the physical, we didn’t appreciate the emotional toll. We were given numerous materials and I didn’t have to go to the library, but we were handed pamphlets and books. We were prepared for the medical and the physical management, but not for the psychological consequences. We knew about highs and lows and what to watch for but not the emotional impact of this disease and what it would have on our teenage daughter. And I look back now at the lack of awareness and I know that our daughter felt alienated in school. People didn’t know about what Type I or Type II. We always knew Angela was just a little bit heavier, but not heavy. The adjustment at school was not easy. The comments made by her classmates, being pulled out of class to check her blood sugar and being embarrassed that she was being singled out. They were doing their best to help my daughter. But comments by teachers of don’t eat this around Angela because you know; Angela’s not supposed to eat sweets were not a conscious effort to be hurtful, but a lack of education about what Type I Diabetes is all about. Almost by accident, as recounted now by my daughter, she discovered that by not taking insulin, she could eat anything she wanted – a teenager’s dream – and lose weight. Obviously, as over a several year period, this presented life-threatening complications to her from skipping her insulin and not understanding what might happen in the future, and not caring, frankly, at the time about those complications. So, as I did my research on the internet, I realized that researchers had found that young women with Type I Diabetes are more than twice as likely to develop an eating disorder as non-diabetic peers. And this much higher prevalence of teenage diabetic girls with an eating disorder was startling to me, even though I had been in the mental health field – not as a clinician, but as an administrator in hospital operations. Unfortunately, this disorder is growing, and despite my knowledge and oversight of mental health facilities, I struggled with identifying appropriate resources. I can’t tell you how many lists I was given of people – well, here is a list of practitioners and you can find one on this list. But all of us, those in mental health know that the connection between patient and professional is just as important as the knowledge and expertise of the practitioner. I believe that there are still doctors, and parents like me, who may not recognize the psychological complexity and instead see this problem as noncompliance. You just need to take your insulin. So, I am here to represent family. We need information and we need support to reduce the risk of the emotional cost of Type I Diabetes. I believe that over time, even the strongest families can suffer psychological consequences from the enormous strain and the ongoing burdens of this illness that happen every day and you know no one takes a vacation from this! I can remember my daughter coming in one evening and she said I’m not going to be a diabetic anymore! And I said that’s not going to work! But she thought that by just saying I just don’t want to be a diabetic at age 13 she envisioned that her diabetes could go away. I told her I was sorry, if I could take this I would, but I couldn’t. 33

So I am hopeful that this conference will result in a change in the way that Type I diabetics are guided through the many stages that are going to occur as they live with this disease. Rogowski: Good morning. My name is Tony Rogowski; I’m from Atlanta, Georgia. I am here with my wife, who is in the back, Kathy. Even though I’m from Atlanta, understand I grew up in New York, so if I am more direct than some, you won’t hold it against me. I was struck by something you said and I promise you every parent has said this to their child at one time or another, maybe if I could have that disease, if I could have your disease, I’d take it in a minute. That’s in all of our hearts. I’d die to take away my children’s diabetes. That’s what we live with all the time. I’ve had such a wonderful relationship with the City of Philadelphia and JDRF; they’ve been just great, great friends to me. My first experience here was being asked to speak at the Promise Ball in 2010 that celebrated Lee’s 40th Anniversary of founding JDF and speaking at Fund A Cure. And I’ve spoken around the country. We raise a lot of money – we raised a lot of money that night in the teeth of the worst economic depression we’ve all known. And the speech was a breeze – it wasn’t a speech, it’s my story. But it went easily, but frankly, the collective knowledge about diabetes in the room of a thousand people was not much greater than what I possess, so it really wasn’t pretty hard. This morning, I started reading through the bios of this room, and I went holy crap! What – you know – what am I going to teach these people about diabetes. You know, I might as well call up Jack Daniels and tell them how to improve whiskey. I was concerned. But you know, I learned – I am a student of history and I was once again reminded of something I was taught in school about Winston Churchill, and Barak Obama reminded me again this week of the power of the bully pulpit. And that’s what’s been afforded to me today. And not many parents have the chance to sit up and address a group like you and tell you what’s on our heart. And I am grateful to Lee for putting something together that would allow me to do this. I want to say, there are some things that Griffin Rodger’s said that really resonated with me. There was a chart that showed the spikes, the highs and lows of a child’s blood sugars over 200 days. And I thought – you know, what you really want to start looking at is what’s going on in a diabetic child’s life and put the parents’ blood pressure right next to the child’s blood sugar numbers and then you will see the family reaction to high and low blood sugars. Bad blood sugars have a connotation to the child –- you did something wrong, or to the parent –- you did something wrong. We’ve gotten away from that, but the guilt about high blood sugars is enormous and is really still prevalent. I have five children, I thought it was going to get easier when my children got older. I’m finding out the hard way it’s harder now than it ever was and my youngest is 23. The things that come out of people’s mouths, unintentionally are hurtful and the hurt that impacts the lives of our children with diabetes can be unimaginable. One of our closest friends has a son with diabetes, who fell in love, the love of his life – he wanted to marry her, they were totally in love. Her parents said you can’t marry him, he’s damaged goods. How do you comfort somebody after that? You can’t! I’m a lawyer, so I can see the other side as well. I understand in a world where marriages fail 60% of the time, do you want your child to take on a life partner with diabetes? But, my goodness, the hurt on the other side is unfathomable.

The chart that showed all the co-morbid factors of concern to diabetics were depression, anxiety, eating disorders. I suggest to you that the heart of every one of those is depression. It starts with depression and it leads into all this other garbage. And depression, not only kills the individual, it can kill families. And we need to address that and we need to cut to it early.

So now I have something to tell you about the one thing that I am truly an expert on, and that is “My Story”. And that’s the one thing that I think I am an expert on and I hope you get something from it today. Kathy and I were married in February of 1980 and before the year was out, we were blessed with the birth of our first child, Cory. But we were just getting started – in our family we like to call the eighties the “decade of conception”. And before it was out, we were blessed with the birth of our fifth child, Kelsey, on our 10th anniversary. What a wonderful life we had. Shortly after starting kindergarten, we noticed that Cory was unusually tired and excessively thirsty. We had no idea what that meant, but we soon found out. There was no one in either of our families that had ever had diabetes. So we spent a few days in the hospital in Washington, D.C., and they were just a blur. There was so much to learn, so much worry, so much fear of the unknown, but yet an incredible amount of relief that came from what one small injection of insulin did to alleviate her symptoms. Within a few days, we went home and we put away our fears about the future and we got on with our wonderful life. What else can you do? But 1997, we had been living with diabetes for 12 years. We had learned to live with a child who had diabetes. And that worked just fine until one day seven-year-old Kelsey came home from Girl Scout camp unusually tired and excessively thirsty. We did a blood test, we said a prayer. It was Type I diabetes. Kathy and I were inwardly devastated. And that first night, 17-year-old Cory, who had entered her senior year, and as miserable a young lady as you could possibly imagine, so ready to be out of the house, so ready to go to college – came to us and said, Kelsey is going to sleep with me tonight and I am going to take care of her and don’t you worry about a thing. And she did. It’s times like this that make or break a lot of families. And the bond between my two girls was made forever strong by that very special, horrible, horrible evening. Well now we silently rationalize that well, well the girls got it, but at least the boys have been spared. So we caught our breath, we put our fears to the side, and we got on with our wonderful life. What else can you do? And that was until 1998, when 13-year-old Nick became excessively thirsty and unusually tired. We did a test, confirmed our fears, we cried, then we went out to dinner because by now we were getting pretty good at this diabetes stuff. And there at the restaurant, with the encouragement of his sisters, Nick gave himself his own blood test and his own injection that very first day. That’s courage. And this time we thought, well, the girls got it and our baby boy got it, but somehow Matt and Ben have been spared. So once again, we put aside our fears about the future and we got on with our wonderful life. What else can you do? That was until 2001, when 17-yearold Ben became unusually tired and excessively thirsty. Kathy asked Ben to do a blood test, the numbers came up, and they knew and they cried. And when we all got home that afternoon, we all cried, and we cried and we cried. What I remember most from this time was the anger that took up residence in my house. We were all mad and for really good reasons. Ben’s anger has not dissipated to this day. And even I, the consummate rationalizer, was out of excuses. So what do you do? You put away your fear about the future, and you get on with your life. What else can you do? Well now, we have been living with diabetes for 28 years. Collectively, nearly 70 years. We’ve been fortunate that we’re a strong family and we are there for each other. But that does not mean we’re not scared, both inside and out. Imagine for just a minute, that this is your family. 35

This slide shows my family in 1990. That’s my daughter Cory diagnosed at age five. That’s my daughter Kelsey at age seven who, in that picture, went to school a week later and they said how was your summer, Kelsey? And Kelsey said fine. I got glasses, braces, and diabetes. How was yours? This is my son, Nick, who got it at 13. My son Ben, at 17. And this is all of them back to that day, sitting in the hot tub and they went forward. And now we’ll go from here. Imagine for just a moment that this is your family. That they are starting to disappear right before your very eyes. We know more than we ever wanted to know about hypertension, retinopathy, celiac, thyroid function, renal failure, transplant options – the list is growing and it never shrinks. This is only for Cory and Kelsey. They’ve had it the longest. The thought of the long-term possibilities for everyone is terrifying. And mostly all we do is keep this bottled up inside and try to take things one day at a time. But we choose to celebrate life in my family. And we look forward to its promise and we face all of its challenges square on. A beautiful bride, and wonderful supportive husband have started a new life together this summer – a life with enormous challenges, but it doesn’t get any better than this. After more than 125,000 blood tests and 75,000 injections, you might be tempted to consider us somewhat experts in the daily management of juvenile diabetes. But we still need all the help and all the encouragement we can get. Diabetes never sleeps. Diabetes never quits. And as my daughter reminded me, diabetes never goes into remission. It’s always with you. When your child has diabetes, you have diabetes. And for many years, it’s more yours than theirs. But it’s always yours, even once you’ve handed it over. You spend decades constantly wondering what their blood sugar level is, how much insulin they took, how and what they are going to eat next, what’s their activity level, what they just ate, and when they’re going to eat next. Do they have their testing kit and supplies with them? And are they getting sick? Oh crap, did I reverse the dosages – your worst nightmare – I’ve done it more than once. The pressure that diabetes places upon parents and child, peer-to-peer, husband and wife are enormous and rarely verbalized or addressed until some really bad decisions, events, or habits surface. They all start with depression, but they seem to end up with eating disorders, alcoholism, drug abuse, estrangement, divorce, and far too often, suicide. This stuff is far too common, it’s far too predictable, and it’s time it stopped, and it must be addressed. There currently is no cure for juvenile diabetes, I get it. But there will be, there must be! I refuse to accept anything short of this for my children because I’m their dad. But until that time, as you know, the best defense is education and a good attitude and good managed care. So what do I tell my children? I tell them the one thing that no one can take from you is the way you choose to respond to what life deals to you. The last of one’s freedom is to choose your attitude in any given circumstance. That’s great advice, I forget it all the time, but it’s great advice. I’d like to conclude my thoughts with just a short prayer. I’m thankful for each memory that family and friends have given me. I’m thankful for the strength to meet the challenges that come with life with diabetes. I’m thankful for the kindness and compassion of you, who have taken up the call of battle against this terrible, terrible disease. I pray your resolve is firm and your commitment is strengthened by this conference in the next few days. I’m so thankful for Lee Ducat and all the leadership and support she has given me and countless families just like mine in our daily and life-long struggle with juvenile diabetes. This morning, I have so much to be thankful for. God bless you. Thank you very much. 36

Ducat:

Tony travels all over the United States endlessly with his family’s story, raising funds for diabetes research. He has contributed incredibly to the funds for diabetes research, which in effect may someday cure diabetes. Thank you Tony. And now may I introduce Howard Nathan. Howard has a little bit of a different story.

Nathan:

Thanks Lee, and thank you panel. I’m thinking, as you talk about – as we all do – about our own lives and how it affects us. I’m thinking about our lives and how diabetes affects us. When I think about diabetes three words: fear, determination, and never giving up. I’m going to tell you a story about my pathway and my footsteps and my family. On this slide I am saying goodbye to my brother when he was going on his patrol trip to Washington, D.C. My dad’s holding me, I’m about age three. My dad was diabetic, began taking insulin in 1936. I remember very distinctly my dad boiling his glass syringe and needles every morning. I also remember him having his first heart attack when he was 35, and four later he died at the age of 43. My mother, at the age of 41, had three kids and didn’t have a job and she was a widow. She was determined to survive and she was a survivor. A year later, she discovered she was diabetic and started taking insulin and she also discovered she had cancer in the same year and had a mastectomy and hysterectomy at the age of 42. So, there was a lot happening in the life of a little nine-year-old kid, scared about parents maybe not being around. So I was determined, I played athletics and did all the things that other kids have done. At the age of 15, suddenly I was excessively thirsty. My mother was smart enough to know that symptom of diabetes. She took me to the doctor, and of course, I was diagnosed with diabetes. I was lucky because I couldn’t take the needles. I begged my physician to let me take a pill, to try it, it was brand new – it was called Diabatum. And it worked. My blood sugars actually returned to normal. And for more than 15 years, I was able to get through college, come here to Philadelphia, work at Wistar Institute, go to graduate school in Pittsburgh and study research, and then I went into public health. I was lucky enough to get a job. I begged five surgeons who ran a thing called “The Delaware Valley Transplant Program”. When they offered me a job, they said you have no experience, and I said, yeah, but I’ll work hard. I’ll work for free if you want me to. And these prestigious surgeons hired me when I was 24 years old. And then I never looked back. I never gave up. I dealt with diabetes in my own way and I kept going. I was determined to look at my life and my career a little bit differently because of the way I grew up with diabetes in the family. My two mentors, the transplant surgeons, Clyde Barker and Aaron Bannett, both are still alive – one is 90, one is 81. Clyde Barker is a diabetes researcher who experimented first with islet cells back in the 1970s. And then I met another mentor in 1980 who extended my concept of doing research with a group called NDRI, the National Disease Research Interchange. We were the first site to get human tissue for diabetes research, including pancreas. So Lee taught me a lot about never giving up and making sure you never lose sight of your goals. I had a lot of different things happen to me in my career as we set out to try to save lives through organ transplantation. But most importantly, I never gave up. There’s a long waiting list of people waiting for transplants, whether it’s kidney, pancreas, liver, heart – all these people needed help and we wanted to make sure we built a team that led the nation in organ donation for transplant. And we continued to grow that program, so now more than 35,000 people have benefitted from transplantation with organs we provided. We built a 37

35,000 people have benefitted from transplantation with organs we provided. We built a permanent home at Third and Callowhill, so that we could do research and testing to make sure that organ transplants are safe and our goal is to continue to increase those numbers. My sister was diagnosed with diabetes at age 17. The picture that I’m showing was taken in 1988 when she discovered that she had liver failure. So my own sister was put on the transplant list for a liver transplant, 13 years after I started my job. And she got a transplant! This picture is of my brother, my mom, and I at her 70th birthday. There is something wonderful of being driven to save lives when that drive helps your own family. But more than that, I’ve met thousands and thousands of patients over the years, even though I’m on the donation side, the transplant patients taught me a lot about life, about continuing to live, even with my taking tests five times a day and taking insulin three or four times a day, as I still do, I’m not on the pump yet. Mark Schutta is my doctor and he is in the audience today. Over the years, we’ve taught a lot of people around the world. And I am grateful to my team, who helped me build this family house that helps other patients and families when they come to Philadelphia for transplant. We still have a challenge. There are 120,000 people on the waiting list, 6,500 in our region. And this is a picture of our team. I was the third employee of Gift of Life; there are now 200 employees just in Philadelphia, including my team – and Rick and Jan are in the audience. And last but not least, I want to recognize my wife. For the last 20 years, my wife has been very patient with me. This past weekend is an example; I wasn’t home all weekend going to different events. And Liz and her family helped dedicate part of the Family House, because her own niece, a four-year-old, died and was an organ donor. And we wanted to make sure that people recognize that it can happen to any family, and that it can give new life. Ducat:

Thank you. You might think that this panel was chosen for their worst case scenarios, that is not true. They are typical of the families with diabetes across the United States, and the world. And I hear from these families all the time, so you can take all of these people very seriously, who have poured out their hearts to you and told you very personal information about their own families. They all did great. Thank you.

Conference Workgroup Reports

WORKGROUP 1 The Integration of Medical and Mental Health Treatment for Type 1 Diabetes Patients and their Families

Chairman: Jill Weissberg-Benchell PhD, CDE Participants: Fran Cogen, MD, CDE, Eileen Gelick, Margaret Grey, DrPH, RN, FAA, Susan Bennett Johnson, PhD, Arthur Rubenstein, MBBCh, Mark Schutta, MD, Howard Wolpert, MD Summary of Workgroup 1 Discussions, Conclusions and Recommendations Submitted by Jill Weissberg-Benchell, Ph.D., CDE Workshop Chair The goal for workgroup 1 was to address the psychosocial issues relevant for children and adolescents with type 1 diabetes, and to make recommendations regarding how to improve the psychosocial support available to children and families. DEVELOPMENTAL CONSIDERATIONS

With respect to families with preschoolers, our team highlighted the following issues that a mental health provider should be familiar with and should offer anticipatory guidance to families about: Fear of Hypoglycemia, and Struggles with Eating (timing, amount, predictability in intake). – given the fact that preschooler’s appetites vary greatly from day to day, it is difficult to predict how much and when a child will want to eat. One consequence of this is an increased risk of low blood sugars. The fact that preschoolers are less able to communicate how they feel to their parents also plays a role in this increased risk as well as a role in increased parent anxiety. With respect to families with elementary age children, our team highlighted the following issues that a mental health provider should be familiar with and should offer anticipatory guidance to families about: Sharing the diagnosis with others, negotiating peer relationships, and preventing diabetes from interfering with daily activities. School-age children are beginning to expand their known-world and are also aware of how they are the same and different than their peers. In addition, this is the age where the concept of “fairness” is paramount, and diabetes is not fair. With respect to families with adolescents, our team highlighted the following issues that a mental health provider should be familiar with and should offer anticipatory guidance to families about: The increased influence of the peer group, the desire for independence while still needing supervision, the opportunities to engage in high risk behaviors, the increased risk for depressive symptoms, and the negative impact of family conflict. The rapid changes in adolescent physiology (hormones) and psychology (brain development) offer opportunities for both crisis and positive change. Teenagers are capable of engaging in good judgment and decision making, but that does not mean that they always engage in these skill sets. GUIDELINES

Our team pointed out that both ADA (American Diabetes Association) and ISPAD (International Society for Pediatric and Adolescent Diabetes) offer guidelines regarding the importance of psychosocial support embedded within a diabetes team. However, as far as we know, there are very few diabetes programs in the country that have fully-integrated mental health services. Some offer support only at diagnosis, some offer support only if families are already struggling, some offer support only during brief visits as part of diabetes clinic. 40

RECOMMENDATIONS

Our team offered a number of ideas regarding how to increase the availability of mental health services for families who have a child with diabetes. Some of these ideas are implementable immediately; others will take education, advocacy and systems changes. Immediately Implementable:

A. Psychosocial screening at diagnosis to help direct scarce resources to families that need them most. Assessment of the marital relationship, familyâ&#x20AC;&#x2122;s quality of life, communication and problemsolving skills, level of conflict, can all be easily assessed with validated questionnaires. B. Psychosocial screening annually that can include (based on developmental level) such areas as fear of hypoglycemia, parent stress, disordered eating behavior, depression. C. Set the stage for teamâ&#x20AC;&#x2122;s expectations regarding family management and also regarding psychosocial functioning immediately, at diagnosis. Examples include statement that two caregivers should attend every single outpatient follow up clinic every time; diabetes must be as equally managed by adult caregivers as is possible, children need ongoing support and encouragement and should never be blamed for out of range numbers, tight control matters, technology can be helpful. D. Provide psychosocially-focused workshops for families annually that focus on the unique developmental needs of children in specific stages of life (e.g. supporting your preschooler; thriving through elementary school years; preparing for the middle school years; surviving high school; and preparing for life after high school). Requires Education, Advocacy, and Systems Changes:

A. Insurance coverage for mental health services. Coverage for prevention services will be key (as opposed to coverage after a psychiatric diagnosis is made) B. Mandating mental health services as a requirement for obtaining and maintaining ADA certification C. Increasing the number of mental health professionals who are also Certified Diabetes Educators. D. Training programs specifically designed to train young professionals (nurses, psychologists, psychiatrists, social workers) in the interdisciplinary model where psychosocial care is an integrated part of over all diabetes care. Such programs can focus on both research and clinical training, as the most exceptional individuals are skilled at both. ACTION PLANS

Based on the above-listed discussions, conclusions and recommendations, our workgroup made the following recommendations regarding action plans: A. We recommend that key diabetes-specific stake holders, including ADA, ISPAD and JDRF work together to integrate the existing standards of care from each entity and offer a consensus statement regarding the need for the integration of mental health care into diabetes teams. B. We recommend that key stake holders from both the diabetes world and the mental health world (e.g. American Diabetes Association, the American Psychological Association) work together to advocate for improved collaboration and cross-training of providers, work together to advocate for funding/re imbursement for mental health services, and work together to develop the necessary training for mental health providers to understand the unique aspects of life with diabetes. C. ADA certified diabetes programs must have a fully integrated mental health program in order to become and/or remain certified. 41

D. We recommend that ADA and NIH as well as other stakeholders fund studies that assess different models for integrating psychological care into diabetes programs (e.g. telemedicine, on-line programs, primary prevention approaches, DKA prevention approaches, depression and eating disorder programs). The focus on psychosocial outcomes, metabolic outcomes and health care cost outcomes should all be included). E. We propose an intensive training model, sponsored by key stakeholders, for mental health providers that offers training in the key psychosocial issues for families living with diabetes, from both a developmental AND a family-systems perspective . F. We propose partnering with established mental health programs (e.g. United Health Services) to expand the accessibility of mental health services for individuals and families who would benefit from diabetes-trained providers within the community.

WORKGROUP II The Prioritization of Major Psychosocial Issues in a New Treatment Design Co-chairs: Marian Rewers MD, PhD, Kenneth S. Gorfinkle, PhD Participants: Lori Laffel, MD, MPH, Lee Peebles, Howard Wolpert, MD, M. Rubenstein, Tony Rogowski, Alyson Harder, Daniel Davidow, MD, Karen Johnson, Martin Schappell, Aaron Kowalski Our work group was tasked with addressing the needs of patients and caregivers in the care of diabetes, with a special focus on the period from late adolescence to adulthood. The work group was comprised of three distinct constituencies: Representing the private sector were medical professionals and hospital administrators whose focus is to run a large scale health system which provides quality care in a competitive health care market. Representing the patient/consumer point of view were active members of the JDRF and other community leaders whose lives are directly affected by diabetes and its care. The third group was comprised of medical and mental health professionals working within academic medical centers. A number of central themes emerged:

Participants representing both the private sector and patient advocates clearly articulated a necessity to revamp the way mental health services are reimbursed by insurance companies. Borrowing from commercial business models, the group strongly emphasized the need for identifying tangible outcomes by which to measure and evaluate treatment effectiveness. Outcomes included patient satisfaction, protection of patient earnings, health maintenance and quality of life. Mediating steps were identified towards these outcomes: •

Recognition of age-specific goals in the context of chronic disease and patients’ potential to ‘bounce forward’

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Preventive mental health visits at a prescribed frequency after diagnosis

•

Mental health intervention at key life-transition points, such as puberty, entry to college, marriage, pregnancy, and relocation.

•

Advocacy is needed to protect against academic and employment discrimination.

•

Involvement of the immediate family members of patients

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Education of primary and diabetes care providers

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Need for more outcomes research

Endocrinologists, nurses and mental health professionals were supportive of the above formulation, and then turned the focus on a need for diabetes treatment guidelines to better reflect the need for wellintegrated behavioral health during all phases of care. Specifically, the group described the enormous cost and health-saving potential of primary preventive behavioral intervention. Research needs to further quantify the cost/benefit of preventing avoidable DKA admissions and long- term complications. The group noted a gap in available mental health services for adults with diabetes in comparison to youth. Also noted was a significant gap in “diabetes literacy” among mental health professionals in the community at large. Medical professionals working in diabetes centers showed a strong consensus that mental health support for patients is best delivered on site, where the physicians, nurses and nutritionists have easy access to behavioral consultation. Close collaboration between diabetes specialists and behavioral scientists will serve to boost effectiveness of both. Behavioral and mental health professionals working within diabetes care centers can identify a taxonomy for Diabetes Distress, and can begin to set out treatment guidelines for supporting patients as they find their health and wellbeing put at risk. New onset trauma Honeymoon transition distress Parent/child or family conflict Fear of lows Fear of high blood sugar and of complications Separation anxiety in children Defensive hyperglycemia in older patients Diabetes-related disordered eating Diabetes burn-out Transition to emerging adulthood Sexuality and intimacy Pregnancy planning and management School/employment/social stress around DM Financial/insurance coverage challenges Cultural barriers to accessing care

This taxonomy can be used to identify gaps in patient care, to develop structured interventions to minimize harm to patients, to create training standards for mental health workers in diabetes care, and finally to develop an action plan: Develop a model for integrated care Train mental health professionals in DM care Conduct cost-effectiveness research on prevention Lobby congress for ACA support Raise public awareness

WORKGROUP III Model for Mental Health Screening and Intervention in Type 1 Patients and Families for Depression, Suicide, Drug Addiction and Eating Disorders Chairman: Georgeanna Klingensmith, MD Participants: Ann Goebel-Fabbri, PhD, Alan M. Jacobson, MD, Debra K. Osteen, Lou Philipson, MD, PhD, John Rolland, MD, MPH First Principle: All care and assessment should be ongoing and incorporated into a Program of Planned

Psycho-Behavioral Educational Anticipatory Guidance. Second Principle: Counseling and psycho-behavioral education is most optimally delivered by a trained

mental health professional. The professional should have experience in the management of diabetes or, at a minimum, experience in the care of serious chronic illness. Optimally the mental health professional should work in active collaboration with the diabetes team. At initial diagnosis or transfer to a new care setting: A patient and family assessment should be

done to determine their Strengths and Challenges based on prior experience and coping mechanisms which were successful and/or not helpful in other challenging situations. A complete behavioral family history is essential to optimal understanding of the strengths and risks of the patient and family. A behavioral family history from the spouse or partner is important in the adult patient. Initial counseling should be completed at diabetes diagnosis to normalize the feelings of grief, loss, fear and anger surrounding the diagnosis. Families and patients should also be educated on warning signs and symptoms of excessive or prolonged feelings that may be helped by additional advice or therapy. In addition, anticipatory counseling should focus on the expected behavioral challenges associated with diabetes care including needle anxiety, fear associated with insulin injections and self-blood glucose monitoring, frustration with blood glucose values, fear of hypoglycemia, and fear of complications. Within the initial 1-3 months after diagnosis: A repeat assessment to determine how the patient and

family are coping with the diagnosis of diabetes and if there are diabetes specific behavioral issues that should be addressed. In addition to overall adjustment to their new diabetes diagnosis, diabetes-specific issues may include needle anxiety or high and/or low blood glucose anxiety. These latter fears include fears of severe low blood glucose events and fears of death of the patient from both an acute low glucose event or from chronic high glucose levels resulting in long term complications. In addition to the extreme psychologic distress these anxieties cause, they are also major barriers to optimal diabetes management. Within 9-12 months of diabetes diagnosis: After the mechanical tasks of diabetes care and decisionmaking around self-management have been mastered, a scheduled visit for anticipatory counseling on additional challenges of living with diabetes is essential to help to address the difficulties of living with a chronic disease. This visit is to: â&#x20AC;˘

Increase awareness of how different family members may deal differently with both the day-to-day challenges of diabetes and the idea of the persistent presence of diabetes in the family.

â&#x20AC;˘

Review the importance of establishing/maintaining open, constructive communication between family members, including the patient, during childhood, adolescence and young adulthood.

â&#x20AC;˘

Educate patients and family as to the expected and unanticipated life events that will be challenges to diabetes management and may complicate family dynamics in unexpected ways due to the presence of diabetes.

•

Remind patients and families that these challenging times are important times to prospectively ask for how these events might be handled so diabetes care and family cohesiveness is least disrupted.

Ongoing Care: Routine visits with a behavioral specialist should occur at least annually and whenever

behavioral or psychological concerns arise. These visits are part of the on-going Program of Planned Psycho-Behavioral Educational Anticipatory Guidance. The purpose of these visits is to identify previously unrecognized psycho-behavioral issues or barriers to diabetes management and to provide prospective counseling regarding associated mental health issues might arise and behavioral challenges the patient and family may face based on age and diabetes duration.

There are social and demographic factors that have been associated with increased difficulty in managing diabetes. These might be considered alerts for more frequent behavioral assessments. These include: • • • • •

Children living in a single parent household History of social services involvement History of drug or alcohol abuse in the patient or a parent History of antisocial behavior resulting in arrest Financial insecurity as evidenced by lack of health insurance or government insurance

There are additional diabetes specific alerts to high risk for mental health disorders although there are also financial/societal causes of these signs. These include: • • • • • •

KA after the initial presentation Persistently elevated HbA1c (generally considered to be > 9%) Increased, persistent, or excessive low blood glucose levels Frequent missed glucose checks and/or insulin doses Unexpected weight change Missed diabetes care appointments

Regular screening for common behavioral and mental health concerns will allow for early identification of behavioral and mental health issues and should be done in a time efficient manner for both patient and medical staff. Conditions that should be screened for include: depression, anxiety including needle anxiety, fear of hypoglycemia, disordered eating including diabetes specific weight control behaviors, substance abuse/addiction, suicide and safety at home. There are also reports suggesting that screening for ADHD and executive functioning are helpful in individuals who are having difficulty with diabetes management.

Additional areas that may be beneficial to assess include DQoL and family QoL. Others might be shared diabetes responsibility? (Who is doing what?) List possible screening tools • • • • • • •

Children’s Depression Inventory (8-14 years) Beck Depression Inventory (14-) CED-D (BRIEF) executive skills in everyday situations http://www.phqscreeners.com/pdfs/08_PHQ-4/English.pdf PHQ4 is a 4 item screening tool for both depression and anxiety. I don’t know if validated for both Pedi and Adult. PHQ-9 has been validated in adults and children 45

Varney’s QOL scale is good, for parents and kids, but it’s long and hasn’t been used for screening. MSCOFF: Screening for eating disorder behavior modified for DM. Not yet published but will be coming out in DM Care as a letter to editor, I believe. 1) Do you make yourself Sick because you feel uncomfortably full? 2) Do you worry you have lost Control over how much you eat? 3) Have you recently lost more than 14 lbs (One stone) in a 3-month period? [Clearly, the authors are from the UK]. 4) Do you believe yourself to be Fat when others say you are too thin? 5) Would you say that Food dominates your life? Item number 5 replaced with: Do you ever take less insulin than you should?

Many screening tools need to be adapted for diabetes to provide meaningful information. The NIH Promis website has a number of validated and free questionnaires that might be considered. Not validated but potentially clinically meaningful: Do you take less insulin than you should? ■ Yes ■ No If yes, do you take less insulin because of: (Please check more than one if they apply) a) Weight concerns b) Worry about hypoglycemia c) Difficulty paying for insulin/diabetes supplies d) Busy schedule e) Not remembering to take it f) Not being organized Added by Alan Jacobson, MD – Psychiatrist:

There is value in using a simple and short three level assessment: 1. Generic hrqol measure <1-5 items>- allows for comparison across populations 2. Brief sxs survey- as a screening tool it need not be specific but have a high level sensitivity and utility to trigger further questions 3. Something that is diabetes oriented – like the PAIZD, but that is 16 items as I recall and may be too long. Garry Welch has done a lot of work with it but don’t know if he ever came up with a brief version.

How we address the more complex and very important issues of family, social context and strengths is important. My reference to the tool box comes from work we did years ago to develop material for diabetes care in primary care practices to be delivered by nurses and others in the practice.

WORKGROUP IV Potential Future Research Projects and Resources Needed to Test New Paradigm of Treatment Co-Chairmen - Ake Lernmark, MD, PhD, Paula Trief, PhD, Suzanne Bennett Johnson, PhD Participants: Lee Ducat, Robert Gabbay, MD, Michael Harris, PhD, Garry Welch, PhD BARRIERS TO INTEGRATED CARE

Limited reimbursement for psychologists, inappropriate CPT codes. Lack of control over clinic model and staffing- For ex., new funds are allocated to bring in more MDs to see patients, and not to provide behavioral health services. Incomplete integration of psychologists in diabetes teams. HIPAA- while not actually a barrier, since HIPAA allows communication between health care providers, it is often viewed as a barrier and used as a reason to not provide integrated care Poor communication between medical and psychosocial care providers Conclusions: While barriers exist, there is a need for innovative approaches, perhaps utilizing new technologies, to provide services that will lead to decreased distress and improved quality of life. This could include peer-to-peer interventions, use of social media, and the psychologist as “leader” to develop and implement varying approaches and develop new paradigms to change existing care mechanisms.

Potential funders: NIH, ADA, JDRF, UHS, Kaiser Permanente, PCORI, Industry INTEGRATED CARE RESEARCH 1. Goal: To

test integrated care team approaches (through RCTs) to improve mental health outcomes, medical outcomes (including adherence), cost and patient satisfaction of patients with T1D. We need to establish, through controlled clinical studies, that integrated care improves quality of life, patient satisfaction, select medical outcomes, as well as provides financial benefits.

behavioral outcomes (e.g., quality of life, patient satisfaction and prevention of depression) and behavioral mediators (e.g., self-efficacy), not just A1c/medical outcomes. The focus should be on “what patients care about.” Also, we should measure changes in healthcare costs related to behavioral interventions to demonstrate potential cost offset, though we shouldn’t focus on this since most medical outcomes are not held to that standard if they lead to better outcomes.

2. Should measure:

Need more effective approaches to early detection and treatments for depression and other psychiatric disorders (e.g. eating disorders) in T1D patients.

Need more studies of psychiatric patients who also have T1D, with valid, reliable and standardized measures. The few studies we have focus on, for ex., T1D patients who also have depression, but we should also look at depressed patients who also have T1D. These may not be the same patients. Longitudinal studies are needed to determine to what extent integrated care team approaches prevents depression and suicide.

Integrated care research studies should be a focus at national meetings, e.g. ADA, Endocrine Society. in identifying the key psychosocial issues to study, in providing education on the importance of behavioral/psychosocial issues in diabetes outcomes, and in funding true translational research.

6. ADA should be a leader

should increase their funding for integrated care and behavioral research so that it is a larger percentage of its grant portfolio. Trans-NIH approaches are needed to support major outcome investigations of the role of integrated team approaches in diabetes care.

7. NIH

8. Potential studies identified by the workgroup:

a. Follow newly diagnosed T1D patients longitudinally. Provide an integrated care team intervention and test whether the intervention prevents poor quality of life and risk of depression and has a beneficial effect on medical outcomes. b. Examine how much integrated care costs and how much it saves in the long run. c. Focus on patients who are high utilizers of medical services (e.g., those who have had frequent hospitalizations for DKA) and identify other vulnerable subgroups to develop an intervention unique to them (vs. intervention for all T1D patients to decrease their distress) d. Develop interventions that engage the family members, both to improve patient outcomes and to improve family membersâ&#x20AC;&#x2122; adaptation. e. Look at existing databases (e.g., EDIC) for potential data thatâ&#x20AC;&#x2122;s already been gathered to analyze with these questions in mind.

Final Reports Conference Recommendations and Summary Comments

A REVIEW OF “THE MENTAL HEALTH ISSUES OF DIABETES” CONFERENCE Co-Chairs of the Conference: Arthur Rubenstein, MBBCh; Louis H. Philipson, MD, Ph.D.; Barbara J. Anderson, Ph.D.; Lee Ducat Conference Summary Report by Barbara J. Anderson, PhD Abstract Individuals with type 1 diabetes are at increased risk for depression, anxiety, and eating disorder diagnoses. Persons with Type 1 diabetes are also at risk for subclinical levels of diabetes distress and anxiety. These mental health co-morbidities of diabetes are associated with poor adherence to treatment and poor glycemic control thus increasing the risk for serious short- and long-term physical complications, which can result in blindness, amputations, stroke, cognitive decline, decreased quality of life, as well as premature death. When mental health co-morbidities of diabetes are not diagnosed and treated, the financial cost to society and health care systems is catastrophic, and the human suffering that results is profound. This review summarizes state-of-the-art presentations and working group scholarly reviews from The Mental Health Issues in Diabetes Conference (October 7-8, 2013, Philadelphia, PA) which included stakeholders from the National Institutes of Health, the community of persons living with Type 1 diabetes and their families, diabetes consumer advocacy groups, the insurance industry, as well as psychologists, psychiatrists, endocrinologists, nurse practitioners, and educators who were all nationally- and internationally-recognized experts in Type 1 diabetes research and care. At this landmark conference current evidence for the incidence and the consequences of mental health problems in Type 1 diabetes was presented supporting the integration of mental health screening and mental health care into routine diabetes medical care. Strategies were also articulated for overcoming the barriers to identifying and treating mental health comorbidities as an integral part of medical care for people with Type 1 diabetes. The mission of The Mental Health Issues of Diabetes Conference (October 7-8, 2013, Philadelphia, PA) was to provide a scholarly as well as a patient- and family-informed review of the state of mental health care primarily for persons living with type 1 diabetes. The conference included stakeholders from the National Institutes of Health, the community of persons living with Type 1 diabetes and their families, diabetes consumer advocacy groups, the insurance industry, as well as psychologists, psychiatrists, endocrinologists, nurse practitioners, and educators who were internationally-recognized experts in Type 1 diabetes research and care (See the on-line conference agenda and speaker list at the following web address: (http://mhidglobal.org/october-2013-conference/). The conference provided an in-depth review of the mental health comorbidities of type 1 diabetes as well as evidence for the incidence and the consequences of mental health problems in Type 1 diabetes. There was consensus among scientists, clinicians, patients and family members that the mental health comorbidities of Type 1 diabetes are largely overlooked in our current system for the delivery of diabetes care. The scientists and the patients/families who spoke at The Mental Health Issues in Diabetes Conference supported the integration of mental health screening and mental health care into routine diabetes medical care and proposed strategies for overcoming the barriers to identifying and treating mental health conditions in persons with Type 1 diabetes. This review paper provides an overview of this landmark conference. Dr. Griffin Rodgers, Director of the NIDDK in his keynote address reported: “The incidence of type 1 diabetes is growing world-wide and doubling every 20 years… A complex balancing of behavioral tasks is required to achieve good glucose control and avoid hypoglycemia. The burden of living with type 1 diabetes is enormous. 50

There is limited data on the comorbid mental health conditions of diabetesâ&#x20AC;&#x201D;depression, anxiety, eating disorders, and ADHD. Adherence is impacted by cognitive and mental health factorsâ&#x20AC;?. Dr. Rodgers set the tone for the conference with his focus on the challenges in living with and managing diabetes and comorbid mental health problems. He pointed out that adherence to the multiple daily activities required of the complex diabetes treatment regimen is negatively impacted by mental health comorbidities. Poor adherence to diabetes treatment in the context of mental health comorbidities raises the risk for short-term and long-term devastating physical complications of type 1 diabetes. Dr. Rodgers concluded his keynote address with the following: NIDDK wants to get advice from the recommendations of this conference. The Mental Health Issues in Diabetes Conference provided an opportunity to review the scientific evidence on mental health issues in diabetes as well as to listen to the personal stories of individuals living with type 1 diabetes and the voices of their family members. Across all of the stakeholders at the conference there was consensus that because of the devastating consequences of type 1 diabetes and comorbid depression, anxiety and eating disorders, mental health care must be an integrated part of traditional diabetes medical care.

BRIEF OVERVIEW OF DATA ON THE MENTAL HEALTH COMORBIDITIES OF TYPE1 DIABETES Major Depression

The most serious mental health co-morbidity of diabetes is major depressive disorder. While the psychiatric condition of major depressive disorder affects 6.7% of U.S. adults > 18 years, major depression is twice as likely to be diagnosed in U.S. adults with diabetes. A recent meta-analysis reported that rates of depression are higher in youth with Type 1 diabetes compared to nondiabetic controls, though the differences are not as large as reported by older studies. Older adolescents transitioning to young adulthood and young adults with Type 1 diabetes are especially at-risk for poor physical and mental health outcomes and premature mortality. Anxiety Disorders

Increased anxiety in persons with Type 1 diabetes and Type 2 diabetes has been reported at diagnosis, and at the onset diabetes complications. Anxiety disorders complicate living with diabetes and its management in at least 3 ways: 1.) Serious anxiety disorders largely overlap with the symptoms of hypoglycemia, making it difficult for the person with diabetes to differentiate between feelings of anxiety and the symptoms of low blood sugars which require immediate treatment; 2.) Pre-existing anxiety about injections or blood draws may heighten into severe anxiety or a panic disorder when a person is diagnosed with diabetes; and 3.) Fear of hypoglycemia, the most common source of severe anxiety for persons with diabetes, can drive some patients to maintain blood glucose levels above recommended target levels, putting them at-risk for complications of diabetes. Parents of children with type 1 diabetes are also at high risk for severe fear of hypoglycemia. Eating Disorders

Females with Type 1 diabetes are 2.4 times more at risk for developing an eating disorder and 1.9 times more at risk for developing sub-clinical eating disorders than women without diabetes. Less is known about eating disorders in boys and men with diabetes. Disturbed eating behaviors in adolescent and 51

adult women with Type 1 diabetes include binge eating and caloric purging through insulin restriction. Moreover disordered eating behaviors persist and worsen over time. Women with Type 1 diabetes and eating disorders have poorer glycemic control, with higher rates of hospitalizations and retinopathy, neuropathy and premature death compared with similarly-aged women with Type 1 diabetes without eating disorders. Diabetes Distress

Mental health providers and behavioral scientists working in Type 1 diabetes research and care have identified another serious mental health comorbidity of Type 1 diabetes, diabetes distress, which is different from major depressive disorder or an anxiety disorder. According to the developers of the Diabetes Distress Screening Instrument, diabetes distress is defined as “distress linked specifically to diabetes and its management.” Fisher and colleagues identified 4 areas of disease-related distress: emotional burden (feeling overwhelmed by diabetes), physician-related distress (worries about access, trust, and care), regimen-related distress (concerns about diet, physical activity, medications), and interpersonal distress (not receiving understanding and appropriate support from others”. Research has documented that diabetes l distress in individuals with Type 1 diabetes occurs much more frequently than major depression and is associated with poor adherence to treatment, poor glycemic control, higher rates of diabetes complications, and impaired quality of life. Therefore in addition to the traditional mental health comorbidities of diabetes— depression, anxiety disorders and eating disorders— diabetes distress represents a significant behavioral health comorbidity of diabetes. Because of the daily demand for self-management behaviors, the concept of behavioral health is especially appropriate when considering the psychological aspects of Type 1 diabetes. In 1979 behavioral health was defined as ‘promoting a philosophy of health that stresses individual responsibility in the…maintenance of health and the prevention of illness and dysfunction by a variety of self-initiated individual or shared activities’. Mental/behavioral health challenges confront persons with Type 1 diabetes and families, irrespective of age, educational level, or socioeconomic status. These behavioral/mental health challenges are associated with poor adherence to treatment and poor glycemic control, thus increasing the risk for the serious short- and long-term physical complications of poorly-controlled Type 1 diabetes.. At The Mental Health Issues of Diabetes Conference parents of children with Type 1 diabetes spoke to the family’s diabetes distress. In the current era, there are tremendous opportunities to improve glycemic control with modern intensive management tools such as small programmable insulin pumps and Continuous Glucose Monitoring Systems (CGMS). However even with these new tools there continue to be significant psychosocial burdens that confront the person and family living with Type 1 diabetes. The threat of serious low blood glucose episodes and “parental fear of hypoglycemia” continue to be a constant burden for families living with Type 1 diabetes. Hypoglycemia unawareness, in which the person with diabetes can no longer detect the early warning symptoms of impending hypoglycemia, can occur at any age. While new diabetes management technologies certainly can help manage blood glucose levels, they do not eliminate blood glucose fluctuations. Moreover, increasingly neurological and neuropsychological evidence documents out of range blood glucose levels as well as blood glucose fluctuations impact the brain and cognition of both youth and adults with Type 1 diabetes.

CONFERENCE WORKGROUP RECOMMENDATIONS The document Standards of Medical Care in Diabetes –2014 (25) published by the American Diabetes Association suggests: “It is reasonable to include assessment of the patient’s psychological and social situation as an ongoing part of the medical management of diabetes.” “Routinely screen for psychosocial problems such as depression and diabetes-related distress, anxiety, eating disorders, and cognitive impairment” These 2014 Standards of Medical Care also recommend: “People with diabetes should receive medical care from a team that may include physicians, nurse practitioners, physician’s assistants, nurses, dietitians, pharmacists and mental health professionals with expertise in diabetes…[to support] this collaborative and integrated team approach.” (pg. S21). A wide gap still exists between these standards of care and the reality of diabetes care delivery, especially in pediatric diabetes clinics in 2014 in the United States. To address how the gap between current diabetes care and diabetes care in which mental health screening and treatment are integrated into medical care, four scholarly working groups were formed on the second day of the Mental Health Issues in Diabetes Conference led by internationally- recognized scientists and clinicians in the area of Type 1 diabetes research and clinical care (See the conference web address for a listing of the members of each working group:http://mhidglobal.org/october-2013-conference. Each workgroup was comprised of three distinct stakeholder groups: private sector medical professionals and hospital administrators; patient/family /consumer perspectives; and medical and mental health care professionals working in academic medical centers. Workgroup I The first workgroup, chaired by Jill Weissberg-Benchell, Ph.D., CDE, addressed two questions: 1.)

What are the major mental/behavioral health issues of children and adolescents (0-18 years) with Type 1 diabetes and their families which need to be an integrated part of diabetes care?, and

2.)

How can psychosocial support available to children, adolescents, and families living with type 1 diabetes be improved? The key mental and behavioral health issues for youth withType 1 diabetes must be addressed within a developmental framework. For parents of children with Type 1 diabetes under the age of 6 years, coping with the fear of hypo glycemia and with feeding struggles are the major mental/behavioral health issues. For elementary school-age children major issues for the child and family include sharing the diagnosis of Type 1 diabetes with others, making a good adjustment to school, maintaining positive peer relationships, and preventing Type 1 diabetes from interfering with daily activities. The primary behavioral health issues facing adolescents with Type 1 diabetes and their families are balancing the desire for independence with the continuing need for parental support and supervision with type 1 diabetes management. Whereas existing guidelines of the International Society for Pediatric and Adolescent Diabetes (ISPAD) call for integrating mental health screening and services into routine diabetes care, these practices are not widely implemented across pediatric diabetes clinics in the U.S In contrast to adult primary care settings in which models of collaborative care for depression and diabetes, have been extensively implemented and evaluated, integrated, collaborative depression care has not yet been implemented in pediatric diabetes care. 53

Mental health screening should occur for youth and family at diagnosis and annually and those screening in the at-risk range referred to evidence based treatments. Multi-disciplinary workshops should be offered as part of routine pediatric diabetes care focused on developmental needs of children and families at specific stages of child and adolescent development. Workgroup II The second workgroup, co-chaired by Marian Rewers, MD PhD and Kenneth Gorfinkle, PhD addressed the major mental and behavioral health needs of patients and caregivers from late adolescence to adulthood as an integrated part of diabetes care. Workgroup 2 recommended: Preventive mental health visits at a prescribed frequency after diagnosis of Type 1 diabetes Mental health intervention at key life-transition points for adults, such as entry to college, marriage, pregnancy, and relocation. Age-specific goals in the context of diabetes treatment are critical to facilitate adult patients’ potential to ‘bounce forward’. The involvement of immediate family members is critical in the care of adult patients with Type 1 diabetes. Diabetes-specific adult issues such as family conflict, fear of hypoglycemia and of hyperglycemia, sexuality and intimacy, pregnancy planning and management, and financial/insurance coverage must be addressed at regular diabetes clinic visits to promote optimal mental and physical health outcomes in adults with Type 1 diabetes. Insurance companies must revamp how mental health services are reimbursed. Mental health support for adult patients is best delivered on-site, in order for physicians, nurses, and nutritionists to have access to behavioral consultation. There is a significant lack of mental health professionals who are knowledgeable about the mental health issues of persons with diabetes, both, in medical centers as well as in the community. There is a critical need for more cost-effectiveness and outcome studies of integrated models of care. Workgroup III The third workgroup chaired by Georgeanna Klingensmith, MD focused on a model for screening for mental health comorbidities of Type 1 diabetes such as depression, suicide, drug addiction, as well as anxiety and eating disorders. This workgroup advocated that Screening for children, adolescents, and adults with type 1 diabetes should be ongoing and incorporated into a program of “Anticipatory Guidance”. Screening and follow-up referral for evidence-based treatments are optimally delivered by a trained mental health professional with experience in the management of diabetes, or at a minimum, experience in the care of serious chronic illness. The mental health professional should work in active collaboration with the diabetes team to insure that patients screened to be at-risk are referred for evidence-based therapies. As stated in a recent editorial in the Journal of Adolescent Health “screening and diagnosis [for mental health problems] are only valuable if they lead to further interactions with the mental health system, either to confirm where there is a problem or to deliver care… And at each step in care, providers need to integrate evidencebased engagement interventions into real world outpatient adolescent health care (p. 1-2) ” 54

Mental health screening should be conducted at diagnosis or following a transfer to a new care setting in order to determine strengths and risks based on prior experience and coping mechanisms which were successful and/or not helpful in prior challenging situations for the child/family. The screening focus should be:

1.) To normalize feelings of grief and loss surrounding the diagnosis, and 2.) To screen for needle anxiety and anxiety around blood glucose (BG) monitoring, 3.) To assess for pre-existing learning or behavior disorders in youth diagnosed with Type 1 diabetes. 4.) Within the initial 1-3 months after diagnosis, assessment done at diagnosis should be repeated, to assess for anxieties about high and low BG, because extreme psychological distress due to fear of high and/or low BG is a major barrier to optimal Type 1 diabetes management. 5.) Within 3-12 months of diagnosis, after the mechanical tasks of Type 1 diabetes are mastered, the person with type 1 diabetes should have a scheduled visit for anticipatory counseling focused on mental health challenges for family members living with a person with Type 1 diabetes such as different coping styles by different family members; the importance of positive communication between patients and family members ; anticipation that major life events will challenge Type 1 diabetes management. Based on empirical evidence, it is important to screen for mental health risk factors in the following situations: Any episodes of diabetic ketoacidosis after the initial presentation at diagnosis Persistently elevated HbA1c (generally considered to be > 8%) Frequently missed glucose checks and/or insulin doses Unexpected weight change A pattern of frequently missed diabetes care appointments. Workgroup IV The fourth work group co-chaired by Ake Lernmark MD, PhD, Suzanne Bennett Johnson, PhD and Paula Trief, PhD focused on future research projects and resources that will be needed to assess paradigms of care for persons with Type 1 diabetes in which mental and physical health care are both priorities. This workgroup recommended

Research designed to assess the efficacy of integrated care should be conducted in rigorous randomized controlled trials which assess mental health outcomes, cost-effectiveness, quality of life, and patient satisfaction. It will be important to carry out this research with newly diagnosed patients to assess if an integrated care approach prevents poor quality of life, lowers the risk of depression and/or has a beneficial effect on medical outcomes. Research is needed that examines if the cost of integrated care for pediatric and adult patients with Type 1 diabetes has long-term savings. Studies should focus on patients who are high utilizers of medical services and other vulnerable subgroups to develop interventions tailored to unique patient subgroups. 55

Workgroup IV recommended (continued)

An increase in NIH funding for integrated care using a trans-NIH approach to support major outcome investigations of the impact of integrated care on patient outcomes. Integrated care research studies should be the focus at national scientific and clinical meetings (e.g., American Diabetes Association, Endocrine Society, and Society for Behavioral Medicine). Organizations and groups such as the American Diabetes Association, JDRF, NIDDK-sponsored Diabetes Research Centers and Centers for Diabetes Translation Research should be national leaders in identifying key mental health issues central to integrated care and fund true translational research to evaluate the efficacy and effectiveness of integrated care for adults and youth with type 1 diabetes.

Recommendations/Conclusions

When these workgroups called for improving mental health care for people with diabetes, the recommendations were for both primary prevention and secondary prevention. Primary prevention efforts aim to prevent mental health problems in people with diabetes, by routine mental health screening, from diagnosis and at regular follow-up intervals. Secondary prevention approaches refer to the rapid referral for evidence-based mental health treatments for those individuals with diabetes who screen in the at-risk level (elevated symptoms, not reaching clinical threshold). The NIDDK Strategic Report, Advances and Emerging Opportunities in Diabetes Research: A Strategic Planning Report of the Diabetes Mellitus Interagency Coordinating Committee. NIDDK also called for changes in the delivery of diabetes clinical care and recognized the importance of mental health issues in diabetes: “The mechanisms that link diabetes and psychiatric disorders and treatments are not well understood. Novel strategies [are needed] for diabetes screening and treatment in people with mental illness.” “In addition to the eye, nerve, and kidney problems specific to diabetes, people with diabetes…are at increased risk of depression, and endure reduced quality of life and substantially increased personal medical expenses.” The development of individualized approaches to diabetes clinical care would optimize the quality of life and health outcomes for all, including those in groups that have particular challenges with daily diabetes management…” “A common, practical, and time efficient set of participant-centered measures is needed [including] psychosocial factors such as self-efficacy and diabetes distress.” “Determining the optimal systems of care, both within and outside of the traditional health care system, as well as developing strategies to systematically improve the quality of diabetes care, are critical to the successful translation of diabetes research findings throughout the Nation”.

CONFERENCE WORKGROUP SUMMARY RECOMMENDATIONS

The diagnosis of Type 1 diabetes increases the risk by two to three fold for co-morbid mental health conditions; depression, anxiety disorders and eating disorders in particular. When mental health comorbidities of diabetes are not diagnosed and treated in the individual with Type 1 diabetes, the financial cost to society and health care systems is catastrophic, and the individual and family suffering that results is even more severe. In summary, societal and human costs of untreated mental health comorbidities of Type 1 diabetes provide an evidence base to support a paradigm of care for persons with Type 1 diabetes and their families in which both medical care and mental health care are given priority. Widespread transition to an integrated model of diabetes care will require bold and sustained leadership and partnerships among consumer organizations, professional training and education programs; insurance companies; professional scientific societies; hospital organizations; and funding agencies in order to build, staff and evaluate different care models to demonstrate that integrated care is cost effective as it promotes optimal health and quality of life outcomes for individuals and families living with Type 1 diabetes. WORKGROUP I Jill Weissberg-Benchell, PhD, CDE chaired Workgroup I and addressed “The Integration of Medical and Mental Health Treatment for Type 1 Diabetes Patients and their Families,”. Workgroup participants were Fran Cogen, MD, CDE, Susan Bennett Johnson, PhD, Eileen Gelick, JDRF, Margaret Grey, DrPH, RN, FAA, Mark Schutta, MD, Howard Wolpert, MD. and Arthur Rubenstein, MBBCh. RECOMMENDATIONS

Psychosocial screening at diagnosis to help direct scare resources to families that need them most. Assessment of the marital relationship, family’s quality of life, communication and problem-solving skills, level of conflict, can all be easily assessed with validated questionnaires. Psychosocial screening annually that can include (based on developmental level) such areas as fear of hypoglycemia, parent stress, disordered eating behavior, depression. Set the stage for team’s expectations regarding family management and also regarding for team’s expectations regarding family management and also regarding psychosocial functioning immediately, at diagnosis. Examples include statement that two caregivers should attend every single outpatient follow up clinic every time; diabetes must be as equally managed by adult caregivers as is possible, children need ongoing support and encouragement and should never be blamed for out of range numbers, tight control matters, technology can be helpful. Provide psychosocially-focused workshops for families annually that focus on the unique developmental needs of children in specific stages of life (e.g. supporting your preschooler; thriving through elementary school years; preparing for the middle school years; surviving high school; and preparing for life after high school). 57

Requires Education, Advocacy, and Systems Changes

1. Insurance coverage needs to be provided for mental health services. Coverage for prevention services for mental health issues will be key (as opposed to coverage after a psychiatric diagnosis is made) 2. Mandating mental health services as a requirement for obtaining and maintaining ADA certification 3. Increasing the number of mental health professionals who are also Certified Diabetes Educators. 4. Training programs specifically designed to train young professionals (nurses, psychologists, psychiatrists, social workers) in the interdisciplinary model where psychosocial care is an integrated part of overall diabetes care. Such programs can focus on both research and clinical training, as the most exceptional individuals are skilled at both. ACTION PLANS

Based on the above-listed discussions and conclusions, our workgroup made the following recommendations regarding action plans: We recommend that key diabetes-specific stake holders, including ADA, ISPAD and JDRF work together to integrate the existing standards of care from each entity and offer a consensus statement regarding the need for the integration of mental health care into diabetes teams. We recommend that key stake holders from both the diabetes world and the mental health world (e.g. American Diabetes Association, the American Psychological Association) work together to advocate for improved collaboration and cross-training of providers, work together to advocate for funding/reimbursement for mental health services, and work together to develop the necessary training for mental health providers to understand the unique aspects of life with diabetes. ADA certified diabetes programs must have a fully integrated mental health program in order to become and/or remain certified. We recommend that ADA and NIH as well as other stakeholders fund studies that assess different models for integrating psychological care into diabetes programs (e.g. telemedicine, on-line programs, primary prevention approaches, DKA prevention approaches, depression and eating disorder programs). The focus on psychosocial outcomes, metabolic outcomes and health care cost outcomes should all be included). We propose an intensive training model, sponsored by key stakeholders, for mental health providers that offers training in the key psychosocial issues for families living with diabetes, from both a developmental AND a family-systems perspective . We propose partnering with established mental health programs (e.g. United Health Services) to expand the accessibility of mental health services for individuals and families who would benefit from diabetestrained providers within the community.

WORKGROUP II The second workgroup, co-chaired by Marian Rewers, MD, PhD and Kenneth Gorfinkle, PhD addressed the major mental and behavioral health needs of patients and caregivers from late adolescence to adulthood as an integrated part of diabetes care, “The Prioritization of Major Psychosocial Issues in a New Treatment Design”. Workgroup II participants were Barbara Anderson, PhD, Daniel N. Davidow, MD, Alan Delamater, PhD, Lori Laffel, MD, PhD, and Tony Rogowski, JDRF, Lee Peeples, Arthur Rubenstein, MBBCh, Alyson Harder, Karen Johnson, UHS, Martin Schappell, UHS, Aaron Kowalski.

RECOMMENDATIONS

Preventive mental health visits at a prescribed frequency after diagnosis of Type 1 diabetes Mental health intervention at key life-transition points for adults, such as entry to college, marriage, pregnancy, and relocation. Age specific goals in the context of diabetes treatment are critical to facilitate adult patients’ potential to “bounce forward”. The involvement of immediate family members is critical in the care of adult patients with Type 1 diabetes. Diabetes specific adult issues such as family conflict, fear of hypoglycemia and of hyerglycemia, sexuality and intimacy, pregnancy planning and management, and financial/insurance coverage must be addressed at regular diabetes clinic visits to promote optimal mental and physical health outcomes in adults with Type 1 diabetes Insurance companies must revamp how mental health services are reimbursed. Mental health support for adult patients is best delivered onsite, in order for physicians, nurses, and nutritionists to have access to behavioral consultation. There is a significant lack of mental health professionals who are knowledgeable about the mental health issues of persons with diabetes, both in medical centers as well as in the community.

WORKGROUP III

The third workgroup, chaired by Georgeanna Klingensmith, MD focused on a “Model for Screening for Mental Health Co-morbidities of Type 1 Diabetes such as; Depression, Suicide, Drug Addiction, as well as Anxiety and Eating Disorders”. Workgroup III participants were Ann Goebel-Fabbri, PhD, Alan M. Jacobson, MD, Debra K. Osteen, UHS, John Rolland, MD, MPH and Lou Philipson, MD, PhD. RECOMMENDATIONS

Screening for children, adolescents, and adults with Type 1 diabetes should be ongoing and incorporated into a program of “Anticipatory Guidance”. Screening and follow up referral for evidence based treatments are optimally delivered by a trained mental health professional with experience in the management of diabetes, or at a minimum, experience in the care of serious chronic illness. The mental health professional should work in active collaboration with the diabetes team to insure that patients screened to be at risk are referred for evidence based therapies. As stated in a recent editorial in the Journal of Adolescent Health “screening and diagnosis (for mental health problems) are only valuable if they lead to further interactions with the mental health system, either to confirm where there is a problem or to deliver care... And at each step in care, providers need to integrate evidence based engagement interventions into real world outpatient adolescent health care”. Mental health screening should be conducted at diagnosis or following a transfer to a new care setting in order to determine strengths and risks based on prior experience and coping mechanisms which were successful and/or not helpful in prior challenging situations for the child/family. Screening Focus

1. To normalize feelings of grief and loss surrounding the diagnosis, and 2. To screen for needle anxiety and anxiety around blood glucose (BG) monitoring. 3. To assess for pre-existing learning or behavior disorders in youth diagnosed with Type 1 diabetes. 4. Within the initial one to three months after diagnosis, assessment done at diagnosis should be repeated to assess for anxieties about high and low BG, because extreme psychological distress due to fear of high and/or low BG is a major barrier to optimal Type 1 diabetes management. 5. Within three to 12 months of diagnosis, after the mechanical tasks of Type 1 diabetes are mastered, the person with Type 1 diabetes should have a scheduled visits for anticipatory counseling focused on mental health challenges for family members living with a person with Type 1 diabetes, such as different coping styles by different family members; the importance of positive communication between patients and family members; anticipation of major life events which challenge Type 1 diabetes managemen Based on empirical evidence, it is important to screen for mental health risk factors in the following situations

1. Any episodes of diabetic ketoacidosis after the initial presentation at diagnosis. 2. Persistently elevated HbA1c (generally considered to be >8%) 3. Frequently missed glucose checks and/or insulin doses 4. Unexpected weight change 5. A pattern of frequently missed diabetes care appointments 60

WORKGROUP IV

The fourth workgroup, co-chaired by Ake Lernmark, MD, PhD, Suzanne Bennett Johnson, PhD and Paula Trief, PhD focused on future research projects and resources that will be needed to assess paradigms of care for persons with Type 1 diabetes in which mental and physical healthcare are both priorities. â&#x20AC;&#x153;Potential Future Research Projects and Resources Needed to Test New Paradigm of Treatmentâ&#x20AC;?. Workgroup IV participants were Lee Ducat, Robert Gabbay, MD, Michael Harris, PhD, Marian Rewers, MD, PhD.

RECOMMENDATIONS

Research designed to assess the efficacy of integrated care should be conducted in rigorous randomized controlled trials which assess mental health outcomes, cost.effectiveness, quality of life, and patient satisfaction. It will be important to carry out this research with newly diagnosed patients to assess if an integrated care approach prevents poor quality of life, lowers the risk of depression and/or has a beneficial effect on medical outcomes. Research is needed that examines if the cost of integrated care for pediatric and adult patients with Type 1 diabetes has long-term savings. Studies should focus on patients who are high utilizers of medical services and other vulnerable subgroups to develop interventions tailored to unique patient subgroups. An increase in NIH funding for integrated care using a trans-NIH approach to support major outcomes investigations of the impact of integrated care on patient outcomes. Integrated care research studies should be the focus at national scientific and clinical meetings (e.g., American Diabetes Association, Endocrine Society, and Society for Behavioral Medicine). Organizations and groups such as the American Diabetes Association, JDRF, NIDDK sponsored Diabetes Research Centers and Centers for Diabetes Translation Research should be national leaders in identifying key mental health issues central to integrated care and fund true translational research to evaluate the efficacy and effectiveness of integrated care for adults and youth with Type 1 diabetes.

SUMMARY COMMENTS AND RECOMMENDATIONS Within the presentations there were none centering on the effects of insulin on mental health, nor the effects of high and low blood sugars on the brain and mental health. A main issue discussed was the impact of “self-care” over a lifetime. Type 1 diabetes needs to be accepted, internationally, as a disease with complicated treatment with a long list of chronic problems that Type 1 patients face every day. A bridge needs to be built from present care to new “Standards of Care” in order to address both medical and mental health chronic issues. There is an unmet need to address the mental health aspects resulting from the complications of diabetes and disabilities that occur over a lifetime with the disease. It is presumed that new standards of care in a team approach will lead to medical cost reductions for individuals and the federal government. 1.

The need to change public policy on diabetes treatment was underscored with the involvement ADA, JDRF and NIDDK. A.

There emerged a need for an international consensus on guidelines to Type 1 diabetes therapy and care

Procedures and systems need to be in place for support and development and training for “Integrated Care” professionals.

An advocacy initiative should be organized to lobby for reimbursement of mental health care for Type 1 patients.

A model needs to be designed for integrated care and preventive care addressing key transition points in a lifetime with Type 1 diabetes. Recommended “Standards of Care” need to be developed.

There should be an “Inter-Disciplinary Team” approach to Type 1 diabetes treatment.

Consensus of the conference emphasized that “Team Care” is generally not available and that treatment is less than adequate as offered throughout the United States.

Patients and their families need to be screened regularly by professionals, quarterly, if possible, annually at a minimum.

At present, there are no “Uniform Standards of Care” that have been adopted, implemented or enforced by the medical community which include mental health issues.

There needs to be a vehicle to inform and educate treating physicians and their teams on “Optimum Treatment” of Type 1 patients.

Training programs should be designed and implemented at major medical centers to train professionals in intensive and regular support of Type 1 patients and their families from the time of diagnosis and on through the stages of life.

Mental health screening needs to be ongoing as a part of treatment from diagnosis on.

10.

Training in “Inter-Disciplinary Care” needs to be ongoing for professionals who treat Type 1 patients.

11.

Tele-health webinars on standards of care and training for professionals need to be designed.

12.

The latest and newest in technology, cell phones, e-mail, websites, Skype, etc. need to be incorporated into communication and treatment of Type 1 patients.

13.

A partnership with pharma should be developed to implement mental health support for diabetes.

14.

Research grants need to be established to follow outcomes of treatment changes, the cost of care, metabolic outcomes and psycho-social changes.

15.

Funding for clinical research needs to be expanded, particularly to follow presently accepted standards of care, which should be compared to “Integrated Care”. Hospital admission data and DKA episodes can be utilized as measures, in addition to the presence of mental diagnosis.

16.

A series of conference calls should be scheduled with the conference co-chairs and work group chairmen.

17.

Education of professionals should be ongoing on a continuous basis in medical centers of the United States.

18.

Reimbursement for mental health treatment needs advocacy for focus, internationally.

19.

There needs to be a “white paper” on the mental health implications in diabetes care.

20.

Particular phases in life need to be identified when Type 1 patients may be more vulnerable to the need for mental health care.

21.

Screening for mental health problems should be a preventative, as well as a treatment focus.

22.

Of great importance is screening for depression, suicide, eating disorders, and drug and alcohol addiction.

CONCLUSIONS

Diabetes clinicians and researchers have long recognized that diabetes care often occurs along with other comorbid chronic physical conditions. The diagnosis of Type 1 diabetes increases the risk by 2-3 fold for comorbid mental health conditions: depression, anxiety disorders and eating disorders in particular. Mental health disorders affect more than 80 million Americans and disrupt their ability to cope with the activities of daily life. When psychiatric disorders are not treated in individuals without Type 1 diabetes, the individual, family, and societal costs are staggering â&#x20AC;&#x201D;disability, unemployment, family dysfunction, homelessness, substance abuse, incarceration and suicide. When mental health comorbidities of diabetes are not diagnosed and treated in the individual with Type 1 diabetes, the financial cost to society and health care systems is even more catastrophic, and the individual and family suffering that results is even more severe. In summary, societal and human costs of untreated mental health comorbidities of Type 1 diabetes provide an evidence base to support a paradigm of care for persons with Type 1 diabetes and their families in which both medical care and mental health care are given priority. Widespread transition to an integrated model of diabetes care will require bold and sustained leadership and partnerships among consumer organizations, professional training and education programs; insurance companies; professional scientific societies; hospital organizations; and funding agencies in order to build, staff, and evaluate different care models to demonstrate that integrated care is cost-effective as it promotes optimal health and quality of life outcomes for individuals and families living with Type 1 diabetes.

Acknowledgments

The Mental Health Issues of Diabetes: A National Conference, Philadelphia, PA, October 7-8, 2013 was supported primarily by UHS, Universal Health Services, Inc. and co-sponsored by JDRF, the Juvenile Diabetes Research Foundation and DFF, The Ducat Family Fund. Louis H. Philipson MD, PhD was partly funded by the Chicago Diabetes Research and Training Center P30 DK020595 and 1U01DK103153-01. Barbara J. Anderson, PhD was funded in part by a grant (R01DK095373) from the National Institute of Diabetes and Digestive and Kidney Diseases.