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 88.0 years, 85 (31.1%) were Black/Latino; 189 (69.2%) had moderate-to-severe cognitive impairment. Most (101/145; 69.6%) intervention dyads engaged in ACP. At follow-up, no treatment effect was observed for care partner-reported quality of communication about end-of-life care at 6 or 12 months, but intervention patients reported better quality of communication about end-of-life care at 12 months. Intervention care partners and patients reported greater readiness to engage in ACP at 6 and 12 months, respectively, and increased completion of key aspects of ACP. DISCUSSION: SHARE supported key aspects of ACP processes and communication about end-of-life care. HIGHLIGHTS: Primary care-based models of ACP for persons with dementia are lacking. Involving persons with cognitive impairment in remote ACP is feasible with care partner involvement. Results indicate benefit for aspects of ACP processes and communication about end-of-life care.

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. Therefore, our objective was to examine relationships between facilitators (communal mastery, cultural identity, and spirituality) and barriers (depression, anxiety, stress, and burden) with supportive care needs among adult informal caregivers in 1 reservation-based community. A cross-sectional survey was distributed in July and August 2022 as part of a larger multimethod, community-based participatory research study. We used descriptive statistics and linear regression models to examine relationships against the primary outcome, the Supportive Care Needs Assessment Tool for Indigenous People. Overall, 127 participants were included; most were female (n = 92, 72.4%), were between 30 and 49 years (n = 57, 44.9%), and had 6 months or less of caregiving experience (n = 41, 32.5%). Higher depression, anxiety, stress, and burden were significantly associated with higher Supportive Care Needs Assessment Tool for Indigenous People scores. Overall, mental health is a significant barrier that may indicate greater supportive care needs among informal caregivers, although further work is needed to differentiate symptoms and their impact on caregiving from a cultural perspective.

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. We used thematic analysis to identify and synthesize emergent themes based on key Consolidated Framework for Implementation Research concepts and Proctor's Implementation Outcomes, triangulating the three groups' perspectives. RESULTS: We identified five key themes. For acceptability, perceptions of the intervention were mostly positive, although some components were not generally implemented. For adoption, respondents perceived that ACP facilitators mainly focused on conducting ACP, although facilitators often did not implement the ADRD and family engagement aspects with the ACP. For relational connections, ACP facilitator-practice and clinician communication and engagement were key to how the intervention was implemented. For adaptability, ACP facilitators and health systems adapted how the ACP facilitation component was implemented to local preferences and over time, given the pragmatic nature of the trial. And, for sustainability, ACP facilitators and clinicians/managers/facilitators were positive that the intervention should be continued but noted barriers to its sustainability. Patients and families generally did not recall the intervention. CONCLUSIONS: ACP facilitators and clinicians, managers, and administrators had positive perceptions of the ACP facilitator component of the intervention in this pragmatic trial with adaptation to local preferences. However, engaging those with dementia and families was more challenging in the implementation of this intervention.

Patient-Centered Adult Cardiovascular Care: A Scientific Statement From the American Heart Association.

Patient-centered care is gaining widespread acceptance by the medical and lay communities and is increasingly recognized as a goal of high-quality health care delivery. Patient-centered care is based on ethical principles and aims at establishing a partnership between the health care team and patient, family member, or both in the care planning and decision-making process. Patient-centered care involves providing respectful care by tailoring management decisions to patients' beliefs, preferences, and values. A collaborative care approach can enhance patient engagement, foster shared decision-making that aligns with patient values and goals, promote more personalized and effective cardiovascular care, and potentially improve patient outcomes. The objective of this scientific statement is to inform health care professionals and stakeholders about the role and impact of patient-centered care in adult cardiovascular medicine. This scientific statement describes the background and rationale for patient-centered care in cardiovascular medicine, provides insight into patient-oriented medication management and patient-reported outcome measures, highlights opportunities and strategies to overcome challenges in patient-centered care, and outlines knowledge gaps and future directions.

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. Eligible studies involved an informal, unpaid caregiver of an adult with HF as a study variable or participant. Caregiving activities were benchmarked using the theory of self-care in chronic illness. RESULTS: Two thousand one hundred fifty-four research reports were identified, of which 64 met criteria. Caregivers' contributions occurred in self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than activities performed for the patient. Change over time involved the 3 domains differentially. Gaps include ambiguous self-care activity descriptions, inadequate caregiving time quantification, and underrepresented self-care monitoring, supportive, and communication activities. CONCLUSIONS: Newly identified caregiver-reported activities support updating the theory of self-care in chronic illness to include activities currently considered ancillary to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine task difficulty and burden, and identify caregiver self-care strategy and education needs. Exposing the hidden work of caregiving is essential to inform policy and practice.

"Caregiving is teamwork " Information sharing in home care for older adults with disabilities living in the community.

AIM: We examined information sharing between direct care workers, family caregivers, and clinicians involved in the care of older adults with disabilities. METHODS: Semi-structured interviews with N = 11 representatives of home care agencies ("residential service agencies" in Maryland). RESULTS: Work system and process characteristics relevant to information sharing included: (1) using electronic management systems and patient portals to communicate within agencies and with clinicians, (2) implementing tools to gather information about client goals, preferences, and routines, and (3) relying on family members for information about clients' needs. Participants did not report differences in dementia-related care coordination; however, dementia-related adaptations involved additional considerations for navigating relationships with family and standardizing processes to communicate with clinicians. CONCLUSION: Findings highlight care demands experienced by direct care workers and support calls to better coordinate information sharing between interdisciplinary care teams.

SHARING Choices: Lessons Learned from a Primary-Care Focused Advance Care Planning Intervention.

BACKGROUND: Few advance care planning (ACP) interventions have been scaled in primary care. PROBLEM: Best practices for delivering ACP at scale in primary care do not exist and prior efforts have excluded older adults with Alzheimer's Disease and Related Dementias (ADRD). INTERVENTION: SHARING Choices (NCT#04819191) is a multicomponent cluster-randomized pragmatic trial conducted at 55 primary care practices from two care delivery systems in the Mid-Atlantic region of the U.S. We describe the process of implementing SHARING Choices within 19 practices randomized to the intervention, summarize fidelity to planned implementation, and discuss lessons learned. OUTCOMES: Embedding SHARING Choices involved engagement with organizational and clinic-level partners. Of 23,220 candidate patients, 17,931 outreach attempts by phone (77.9%) and the patient portal (22.1%) were made by ACP facilitators and 1215 conversations occurred. Most conversations (94.8%) were less than 45 minutes duration. Just 13.1% of ACP conversations included family. Patients with ADRD comprised a small proportion of patients who engaged in ACP. Implementation adaptations included transitioning to remote modalities, aligning ACP outreach with the Medicare Annual Wellness Visit, accommodating primary care practice flexibility. LESSONS LEARNED: Study findings reinforce the value of adaptable study design; co-designing workflow adaptations with practice staff; adapting implementation processes to fit the unique needs of two health systems; and modifying efforts to meet health system goals and priorities.

Palliative Care Needs of Physically Frail Community-Dwelling Older Adults With Heart Failure.

CONTEXT: Physical frailty is emerging as a potential "trigger" for palliative care (PC) consultation, but the PC needs of physically frail persons with heart failure (HF) in the outpatient setting have not been well described. OBJECTIVES: This study describes the PC needs of community dwelling, physically frail persons with HF. METHODS: We included persons with HF ≥50 years old who experienced ≥1 hospitalization in the prior year and excluded those with moderate/severe cognitive impairment, hospice patients, or non-English speaking persons. Measures included the FRAIL scale (0-5: 0 = robust, 1-2 = prefrail, 3-5 = frail) and the Integrated Palliative Outcome Scale (IPOS) (17 items, score 0-68; higher score = higher PC needs). Multiple linear regression tested the association between frailty group and palliative care needs. RESULTS: Participants (N = 286) had a mean age of 68 (range 50-92) were majority male (63%) and White (68%) and averaged two hospitalizations annually. Most were physically frail (44%) or prefrail (41%). Mean PC needs (IPOS) score was 19.7 (range 0-58). On average, participants reported 5.86 (SD 4.28) PC needs affecting them moderately, severely, or overwhelmingly in the last week. Patient-perceived family/friend anxiety (58%) weakness/lack of energy (58%), and shortness of breath (47%) were the most prevalent needs. Frail participants had higher mean PC needs score (26) than prefrail (16, P < 0.001) or robust participants (11, P < 0.001). Frail participants experienced an average of 8.32 (SD 3.72) moderate/severe/overwhelming needs compared to prefrail (4.56, SD 3.77) and robust (2.39, SD 2.91) participants (P < 0.001). Frail participants reported higher prevalence of weakness/lack of energy (83%), shortness of breath (66%), and family/friend anxiety (69%) than prefrail (48%, 39%, 54%) or robust (13%, 14%, 35%) participants (P < 0.001). CONCLUSION: Physically frail people with HF have higher unmet PC needs than those who are nonfrail. Implementing PC needs and frailty assessments may help identify vulnerable patients with unmet needs requiring further assessment and follow-up.

Telemedicine Services for the Delivery of Specialty Home-Based Neurological Care.

Introduction: The COVID-19 pandemic accelerated the adoption of telemedicine services for the delivery of outpatient neurological care. We sought to understand perceptions and the acceptance of this technology by neurology specialists during the proliferation of telemedicine services into their outpatient practices. Methods: We adapted the Telehealth Usability Questionnaire for neurological care via telemedicine. Our 29-item questionnaire evaluated the telemedicine system in three domains: quality of the telemedicine platform, ability to conduct a sufficient neurological examination, and overall system confidence. The survey was distributed to 88 clinical neurology faculty in the Johns Hopkins Health System. Responses were collapsed into "Favorable," "Neutral," and "Unfavorable." Within each domain, responses to individual questions were analyzed by neurology subspecialty using descriptive statistics. Results: We received completed surveys from 46 of the 88 (52%) neurology faculty. Of those, most reported favorable comfort with the current platform (98%), ease of use (73%), and quality (80%). However, responses indicated only average ability to troubleshoot telemedicine platform issues when they occurred (55%) and to complete an entire neurological examination (52%). Subspecialty comparisons revealed differences in diagnostic confidence; 30% of neuromuscular faculty indicated that they could make accurate neurological diagnoses through a tele-examination as opposed to ≥84% for other specialties. Conclusions: The use of telemedicine services for the delivery of outpatient neurological care is feasible and acceptable to most neurologists, although diagnostic confidence compared with in-person visits may be reduced and differs by subspecialty. Improvements in technological infrastructure and care models are needed to advance telemedicine neurological care delivery. Our data also suggest that a larger multicenter investigation of telemedicine use post-pandemic would be useful.

Methods and operational aspects of human-centred design into research processes for individuals with multiple chronic conditions: A survey study.

AIM: To examine ways in which human-centred design was integrated into a nursing school's research processes involving individuals with multiple chronic conditions. DESIGN: Cross-sectional survey study. METHODS: Three surveys were sent out, with surveys 1 and 2 involving faculty who had worked closely with design strategists and survey 3 as a school-wide survey eliciting experience with human-centred design, respectively. RESULTS: Survey respondents (n = 7 for surveys 1 and 2 and n = 36 for survey 3) had no or minimal experience with human-centred design. Faculty respondents indicated it helped engaging various stakeholders, particularly in intervention development. Key lessons learned included: (1) the importance of designer involvement from study conception, (2) distinguishing a design strategist's skillset from strictly visual design, (3) challenges during the ethical review processes, and (4) sustainability of resources. The dynamic approach of human-centred design has benefited our efforts to advance the science of caring for individuals with multiple chronic conditions.

Doctor of nursing practice project: Key challenges and possible solutions.

BACKGROUND: To thoughtfully and strategically embed the updated Essentials into Doctor of Nursing Practice (DNP) curricula, it is important to understand the current landscape of the DNP project. METHOD: This discussion focuses on DNP project processes, providing a summary of the core challenges and solutions for project design, implementation and evaluation stages. FINDINGS: Main challenges include: Difficulty defining a practice gap or absent training in protocol development for quality improvement (QI) projects (design stage); difficulty identifying and accessing project sites or practice mentors and limited academic faculty support (implementation stage); and a lack of common criteria for DNP project evaluation or unclear choices and use of QI measurement tools (evaluation stage). Scholarly Writing, Faculty Preparation, and Sustainability were overarching challenges hindering successful completion of DNP projects. Possible solutions included training and support for faculty, toolkits and practical strategies to support planning and organization. CONCLUSION: The DNP, as an evolving degree, brings its own set of challenges for students, academic and clinical settings, faculty and administrators. Developing effective partnership of students, faculty, and healthcare systems is a key solution in helping students develop and demonstrate DNP competencies, and nursing institutions and leadership should explore further ways to fortify these partnerships.

SHARING Choices: Design and rationale for a pragmatic trial of an advance care planning intervention for older adults with and without dementia in primary care.

BACKGROUND: Advance care planning (ACP) and involving family are particularly important in dementia, and primary care is a key setting. The purpose of this trial is to examine the impact and implementation of SHARING Choices, an intervention to improve communication for older adults with and without dementia through proactively supporting ACP and family engagement in primary care. METHODS: We cluster-randomized 55 diverse primary care practices across two health systems to the intervention or usual care. SHARING Choices is a multicomponent intervention that aims to improve communication through patient and family engagement in ACP, agenda setting, and shared access to the patient portal for all patients over 65 years of age. The primary outcomes include documentation of an advance directive or medical orders for life-sustaining treatment in the electronic health record (EHR) at 12 months for all patients and receipt of potentially burdensome care within 6 months of death for the subgroup of patients with serious illness. We plan a priori sub-analysis for patients with dementia. Data sources include the health system EHRs and the Maryland health information exchange. We use a mixed-methods approach to evaluate uptake, fidelity and adaptation of the intervention and implementation facilitators and barriers. CONCLUSIONS: This cluster-randomized pragmatic trial examines ACP with a focus on the key population of those with dementia, implementation in diverse settings and innovative approaches to trial design and outcome abstraction. Mixed-methods approaches enable understanding of intervention delivery and facilitators and barriers to implementation in rapidly changing health care systems. CLINICALTRIALS: gov Identifier: NCT04819191.

"We're all we got is each other": Mixed-methods analysis of patient-caregiver dyads' management of heart failure.

BACKGROUND: Individuals living with heart failure often require informal caregiving assistance for optimal self-care maintenance. The influence of caregiver burden and resilience on dyadic congruence is not well understood. OBJECTIVE: To compare how dyadic congruence is influenced by level of burden and resilience expressed by caregivers of patients with heart failure. METHODS: Mixed-methods analysis of individuals with heart failure and their caregivers, focusing on measures of caregiver burden (Zarit Burden Interview) and resilience (Brief Resilience Scale). Data were integrated using the Heart Failure Care Dyadic Typology. RESULTS: Twelve dyads (n=24 participants) were classified as Type II (n=7) and Type III (n=5) dyads. Among Type II dyads, average caregiver burden was 19.43 (± 13.89) and resilience was 3.16 (± 1.04). For Type III dyads, average caregiver burden was 3.80 (± 4.27) and resilience 4.07 (± 1.36), respectively. Two key themes were derived: 1) caregivers' tendency to take the lead, and 2) the usefulness of cognitive reframing. Data integration elucidated that theme 1 was more common among Type II dyads and those with higher burden, and theme 2 was more prevalent among Type III dyads and those with higher resilience. CONCLUSION: Findings highlight important variances in how dyads collectively manage heart failure. Future inquiry should involve tailored intervention development to bolster informal caregivers' quality of life and ability to better support patients throughout their heart failure trajectory.