Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

INTRODUCTION: People with suspected Alzheimer's disease and related dementias (ADRD) and their families experience a burdensome process while seeking a diagnosis. These challenges are problematic in the most common dementia syndromes, but they can be even more distressing in rarer, atypical syndromes such as rapidly progressive dementias (RPDs), which can be fatal within months from onset. This study is an examination of the diagnostic journey experience from the perspective of caregivers of people who died from the prototypic RPD, sporadic Creutzfeldt-Jakob Disease (sCJD). METHODS: eIn this mixed-methods study, qualitative data were drawn from interviews with former caregivers of 12 people who died from sCJD. Chart review data were drawn from research and clinical chart data about the person with sCJD. Data were analyzed by a multidisciplinary research team using qualitative and descriptive statistical analysis. RESULTS: We identified 4 overarching themes that characterized the experience of the diagnostic journey in sCJD: clinician knowledge, clinician communication, experiences of uncertainty, and the caregiver as advocate. We also identified 4 phases along the diagnostic journey: recognition, the diagnostic workup, diagnosis, and post-diagnosis. Sub-themes within each phase include struggles to recognize what is wrong, complex processes of testing and referrals, delay and disclosure of diagnosis, and access to resources post-diagnosis. CONCLUSIONS: Findings suggest that more work is needed to improve clinician diagnostic knowledge and communication practices. Furthermore, caregivers need better support during the diagnostic journey. What we learn from studying sCJD and other RPDs is likely applicable to other more common dementias.

Antibias Efforts in United States Maternity Care: A Scoping Review of the Publicly Funded Health Equity Intervention Pipeline.

Antibias training is increasingly identified as a strategy to reduce maternal health disparities. Evidence to guide this work is limited. We conducted a community-guided scoping review to characterize new antibias research. Four of 508 projects met our criteria: US-based, publicly funded, initiated from January 1, 2018 to June 30, 2022, and featuring an intervention to reduce bias or racism in maternal health care providers. Training was embedded in multicomponent interventions in 3 projects, limiting its evaluation as a stand-alone intervention. Major public funders have sponsored few projects to advance antibias training research in maternal health. More support is needed to develop a rigorous and scalable evidence base.

Characteristics of people with dementia lost to follow-up from a dementia care center.

OBJECTIVE: To identify the prevalence and characteristics of people living with dementia (PLWD) lost to follow-up (LTFU) from a specialized dementia care clinic and to understand factors influencing patient follow-up status. METHODS: We conducted a retrospective chart review of PLWD seen at a dementia care clinic 2012-2017 who were deceased as of 2018 (n = 746). Participants were evaluated for follow-up status at the time of death. Generalized linear regression was used to analyze demographic and diagnostic characteristics by follow-up status. Text extracted from participant medical records was analyzed using qualitative content analysis to identify reasons patients became LTFU. RESULTS: Among PLWD seen at a dementia care clinic, 42% became LTFU before death, 39% of whom had chart documentation describing reasons for loss to follow-up. Increased rates of LTFU were associated with female sex (risk ratio 1.27, [95% confidence interval 1.09-1.49]; p = 0.003), educational attainment of high school or less (1.34, [1.13-1.61]; p = 0.001), and death in a long-term care facility (1.46, [1.19-1.80]; p = 0.003). Commonly documented reasons for not returning for care at the clinic included switching care to another provider (42%), logistical difficulty accessing care (26%), patient-family decision to discontinue care (24%), and functional challenges in accessing care (23%). CONCLUSIONS: PLWD are LTFU from specialized memory care at high rates. Attention to care coordination, patient-provider communication, and integrated use of alternative care models such as telehealth are potential strategies to improve care.

Patient and clinician perspectives on a patient-facing dashboard that visualizes patient reported outcomes in rheumatoid arthritis.

BACKGROUND: Poor patient-clinician communication around patient-reported outcomes (PROs) is a barrier to the effective management of rheumatoid arthritis (RA). We aimed to develop an RA 'dashboard' that could facilitate conversations about PROs and that would be acceptable to a wide range of patients, including English and Spanish speakers and patients with adequate or limited health literacy. METHODS: A diverse group of RA patients along with clinicians from two academic rheumatology clinics joined separate focus groups. We solicited feedback and made iterative changes to mock-ups of an RA dashboard that visualized PROs using a human-centred design process. We used the thematic analysis method to identify and characterize themes from the focus groups and used these insights to refine the dashboard. RESULTS: We conducted six focus groups involving 25 RA patients and three groups with 11 clinicians. Patients and clinicians agreed that the dashboard could enhance communication about PROs and RA disease activity and could promote patient self-management. Patients varied in their (a) comprehension, (b) preferences for the display and features of the dashboard, and (c) desired uses for the dashboard. Clinicians expressed significant concerns about the logistics of using the dashboard in clinical practice. CONCLUSION: Using principles of human-centred design, we created an RA dashboard that was well-accepted among patients and clinicians. The ability to customize the data display is important for tailoring the dashboard to patients with diverse needs and preferences. Special attention should be given to feasibility concerns voiced by clinicians.

Approaches to decision-making among late-stage melanoma patients: a multifactorial investigation.

PURPOSE: The treatment decisions of melanoma patients are poorly understood. Most research on cancer patient decision-making focuses on limited components of specific treatment decisions. This study aimed to holistically characterize late-stage melanoma patients' approaches to treatment decision-making in order to advance understanding of patient influences and supports. METHODS: (1) Exploratory analysis of longitudinal qualitative data to identify themes that characterize patient decision-making. (2) Pattern analysis of decision-making themes using an innovative method for visualizing qualitative data: a hierarchically-clustered heatmap. Participants were 13 advanced melanoma patients at a large academic medical center. RESULTS: Exploratory analysis revealed eight themes. Heatmap analysis indicated two broad types of patient decision-makers. "Reliant outsiders" relied on providers for medical information, demonstrated low involvement in decision-making, showed a low or later-in-care interest in clinical trials, and expressed altruistic motives. "Active insiders" accessed substantial medical information and expertise in their networks, consulted with other doctors, showed early and substantial interest in trials, demonstrated high involvement in decision-making, and employed multiple decision-making strategies. CONCLUSION: We identified and characterized two distinct approaches to decision-making among patients with late-stage melanoma. These differences spanned a wide range of factors (e.g., behaviors, resources, motivations). Enhanced understanding of patients as decision-makers and the factors that shape their decision-making may help providers to better support patient understanding, improve patient-provider communication, and support shared decision-making.

What advanced cancer patients with limited treatment options know about clinical research: a qualitative study.

PURPOSE: Discussions between oncologists and advanced cancer patients (ACPs) may touch on the complex issue of clinical trial participation. Numerous initiatives have sought to improve the quality of these potentially difficult conversations. However, we have limited data about what ACPs know about clinical research as they enter such discussions as, to date, such research has focused on the period following informed consent. This study examines ACPs' understanding of clinical research in the treatment period before consent. METHODS: We conducted in-depth interviews with adult ACPs with limited treatment options at four clinics in an academic medical center. So as not to influence patients' perspectives, interviewers probed patients' knowledge of clinical research only if the patient first brought up the topic. Interviews (40-60 min) were audio-recorded, transcribed, and analyzed thematically and via quantitative content analysis by an interdisciplinary team. RESULTS: Of 78 patients recruited, 56 (72%) spontaneously brought up the topic of clinical research during interview and are included in this analysis. Qualitative thematic analysis and quantitative content analysis revealed that patients' knowledge varied in terms of (1) accuracy and (2) specificity (level of detail). ACPs who spoke with high specificity were not always accurate, and ACPs with accurate knowledge included both high- and low-specificity speakers. CONCLUSIONS: ACPs' knowledge of clinical research is variable. Patients who can discuss the technical details of their care may or may not understand the broader purpose and procedures of clinical trials. Understanding this variability is important for improving patient-provider communication about clinical research and supporting efforts to provide individualized care for ACPs.

"Relationships, Very Quickly, Turn to Nothing": Loneliness, Social Isolation, and Adaptation to Changing Social Lives Among Persons Living With Dementia and Care Partners.

BACKGROUND AND OBJECTIVES: Persons with dementia and their care partners have known risks for loneliness and social isolation throughout the disease trajectory, yet little is described about social lives in a population heterogeneous for disease stage, syndrome type, and setting. RESEARCH DESIGN AND METHODS: We conducted a secondary analysis of qualitative interviews from multiple studies to triangulate responses from a cohort of persons with dementia (n = 24), and active (n = 33) or bereaved (n = 15) care partners diverse in setting, dementia type and stage, and life experience. Interviews explored challenges related to social lives and were analyzed thematically. RESULTS: Persons with dementia were on average 80 years old (range: 67-94), 38% female, and 78% diagnosed with Alzheimer's dementia; care partners were on average 67 years old (range: 40-87) and 69% female. We identified 3 primary themes. First, dyads lost external social networks due to complex factors, including discomfort of surrounding social networks, caregiving responsibilities, and progressive cognitive deficits. Second, care partners described disruptions of meaningful dyadic relationships due to progressive cognitive and functional deficits, leading to loneliness and anticipatory grief. Third, adaptive strategies centered on care partners facilitating shared social activities and programs addressing caregiver burden. An overarching theme of disease-course accumulation of barriers to social interactions and constant adaptations was present in all themes. DISCUSSION AND IMPLICATIONS: Isolation and loneliness are a shared experience and source of distress for persons with dementia and care partners. Results can inform interventions tailored to individual needs and disease stages of dyads that enhance social connectedness.

Challenges and Opportunities for Clinician Implicit Bias Training: Insights from Perinatal Care Stakeholders.

Introduction: In an attempt to address health inequities, many U.S. states have considered or enacted legislation requiring antibias or implicit bias training (IBT) for health care providers. California's "Dignity in Pregnancy and Childbirth Act" requires that hospitals and alternative birthing centers provide IBT to perinatal clinicians with the goal of improving clinical outcomes for Black women and birthing people. However, there is as yet insufficient evidence to identify what IBT approaches, if any, achieve this goal. Engaging the experiences and insights of IBT stakeholders is a foundational step in informing nascent IBT policy, curricula, and implementation. Methods: We conducted a multimethod community-based participatory research study with key stakeholders of California's IBT policy to identify key challenges and recommendations for effective clinician IBT. We used focus groups, in-depth interviews, combined inductive/deductive thematic analysis, and multiple techniques to promote rigor and validity. Participants were San Francisco Bay Area-based individuals who identified as Black or African American women with a recent hospital birth (n=20), and hospital-based perinatal clinicians (n=20). Results: We identified numerous actionable challenges and recommendations regarding aspects of (1) state law; (2) IBT content and format; (3) health care facility IBT implementation; (4) health care facility environment; and (5) provider commitment and behaviors. Patient and clinician insights overlapped substantially. Many respondents felt IBT would improve outcomes only in combination with other antiracism interventions. Health Equity Implications: These stakeholder insights offer policy-makers, health system leaders, and curriculum developers crucial guidance for the future development and implementation of clinician antibias interventions.

The Social Contexts of Birthing People with Public- and Private-Payer Prenatal Care: Illuminating an Understudied Aspect of the Patient Experience.

Purpose: In pursuit of more equitable and person-centered health care, patients and professional medical societies increasingly call for better clinician understanding of patients' perspectives and social contexts. A foundational but understudied aspect of patients' social contexts are the ideas they encounter about health-related behaviors. We investigated this aspect of the social contexts of birthing people, comparing those with public versus private insurance to discover setting-specific insights. Methods: Based on ethnographic fieldwork, we created an original survey featuring 29 statements about 12 prenatal, perinatal, and postpartum health behaviors (e.g., drinking alcohol, epidural use, breastfeeding). Participants were 248 individuals receiving prenatal care in Northern California in 2009-2011, split evenly between public- and private-payer coverage. Participants reported whether they were familiar or unfamiliar with each statement. Results: Ninety-eight percent of all participants had heard contradictory ideas about ≥1 health behavior (mean=3.9 behaviors for public- and 5.4 for private-coverage respondents). For 20 of the 29 behavior-related ideas, exposure varied significantly by coverage type. Among other differences, public-coverage respondents were much more familiar with ideas related to risk and constrained autonomy (e.g., that serious perinatal complications are common; that new mothers should try to breastfeed even if they do not want to). Conclusions: Birthing people are exposed to a wide range of ideas about health behaviors, many of which vary by the structural systems in which they are embedded. Understanding and engaging this complexity can help clinicians to provide more respectful, person-centered, and equitable maternity care.

Decision-making about clinical trial options among older patients with metastatic cancer who have exhausted standard therapies.

OBJECTIVES: Older adults under-enroll in early phase cancer clinical trials. There are limited data on their trial experiences, which hampers our ability to understand potential reasons and responses to under-enrollment. We aimed to explore older adults' experiences and deliberations with phase 1 trials. MATERIALS AND METHODS: We analyzed 101 in-depth interviews with 39 adults (average 2.6 interviews per participant) about their experiences with phase 1 trials. All respondents were ≥ 65 years and had advanced cancer. Interviews lasted 60-90 min and were audio-recorded, transcribed, and analyzed to identify respondents' understanding of clinical research, perceptions of early phase trials, and experiences with enrollment. RESULTS: Clinical trial participation was an interactive process that unfolded over time. Older adults relied on ongoing guidance and discussion with their oncologist to navigate the process. Respondents were generally interested in life-prolonging therapies, including enrollment in early phase clinical trials, but did not necessarily state this explicitly to their oncologist. While respondents did not mention age as a limitation to trials participation, participants age > 70 were less enthusiastic about participation and more often discussed their quality of life and weighed benefits of trial participation in the context of their remaining months of life. CONCLUSION: Early phase clinical trial enrollment is complex, and older adults rely on their oncologist to navigate this process. Acknowledging this complexity through shared decision-making may ensure that older adults have appropriate opportunities to enroll in early phase clinical trials and guard against inappropriate under-enrollment.

"Captive by the Uncertainty"-Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic.

BACKGROUND: After a diagnosis of Alzheimer's disease and related disorders, people living with dementia (PWD) and caregivers wonder what disease trajectory to expect and how to plan for functional and cognitive decline. This qualitative study aimed to identify patient and caregiver experiences receiving anticipatory guidance about dementia from a specialty dementia clinic. OBJECTIVE: To examine PWD and caregiver perspectives on receiving anticipatory guidance from a specialty dementia clinic. METHODS: We conducted semi-structured interviews with PWD, and active and bereaved family caregivers, recruited from a specialty dementia clinic. Interviews were recorded, transcribed, and systematically summarized. Thematic analysis identified anticipatory guidance received from clinical or non-clinical sources and areas where respondents wanted additional guidance. RESULTS: Of 40 participants, 9 were PWD, 16 were active caregivers, and 15 were bereaved caregivers. PWD had a mean age of 75 and were primarily male (n = 6/9); caregivers had a mean age of 67 and were primarily female (n = 21/31). Participants felt they received incomplete or "hesitant" guidance on prognosis and expected disease course via their clinicians and filled the gap with information they found via the internet, books, and support groups. They appreciated guidance on behavioral, safety, and communication issues from clinicians, but found more timely and advance guidance from other non-clinical sources. Guidance on legal and financial planning was primarily identified through non-clinical sources. CONCLUSION: PWD and caregivers want more information about expected disease course, prognosis, and help planning after diagnosis. Clinicians have an opportunity to improve anticipatory guidance communication and subsequent care provision.

Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease.

We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with sporadic Creutzfeldt-Jakob disease from the University of California San Francisco Rapidly Progressive Dementia research database. We purposively recruited 12 caregivers for in-depth interviews and extracted associated patient data. We analysed interviews using the constant comparison method and chart data using descriptive statistics. Patients had a median age of 70 (range: 60-86) years and disease duration of 14.5 months (range 4-41 months). Caregivers were interviewed a median of 22  (range 11-39) months after patient death and had a median age of 59 (range 45-73) years. Three major sources of distress included (1) the unique nature of sporadic Creutzfeldt-Jakob disease; (2) clinical care issues such as difficult diagnostic process, lack of expertise in sporadic Creutzfeldt-Jakob disease, gaps in clinical systems, and difficulties with end-of-life care; and (3) caregiving issues, including escalating responsibilities, intensifying stress, declining caregiver well-being, and care needs surpassing resources. Two sources of support were (1) clinical care, including guidance from providers about what to expect and supportive relationships; and (2) caregiving supports, including connection to persons with experience managing Creutzfeldt-Jakob disease, instrumental support, and social/emotional support. The challenges and supports described by caregivers align with neuropalliative approaches and can be used to develop interventions to address needs of persons with sporadic Creutzfeldt-Jakob disease and their caregivers.

"I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care.

BACKGROUND: In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer. OBJECTIVE: We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers. METHODS: We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping. RESULTS: 40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer's disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home. CONCLUSION: Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.

Advance Directive and POLST Documentation in Decedents With Dementia at a Memory Care Center: The Importance of Early Advance Care Planning.

Background and Objectives: To determine the frequency of and challenges to documentation of advance care planning (ACP) in people with dementia, we conducted a chart review of 746 deceased patients seen at a tertiary memory care center between 2012 and 2017. Methods: The rates of documented advance directives (ADs), Physician Order for Life-Sustaining Treatment (POLST), and Do Not Resuscitate (DNR) status were calculated from review of institutional electronic health records. Regression analysis was used to determine associations between ACP documentation and patient characteristics. Results: At the time of death, approximately half of the patients had a documented AD and/or DNR status and 37% had a documented POLST; 30% of patients did not have any ACP documentation. Whereas most of the ADs were documented more than 5 years before time of death, POLST and DNR status were documented more frequently within 2 years of time of death. People who presented to clinic at a younger age and who primarily spoke English were more likely to have documented ADs. People living in zip codes with lower household incomes were 2-4.5 times less likely to have a POLST or DNR documentation. Discussion: ACP is underutilized in people with dementia, even among those seen in a specialty memory care center. ACP should be introduced early on for people with dementia to ensure patients have a voice in their care.

Practices, challenges, and opportunities when addressing the palliative care needs of people living with dementia: Specialty memory care provider perspectives.

INTRODUCTION: Palliative care focuses on reducing suffering and improving quality of life for individuals with serious illness and their families. In an effort to develop palliative care interventions for specialty memory care clinics, this study characterizes memory care providers' perspectives on addressing palliative care needs of people living with dementia (PLWD). METHODS: Qualitative interviews with specialty memory care providers were followed by thematic analysis by a multidisciplinary research team. RESULTS: Provider approaches overlap with key domains of palliative care. Approaches unique to dementia include having a detailed understanding of dementia syndromes, behavioral symptoms, and caregiver burden. Challenges were identified related to disease progression, provider-level factors, and systems and cultural issues. Respondents identified training needed to strengthen a palliative care approach. DISCUSSION: There are many strengths of using memory care teams to address palliative care needs of PLWD. However, they may require additional knowledge and training to strengthen their work.

Barriers and facilitators to older adults' use of nonpharmacologic approaches for chronic pain: a person-focused model.

ABSTRACT: In the context of the opioid epidemic and the growing population of older adults living with chronic pain, clinicians are increasingly recommending nonpharmacologic approaches to patients as complements to or substitutes for pharmacologic treatments for pain. Currently, little is known about the factors that influence older adults' use of these approaches. We aimed to characterize the factors that hinder or support the use of nonpharmacologic approaches for pain management among older adults with multiple morbidities. We collected semistructured qualitative interview data from 25 older adults with multiple morbidities living with chronic pain for 6 months or more. Transcripts were coded to identify factors that hindered or supported participants' use of various nonpharmacologic approaches. We used the constant comparative method to develop a person-focused model of barriers and facilitators to participants' use of these approaches for chronic pain management. Participants described a wide range of factors that influenced their use of nonpharmacologic approaches. We grouped these factors into 3 person-focused domains: awareness of the nonpharmacologic approach as relevant to their chronic pain, appeal of the approach, and access to the approach. We propose and illustrate a conceptual model of barriers and facilitators to guide research and clinical care. This study identifies numerous factors that influence patients' use of nonpharmacologic approaches, some of which are not captured in existing research or routinely addressed in clinical practice. The person-centered model proposed may help to structure and support patient-clinician communication about nonpharmacologic approaches to chronic pain management.

"It's Case by Case, and It's a Struggle": A Qualitative Study of Hospice Practices, Perspectives, and Ethical Dilemmas When Caring for Hospice Enrollees with Full-Code Status or Intensive Treatment Preferences.

Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code. Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments. Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method. Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences. Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.

"Goals of Care Conversations Don't Fit in a Box": Hospice Staff Experiences and Perceptions of Advance Care Planning Quality Measurement.

CONTEXT: With rising concerns about quality of care in hospice, federal agencies recently began mandating quality measurement in hospice, including measures of advance care planning (ACP). OBJECTIVES: To characterize hospice providers' experiences with ACP quality measurement and their reflections on ways to improve it. METHODS: Semi-structured in-depth interviews of fifty-one hospice providers from various clinical backgrounds and organizational roles in four geographically diverse non-profit, community-based hospices in the U.S. Participants were queried about their experiences with and barriers to ACP quality measurement processes in their organization, opinions about the impacts of federally mandated quality measures, and ideas for improvement. Data were analyzed using thematic analysis with an interdisciplinary team, facilitated by ATLAS.ti and Excel. RESULTS: Four key findings of the ACP quality measurement experience for hospice staff included variation, barriers, attitudes, and recommendations for improvement. 1) Variation: Within and across organizations, participants applied a variety of processes to measure ACP quality, and exposure to and experiences with quality measurement varied based on organizational role. 2) Barriers: ACP quality measurement was impeded by limited resources, technological problems, and measurement challenges. 3) Attitudes: Participants' opinions of recently implemented federally mandated requirements for ACP quality measurement highlighted numerous downsides, unintended consequences, and few upsides. 4) Recommendations: improvements included personalizing ACP quality measures, elevating the importance of quality measurement, and streamlining processes. CONCLUSION: Hospice staff take ACP quality measurement seriously, but insufficient organizational resources and regulatory bureaucracy create challenges. Efforts to enhance ACP quality measure nuance and assess outcomes are needed to improve care.

A Home-Based Care Research Agenda by and for Homebound Older Adults and Caregivers.

Homebound older adults have not had a voice in establishing a research agenda relevant to their needs and perspectives. We engaged homebound older adults receiving home-based primary care and caregivers to serve as stakeholder advisors to develop a patient- and caregiver-centered research agenda for home-based care. Over 9 months, we facilitated eight tablet-enabled videoconference meetings. We oriented advisors to patient-centered outcome research and research question development. Advisors developed and prioritized a list of 14 research domains and 127 associated research questions. The top three prioritized research domains in descending rank order (number of associated research questions) were out-of-pocket costs of caregiving (10), access to home-based care and related policy issues (19), and relationship with doctors (15). This research agenda can guide researchers' efforts to focus on areas of importance to the ultimate end users of their research.