MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER

National Cancer Policy Board

Maria Hewitt, Roger Herdman, and Jimmie Holland, Editors

INSTITUTE OF MEDICINE AND NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
Washington, D.C.
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Meeting Psychosocial Needs of Women with Breast Cancer MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER National Cancer Policy Board Maria Hewitt, Roger Herdman, and Jimmie Holland, Editors INSTITUTE OF MEDICINE AND NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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Meeting Psychosocial Needs of Women with Breast Cancer THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This study was supported by Contract/Grant No. N02-CO-01029 between the National Academy of Sciences and the National Cancer Institute, and a grant from the Longaberger Company through the American Cancer Society. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. Library of Congress Cataloging-in-Publication Data Meeting psychosocial needs of women with breast cancer / National Cancer Policy Board ; Maria Hewitt, Roger Herdman, and Jimmie Holland, editors. p. ; cm. Includes bibliographical references. ISBN 0-309-09129-2 (pbk.) 1. Breast—Cancer—Psychological aspects. 2. Breast—Cancer—Social aspects. 3. Breast—Cancer—Patients—Services for. [DNLM: 1. Breast Neoplasms—psychology. 2. Breast Neoplasms—rehabilitation. 3. Counseling—methods. 4. Psychotherapy—methods. 5. Social Support. 6. Survivors—psychology. WP 870 M496 2004] I. Hewitt, Maria Elizabeth. II. Herdman, Roger Cole. III. Holland, Jimmie C. IV. National Cancer Policy Board (U.S.) RC280.B8M435 2004 616.99′44906—dc22 2004001867 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. Copyright 2004 by the National Academy of Sciences. All rights reserved. Printed in the United States of America.

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Meeting Psychosocial Needs of Women with Breast Cancer THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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Meeting Psychosocial Needs of Women with Breast Cancer NATIONAL CANCER POLICY BOARD JOSEPH SIMONE (Chair), Simone Consulting, Dunwoody, GA ELLEN STOVALL (Vice Chair), Executive Director, National Coalition for Cancer Survivorship, Silver Spring, MD DIANA PETITTI (Vice Chair), Director, Research & Evaluation, Kaiser Permanente of Southern California, Pasadena, CA (until April 30, 2003) BRUCE W. STILLMAN (Vice Chair), Director, Cold Spring Harbor Laboratory, Cold Spring Harbor, NY JILL BARGONETTI, Associate Professor, Department of Biological Sciences, Hunter College, New York, NY TIM BYERS, Professor of Epidemiology, Program Leader, Clinical Cancer Prevention & Control, University of Colorado Health Sciences Center, Denver, CO (until April 30, 2003) TIMOTHY EBERLEIN, Bixby Professor and Chairman, Department of Surgery, Washington University School of Medicine, St. Louis, MO KATHY GIUSTI, President, Multiple Myeloma Research Foundation, New Canaan, CT (as of May 1, 2003). KAREN HERSEY, Senior Counsel, Massachusetts Institute of Technology, Cambridge, MA JIMMIE C. HOLLAND, Chair, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, NY WILLIAM KAELIN, Professor, Harvard Medical School, Boston, MA WILLIAM MCGUIRE, Chief Executive Officer, UnitedHealth Group, Minnetonka, MN JOHN MENDELSOHN, President, M. D. Anderson Cancer Center, University of Texas, Houston, TX KATHLEEN HARDIN MOONEY, Professor, University of Utah College of Nursing, Salt Lake City, UT NANCY MUELLER, Professor of Epidemiology, Harvard School of Public Health, Department of Epidemiology, Boston, MA (until April 30, 2003) PATRICIA NOLAN, Director, Rhode Island Department of Health, Providence, RI DAVID PARKINSON, Oncology Therapeutic Head, Amgen Inc., Thousand Oaks, CA JOHN POTTER, Senior Vice President and Director, Cancer Prevention Research Program, Fred Hutchinson Cancer Research Center, Seattle, WA (as of May 1, 2003) CECIL B. PICKETT, Executive Vice President, Discovery Research, Schering-Plough Research Institute, Kenilworth, NJ (until April 30, 2003)

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Meeting Psychosocial Needs of Women with Breast Cancer LOUISE RUSSELL, Professor of Economics, Rutgers University, New Brunswick, NJ THOMAS J. SMITH, Professor of Medicine, Virginia Commonwealth University, Richmond, VA EDWARD WAGNER, Director, W.A. (Sandy) MacColl Institute for Healthcare Innovation, Group Health Cooperative, Seattle, WA (as of May 1, 2003) SUSAN WEINER, President, The Children’s Cause, Silver Spring, MD (until April 30, 2003) ROBERT C. YOUNG, President, American Cancer Society and the Fox Chase Cancer Center, Philadelphia, PA Consultants PATRICIA A. GANZ, Jonsson Comprehensive Cancer Center, UCLA Schools of Medicine and Public Health, Los Angeles, CA PAMELA J. GOODWIN, Marvelle Koffler Breast Centre, Department of Medicine, Division of Epidemiology, Samuel Lunenfeld Research Institute, Mount Sinai Hospital, University of Toronto Study Staff MARIA HEWITT, Study Director (until April 18, 2003) ROGER HERDMAN, Study Director (as of April 19, 2003) GELSEY LYNN, Research Assistant TIMOTHY BRENNAN, Research Assistant JAMES RYAN, Editor NCPB Staff ROGER HERDMAN, Director, National Cancer Policy Board ANIKE JOHNSON, Administrator ROSA POMMIER, Financial Associate

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Meeting Psychosocial Needs of Women with Breast Cancer Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Joan R. Bloom University of California, Berkeley Joanna Cain Oregon Health & Science University Michele Dabrowski University of Utah Betty Ferrell City of Hope National Medical Center Stewart B. Fleishman Beth Israel Cancer Center Donna Greenberg Massachusetts General Hospital Richard P. McQuellon Wake Forest University Baptist Medical Center Anne Moore Cornell University

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Meeting Psychosocial Needs of Women with Breast Cancer Edward Perrin University of Washington Sally Redman Institute for Health Research, Australia Lee N. Robins Washington University School of Medicine Lidia Schapira Massachusetts General Hospital Selma R. Schimmel Vital Options International Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by Merwyn Greenlick, Oregon Health & Science University, and Enriqueta Bond, Burroughs Wellcome Fund. Appointed by the National Research Council and the Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Meeting Psychosocial Needs of Women with Breast Cancer Contents     EXECUTIVE SUMMARY   1 1.   INTRODUCTION   11      Role of the National Cancer Policy Board,   12      Framework of the Report,   13      References,   14 2.   EPIDEMIOLOGY OF BREAST CANCER   15      Incidence and Mortality,   15      Prevalence,   16      Stage at Diagnosis,   16      Some Risk Factors Associated with Breast Cancer,   17      Summary,   20      References,   20 3.   PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER   21      Psychosocial Needs of Women by Phase of Care,   22      Prevalence of Psychosocial Distress,   31      Risk Factors Associated with Psychosocial Distress,   58      Summary,   61      References,   62 4.   PSYCHOSOCIAL SERVICES AND PROVIDERS   70      Psychosocial Services,   70      Providers of Psychosocial Care,   78

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Meeting Psychosocial Needs of Women with Breast Cancer      Summary,   90      References,   92 5.   THE EFFECTIVENESS OF PSYCHOSOCIAL INTERVENTIONS FOR WOMEN WITH BREAST CANCER   95      History of Psychosocial Intervention Research,   96      Methodological Issues,   99      Review of the Literature,   105      Summary,   129      References,   129 6.   DELIVERING PSYCHOSOCIAL SERVICES   133      The Evolution of Breast Cancer Care and Its Implications for the Provision of Psychosocial Services,   133      The Structure and Delivery of Psychosocial Services to Women with Breast Cancer,   136      Psychosocial Service Use,   140      Summary,   161      References,   162 7.   BARRIERS TO APPROPRIATE USE OF PSYCHOSOCIAL SERVICES   165      Access to Care,   165      Summary and Recommendations,   193      References,   195 8.   RESEARCH   199      Status of Breast Cancer-Related Research,   200      Suggestions for Future Research Priorities,   219      Findings and Recommendations,   225      References,   228     APPENDIXES     A.   Meeting Psychosocial Needs of Women with Breast Cancer   229 B.   Tables and Boxes Summarizing Evidence from Clinical Trials   234