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The suggestions and information contained in this publication are generally consistent with the Clinical Practice Recommendations and other policies of the American Diabetes Association, but they do not represent the policy or position of the Association or any of its boards or committees. Reasonable steps have been taken to ensure the accuracy of the information presented. However, the American Diabetes Association cannot ensure the safety or efficacy of any product or service described in this publication. Individuals are advised to consult a physician or other appropriate health care professional before undertaking any diet or exercise program or taking any medication referred to in this publication. Professionals must use and apply their own professional judgment, experience, and training and should not rely solely on the information contained in this publication before prescribing any diet, exercise, or medication. The American Diabetes Association—its officers, directors, employees, volunteers, and members—assumes no responsibility or liability for personal or other injury, loss, or damage that may result from the suggestions or information in this publication.
The paper in this publication meets the requirements of the ANSI Standard Z39.48-1992 (permanence of paper).
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American Diabetes Association
1701 North Beauregard Street
Alexandria, Virginia 22311
DOI: 10.2337/9781580404396
Library of Congress Cataloging-in-Publication Data Young-Hyman, Deborah. Psychosocial care for people with diabetes / Deborah Young-Hyman. pages cm Includes bibliographical references and index. ISBN 978-1-58040-439-6 (alk. paper) 1. Diabetics--Services for--Unites States--Standards. 2. Diabetes--Social aspects. 3. Clinical health psychology--United States. 4. Diabetics--Rehabilitation--Psychological aspects. I. American Diabetes Association. II. Title. RA645.D5Y68 2012 362.1964’62--dc23 2012031896
eISBN: 978-1-58040-525-6
Contents
Mark Peyrot Deborah Young-Hyman
I. Behavioral Health
Mary de Groot, PhD
2. Eating Disorders and Disordered Eating Behavior
Deborah Young-Hyman, PhD, CDE
Linda Gonder-Frederick, PhD Daniel J. Cox, PhD, ABPP Harsimran Singh, PhD Jaclyn A. Shepard, PsyD
4. Cognitive Difficulties in Children with Type 1 Diabetes
Clarissa S. Holmes, PhD
5. Neurocognitive Dysfunction in Adults with Diabetes
Christopher M. Ryan, PhD
II. Self-Management
6. Assessment of Diabetes Knowledge, Self-Care Skills, and Self-Care Behaviors by Questionnaire
Garry Welch, PhD Sofija E. Zagarins, PhD
7. Adherence to Medical Regimens
Suzanne Bennett Johnson, PhD
8. Lifestyle Modification: Nutrition
Judith Wylie-Rosett, EdD, RD Linda M. Delahanty, MSRD
9. Lifestyle Modification: Exercise
David G. Marrero, PhD Paula M. Trief, PhD
III. Implementation of Treatment Technology
10. Subcutaneous Insulin Infusion or Insulin Pump Therapy
Jill Weissberg-Benchell, PhD, CDE
11. Psychosocial Considerations Regarding Adoption of Intensive Management
Lori Laffel, MD, MPH
Brooke A. Bailer, PhD Thomas A. Wadden, PhD Lucy F. Faulconbridge, PhD David B. Sarwer, PhD
IV. Life Course Issues
13. Psychosocial Adjustment to Diabetes and Critical Periods of Psychological Risk
Richard R. Rubin, PhD Mark Peyrot, PhD
14. Special Issues in Children and Adolescents
Tim Wysocki, PhD Barbara J. Anderson, PhD
15. Lifespan Development Issues for Adults
Paula M. Trief, PhD
16. Diabetes-Related Functional Impairment and Disability
Felicia Hill-Briggs, PhD
We would like to thank several people involved in the planning and development of this work who are not named authors. These include current and former American Diabetes Association (ADA) officers and staff, particularly Nathaniel Clark, as well as those behind the scenes who supported revisions to the ADA standards of care to include psychosocial issues and those at the ADA who facilitated the approval and financing of this volume. We also want to acknowledge several behavioral diabetes experts who contributed to this effort, including Robert Anderson, William Polonsky, and Paul Ciechanowski.
We would be remiss in not giving special thanks to Barbara Anderson and Richard Rubin for their tireless and longstanding leadership in the field of behavioral diabetes research and treatment, including editing a key publication in this arena (Anderson 2002). Finally, we offer our sincerest thanks to our editor at ADA, Victor Van Beuren. Without his assistance, encouragement, and support, this volume would never have seen the light of day.
Mark Peyrot
Deborah Young-Hyman
September 1, 2012
Bibliography
Anderson BJ, Rubin RR: Practical Psychology for Diabetes Clinicians: How to Deal With the Key Behavioral Issues Faced by Patients and Health Care Teams. 2nd ed. Alexandria, VA, American Diabetes Association, 2002
It is well recognized that diabetes is a chronic illness managed in a collaborative fashion between health care providers, patients, and patients’ families; that diabetes and routine diabetes care affect virtually all aspects of the patient’s daily life (including his or her emotional life); and that life events, in turn, influence his or her ability to manage diabetes. Diabetes does not have psychosocial issues; at a fundamental level diabetes is a psychosocial issue, or rather a set of psychosocial issues. Medical management of diabetes is inextricably intertwined with these psychosocial issues, and it can be daunting for the clinician to undertake responsibility for addressing them simultaneously. Yet addressing both sets of issues is imperative if either is to be addressed successfully. Psychosocial issues range widely, including such disparate elements as management of depression and other psychological disorders or conditions; how to work effectively with low literacy patients; helping patients develop effective, long-lasting self-management plans by considering patients’ priorities, goals, resources, attitudes, and knowledge about diabetes; and how disease management fits into a patient’s or family’s lifestyle.
To date there has been little in the way of guidelines to help clinicians address critical psychosocial issues. Although psychosocial issues are included in the American Diabetes Association’s annually published Clinical Practice Recommendations, they are only briefly mentioned, primarily in terms of their association with medical management. Evaluations are recommended and clinicians are advised to refer their patients to behavioral specialists “as indicated.” However, outcomes of diabetes care include patient psychosocial well-being, not just medical outcomes, and the interrelationship between the two makes a resource book essential.
The body of literature on diabetes-related psychosocial issues has become quite substantial. Studies have documented the relationship between diabetes outcomes and psychosocial factors. A multifactorial approach suggests that these relationships are dynamic and reciprocal. Psychosocial Care for People with Diabetes presents recommendations for dealing with psychosocial factors as a part of routine care as well as assessment and referral for diabetes-specific psychosocial problems requiring the intervention of specialists. This volume addresses the major psychosocial issues facing the clinician and patient in the context of living with and managing diabetes, including factors such as the life stage of the patient, socio-cultural context and resources (technical, financial, and interpersonal), the patient-provider relationship, and responsibility for implementing diabetes self-management as well as behavior change strategies. Chapters address the specifics of and the interface between components of treatment (such as insulin pump use, continuous glucose monitoring, medical nutrition therapy, and physical activity), patient and provider adherence to recommended care, age-specific life-course issues, psychological adjustment to and sequelae of illness, as well as special population needs. Critical periods for psychological risk are addressed, as well as issue-specific recommendations for assessment and treatment. Clinical recommendations are based on published literature and expert opinion.
This volume is organized into four main sections: Behavioral Health, Self-Management, Implementation of Treatment Technology, and Life Course Issues. While there are many connections and overlaps among the topics covered in these sections, it was necessary to impose a somewhat artificial division of the material into separate sections and chapters. Behavioral Health, covering conditions that are thought of as being the special purview of behavioral specialists, may be a major reason for clinicians to seek guidance from this volume. Similarly, while behaviors through which patients self-manage their diabetes are the essential component of diabetes management, it is generally accepted that behavioral specialists have an important role to play in assisting clinicians deal with issues of behavior change and maintenance; thus, a section on Self-Management is included. There is a separate section on Implementation of Treatment Technology, as the focus shifts to considering the role of behavioral and psychosocial factors in the use of technologic aids in diabetes care. Finally, the last section, Life Course Issues, returns to consideration of fundamental life processes in which diabetes and its care are embedded.
Chapters in the section on Behavioral Health include the conditions of depression (Chapter 1) and disordered eating behavior (Chapter 2), which can be considered psychological disorders. Compared to healthy populations, patients with diabetes have been shown to have higher prevalence of these conditions, at both subclinical and diagnostic levels. These symptoms, conditions, or diagnoses (depending on severity) illustrate the interaction between patient adjustment to illness and underlying physiologic processes of the disease(s). Recent research has begun to establish reciprocal relationships between the onset of these disorders and diabetes (see Chapter 1 on depression and Chapter 2 on disordered eating behavior). Thus, attention to the presence of depression and disordered eating behavior is essential to the successful management of the disease. While hypoglycemia is not a purely behavioral health issue, Chapter 3 demonstrates that its occurrence, course, and consequences are inextricably linked to behavior. Severe hypoglycemia and glucose toxicity (hyperglycemia) have been associated with cognitive function in individuals with diabetes across the life span. Chapters 4 and 5 on neurocognitive functioning present what is known regarding glycemia and cognitive function: neurocognitive issues regarding the accomplishment of age-appropriate tasks, brain function and how it relates to cognitive tasks that can be impaired by glycemia, and structural changes in the brain consequent to the disease. A main focus of both neurocognitive chapters regards patients’ ability to accomplish self-management behaviors and what steps should be taken when cognitive impairment is suspected.
The next section of this volume, Self-Management, targets knowledge, skills, behaviors, and lifestyle modifications that enable patients to successfully manage the disease. The authors address the interactions among care providers, patients, and the patients’ physical, interpersonal, and community environments. Chapter 7 gives a general framework for addressing issues of self-management in the framework of adherence to medical regimen, paying special attention to patient-provider communication. Chapter 6 on assessment/monitoring of the various components of self-management provides a foundation for intervention efforts. Evidence-based studies and theory-based conceptualization demonstrate how access to resources (see Chapter 9 on exercise), responsibility taking (see Chapter 7 on adherence), and structured interventions (see Chapter 8 on nutrition) impact adoption and maintenance of self-care behaviors, thereby improving or inhibiting treatment success. This section underscores the need for multidisciplinary screening and care, and should help the clinician identify appropriate resources for nonmedical aspects of care.
The chapters in the Implementation of Treatment Technology section present what is known about prescribing and implementing advances in intensive treatment technologies such as use of insulin pumps (see Chapter 10), aids for improving adherence such as continuous glucose monitoring (CGM) and intensification of regimens (see Chapter 11), and bariatric surgery (see Chapter 12), proven to ameliorate type 2 diabetes in obese individuals. These technologies are relatively new in our treatment armamentarium, and therefore long-term outcome data is not yet available. However, the chapters present recommendations for screening, use, and monitoring of psychosocial issues related to technology implementation. Although these advanced treatment technologies are potentially available to all individuals with diabetes, systematic protocols for screening regarding patient suitability and psychosocial monitoring of their use are not broadly disseminated or standardized. Inclusion of these chapters is meant to facilitate clinicians’ choice of psychosocial criteria to consider when implementing intensive treatment regimens, and to suggest psychological processes and developments that need monitoring.
The final section, Life Course Issues, contains chapters that address both the life course of the patient and psychosocial issues inherent in the life course of the disease. With the exception of diabetes remission via bariatric surgery or transplantation (the latter technology still in the experimental stage), the disease is chronic and progressive. Therefore there are predictable times when disease management becomes more difficult, distress can be expected, and more resources are needed (see Chapter 13). It is unclear how often this treatment perspective, anticipatory guidance regarding expected difficulties, is implemented in clinical care. Complicating expected disease progression is the idiosyncratic life course of the individual. Three chapters focus on how care can be enhanced for the specific needs of these populations at particular stages of life: childhood and adolescence (Chapter 14), adulthood (Chapter 15), and when disability occurs—often in later life (Chapter 16). The intersection between the life course of the individual and the progression of the disease becomes of greater concern as more children are diagnosed with type 2 diabetes, and as treatment for all types of diabetes improves so that patients can be expected to live longer with the disease.
It is hoped that these recommendations will serve to inform and influence public policy for guiding diabetes care and research, as well as the reimbursement policies of the various insurers and managed care organizations. In addition to being a clinical resource, the systematic presentation of this body of information should serve to enhance the likelihood that adequate resources are available to respond effectively to the psychosocial needs of patients with diabetes. Recent pharmacologic and technical advances have made available increasingly complex treatment regimens that can improve medical outcomes. In the final analysis, however, adoption of effective treatment is based on the knowledge, beliefs, attitudes, and behaviors of patients, caretakers, and health care providers about how psychosocial barriers can be overcome to improve the health and quality of life of people with diabetes and their families.