Contralateral Prophylactic Mastectomy: an Exporatory Approach to Understanding the Decision Making Process
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CONTRALATERAL PROPHYLACTIC MASTECTOMY: AN EXPORATORY APPROACH TO UNDERSTANDING THE DECISION MAKING PROCESS A Dissertation Submitted to The Temple University Graduate Board In Partial Fulfillment of the Requirements for the Degree DOCTOR OF PHILOSOPHY by Judith R. Greener December, 2015 Examining Committee Members: Sarah Bauerle Bass, PhD, MPH, Advisory Chair, Public Health Stephen Lepore, PhD, Public Health Adam Davey, PhD, Public Health Mary Daly, MD, PhD, Fox Chase Cancer Center © Copyright 2015 by Judith R. Greener All Rights Reserved ii ABSTRACT The rate at which women choose mastectomy has grown dramatically, and of particular note is the increase in contralateral prophylactic mastectomy (CPM). For women with no history of breast cancer or genetic risk, CPM represents a treatment decision that does not offer better long-term outcomes than the decision not to remove a healthy breast and may be associated with increased surgical risk and interventions, increased cost to the healthcare system, and potential adverse psycho-social outcomes. To better understand the decision making process regarding the election of CPM among women with early stage unilateral breast cancer, with no family history or genetic risk, a three-phase exploratory study was conducted. Qualitative in-depth interviews were conducted with healthcare providers who have close interaction with women during the decision making process (N=3) and patients who made a surgical decision about breast cancer treatment within the past three years (N=11). These two phases informed the design of the quantitative internet survey, conducted among women diagnosed with early stage breast cancer in the process of making a surgical decision (N=336). The survey design was also guided by an existing model for treatment decision making which uses a social ecological framework (Revenson & Pranikoff, 2005). In addition to descriptive analyses, perceptual mapping was utilized to understand patients’ conceptualizations of the relative importance of factors considered during the decision making process, and AdSAM® was used to gauge emotional response. Results suggest that women more likely to elect CPM demonstrate an emotional response to a generalized fear of cancer, along with the need to take control of their situation. In addition, retrospective interviews emphasized somewhat different reasons for electing CPM, highlighting the importance of prospective research in studying the decision making process. iii DEDICATION To Jim and Mariel – A world of love and appreciation. iv ACKNOWLEDGEMENTS I am indebted to the individuals who composed my committee for creating an environment that enabled me to succeed. Dr. Sarah Bass, my committee chair, provided unlimited and invaluable guidance and time, along with the unflagging support that convinced me that I actually would finish this endeavor. Dr. Stephen Lepore sparked my interest in the subject matter, and imparted the discipline required to follow this path. Dr. Adam Davey provided sound direction and advice that insured my five years of work did not turn into ten. Dr. Mary Daly guided the direction of this inquiry and I am very grateful for the time she invested. My heartfelt thanks to each one of you. A number of individuals and groups provided valued support at key junctures of this initiative. My appreciation goes out to the healthcare providers and women with breast cancer who participated in the early phases of research. Thanks to the individuals and groups who helped during the survey recruitment phase of this research, including Wes Michael, founder of Rare Patient Voice; WhatNext; Breastcancer.org; Breast Cancer Action; Life Beyond Breast Cancer; and Tomas Parsons at Temple Cancer Center, Temple University Hospital. In addition, my thanks to Dr. Jon Morris for generously allowing me to use AdSAM® and providing the AdSAM® maps. I extend appreciation to my colleagues in the program for their friendship, willingness to commiserate, and the generous way in which they shared information and advice. I am very grateful to my wonderful friends, who may not have understood why I chose to continue my education at this point in life, but still enthusiastically urged me on and kept me grounded. v Finally, it is my family who made this achievement possible. My husband Jim, through his unwavering belief that I would succeed and for making dinner every night for five years. My daughter Mariel, for inspiring me by her outlook, how she lives her life, and for making sure I knew I was ‘in it to win it’. And, my daughter Rachel, for watching over us all. vi TABLE OF CONTENTS Page ABSTRACT ....................................................................................................................... iii DEDICATION ................................................................................................................... iv ACKNOWLEDGEMENTS .................................................................................................v LIST OF TABLES ............................................................................................................ vii LIST OF FIGURES ......................................................................................................... viii CHAPTER 1. INTRODUCTION .........................................................................................................1 Overview of the Research ........................................................................................1 Purpose of the Research ..........................................................................................4 Research Questions ..................................................................................................5 Definition of Terms..................................................................................................5 Significance of the Issue for Study ........................................................................11 2. BREAST CANCER: PUTTING THE DISEASE IN CONTEXT ...............................12 Background ............................................................................................................12 Specific Considerations .........................................................................................17 Magnitude of the Disease .................................................................17 Risk Factors for the Disease .............................................................20 Socioeconomic Factors Related to Breast Cancer ............................25 Current Context ......................................................................................................28 Breast Cancer Infrastructure in the US .............................................28 vii Breast cancer Controversies ..............................................................30 Breast Cancer Screening .........................................................30 Progression of Breast Cancer Treatment ................................32 Current Literature on CPM ....................................................................................33 Outcomes Associated with CPM ......................................................33 Choosing CPM ..................................................................................34 Previous Studies Focused on CPM ...................................................37 Rationale for Research Questions ..........................................................................49 Significance of this Research .................................................................................55 3. METHODOLOGY .....................................................................................................58 Overview of Approach ...........................................................................................58 Phase 1: Qualitative Research with Healthcare Providers .....................................59 Criteria for Provider Selection ..........................................................60 Interview Structure............................................................................60 Overview of Qualitative Analysis .....................................................62 Phase 2: Qualitative Interviews with Patients ........................................................63 Theoretical Framework .....................................................................63 Criteria for Patient Selection .............................................................64 Interview Structure............................................................................66 Qualitative Analysis ..........................................................................68 Phase 3: Quantitative Research with Patients ........................................................70 Theoretical Framework .....................................................................70 Perceptual Mapping ................................................................70 viii AdSAM® ................................................................................73 Criteria for Participant Selection ......................................................76 Participant Recruiting .......................................................................76 Proposed Recruiting Plan ........................................................77 Recruiting Plan Executed ........................................................78 Interview Structure............................................................................80 Specific Measures Used