Should we be talking about guidelines with patients? A qualitative analysis in metastatic breast cancer.

BACKGROUND: Little data exist on perceptions of guideline-based care in oncology. This qualitative analysis describes patients' and oncologists' views on the value of guideline-based care as well as discussing guidelines when making metastatic breast cancer (MBC) treatment decisions. PATIENTS AND METHODS: In-person interviews completed with MBC patients and community oncologists and focus groups with academic oncologists were audio-recorded and transcribed. Two coders utilized a content analysis approach to analyze transcripts independently using NVivo. Major themes and exemplary quotes were extracted. RESULTS: Participants included 20 MBC patients, 6 community oncologists, and 5 academic oncologists. Most patients were unfamiliar with the term "guidelines." All patients desired to know if they were receiving guideline-discordant treatment but were often willing to accept this treatment. Five themes emerged explaining this including trusting the oncologist, relying on the oncologist's experiences, being informed of rationale for deviation, personalized treatment, and openness to novel therapies. Physician discussions regarding the importance of guidelines revealed three themes: consistency with scientific evidence, insurance coverage, and limiting unusual practices. Oncologists identified three major limitations in using guidelines: lack of consensus, inability to "think outside the box" to personalize treatment, and lack of guideline timeliness. Although some oncologists discussed guidelines, it was often not considered a priority. CONCLUSIONS: Patients expressed a desire to know whether they were receiving guideline-based care but were amenable to guideline-discordant treatment if the rationale was made clear. Providers' preference to limit discussions of guidelines is discordant with patients' desire for this information and may limit shared decision-making.

What Is Important When Making Treatment Decisions in Metastatic Breast Cancer? A Qualitative Analysis of Decision-Making in Patients and Oncologists.

BACKGROUND: Metastatic breast cancer (MBC) is an ideal environment for shared decision-making because of the large number of guideline-based treatment options with similar efficacy but different toxicity profiles. This qualitative analysis describes patient and provider factors that influence decision-making in treatment of MBC. MATERIALS AND METHODS: Patients and community oncologists completed in-person interviews. Academic medical oncologists participated in focus groups. Interviews and focus groups were audio-recorded, transcribed, and analyzed using NVivo. Using an a priori model based on the Ottawa Framework, two independent coders analyzed transcripts using a constant comparative method. Major themes and exemplary quotes were extracted. RESULTS: Participants included 20 patients with MBC, 6 community oncologists, and 5 academic oncologists. Analysis of patient interviews revealed a decision-making process characterized by the following themes: decision-making style, contextual factors, and preferences. Patient preference subthemes include treatment efficacy, physical side effects of treatment, emotional side effects of treatment, cognitive side effects of treatment, cost and financial toxicity, salience of cutting-edge treatment options (clinical trial or newly approved medication), treatment logistics and convenience, personal and family responsibilities, treatment impact on daily activities, participation in self-defining endeavors, attending important events, and pursuing important goals. Physician decisions emphasized drug-specific characteristics (treatment efficacy, side effects, cost) rather than patient preferences, which might impact treatment choice. CONCLUSION: Although both patients with MBC and oncologists considered treatment characteristics when making decisions, patients' considerations were broader than oncologists', incorporating contextual factors such as the innovative value of the treatment and life responsibilities. Differences in perspectives between patients and oncologists suggests the value of tools to facilitate systematic communication of preferences in the setting of MBC. IMPLICATIONS FOR PRACTICE: Both patients with metastatic breast cancer (MBC) and oncologists emphasized importance of efficacy and physical side effects when making treatment decisions. However, other patient considerations for making treatment decisions were broader, incorporating contextual factors such as the logistics of treatments, personal and family responsibilities, and ability to attend important events. Furthermore, individual patients varied substantially in priorities that they want considered in treatment decisions. Differences in perspectives between patients and oncologists suggest the value of tools to facilitate systematic elicitation of preferences and communication of those preferences to oncologists for integration into decision-making in MBC.

"An addendum to breast cancer": the triple negative experience.

PURPOSE: The triple negative breast cancer (TNBC) subtype, known to be aggressive with high recurrence and mortality rates, disproportionately affects African-Americans, young women, and BRCA1 carriers. TNBC does not respond to hormonal or biologic agents, limiting treatment options. The unique characteristics of the disease and the populations disproportionately affected indicate a need to examine the responses of this group. No known studies describe the psychosocial experiences of women with TNBC. The purpose of this study is to begin to fill that gap and to explore participants' psychosocial needs. METHOD: An interpretive descriptive qualitative approach was used with in-depth interviews. A purposive sample of adult women with TNBC was recruited. Dominant themes were extracted through iterative and constant comparative analysis. RESULTS: Of the 22 participants, nearly half were women of color, and the majority was under the age of 60 years and within 5 years of diagnosis. The central theme was a perception of TNBC as "an addendum" to breast cancer. There were four subthemes: TNBC is Different: "Bottom line, it's not good"; Feeling Insecure: "Flying without a net"; Decision-Making and Understanding: "A steep learning curve"; and Looking Back: "Coulda, shoulda, woulda." Participants expressed a need for support in managing intense uncertainty with a TNBC diagnosis and in decision-making. CONCLUSIONS: Women with all subtypes of breast cancer have typically been studied together. This is the first study on the psychosocial needs specifically of women with TNBC. The findings suggest that women with TNBC may have unique experiences and unmet psychosocial needs.

Causal attribution among cancer survivors of the 10 most common cancers.

In an attempt to understand and cope with their diagnosis, individuals with cancer may develop beliefs about the cause of their illness and these causal attributions may impact psychosocial adjustment. Connecticut participants (N = 775) from the American Cancer Society's Study of Cancer Survivors-I completed a self-administered questionnaire assessing beliefs of the cause of their cancer and if they had contemplated the question "why me?" regarding their diagnosis. Written causal belief responses were coded into thematic categories and defined as either in (modifiable) or out (fixed) of an individual's control. Using logistic regression, the authors examined associations between sociodemographic, clinical, and psychosocial measures and identifying modifiable causal attributions, as well as contemplating "why me." Most cancer survivors (78.2%) identified one or more causes. Lifestyle and biological factors were most common, whereas psychological factors were least common, with some variation by cancer type. After multivariate adjustment, only cancer type was associated with identifying modifiable causes. Participants who contemplated "why me" (47.5%) were more likely to be younger and reported a greater number of cancer-related problems. In conclusion, the majority of cancer survivors reported specific causal attributions, and many had contemplated "why me." Understanding and assessing causal attributions and more general existential questions regarding diagnosis could aid in our understanding of survivors' adjustment and psychosocial well-being. Additional research in large populations is also needed to determine if other characteristics are associated with identifying modifiable causal attributions and asking "why me."

Unnecessary arrhythmia monitoring and underutilization of ischemia and QT interval monitoring in current clinical practice: baseline results of the Practical Use of the Latest Standards for Electrocardiography trial.

PURPOSE: The purpose of the study was to examine the appropriate use of arrhythmia, ischemia, and QTc interval monitoring in the acute care setting. METHODS: We analyzed baseline data of the Practical Use of the Latest Standards for Electrocardiography (PULSE) trial, a multisite randomized clinical trial evaluating the effect of implementing electrocardiographic monitoring practice standards. Research nurses reviewed medical records for indications for monitoring and observed if arrhythmia, ischemia, and QT interval monitoring was being done on 1816 patients in 17 hospitals. RESULTS: Almost all (99%) patients with an indication for arrhythmia monitoring were being monitored, but 85% of patients with no indication were monitored. Of patients with an indication for ischemia monitoring, 35% were being monitored; but 26% with no indication were being monitored for ST-segment changes. Only 21% of patients with an indication for QT interval monitoring had a QTc documented, but 18% of patients with no indication had a QTc documented. CONCLUSION: Our data show evidence of inappropriate monitoring: undermonitoring for ischemia and QTc prolongation and overmonitoring for all 3 types of monitoring, especially arrhythmia monitoring.

Surrogates' Perceptions of Service Quality While Making Decisions for ICU Patients.

A qualitative secondary analysis was undertaken to identify aspects of health care service quality in an intensive care unit from the perspective of surrogate decision makers (N = 19) who were making decisions for relatives at end of life. Directed content analysis was guided by the Donabedian model of health care quality. Nineteen participants averaged 59 years old and were over half female (53%) and patients' spouses (53%) and adult children (32%). Salient aspects of quality service included surrogate perceptions that clinicians conveyed honesty about the patient's condition and in an easily understandable way; staff were sensitive and responsive to emotions and practical needs; clinicians demonstrated a clear, confident understanding of the patient's condition; and support by clinicians was given for surrogates' choices. Surrogates also commented on the hospital and intensive care unit environment, including cleanliness, comfort, privacy, and noise level. Further research is needed to explore how decision-support strategies might include service quality concepts.

How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study.

AIMS: Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver's role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts. METHODS: Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach. FINDINGS: Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient's partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported "fair" or "poor" health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients' upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient's treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing "what if" scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers. CONCLUSIONS: These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.

Biologic, demographic, and social factors affecting triple negative breast cancer outcomes.

BACKGROUND: Triple negative breast cancer (TNBC) is an aggressive breast cancer subtype that disproportionately affects women who are African American, younger, or carriers of the BRCA1 gene. No targeted treatments exist for the disease, which has distinct features and presents unique challenges to patients who have been diagnosed with it. OBJECTIVES: TNBC is reviewed in this article according to incidence, tumor grade, stage of diagnosis, biologic and social risk factors, mortality, and treatment. METHODS: Published articles pertaining to TNBC and located through online database searches were reviewed. Articles were selected either because they offered the most current information about TNBC or contributed to the understanding of TNBC. FINDINGS: Biologic, demographic, and social factors present unique challenges in the treatment of women with TNBC. Knowing about the characteristics of TNBC and the populations who are most at risk for the disease might help healthcare providers better respond to their patients. It may also facilitate responsiveness to patients' needs and enhance their quality of life.