Suepattra G. May

Clinical Trials: Understanding and Perceptions of Female Chinese-American Cancer Patients

Under‐representation of minority and female participants prompted the U.S. legislature to mandate the inclusion of women and minorities in federally funded research. Recruitment of minorities to participate in clinical trials continues to be challenging. Although Asian Americans constitute one of the major minority groups in the U.S., published literature contains sparse data concerning the participation of Asian Americans in cancer clinical trials. The authors completed qualitative, semistructured interviews with 34 participants: Chinese‐American female cancer patients ages 20–85 years or their family members. Interviews were conducted in Cantonese, Mandarin, or English and were audiotaped. Chinese interviews were translated into English, and all interviews were transcribed subsequently into English. A team of five coders individually reviewed then met to discuss the English transcripts. The authors used the constant comparative technique throughout the entire coding process as part of the analysis. Among participants, 62% lacked any knowledge of clinical trials, and many expressed negative attitudes toward clinical trials. Barriers to participation included inadequate resources, language issues, and a lack of financial and social support. Facilitating factors included recommendations by a trusted oncologist or another trusted individual and information in the appropriate language. It is noteworthy that family members played an important role in the cancer experience of these participants. To promote participation, there is a need to increase knowledge of clinical trials among Chinese cancer patients. It also is necessary to examine the applicability of current patient‐physician communication and interaction models. In addition, decision‐making based on Asian philosophies within the context of Euro‐American bioethics requires further study. Cancer 2005.

Breast cancer treatment across health care systems: Linking electronic medical records and state registry data to enable outcomes research

Understanding of cancer outcomes is limited by data fragmentation. In the current study, the authors analyzed the information yielded by integrating breast cancer data from 3 sources: electronic medical records (EMRs) from 2 health care systems and the state registry.

Barriers and facilitators to routine distribution of patient decision support interventions: a preliminary study in community-based primary care settings

Background  A growing body of literature documents the value of decision support interventions (DESIs) in facilitating patient participation in preference sensitive decision making, but little is known about their implementation in routine care.

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.

Persistent barriers and strategic practices: why (asking about) the everyday matters in diabetes care.

Purpose The purpose of this study was to explore the everyday barriers to and practices of low-income patients managing their diabetes. Methods The study team conducted semistructured qualitative interviews with 20 patients with type 2 diabetes who were receiving care at safety-net clinics in Southern California. Transcripts were analyzed using grounded theory to identify emergent themes across participants. Results Participants described managing diabetes with limited financial resources as often a game of balance and negotiation, whereby purchasing healthy foods is abandoned because of a more pressing concern in their life. Although participants described strategic attempts at incorporating healthy dietary practices for diabetes management into their daily decisions, these efforts were significantly impeded by the existence of persistent and seemingly insurmountable barriers. Conclusions Although the challenges that low-income patients face in managing their diabetes may seem insurmountable at times, there are several ways that health care providers can help reduce the burden of these challenges, including tailoring their recommendations to incorporate the everyday socioeconomic environment of patients and engaging in clear, open communication with patients.

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.

Implementation of Patient Decision Support Interventions in Primary Care: The Role of Relational Coordination.

Background. The benefits of patient decision support interventions (DESIs) have been well documented. However, DESIs remain difficult to incorporate into clinical practice. Relational coordination (RC) has been shown to improve performance and quality of care in health care settings. This study aims to demonstrate how applying RC theory to DESI implementation could elucidate underlying issues limiting widespread uptake. Methods. Five primary care clinics in Northern California participated in a DESI implementation project. We used a deductive thematic approach guided by behaviors outlined in RC theory to analyze qualitative data collected from ethnographic field notes documenting the implementation process and focus groups with health care professionals. We then systematically compared the qualitative findings with quantitative DESI distribution data. Results. Based on DESI distribution rates, clinics were placed into 3 performance categories: high, middle, and low. Qualitative data illustrated how each clinic’s performance related to RC behaviors. Consistent with RC theory, the high-performing clinic exhibited frequent, timely, and accurate communication and positive working relationships. The 3 middle-performing clinics exhibited high-quality communication within physician-staff teams but limited communication regarding DESI implementation across the clinic. The lowest-performing clinic was characterized by contentious relationships and inadequate communication. Limitations. Limitations of the study include nonrandom selection of clinics and limited geographic diversity. In addition, ethnographic data collected documented only DESI implementation practices and not larger staff interactions contributing to RC. Conclusions. These findings suggest that a high level of RC within clinical settings may be a key component and facilitator of successful DESI implementation. Future attempts to integrate DESIs into clinical practice should consider incorporating interventions designed to increase positive RC behaviors as a potential means to improve uptake.

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.