Association of multimorbidity with guideline-directed medical therapy intensification in heart failure: Findings from the EPIC-HF trial.

A potential contributor to the suboptimal rates of guideline directed medical therapy (GDMT) prescribing for heart failure with reduced ejection fraction (HFrEF) is the burden of multimorbidity in patients with HFrEF. We examined the effect of multimorbidity on GDMT prescription in the EPIC-HF trial, finding that multimorbidity was associated with decreased likelihood of GDMT intensification. Further study is needed to guide treatment in high-risk, multimorbid patients with HFrEF.

Peeking under the Hood of Job Stress: How Men and Women's Stress Levels Vary by Typologies of Job Quality and Family Composition.

Changes to work and family norms and polices over the last several decades have reshaped both the job quality and the nature of job and family formation in the United States. Neoliberal policies have generated a slew of flexible but precarious working conditions; labor force participation is now the modal path for all genders regardless of parental or marital status. Leveraging data on 3,419 working men and women from the National Longitudinal Study of Adolescent to Adult Health, I use granular measures of job quality to identify distinct job quality-family typologies among both men and women in early adulthood to midadulthood to examine differential implications for psychological and physiological stress. I find four types among men and three among women. Family formation and job prestige appear to differentiate stressful from nonstressful jobs for men; stress outcomes for women are more complex, with job characteristics such as flexibility playing a greater role.

Trust and activation in defining patient-clinician interactions for chronic disease management.

OBJECTIVE: Patient-clinician relationship quality and patient activation can both improve patient health outcomes, but prior work has primarily examined these factors independently. We examine how these two factors shape patient behavior in the setting of ambulatory heart failure care, where serial intensification of multiple medications is central to chronic care delivery. METHODS: We used content analysis to analyze 22 in-depth patient interviews and 32 audio-recorded clinic visits collected for the EPIC-HF Trial. This was a secondary analysis providing qualitative depth to the parent RCT. RESULTS: We identified a typology of patient activation and patient-clinician relationship quality, with four types: Supported, Skeptical, Deferential, and Unempowered. Types were sensitive to time and context; a given patient might occupy multiple types throughout the course of a single clinic visit. The effects of patient-activation and the patient-clinician relationship appeared to be bidirectional, with each influencing the other. CONCLUSION: Patient-clinician relationship quality and patient activation are dominant in shaping clinical interactions and disease management. This interaction is dynamic, and patients may change types depending on time, place, or context. PRACTICE IMPLICATIONS: These findings suggest that both patient activation and high relationship quality work together to create a supportive environment for chronic care, where intermittent skepticism, deference or empowerment may be useful at particular times or in certain situations.

An Electronically Delivered Patient-Activation Tool for Intensification of Medications for Chronic Heart Failure With Reduced Ejection Fraction: The EPIC-HF Trial.

BACKGROUND: Major gaps exist in the routine initiation and dose up-titration of guideline-directed medical therapies (GDMT) for patients with heart failure with reduced ejection fraction. Without novel approaches to improve prescribing, the cumulative benefits of heart failure with reduced ejection fraction treatment will be largely unrealized. Direct-to-consumer marketing and shared decision making reflect a culture where patients are increasingly involved in treatment choices, creating opportunities for prescribing interventions that engage patients. METHODS: The EPIC-HF (Electronically Delivered, Patient-Activation Tool for Intensification of Medications for Chronic Heart Failure with Reduced Ejection Fraction) trial randomized patients with heart failure with reduced ejection fraction from a diverse health system to usual care versus patient activation tools-a 3-minute video and 1-page checklist-delivered electronically 1 week before, 3 days before, and 24 hours before a cardiology clinic visit. The tools encouraged patients to work collaboratively with their clinicians to "make one positive change" in heart failure with reduced ejection fraction prescribing. The primary endpoint was the percentage of patients with GDMT medication initiations and dose intensifications from immediately preceding the cardiology clinic visit to 30 days after, compared with usual care during the same period. RESULTS: EPIC-HF enrolled 306 patients, 290 of whom attended a clinic visit during the study period: 145 were sent the patient activation tools and 145 were controls. The median age of patients was 65 years; 29% were female, 11% were Black, 7% were Hispanic, and the median ejection fraction was 32%. Preclinic data revealed significant GDMT opportunities, with no patients on target doses of ß-blocker, sacubitril/valsartan, and mineralocorticoid receptor antagonists. From immediately preceding the cardiology clinic visit to 30 days after, 49.0% in the intervention and 29.7% in the control experienced an initiation or intensification of their GDMT (P=0.001). The majority of these changes were made at the clinician encounter itself and involved dose uptitrations. There were no deaths and no significant differences in hospitalization or emergency department visits at 30 days between groups. CONCLUSIONS: A patient activation tool delivered electronically before a cardiology clinic visit improved clinician intensification of GDMT. Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT03334188.

Show Me the Money: Patients' Perspectives on a Decision Aid for Sacubitril/Valsartan Addressing Out-of-Pocket Cost.

BACKGROUND: Out-of-pocket medication costs for patients who have heart failure with reduced ejection fraction may be an important part of shared decision-making, but cost has generally been excluded from clinical discussions. This study reports patients' perspectives on a decision aid for sacubitril/valsartan that explicitly addresses out-of-pocket costs. METHODS: Structured, in-depth interviews were conducted with 20 patients with heart failure with reduced ejection fraction from 2 medical centers to elicit their views on a publicly available decision aid for sacubitril/valsartan that explicitly incorporates considerations related to out-of-pocket costs. Qualitative descriptive analysis was conducted. RESULTS: Key themes identified were general enthusiasm for decision aids for medication decisions, openness on the part of patients to incorporation of cost into decision-making and the decision aid, requests for greater specificity regarding patient-specific cost, and challenges communicating evidence of benefit in a way that allows patients to make cost-benefit analyses for themselves. Patients also raised questions regarding logistical challenges of incorporating a decision aid into the normal clinical and decision-making workflow. CONCLUSIONS: Patients were receptive to the inclusion of out-of-pocket cost as relevant in a decision aid for sacubitril/valsartan. Key challenges to effective integration of cost in these decisions include developing mechanisms for acquiring reliable patient-specific cost estimates and addressing patients' difficulties (and sometimes skepticism) applying trial evidence to their own situation. In addition, implementation strategies are important to develop to facilitate decision aid integration for routine medical decisions into clinic workflow.

Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats.

BACKGROUND: Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. METHODS: The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. RESULTS: Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression, and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely on relationships to meet evolving patient needs. CONCLUSIONS: In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.

An Electronically delivered, Patient-activation tool for Intensification of medications for Chronic Heart Failure with reduced ejection fraction: Rationale and design of the EPIC-HF trial.

BACKGROUND: Heart failure with reduced ejection fraction (HFrEF) benefits from initiation and intensification of multiple pharmacotherapies. Unfortunately, there are major gaps in the routine use of these drugs. Without novel approaches to improve prescribing, the cumulative benefits of HFrEF treatment will be largely unrealized. Direct-to-consumer marketing and shared decision making reflect a culture where patients are increasingly involved in treatment choices, creating opportunities for prescribing interventions that engage patients. HYPOTHESIS: Encouraging patients to engage providers in HFrEF prescribing decisions will improve the use of guideline-directed medical therapies. DESIGN: The Electronically delivered, Patient-activation tool for Intensification of Chronic medications for Heart Failure with reduced ejection fraction (EPIC-HF) trial randomizes patients with HFrEF to usual care versus patient-activation tools-a 3-minute video and 1-page checklist-delivered prior to cardiology clinic visits that encourage patients to work collaboratively with their clinicians to intensify HFrEF prescribing. The study assesses the effectiveness of the EPIC-HF intervention to improve guideline-directed medical therapy in the month after its delivery while using an implementation design to also understand the reach, adoption, implementation, and maintenance of this approach within the context of real-world care delivery. Study enrollment was completed in January 2020, with a total 305 patients. Baseline data revealed significant opportunities, with <1% of patients on optimal HFrEF medical therapy. SUMMARY: The EPIC-HF trial assesses the implementation, effectiveness, and safety of patient engagement in HFrEF prescribing decisions. If successful, the tool can be easily disseminated and may inform similar interventions for other chronic conditions.

Conflicting Perspectives on the Value of Neprilysin Inhibition in Heart Failure Revealed During Development of a Decision Aid Focusing on Patient Costs for Sacubitril/Valsartan.

BACKGROUND: Despite concerns about rising costs in health care, cost is rarely an issue discussed by patients and clinicians when making treatment decisions in a clinical setting. This study aimed to understand stakeholder perspectives on a patient decision aid (PtDA) meant to help patients with heart failure choose between a generic and relatively low-cost heart failure medication (ACE [angiotensin-converting enzyme] inhibitor or angiotensin II receptor blocker) and a newer, but more expensive, heart failure medication (angiotensin II receptor blocker neprilysin inhibitor). METHODS AND RESULTS: Feedback on the PtDA was solicited from 26 stakeholders including patients, clinicians, and the manufacturer. Feedback was recorded and discussed among development team members until consensus regarding both the interpretation of the data and the appropriate changes to the PtDA was reached. Stakeholders found the PtDA sufficient in clarifying the different treatment options for heart failure. However, patients, physicians, and the manufacturer had different opinions on the importance of highlighting cost in a PtDA. Patients indicated issues of cost were crucial to the decision while physicians and manufacturers expressed that the cost issue was secondary and should be de-emphasized. CONCLUSIONS: The stratified perspectives on the role of cost in medical decision-making expressed by our participants underscore the importance and challenge of having clear, frank discussions during clinic visits about treatment cost and perceived value.

Decision Aid Implementation among Left Ventricular Assist Device Programs Participating in the DECIDE-LVAD Stepped-Wedge Trial.

Background. Despite demonstrated efficacy, patient decision aids (DAs) are rarely used in clinical practice in the absence of coverage mandates. Deciding whether to pursue a left ventricular assist device (LVAD) is a major, preference-sensitive decision-ideal for exploring implementation of a DA. Methods. We conducted a type II effectiveness-implementation hybrid trial at 6 LVAD programs using a stepped-wedge cluster-randomized design. Using the RE-AIM framework, we collected both quantitative and qualitative outcomes, including a checklist collected by study staff for each enrolled patient regarding DA use and interviews with LVAD program clinicians preintervention, 6 months postintervention, and at the conclusion of the study. Results. From June 2015 to January 2017, 248 patients and their caregivers were enrolled. A total of 69 interviews were conducted with 48 clinicians at 3 time points. The DA reached 95% of eligible patients. Adoption was 100%, as all sites approached agreed to participate in the trial. Interviews revealed several themes related to the implementation of the DA: clinicians had a strong desire to ensure patients were informed and embraced the DA. Despite this, they reported communication challenges among their team that impeded implementation. Five of the 6 sites have maintained use of the DA following the trial; 1 site reported concerns about decreased procedural volume with use of the DA as a reason for discontinuation. Conclusions. In this hybrid trial, a DA for patients considering LVADs and their caregivers demonstrated high reach. Adoption and implementation were facilitated by a strong desire to ensure that patients were well informed. Future dissemination research and practice should attend to concerns about procedure volume and coverage mandates and facilitate ongoing communication at sites using the DA.

Content Analysis of Negative Online Reviews of Hospice Agencies in the United States.

Importance: As online reviews of health care become increasingly integral to patient decision-making, understanding their content can help health care practices identify and address patient concerns. Objective: To identify the most frequently cited complaints in negative (ie, 1-star) online reviews of hospice agencies across the United States. Design, Setting, and Participants: This qualitative study conducted a thematic analysis of online reviews of US hospice agencies posted between August 2011 and July 2019. The sample was selected from a Hospice Analytics database. For each state, 1 for-profit (n = 50) and 1 nonprofit (n = 50) hospice agency were randomly selected from the category of extra-large hospice agencies (ie, serving >200 patients/d) in the database. Data analysis was conducted from January 2019 to April 2019. Main Outcomes and Measures: Reviews were analyzed to identify the most prevalent concerns expressed by reviewers. Results: Of 100 hospice agencies in the study sample, 67 (67.0%) had 1-star reviews; 33 (49.3%) were for-profit facilities and 34 (50.7%) were nonprofit facilities. Of 137 unique reviews, 68 (49.6%) were for for-profit facilities and 69 (50.4%) were for nonprofit facilities. A total of 5 themes emerged during the coding and analytic process, as follows: discordant expectations, suboptimal communication, quality of care, misperceptions about the role of hospice, and the meaning of a good death. The first 3 themes were categorized as actionable criticisms, which are variables hospice organizations could change. The remaining 2 themes were categorized as unactionable criticisms, which are factors that would require larger systematic changes to address. For both for-profit and nonprofit hospice agencies, quality of care was the most frequently commented-on theme (117 of 212 comments [55.2%]). For-profit hospice agencies received more communication-related comments overall (34 of 130 [26.2%] vs 9 of 82 [11.0%]), while nonprofit hospice agencies received more comments about the role of hospice (23 of 33 [69.7%] vs 19 of 31 [61.3%]) and the quality of death (16 [48.5%] vs 12 [38.7%]). Conclusions and Relevance: Regarding actionable criticisms, hospice agencies could examine their current practices, given that reviewers described these issues as negatively affecting the already difficult experience of losing a loved one. The findings indicated that patients and their families, friends, and caregivers require in-depth instruction and guidance on what they can expect from hospice staff, hospice services, and the dying process. Several criticisms identified in this study may be mitigated through operationalized, explicit conversations about these topics during hospice enrollment.

"It's Like a Death Sentence but It Really Isn't" What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions.

BACKGROUND: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making. OBJECTIVES: To understand the decisional needs of patients and families making decisions about hospice care. METHODS: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. RESULTS: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for? DISCUSSION: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.

Schools Influence Adolescent E-Cigarette use, but when? Examining the Interdependent Association between School Context and Teen Vaping over time.

Schools are important contexts for adolescent health and health-risk behaviors, but how stable is this relationship? We develop a conceptual model based on Ecological Systems Theory describing the changing role of schools for adolescent health outcomes-in this case, teen e-cigarette use. To examine this change, we fit Bayesian multilevel regression models to two-year intervals of pooled cross-sectional data from the 2011-2017 U.S. National Youth Tobacco Survey, a school-based study of the nicotine use behaviors of roughly 65,000 middle and high school students (49.5% female; 41.1% nonwhite; x̄ age of 14.6 ranging from 9 to 18) from over 700 schools. We hypothesized that school-level associations with student e-cigarette use diminished over time as the broader popularity of e-cigarettes increased. Year-specific variance partitioning coefficients (VPC) derived from the multilevel models indicated a general decrease in the extent to which e-cigarette use clusters within specific schools, suggesting that students across schools became more uniform in their propensity to vape over the study period. This is above and beyond adjustments for personal characteristics and vicarious exposure to smoking via friends and family. Across all years, model coefficients indicate a positive association between attending schools where vaping is more versus less common and student-level odds of using e-cigarettes, suggesting that school contexts are still consequential to student vaping, but less so than when e-cigarettes were first introduced to the US market. These findings highlight how the health implications of multiply-embedded ecological systems like schools shift over time with concomitant changes in other ecological features including those related to policy, culture, and broader health practices within society. Though not uniformly reported in multilevel studies, variance partitioning coefficients could be used more thoughtfully to empirically illustrate how the influence of multiple developmentally-relevant contexts shift in their influence on teen health over time.