Katharine Rendle

Redefining Risk and Benefit Understanding the Decision to Undergo Contralateral Prophylactic Mastectomy

Rates of contralateral prophylactic mastectomy (CPM) among unilateral breast cancer patients are rapidly increasing; however, there are little data documenting the decision-making process of patients with no known BRCA mutations, who elect this more aggressive treatment. We conducted semistructured interviews with nine newly diagnosed patients who elected CPM over other surgical options. Using grounded theory, we analyzed interview data to identify influential decision-making factors by prevalence and intensity across participants. Decision-making factors included subjective evaluations of risk and benefit, avoidance of future breast cancer surveillance and accompanying worry, and desire to maintain (or improve) breast appearance. Based solely on survival benefit, the decision to undergo CPM might be viewed as unnecessary or even misguided. However, our findings show the importance of psychosocial factors in patients’ assessments of risk and benefit, and support the need for additional patient–provider communication regarding these factors.

Mapping the Decision-Making Process for Adjuvant Endocrine Therapy for Breast Cancer: The Role of Decisional Resolve

Background. Studies show adjuvant endocrine therapy increases survival and decreases risk of breast cancer recurrence for hormone receptor–positive tumors. Yet studies also suggest that adherence rates among women taking this therapy may be as low as 50% owing largely to adverse side effects. Despite these rates, research on longitudinal patient decision making regarding this therapy is scant. Objective. We sought to map the decision-making process for women considering and initiating adjuvant endocrine therapy, paying particular attention to patterns of uncertainty and decisional change over time. Methods. A longitudinal series of semistructured interviews conducted at a multispecialty health care organization in Northern California with 35 newly diagnosed patients eligible for adjuvant endocrine therapy were analyzed. Analysis led to the identification and indexing of 3 new decision-making constructs—decisional phase, decisional direction, and decisional resolve—which were then organized using a visual matrix and examined for patterns characterizing the decision-making process. Results. Our data reveal that most patients do not make a single, discrete decision to take or not take hormone therapy but rather traverse multiple decisional states, characterized by 1) phase, 2) direction, and 3) strength of resolve. Our analysis tracks these decisional states longitudinally using a grayscale-coded matrix. Our data show that decisional resolve wavers not just when considering therapy, as the existing concept of decisional conflict suggests, but even after initiating it, which may signal future decisions to forgo therapy. Conclusions. Adjuvant endocrine therapy, like other chronic care decisions, has a longer decision-making process and implementation period. Thus, theoretical, empirical, and clinical approaches should consider further exploring the new concept and measurement of decisional resolve, as it may help to improve subsequent medication adherence.

PS1-10: How Can the Same Practice Be Classified as Having 2 and 900 MDs? NAMCS Data Collection in a Changing Ambulatory Care Environment

Background/Aims Since 1973, the National Ambulatory Medical Care Survey (NAMCS), administered by the National Center for Health Statistics (NCHS) has been widely used in studies of ambulatory care. With the growth in large multispecialty practices – including many members of the HMORN – there is a need to understand how NAMCS data are collected and whether current processes yield accurate and reliable data. NAMCS collects data from physicians about their practices and abstracts a sample of patient visit records. This study reports on the physician component. Methods In collaboration with NCHS, nine physicians were randomly sampled from a multispecialty clinic using standard NAMCS recruitment procedures; eight physicians were eligible and agreed to participate. Using their standard protocols, three Field Representatives (FRs) conducted NAMCS physician interviews while a trained ethnographer (MH, KR) observed and audio-recorded each interview. Transcripts and field notes were analyzed using a grounded theory approach to identify key themes. Results Data have been collected and analyzed. They are currently undergoing standard confidentiality review by NCHS. However, this process has been delayed due to the government shutdown. We fully anticipate that results will be released in time for presentation at the HMORN conference. Conclusions Though we are precluded from disseminating results at this time, we will provide a full report of our results in our HMORN conference presentation.

PS1-4: The Nature of Social Support on Breast Cancer Patients’ Treatment Decision-Making

Background/Aims With the advent of patient-centered approaches to care, much attention has been directed towards engaging patients in their own care. Healthcare providers seek to achieve this through communication about and inclusion of their patients’ values and preferences under the rubric of shared decision-making (SDM). However, few studies have investigated the role a patient’s social support network (e.g., family members or friends) may play in medical decision-making or considered how discussions outside of the clinical consultation can affect a patient’s treatment decisions. Drawing on interviews with oncology care providers, breast cancer advocates, and women newly diagnosed with breast cancer in Northern California, this study investigated how members of a patient’s social support network can influence treatment decision-making for breast cancer. Methods In-depth interviews were conducted with (1) oncology care providers and breast cancer advocates, and (2) breast cancer patients at four time points throughout their treatment journey, to explore the influence of others on treatment decision-making. At each interview, patients completed questionnaires assessing health-related quality of life (HRQOL), role preferences, and treatment satisfaction. EHR abstraction and observational field notes augmented patient interview data. Interview data were coded to identify recurrent themes across all interviews and frequency distributions for questionnaire data were calculated using IBM SPSS Statistics 20. Results We conducted 20 in-depth interviews with oncology care providers and breast cancer advocates, and over 150 interviews with 41 breast cancer patients. We report on care providers’ observations of and experiences with members of their patients’ social networks in treatment decision-making. We also describe how patients themselves consider the involvement of others in their treatment decision-making, identifying several areas of decisional influence. Conclusions Our interviews illustrate how the current healthcare delivery structure rarely acknowledges the circles of care that can influence decision-making. Lack of attention to the influence a patient’s social support network can have on treatment decision-making may lead to sub-optimal decision-making because these influences are not adequately understood by clinicians. Our findings suggest that patient-centered care and patient engagement must go beyond the dominant dyadic models of patient and provider and include an understanding of the influence of others in patients’ treatment decision-making.