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.

"I'd Want to Know, Because a Year's Not a Long Time to Prepare for a Death": Role of Prognostic Information in Shared Decision Making among Women with Metastatic Breast Cancer.

Context: Increasing emphasis on patient-centered care has led to highlighted importance of shared decision making, which better aligns medical decisions with patient care preferences. Effective shared decision making in metastatic breast cancer (MBC) treatment requires prognostic understanding, without which patients may receive treatment inconsistent with personal preferences. Objectives: To assess MBC patient and provider perspectives on the role of prognostic information in treatment decision making. Methods: We conducted semi-structured interviews with MBC patients and community oncologists and separate focus groups involving lay navigators, nurses, and academic oncologists. Qualitative analysis utilized a content analysis approach that included a constant comparative method to generate themes. Results: Of 20 interviewed patients with MBC, 30% were African American. Academic oncologists were mostly women (60%), community oncologists were all Caucasian, and nurses were all women and 28% African American. Lay navigators were all African American and predominately women (86%). Five emergent themes were identified. (1) Most patients wanted prognostic information but differed in when they wanted to have this conversation, (2) Emotional distress and discomfort was a critical reason for not discussing prognosis, (3) Religious beliefs shaped preferences for prognostic information, (4) Health care professionals differed on prognostic information delivery timing, and (5) Providers acknowledged that an individualized approach taking into account patient values and preferences would be beneficial. Conclusion: Most MBC patients wanted prognostic information, yet varied in when they wanted this information. Understanding why patients want limited or unrestricted prognostic information can inform oncologists' efforts toward shared decision making.

Trust but Verify: Exploring the Role of Treatment-Related Information and Patient-Physician Trust in Shared Decision Making Among Patients with Metastatic Breast Cancer.

An ideal model for decision making in cancer is shared decision-making (SDM). Primary facilitators in this model are information-seeking about treatment options and patient-physician trust. Previous studies have investigated the role of each of these parameters individually. However, little is known about their convergent role in treatment decision-making. Therefore, we explored perspectives of metastatic breast cancer (MBC) patients and healthcare professionals about the influence of health information-seeking and physician trust in the SDM process. Qualitative interviews with 20 MBC patients and 6 community oncologists, as well as 3 separate focus groups involving lay navigators, nurses, and academic oncologists, were conducted, recorded, and transcribed. Qualitative data analysis employed a content analysis approach, which included a constant comparative method to generate themes from the transcribed textual data. Five emergent themes were identified (1) physicians considered themselves as the patients' primary source of treatment information; (2) patients trusted their physician's treatment recommendations; (3) patients varied in their approach to seeking further health information regarding the discussed treatment options (e.g., internet websites, family and friends, support groups); (4) other healthcare professionals were cognizant of their fundamental role in facilitating further information-seeking; and (5) patient and physician discordant perspectives on shared decision making were present. Patient procurement of treatment information and the capacity to use it effectively in conjunction with patient trust in physicians play an important role in the shared decision-making process.

Disparities in Hospice Utilization for Older Cancer Patients Living in the Deep South.

CONTEXT: Hospice utilization is an end-of-life quality indicator. The Deep South has known disparities in palliative care that may affect hospice utilization. OBJECTIVES: The objective of this study was to evaluate the association among Deep South patient and hospital characteristics and hospice utilization. METHODS: This retrospective cohort study evaluated patient and hospital characteristics associated with hospice among Medicare cancer decedents aged ≥65 years in 12 southeastern cancer centers between 2012 and 2015. We examined patient-level characteristics (age, race, gender, cancer type, and received patient navigation) and hospital-level characteristics (board-certified palliative physician, inpatient palliative care beds, and hospice ownership). Outcomes included hospice (within 90 vs. three days of death). Relative risks (RRs) and 95% CIs evaluated the association between patient- and hospital-level characteristics and hospice outcomes using generalized log-linear models with Poisson distribution and robust variance estimates. RESULTS: Of 12,725 cancer decedents, 4142 (33%) did not utilize hospice. "No hospice" was associated with nonwhite (RR 1.24, 95% CI 1.17-1.32) and nonnavigated patients (RR 1.17, 95% CI 1.10-1.25), and those at a hospital with inpatient palliative care beds (RR 1.15, 95% CI 1.10-1.21). "Late hospice" (20%; n = 1458) was associated with being male (RR 1.31, 95% CI 1.19-1.44) and seen at a hospital without inpatient palliative care beds (RR 0.82, 95% CI 0.75-0.90). CONCLUSIONS: Hospice utilization differed by patient and hospital characteristics. Patients who were nonwhite, and nonnavigated, and hospitals with inpatient palliative care beds, were associated with no hospice. Research should focus on ways to improve hospice utilization in Deep South older cancer patients.

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.

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.

Lay navigation across the cancer continuum for older cancer survivors: Equally beneficial for Black and White survivors?

OBJECTIVES: The Patient Care Connect Program (PCCP), through lay navigators' distress assessments and assistance, was shown to lower healthcare utilization and costs in older cancer survivors. PCCP benefits and assistance needs for disadvantaged minorities (e.g., Black) vs. Whites are unknown. MATERIALS AND METHODS: We examined the PCCP impact with retrospective analyses of Medicare claims (2012-2015). Outcomes were quarterly costs and utilization (emergency room (ER), hospitalizations) for navigated and matched survivors. Repeated measures generalized linear models with normal (costs), and Poisson (utilization) distributions assessed differences in trends overall and separately for Blacks and Whites. With distress data for navigated survivors, we assessed high distress (score > 3), ≥1 distress cause (overall, by domain), and ≥ 1 assistance request by minority group. RESULTS: Beneficiaries were: 772 Black and 5350 White navigated, and 770 Black and 5348 White matched survivors. Impact was: i) costs: -$557.5 Blacks (p < .001), -$813.4 Whites (p < .001); ii) ER: Incidence Rate Ratio (IRR) 0.97 Blacks (NS), 0.93 Whites (p < .001); iii) hospitalizations: IRR 0.97 Blacks (NS), 0.91 Whites (p < .001). There was no significant difference in impact across minority groups. No significant differences were found in high distress (29% Black, 25.1% White), ≥1 distress cause (61.6% Black, 57.8% White), or ≥ 1 assistance request (64.5% Black, 59.1% White). Blacks were more likely to have ≥1 distress cause in the Practical domain. CONCLUSION: The PCCP may benefit both Black and White older cancer survivors. Programs should consider the proportion of older survivors with high distress, and the specific needs of minorities.

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.

Factors Associated with Family Caregivers' Confidence in Future Surrogate Decision Making for Persons with Cancer.

Background: Improving family caregiver preparation for surrogate decision making is a critical priority. Objective: Determine a parsimonious set of intrapersonal factors associated with family caregivers' confidence in making future medical decisions for their relatives with cancer. Methods: Cross-sectional mail survey. Family caregivers of Medicare beneficiaries with pancreatic, lung, brain, ovarian, head and neck, hematologic, and stage IV cancers from communities of eight U.S. cancer centers. Participants completed validated measures of their social and mental health, self-care behaviors, coping styles, and surrogate decision-making confidence. Using linear modeling, the Bayesian information criterion was used to identify factors associated with decision-making confidence. A bootstrap approach was used to conduct penalized inference on the selected model coefficients. Model fit validation was assessed with a random forest ensemble. Results: Caregivers (n = 294) were on average 65.5 years old, mostly female (72.8%), and care recipients' spouse/partner (60.2%). The parsimonious set of factors associated with low caregiver decision-making confidence included less engagement in spiritual growth self-care, more use of avoidant coping, low emotional social support, and younger care recipient age (in-sample R2 = 0.22). These factors were also identified by a random forest approach. After overfitting adjustment (shrunken R2 = 0.09), the strongest associations with low surrogate decision-making confidence were low spiritual growth self-care (adjusted standardized B = 0.17, p = 0.005) and high use of avoidant coping (adjusted standardized B = -0.12, p = 0.049). Discussion: Identifying strategies to enhance spiritual growth and reduce avoidant coping may be promising targets for interventions to improve family caregivers' confidence in future surrogate decision making.

Incongruence between women's survey- and interview-determined decision control preferences: A mixed methods study of decision-making in metastatic breast cancer.

OBJECTIVE: Women with metastatic breast cancer face numerous, complex treatment and advance care planning (ACP) decisions. Our aim was to develop a better understanding of women with metastatic breast cancer's decision-making preferences overtime and relative to specific types of decisions. METHODS: Convergent, parallel mixed-methods study. Participants completed the Control Preferences Scale (CPS) and a semi-structured interview of decision-making experiences at enrollment (T1; n = 22) and when facing a decision or 3 months later (T2; n = 19). We categorized women's decision-making experience descriptions into one of the CPS decisional styles and compared them to their CPS response. We constructed an analytic grid that aligned the interview-determined treatment and ACP decisional preferences with the CPS categories at T1 and T2 and calculated Cohen's kappa coefficient and congruence percentages. RESULTS: Participants (n = 22) were White (100%), averaged 62 years, married (54%), retired (45%), and had a bachelor's degree (45%). Congruence between CPS response and interview-determined treatment preferences at T1 was 32% (kappa = 0.083) and 33% (kappa = 0.120) at T2. Congruence between CPS survey response and interview-determined ACP preferences at T1 was 22.7% (kappa =0.092) at T1 and 11% (kappa = 0.011) at T2. CONCLUSIONS: Although women selected a "shared" treatment decision-making style using the CPS validated tool, when interviewed their descriptions generally reflected a passive process in which they followed the oncologists' treatment suggestions. Future research should explore whether the incongruence between stated and actual decision-making style is a function of misinterpreting the CPS choices or a true inconsistency that could lead to adverse consequences such as decisional regret.

Mind-Body Interventions for Individuals With Heart Failure: A Systematic Review of Randomized Trials.

BACKGROUND: The effects of mind-body interventions (MBIs) (eg, Tai Chi, yoga, meditation) for individuals with heart failure (HF) have not been systematically evaluated. METHODS AND RESULTS: We performed a systematic review of randomized controlled trials (RCTs) examining the effects of MBIs in HF. We extracted participant characteristics, MBI procedure, outcomes assessed, and main results of English-language RCTs before October 2016. We identified 24 RCTs (n = 1314 participants) of 9 MBI types: Tai Chi (n = 7), yoga (n = 4), relaxation (n = 4), meditation (n = 2), acupuncture (n = 2), biofeedback (n = 2), stress management (n = 1), Pilates (n = 1), and reflexology (n = 1). Most (n = 22, 95.8%) reported small-to-moderate improvements in quality of life (14/14 studies), exercise capacity (8/9 studies), depression (5/5 studies), anxiety and fatigue (4/4 studies), blood pressure (3/5 studies), heart rate (5/6 studies), heart rate variability (7/9 studies), and B-type natriuretic peptide (3/4 studies). Studies ranged from 4 minutes to 26 weeks and group sizes ranged from 8 to 65 patients per study arm. CONCLUSIONS: Although wide variability exists in the types and delivery, RCTs of MBIs have demonstrated small-to-moderate positive effects on HF patients' objective and subjective outcomes. Future research should examine the mechanisms by which different MBIs exert their effects.

"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.

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.

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.