Developing archetypes for key roles in a pragmatic trial: implementing human-centered design to promote advance care planning in primary care.

Background: Archetypes are representations of a group of people with shared behaviors, attitudes, and characteristics. The design and use of archetypes have potential application to increase partnership and support when embedding and scaling interventions but methodological approaches have not been developed.

Objective: To describe the methodology of designing archetypes for use in a pragmatic trial of advance care planning in the primary care context, SHARING Choices ((NCT04819191).

A meta-synthesis of the cycle of financial strain, coping behaviors and health outcomes across the life course.

Background: The lived experience and impact of financial strain on broad physical and mental health outcomes is important and yet underexplored. Improving our depth of understanding of the relationship between financial strain and health may offer important insights to address this complex phenomenon.

Objective: The primary objective of this study was to conduct a meta-synthesis of existing qualitative literature that investigated or described the relationship between financial strain and health outcomes.

Advance care planning in adults ages 80 years and older with impaired cognition: Using actual conversations to examine best practices.

Introduction: Recommendations for advance care planning (ACP) in persons with cognitive impairment are based on expert input without insight from actual ACP conversations.

Methods: We used thematic analysis to analyze transcripts of ACP conversations for 88 older adults with normal cognition (n = 15), mild cognitive impairment (n = 13), and scores consistent with dementia (n = 60).

Results: Patients with dementia were least verbally active; however, some shared values and identified surrogates.

Advance Care Planning, End-of-Life Preferences, and Burdensome Care: A Pragmatic Cluster Randomized Clinical Trial.

Importance: Primary care is a key setting for advance care planning (ACP).

Objective: To test the effects of a multicomponent primary care-based ACP intervention (SHARING Choices) on documented end-of-life preferences and potentially burdensome care at end of life.

Design, Setting, And Participants: This pragmatic cluster randomized clinical trial in primary care practices from 2 health systems was conducted between March 2021 and April 2022.

Integration of Palliative Care into Heart Failure Care: Consensus-Based Recommendations from the Heart Failure Society of America.

Heart failure (HF) is characterized by significant symptoms, compromised quality of life, frequent hospital admissions, and high mortality rates; palliative care (PC) is, therefore, highly relevant for patients with HF and their clinicians. Multiple guidelines and consensus statements recommend the provision of PC alongside HF management. However, few resources exist to guide the integration of PC into HF care, for both primary PC (provided by HF clinicians in the course of HF care) and specialty PC (provided by PC specialists).

Financial strain measures and associations with adult health: A systematic literature review.

Despite growing attention to other social needs like food and housing insecurity, financial strain, defined as having difficulty making ends meet or lacking money for basic needs, is under-recognized. Inconsistent labels and measures have made the literature difficult to unify. We used many synonyms for financial strain to systematically identify 199 U.

Factors that Facilitate Informal Advance Care Planning Conversations With Family: A Cross-Sectional Survey of Black Adults With Kidney Failure.

Advance care planning in adults with kidney failure has been understudied and limited to written advance directives. Many Black adults prefer informal conversations with family, and yet this form of advance care planning is underexplored in research. In this study, we aimed to identify the multilevel factors that facilitate informal advance care planning with family among Black adults with kidney failure.

A scoping review of global patterns in reporting race, ethnicity, nationality, or religion in palliative care randomized controlled trials: Recommendations for transparency.

Background: Though randomized controlled trials of non-pharmacological palliative care interventions have shown positive outcomes, findings are often generalized with limited consideration for the impact of the influence of race, ethnicity, nationality, or religion on said outcomes.

Aim: To identify trends and gaps in global reporting of racial, ethnic, nationality, and religious demographics in non-pharmacological palliative care randomized controlled trials.

Design: We conducted a scoping review guided by the Joanna Briggs methodology.

Race Differences in Purpose in Life Among Family Caregivers: Findings From the Caregiving Transitions Study.

Family caregiving may affect purpose in life, defined as the sense that life has meaning and intentionality. Few studies have compared caregivers to non-caregivers or examined the characteristics of caregivers associated with purpose in life. Using data from the Caregiving Transitions Study ( = 486), we conducted multiple linear regression analyses to test the effects of caregiver status, age, gender, social network, and physical and mental health on purpose in life.

Feasibility of Using Simulation to Evaluate Implementation Fidelity in an Advance Care Planning Pragmatic Trial.

Traditional methods of fidelity monitoring are not possible in pragmatic trials in real-world clinical settings. We describe our approach to monitoring and reinforcing the fidelity to ACP conversations for a hard-to-reach subpopulation by using standardized patients in a pragmatic trial. We developed standardized patient scenarios grounded in the Respecting Choices First Steps™ Advance Care Planning curriculum to provide an opportunity to reinforce and assess ACP facilitator competency.

Qualitative evaluation of the SHARING Choices trial of primary care advance care planning for adults with and without dementia.

Background: Primary care can be an important setting for communication and advance care planning (ACP), including for those with dementia and their families. The study objective was to explore experiences with a pragmatic trial of a communication and ACP intervention, SHARING Choices, in primary care for older adults with and without dementia.

Methods: We conducted qualitative interviews using tailored semi-structured guides with three groups: ACP facilitators who conducted the intervention; clinicians, managers, and administrators from sites randomized to the intervention; and patients and families who met with ACP facilitators.

Sharing health care wishes among older adults with cognitive impairment in primary care: Results from a randomized controlled trial.

Introduction: Best practices for conducting advance care planning (ACP) among persons with cognitive impairment exist, but evidence-based models are lacking for the primary care setting.

Methods: We tested a remote multicomponent ACP model (SHARE) versus minimally enhanced usual care in 273 person-family dyads from eight primary care practices.

Results: Mean patient age was 88.

A Brief Patient-Recorded Audio File Called TIMS (This Is My Story) Improves Communication and Empathy for Healthcare Teams in the Hospital.

Our objective was to assess the impact of a 4-question patient audio interview (this is my story [TIMS]) on medical staff empathy and communication with hospitalized patients and loved ones. We recorded a 4-question audio interview with patients and posted it to the electronic health record. We used a cross-sectional, mixed methods design to pilot this patient version of the TIMS intervention.

Gender Differences Regarding Palliative Care Consultation Among Persons Hospitalized With Heart Failure.

Context: Palliative care is increasingly recognized as an important aspect of heart failure (HF) management, but data on gender differences regarding palliative care needs are scarce.

Objective: We retrospectively studied patients hospitalized with a primary diagnosis of HF who received an initial palliative care consultation in the Mount Sinai Health System to examine gender differences.

Methods: From electronic health records, we extracted patient information, diagnostic codes, and the palliative care consult assessment which included the Karnofsky performance status (KPS) and the Edmonton symptom assessment scale (ESAS).

Predictors of Supportive Care Needs During Serious Illness: Cross-sectional Analysis of Reservation-Based Informal Caregivers.

Native Americans (Indigenous Americans) have high rates of serious illness in the United States. Informal caregivers are heavily relied on in caring for patients in low-resource settings. The needs of caregivers residing on reservations are sorely underreported.

Palliative Care Research and Clinical Practice Priorities in the United States as Identified by an Interdisciplinary Modified Delphi Approach.

Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. To identify and rank palliative care research and clinical practice priority areas through expert consensus.

The Association of Unmet Palliative Care Needs and Physical Frailty With Clinical Outcomes: A Prospective Study of Adults With Heart Failure.

Background: People with heart failure, particularly those who are physically frail, experience complex needs that can be addressed by palliative care (PC). However, we have a limited understanding of how the intersection of unmet PC needs and physical frailty contributes to health-related quality of life (HRQOL) and risk for hospitalization or mortality.

Objective: In this study, we sought to examine the association of unmet PC needs and physical frailty with clinical outcomes (baseline HRQOL and hospitalizations or mortality at 6 months).

Relationship Status and Quality Are Associated With Perceived Benefits of Caregiving for People With Heart Failure.

Background: "Benefit finding" is a strengths-based strategy for coping with medical illness that may be particularly useful for caregivers of people with heart failure given the highly fluctuating disease course.

Objective: The aim of this study was to investigate benefit finding's association with the caregiver-care recipient relationship, depression, and burden at baseline and longitudinally.

Methods: This is a longitudinal observational study of caregivers' benefit finding, relationship quality, depression, and burden.

Promising Impact of Telenovela Intervention for Caregivers of Hospice Patients: A Pilot Study.

Background: Hospice family caregivers (HFCGs) support the needs of their loved ones but are at risk of developing distress and anxiety. NOVELA is a four-chapter telenovela-style educational video to support topics related to hospice caregiving. Telehealth visits are scheduled in 4 weekly sessions consisting of a chapter and subsequent discussion with an interventionist.

Caregivers' Contributions to Heart Failure Self-care: An Updated Systematic Review.

Background: A previous systematic review reporting the contributions of informal, unpaid caregivers to patient heart failure (HF) self-care requires updating to better inform research, practice, and policy.

Objective: The aim of this study was to provide an updated review answering the questions: (1) What specific activities do informal caregivers of adults with HF take part in related to HF self-care? (2) Have the activities that informal caregivers of adults with HF take part in related to HF self-care changed over time? (3) What are the gaps in the science?

Methods: This review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, EMBASE, and Cochrane CENTRAL databases were searched.

Identification of Fatigue Subtypes and Their Correlates in Prevalent Heart Failure: A Secondary Analysis of the Atherosclerosis Risk in Communities Study.

Background: Among patients with heart failure (HF), fatigue is common and linked to quality of life and functional status. Fatigue is hypothesized to manifest as multiple types, with general and exertional components. Unique subtypes of fatigue in HF may require differential assessment and treatment to improve outcomes.

Acceptability and Feasibility of a Pain and Depressive Symptoms Management Intervention in Middle-Aged and Older African American Women.

Background And Objectives: The intersection of race, gender, and age puts older African American women at high risk of experiencing comorbid pain and depressive symptoms. The purpose of this study was to assess the feasibility and acceptability of a 12-week behavioral activation intervention to target self-selected goals related to pain and depressive symptoms in middle-aged and older African American women.

Research Design And Methods: This randomized waitlist control study included 34 self-identified African American women, 50 years of age or older, with moderate-to-severe chronic pain and depressive symptoms.