Handbook of Cancer Survivorship

Handbook of

Cancer Survivorship

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Handbook of

Cancer Survivorship

Michael Feuerstein, Ph.D, MPH, ABPP

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Michael Feuerstein, Ph.D, MPH, ABPP

Uniformed Services University of the Health Science Department of Medical and Clinical Psychology and

Preventive Medicine and Biometrics 4301 Jones Bridge Road

Bethesda, MD 20814 USA

mfeuerstein@usuhs.edu

Library of Congress Control Number: 2006929207 ISBN-10: 0-387-34561-2 e-ISBN-10: 0-387-34562-0 ISBN-13: 978-0-387-34561-1 e-ISBN-13: 978-0-387-34562-8 Printed on acid-free paper.

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2007 Springer Science+Business Media, LLC

All rights reserved. This work may not be translated or copied in whole or in part without the written per- mission of the publisher (Springer Science+Business Media, LLC, 233 Spring Street, New York, NY 10013, USA), except for brief excerpts in connection with reviews or scholarly analysis. Use in connection with any form of information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed is forbidden.

The use in this publication of trade names, trademarks, service marks, and similar terms, even if they are not identified as such, is not to be taken as an expression of opinion as to whether or not they are subject to proprietary rights.

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To survivors around the world—

I hope this will help make all our lives a little bit easier.

Michael

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Preface

It is quite remarkable that in so short a period we have seen cancer change from the stigmatized deep secret when no survivor dared to reveal it and complaints to physicians were met with “You should just be glad you are alive.” Today, survivors of cancer—all 10 million of them—are eager to share their story with others and oncologists have a new interest in the care of their patients AFTER cancer. It is most worthwhile that Dr. Feuerstein has chosen to put together a baseline state of the art of the science of cancer survivorship, because it is new, still in its infancy and the research will likely explode in the next decade. There is much to be grateful for to pediatric oncology which has led the way and embraced survivorship long ahead of the adult oncology world. Many lessons learned there about clinical care, management of long-term side effects, prevalence of second malignancies, and the most effective models for follow-up should guide some of the early research in adult survivors.

Survivorship research is now represented by a whole field of investigators and clinicians devoted to improving the lot of the survivor from many different perspec- tives. Several are key contributors to this useful book. This handbook outlines the prevalence, burden, common problems, secondary prevention, and global perspec- tive toward a new clinical entity that is the result of the cancer success story.

There are many important questions to be answered about survivorship and this book sets the stage for new researchers and clinicians entering the field. The reviews of the literature in each area will be invaluable as researchers move forward.

I predict that this will serve as a foundation for the explosion of research that will be designed to assist in assuring that survivors are able to live their full lives to the fullest.

Jimmie C. Holland, md Wayne E. Chapman Chair in Psychiatric Oncology Memorial Sloan-Kettering Cancer Center New York, NY 10022 April 2006

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Acknowledgments

Surviving cancer and living with the long-term consequences of the illness is not a simple process. While many survivors simply go on with their lives, still others experience episodic or persistent challenges that justify attention. Cancer is now often referred to as a “chronic illness.” As many with chronic illnesses will tell you there are a set of challenges that often go along with living with an illness. That is what this book is all about. Providing the state of the scientific literature related to the burden of these problems, current understanding of the factors that impact these challenges and evidence-based approaches to help manage them is the focus of this book.

As a researcher and health care provider placed into the arena of cancer sur- vivorship as a cancer survivor myself (malignant brain tumor), I noticed that there was no lack of information regarding cancer and its impact but as is often the case it was scattered across disciplines and journals. As I compiled information from many different fields and searched for a text book on the topic I noticed there were not many.

This Handbook covers topics from a number of diverse disciplines. The contri- butions from multiple disciplines provide a perspective often not found in one place even in the current zeitgeist of interdisciplinary approaches to chronic illnesses. Pro- fessional health care providers and researchers will benefit from such a perspective and through their efforts we can impact the quality of care and quality of life of cancer survivors. Each chapter was written by highly skilled scientists and clinicians.

They are leaders in their respective fields from around the world. I would like to formally thank each one of these authors for their excellent work. Their ability to synthesize the literature from a clinically relevant perspective as well as generate sug- gestions for future research, practice, and/or policy is extraordinary. Their efforts will benefit thousands of us who receive more comprehensive, thoughtful care as a result.

I also want to thank my family. My wife Shelley and daughter Erica have lived with my preoccupation with this project. Thank you. My children, Sara and Andrew, son-in-law Umang and grandson Kiran provide a source of support for which I am forever grateful for. It is a joy to be part of their lives.

There are many in my professional and personal life who have provided me with much compassion. This has been the best medicine I could have had over the

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x Acknowledgments

last few years and for that I am very thankful. My colleagues around the world have helped me move forward with my work and life. They know who they are and I would just like to say thank you. Your respect and willingness to continue to work with me means so much.

Since becoming a survivor myself I have met many other survivors at meetings, on the Internet, and in casual conversations. From talking with them it is clear there is a genuine need for a comprehensive public health approach to the challenges survivors face. Many in the public and private sectors are working toward that goal and their efforts need to be acknowledged. I also want to thank all the survivors I have encountered over the years in my roles as researcher, health care provider, and survivor. These individuals have clarified many of the subtleties involved in survivorship that often go unnoticed or are put on the back burner.

I would like to thank Jennifer A. Hansen and Karen A. Pescatore for their assistance with many aspects involved in the generation of this volume. I also want to thank Bill Tucker at Springer who believed in this project from the onset and has provided the necessary blend of professionalism, guidance, and independence. This could not have been accomplished without his support.

While survivors often say you “need to be there” to really fully understand the

depths of these problems . . . this is clearly not the case. As thousands of professionals,

family members and friends can attest, you don’t need to have cancer to understand

the nature of this illness and its potential impact on a person’s or family’s function,

well-being and long-term physical health. Therefore, as health professionals, stu-

dents of the health professions, families, friends, and policy makers we can all learn

to play a critical role in helping to understand, solve, better manage, or share the

many challenges and joys cancer survivor’s face.

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Contents

Preface . . . . vii Jimmie Holland, MD

Acknowledgments . . . . ix Contributors . . . . xv

PART I: BURDEN

1. Cancer Survivorship: A Bird’s Eye View from an Insider . . . . 1 Michael Feuerstein

2. The Burden of Cancer Survivorship: A Pandemic of

Treatment Success . . . . 7 Steven N. Wolff

3. Quality of Care . . . . 19 Craig C. Earle

4. Quality of Life in Long-Term Cancer Survivors . . . . 43 Joan R. Bloom, Soo H. Kang, Dana M. Petersen, and Susan L. Stewart 5. Health Care Disparities . . . . 67

T. Salewa Oseni and Ismail Jatoi

6. Measuring Quality of Life in Cancer Survivors . . . . 79 David Victorson, David Cella, Lynne Wagner, Laura Kramer,

and Mary Lou Smith

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xii Contents

PART II: COMMON PROBLEMS

7. Exercise Motivation and Behavior Change . . . . 113 Kerry S. Courneya, Kristina H. Karvinen, and Jeffrey K.H. Vallance

8. Fatigue . . . . 133 Alexander V. Ng, Carlynn A. Alt, and Elizabeth M. Gore

9. Pain . . . . 151 Victor T. Chang and Ryuichi Sekine

10. Depression . . . . 173 Peter C. Trask and Timothy Pearman

11. Interpersonal Relationships . . . . 191 Andrea A. Thornton and Martin A. Perez

12. Adaptation in the Face of Advanced Cancer . . . . 211 Carissa A. Low, Tammy Beran, and Annette L. Stanton

PART III: SECONDARY PREVENTION

13. Restoring Emotional Well-Being: A Model . . . . 231 Robert W. Lent

14. Physical Activity for Cancer Survivors: Potential Benefits

and Guidelines . . . . 249 Clare Stevinson, Kristin L. Campbell, Christopher M. Sellar,

and Kerry S. Courneya

15. Nutrition and Weight Management in Cancer Survivors . . . . 269 Virginia Uhley and K.-L. Catherine Jen

16. Management of Chemotherapy-Related Cognitive

Dysfunction . . . . 287 Robert J. Ferguson, Raine Riggs, Tim Ahles, and Andrew J. Saykin

17. Smoking Cessation and Cancer Survivors . . . . 303

Jamie S. Ostroff and Lara K. Dhingra

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Contents xiii 18. Psychological Distress, Depression, and Anxiety . . . . 323

Arthur M. Nezu and Christine Maguth Nezu

19. Managing Daily and Long-Term Stress . . . . 339 Linda E. Carlson and Michael Speca

20. Pain and Function: A Psychosocial Perspective . . . . 361 Michael J.L. Sullivan, Pascal Thibault, Andre Savard, and Ana Velly

21. Work . . . . 381 Jos Verbeek and Evelien Spelten

22. Comprehensive Long-Term Follow-up: Cancer

Survivorship Centers . . . . 397 Linda A. Jacobs, Jane Alavi, Angela DeMichele, Steven Palmer,

Carrie Stricker, and David Vaughn

PART IV: SURVIVOR AND PROVIDER PERSPECTIVES

23. Survivor Perspectives on Quality Care . . . . 419 Kathryn McPherson and Rod MacLeod

24. Living with Advanced Cancer . . . . 429 Sheila Payne

PART V: INTERNATIONAL PERSPECTIVE

25. Global Considerations . . . . 449 Patricia A. Findley

PART VI: FUTURE DIRECTIONS

26. Cancer Survivorship: Research, Practice, and Policy . . . . 481 Michael Feuerstein

Index . . . . 495

Contributors

Tim A. Ahles, PhD Director of the Neurocognitive Research Laboratory, Memorial Sloan-Kettering Cancer Center, New York, NY

Carlynn A. Alt, PhD, PT, MS Assistant Professor, Exercise Science Program, Depart- ment of Physical Therapy Marquette University, Miluankee, WI

Jane Alavi, MD Professor Emeritus, Department of Medicine, University of Pennsylvania Department of Medicine, Philadelphia, PA

Tammy Beran, MA Graduate Student, Department of Psychology, University of California, Los Angeles, Los Angeles, CA

Joan R. Bloom, PhD Professor of Health and Policy Management, School of Public Health, University of California, Berkeley, Berkeley, CA

Kristin L. Campbell, PhD Postdoctoral Research Fellow, Fred Hutchinson Cancer Research Center, Seattle, WA

Linda E. Carlson, PhD, C.Psych Associate Professor, Division of Psychosocial Oncology, Department of Oncology, Faculty of Medicine, Adjunct Associate Pro- fessor, Department of Psychology, University of Calgary, Clinical Psychologist, De- partment of Psychosocial Resources, Tom Baker Cancer Centre, Calgary, Alberta, Canada

David Cella, PhD Center on Outcomes, Research and Education, Evanston North- western Healthcare and Northwestern University, Evanston, IL

Victor Chang, MD Associate Professor of Medicine, Department of Hematology/

Oncology, UMDNJ New Jersey Medical School, Attending Physician, VA New Jersey Health Care System/UMDNJ, Investigator, VA New Jersey Health Care System, East Orange, NJ

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xvi Contributors

Kerry S. Courneya, PhD Professor and Canada Research Chair in Physical Activity and Cancer, Faculty of Physical Education, University of Alberta, Calgary, Alberta, Canada

Angela DeMichele, MD Assistant Professor, Department of Medicine, University of Pennsylvania, Philadelphia, PA

Lara K. Dhingra, PhD Postdoctoral Research Fellow, Department of Psychia- try & Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, NY

Craig C. Earle, MD, MSc Associate Professor, Department of Health Policy and Management, Harvard School of Public Health, Associate Professor of Medicine, Harvard Medical School, Dana Farber Cancer Center, Boston, MA

Robert J. Ferguson, PhD Adjunct Assistant Professor, Department of Psychiatry, Dartmouth Medical School, Hanover, N.H., Eastern Maine Medical Center, Maine Rehabilitation Center, Bangor, ME

Michael Feuerstein, PhD, MPH, ABPP Professor, Departments of Medical and Clin- ical Psychology/Preventive Medicine and Biometrics, Uniformed Services University of Health Sciences, Bethesda, MD, Adjunct Clinical Professor, Georgetown Univer- sity Medical Center, Washington, DC

Patricia A. Findley, PhD Assistant Research Professor, School of Social Work, Rutgers University, Newark, NJ

Elizabeth M. Gore, MD Associate Professor, Department of Radiation Oncology, Medical College of Wisconsin, Miluankee, WI

Linda A. Jacobs, PhD, RN Clinical Assistant Professor, School of Nursing, University of Pennsylvania, Coordinator, Living Well After Cancer Program, Abramson Cancer Center of the University of Pennsylvania, Philadelphia, PA

Ismail Jatoi, MD, PhD Associate Professor, Department of Surgery, Uniformed Ser- vices University of Health Sciences, Bethesda, MD

Catherine Jen, PhD Professor and Interim Chair, Department of Nutrition and Food Science, Wayne State University, Detroit, MI

Soo Hyang Kang, Dr.PH Associate Researcher, School of Public Health, University of California, Berkeley, Berkeley, CA

Kristina H. Karvinen, MA Graduate student, Faculty of Physical Education & Recre- ation, University of Alberta, Calgary, Alberta, Canada

Laura Kramer, BA Research Assistant, Center on Outcomes, Research & Education,

Evanston Northwestern Healthcare, Evanston, IL

Contributors xvii

Robert W. Lent, PhD Professor and Co-Director Counseling Psychology Program, Department of Counseling and Personnel Services, University of Maryland, College Park, MD

Carissa A. Low, MA Graduate student, Department of Psychology, University of California, Los Angeles, Los Angeles, CA

Kathryn McPherson, PhD Professor of Rehabilitation, Division of Rehabilitation and Occupation Studies, Auckland University of Technology, Auckland, New Zealand

Rod MacLeod, PhD Director of Pallitative Care, Mary Potter Hospice, Wellington South, New Zealand

Arthur M. Nezu, PhD, ABPP Professor, Department of Psychology, Drexel Univer- sity, Center for Behavioral Medicine, Philadelphia, PA

Christine M. Nezu, PhD, ABPP Professor of Clinical and Health Psychology, Depart- ment of Psychology, Drexel University, Philadelphia, PA

Alexander V. Ng, PhD, FACSM Associate Professor, Department of Physical Therapy and Exercise Science, College of Health Sciences, Marquette University, Miluankee, WI

Saleva Oseni, MD Chief Resident, Department of Surgery, National Naval Medical Center, Bethesda, MD

Jamie S. Ostroff, PhD Chief, Department of Behavioral Sciences Services, Director, Smoking Cessation Program, Memorial Sloan-Kettering Cancer Center, New York, NY

Steven Palmer, PhD Research Assistant Professor, Department of Psychiatry, Uni- versity of Pennsylvania, Philadelphia, PA

Sheila A. Payne, RN, PhD Professor in Palliative Care, School of Nursing and Mid- wifery, University of Sheffield, Sheffield, UK

Timothy Pearman, PhD Clinical Associate Professor, Department of Psychiatry and Neurology, Director, Friedler Center for Psychosocial Oncology, Tulane University Medical Center, New Orleans, LA

Martin A. Perez, PhD Assistant Professor and Co-Director of the Department of Psychology, City of Hope National Medical Center, Duarte, CA

Dana M. Petersen, MA, MPH Doctoral student, Department of Health Services and Policy Analysis, University of California, Berkeley, Berkeley, CA

Raine Riggs, PhD Assistant Professor, Department of Psychiatry, Dartmouth Medi-

cal School, Hanover, NH, Director of Behavioral Science Shared Resources, Norris

Cotton Cancer Center, Manchester, NH

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xviii Contributors

Andre Savard, MSc Graduate Student, Department of Psychology, University of Montreal, Montreal, Quebec, Canada

Andrew J. Saykin, PsyD Professor, Department of Psychiatry and Radiology, Director, Neuropsychology & Brain Imaging Laboratory, Department of Psychiatry, Dartmouth Medical School, Hanore, NA

Ryuichi Sekine, MD Geriatrics Research Education & Clinical Center—Fellow in Department of Palliative Care, James J Peters VA Medical Center, Bronx, NY

Christopher M. Sellar, BPE, MSc Graduate Student, Department of Physical Educa- tion, University of Alberta, Calgary, Alberta, Canada

Mary Lou Smith, JD Co-founder, Research Advocacy Network, Arington Heights, IL

Michael Speca, PsyD, C.Psych Adjunct Assistant Professor, Faculty of Medicine, University of Calgary, Tom Baker Cancer Centre, Calgary, Alberta, Canada

Evelien R. Spelten, PhD Coronel Institute and Department of Medical Psychology, University of Amsterdam, Amsterdam, The Netherlands

Annette L. Stanton, PhD Professor, Departments of Psychology and Psychiatry &

Biobehavioral Sciences Member, Jonsson Comprehensive Cancer Center, Depart- ment of Psychology, University of California, Los Angeles, Los Angeles, CA

Clare Stevinson, PhD Postdoctoral Research Fellow, Department of Physical Educa- tion, University of Alberta, Calgary, Alberta, CA

Susan L. Stewart, PhD Adjunct Professor of Medicine, Department of General In- ternal Medicine, University of California, San Francisco, San Francisco, CA

Carrie Tompkins Stricker, MSN, CRNP, AOCN Oncology Nurse Practitioner and Doctoral Student, School of Nursing, University of Pennsylvania Medical Center, Philadelphia, PA

Michael J.L. Sullivan, PhD Professor, Department of Psychology, University of Montreal, Montreal, Quebec, Canada

Pascal Thibault, MSc Graduate Student, Department of Psychology, University of Montreal, Montreal, Quebec, Canada

Andrea A. Thornton, PhD Assistant Professor and Co-Director of the Department of Psychology, City of Hope National Medical Center, Durite, CA

Peter C. Trask, PhD, MPH Assistant Professor, Department of Psychiatry & Human Behavior Brown Medical Center, Centers for Behavioral and Preventive Medicine, Providence, RI

Jeffrey K.H. Vallance, MA Graduate student, Faculty of Physical Education and

Recreation, University of Alberta, Calgary, Alberta, Canada

Contributors xix

David Vaughn, MD Associate Professor, Department of Medicine, University of Pennsylvania, Philadelphia, PA

Ana Velly, DDS, PhD Assistant Professor, Faculty of Dentistry, McGill University, Centre for Clinical Epidemiology & Community Studies, Sir Mortimer B. Davis- Jewish General Hospital, Montreal, Quebec, Canada

JHAM Verbeek, MD Associate Professor, University of Amsterdam, AMC, Coronel Institute, Amsterdam, The Netherlands

David E. Victorson, PhD Research Assistant Professor, Northwestern University Feinberg Medical School, Evanston Northwestern Healthcare Research Institute, Evanston, IL

Lynne I. Wagner, PhD Assistant Professor, Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Center on Out- comes, Research & Education, Evanston Northwestern Healthcare, Evanston, IL

Steven N. Wolff, MD Chairman, Professor, Department of Internal Medicine,

Meharry Medical College, Nashville, TN, Chairman, Scientific Advisory Board, Lance

Armstrong Foundation, Austin, TX