Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences.

BACKGROUND: Returning home from the hospital for palliative-focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. OBJECTIVE: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital-to-home transitions for adult patients receiving palliative care and their caregiver(s). METHODS: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low-fidelity prototype testing to review CDW outputs and develop low-fidelity prototypes of interventions. HCPs provided feedback on the viability of low-fidelity prototypes. RESULTS: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low-fidelity prototype sessions to 20 HCPs. Participants in the low-fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. CONCLUSION: Insights gained from this codesign work will inform high-fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital-to-home transitions for patients receiving a palliative approach to care. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient- and caregiver-centred.

Concurrent Hospice and Dialysis Care: Considerations for Implementation.

IMPORTANCE: Hospice positively impacts care at the end of life for patients and their families. However, compared to the general Medicare population, patients on dialysis are half as likely to receive hospice. Concurrent hospice and dialysis care offers an opportunity to improve care for people living with end-stage kidney disease (ESKD). OBJECTIVE: We sought to (1) develop a conceptual model of the Program and (2) identify key components, resources, and considerations for further implementation. DESIGN: We conducted a template analysis of qualitative interviews and convened a community advisory panel (CAP) to get feedback on current concurrent care design and considerations for dissemination and implementation. PARTICIPANTS: Thirty-nine patients with late-stage chronic kidney disease (CKD), family caregivers, bereaved family caregivers, hospice clinicians, nephrology clinicians, administrators, and policy experts participated in interviews. A purposive subset of 19 interviewees composed the CAP. MAIN MEASURES: Qualitative feedback on concurrent care design refinements, implementation, and resources. KEY RESULTS: Participants identified four themes that define an effective model of concurrent hospice and dialysis: it requires (1) timely goals-of-care conversations and (2) an interdisciplinary approach; (3) clear guidelines ensure smooth transitions for patients and families; and (4) hospice payment policy must support concurrent care. CAP participants provided feedback on the phases of an effective model of concurrent hospice and dialysis, and resources, including written and interactive educational materials, communication tools, workflow processes, and order sets. CONCLUSIONS: We developed a conceptual model for concurrent hospice and dialysis care and a corresponding resource list. In addition to policy changes, clinical implementation and educational resources can facilitate scalable and equitable dissemination of concurrent care. Concurrent hospice and dialysis care must be systematically evaluated via a hybrid implementation-effectiveness trial that includes the resources outlined herein, based on our conceptual model of concurrent care delivery.

Electronic health record (EHR)-based PROMIS measures among neurology clinic decedents and survivors: a retrospective cohort analysis.

BACKGROUND: In addition to their standard use to assess real-time symptom burden, patient-reported outcomes (PROs), such as the Patient-Reported Outcomes Measurement Information System (PROMIS), measures offer a potential opportunity to understand when patients are experiencing meaningful clinical decline. If PROs can be used to assess decline, such information can be used for informing medical decision making and determining patient-centered treatment pathways. We sought to use clinically implemented PROMIS measures to retrospectively characterize the final PROMIS report among all patients who completed at least one PROMIS assessment from December 2017-March 2020 in one large health system, stratified by decedents vs. survivors. We conducted a retrospective cohort analysis of decedents (N = 1,499) who received care from outpatient neurology clinical practice within a single, large health system as part of usual care. We also compared decedents to survivors (360 + days before death; N = 49,602) on PROMIS domains and PROMIS-Preference (PROPr) score, along with demographics and clinical characteristics. We used electronic health record (EHR) data with built-in PROMIS measures. Linear regressions assessed differences in PROMIS domains and aggregate PROPr score by days before death of the final PROMIS completion for each patient. RESULTS: Among decedents in our sample, in multivariable regression, only fatigue (range 54.48-59.38, p < 0.0029) and physical function (range 33.22-38.38, p < 0.0001) demonstrated clinically meaningful differences across time before death. The overall PROPr score also demonstrated statistically significant difference comparing survivors (0.19) to PROPr scores obtained 0-29 days before death (0.29, p < 0.0001). CONCLUSIONS: Although clinic completion of PROMIS measures was near universal, very few patients had more than one instance of PROMIS measures reported, limiting longitudinal analyses. Therefore, patient-reported outcomes in clinical practice may not yet be robust enough for incorporation in prediction models and assessment of trajectories of decline, as evidenced in these specialty clinics in one health system. PROMIS measures can be used to effectively identify symptoms and needs in real time, and robust incorporation into EHRs can improve patient-level outcomes, but further work is needed for them to offer meaningful inputs for defining patient trajectories near the end of life. Assessing symptom burden provides an opportunity to understand clinical decline, particularly as people approach the end of life. We sought to understand whether symptoms reported by patients can be used to assess decline in health. Such information can inform decision-making about care and treatments. Of eight symptoms that we assessed, patient reports of fatigue and physical function were associated with clinical decline, as was an overall score of symptom burden. Because few symptoms were associated with decline, patient-reported outcomes in clinical practice may not yet be robust enough for incorporation in prediction models and assessment of trajectories of decline.

Description and Outcomes of an Innovative Concurrent Hospice-Dialysis Program.

BACKGROUND: Compared with the general Medicare population, patients with ESKD have worse quality metrics for end-of-life care, including a higher percentage experiencing hospitalizations and in-hospital deaths and a lower percentage referred to hospice. We developed a Concurrent Hospice and Dialysis Program in which patients may receive palliative dialysis alongside hospice services. The Program aims to improve access to quality end-of-life care and, ultimately, improve the experiences of patients, caregivers, and clinicians. OBJECTIVES: We sought to describe (1) the Program and (2) enrollment and utilization characteristics of Program participants. METHODS: We conducted a quantitative description of demographics, patient characteristics, and utilization of Program enrollees. RESULTS: Of 43 total enrollees, 44% received at least one dialysis treatment, whereas 56% received no dialysis. The median (range) hospice length of stay was 9 (1-76) days for all participants and 13 (4-76) days for those who received at least one dialysis treatment. The average number of dialysis treatments was 3.5 (range 1-9) for hemodialysis and 19.2 (range 3-65) for peritoneal dialysis. Sixty-five percent of enrollees died at home, 23% in inpatient hospice, and 12% in a nursing facility; no patients died in the hospital. CONCLUSIONS: Our 3-year experience with the Program demonstrated that enrollees had a longer median hospice stay than the previously reported 5-day median for patients with ESKD. Most patients received no further dialysis treatments despite the option to continue dialysis. Our experience provides evidence to support future work testing the effectiveness of such clinical programs to improve patient and utilization outcomes.

How well do documented goals-of-care discussions for patients with stage IV cancer reflect communication best practices?

BACKGROUND: Written clinical communication regarding patients' disease understanding and values may facilitate goal-concordant care, yet little is known about the quality of electronic health record (EHR) documentation. We sought to (1) describe frequency of communication best practices in EHR-documented goals-of-care discussions, and (2) assess whether templated notes improve quality of documentation. METHODS: Researchers pulled text of EHR-documented goals-of-care discussions for hospitalized patients with Stage IV cancer from admission to 60-days follow-up. Text was included when in a single encounter the clinician addressed: (a) prognosis and/or illness understanding; and (b) goals and/or treatment options. Researchers qualitatively coded text based on guidelines for communication best practices, and noted if an EHR template was used. RESULTS: Forty-two percent (206/492) of patients had EHR-documented goals-of-care discussions. Text frequently described communication of cancer progression (89%), though rarely included prognosis (22%). Text often included patients' goals and values (83%), and at least on specific treatment decision (82%). Communication about treatments was included for 98% of patients; common examples included cancer treatment (62%), hospice (62%), resuscitation (51%), or intensive care (38%). Clinicians documented making recommendations for 40% of patients. Text addressing patient emotional and spiritual concerns was uncommon (15%). Compared to free text, use of a template was associated with increased documentation of goals and values (80% vs. 61%, p < 0.01), but not other best practices. CONCLUSION: Insights from the study can be used to guide future training and research to study and improve the quality of documentation about goal of care, and its impact on goal-concordant care.

Elements of Palliative Care in the Last 6 Months of Life: Frequency, Predictors, and Timing.

IMPORTANCE: Persons living with serious illness often need skilled symptom management, communication, and spiritual support. Palliative care addresses these needs and may be delivered by either specialists or clinicians trained in other fields. It is important to understand core elements of palliative care to best provide patient-centered care. OBJECTIVE: To describe frequency, predictors, and timing of core elements of palliative care during the last 6 months of life. DESIGN: Retrospective chart review. SETTING: Inpatient academic medical center. PARTICIPANTS: Decedents with cancer, dementia, or chronic kidney disease (CKD) admitted during the 6 months preceding death. EXPOSURES: We identified receipt and timing of core elements of palliative care: pain and symptom management, goals of care, spiritual care; and specialty palliative care utilization; hospital encounters; demographics; and comorbid diagnoses. We ran Poisson regression models to assess whether diagnosis or hospital encounters were associated with core elements of palliative care. RESULTS: Among 402 decedents, the mean (SD) number of appropriately screened and treated symptoms was 2.9 (1.7)/10. Among 76.1% with documented goals of care, 58.0% had a primary goal of comfort; 55.0% had documented spiritual care. In multivariable models, compared with decedents with cancer, those with dementia or CKD were less likely to have pain and symptom management (respectively, 31% (incidence rate ratio [IRR], 0.69; 95% CI, 0.56-0.85) and 17% (IRR, 0.83; CI, 0.71-0.97)). There was a median of 3 days (IQR, 0-173) between transition to a goal of comfort and death, and a median of 12 days (IQR, 5-47) between hospice referral and death. CONCLUSIONS AND RELEVANCE: Although a high proportion of patients received elements of palliative care, transitions to a goal of comfort or hospice happened very near death. Palliative care delivery can be improved by systematizing existing mechanisms, including prompts for earlier goals-of-care discussion, symptom screening, and spiritual care, and by building collaboration between primary and specialty palliative care services.

Evaluating the care provision of a community-based serious-illness care program via chart measures.

BACKGROUND: Although quality-of-care domains for home-based primary and palliative programs have been proposed, they have had limited testing in practice. Our aim was to evaluate the care provision in a community-based serious-illness care program, a combined home-based primary and palliative care model. METHODS: Retrospective chart review of patients in an academic community-based serious-illness care program in central North Carolina from August 2014 to March 2016 (n = 159). Chart review included demographics, health status, and operationalized measures of seven quality-of-care domains: medical assessment, care coordination, safety, quality of life, provider competency, goal attainment, and access. RESULTS: Patients were mostly women (56%) with an average age of 70 years. Patients were multi-morbid (53% ≥3 comorbidities), functionally impaired (45% had impairment in ≥2 activities of daily living) and 32% had dementia. During the study period, 31% of patients died. Chart review found high rates assessment of functional status (97%), falls (98%), and medication safety (96%). Rates of pain assessment (70%), advance directive discussions (65%), influenza vaccination (59%), and depression assessment (54% of those with a diagnosis of depression) were lower. Cognitive barriers, spiritual needs, and behavioral issues were assessed infrequently (35, 22, 21%, respectively). CONCLUSION: This study is one of the first to operationalize and examine quality-of-care measures for a community-based serious-illness care program, an emerging model for vulnerable adults. Our operationalization should not constitute validation of these measures and revealed areas for improvement; however, the community-based serious-illness care program performed well in several key quality-of-care domains. Future work is needed to validate these measures.

Electronic Health Record Phenotypes for Identifying Patients with Late-Stage Disease: a Method for Research and Clinical Application.

BACKGROUND: Systematic identification of patients allows researchers and clinicians to test new models of care delivery. EHR phenotypes-structured algorithms based on clinical indicators from EHRs-can aid in such identification. OBJECTIVE: To develop EHR phenotypes to identify decedents with stage 4 solid-tumor cancer or stage 4-5 chronic kidney disease (CKD). DESIGN: We developed two EHR phenotypes. Each phenotype included International Classification of Diseases (ICD)-9 and ICD-10 codes. We used natural language processing (NLP) to further specify stage 4 cancer, and lab values for CKD. SUBJECTS: Decedents with cancer or CKD who had been admitted to an academic medical center in the last 6 months of life and died August 26, 2017-December 31, 2017. MAIN MEASURE: We calculated positive predictive values (PPV), false discovery rates (FDR), false negative rates (FNR), and sensitivity. Phenotypes were validated by a comparison with manual chart review. We also compared the EHR phenotype results to those admitted to the oncology and nephrology inpatient services. KEY RESULTS: The EHR phenotypes identified 271 decedents with cancer, of whom 186 had stage 4 disease; of 192 decedents with CKD, 89 had stage 4-5 disease. The EHR phenotype for stage 4 cancer had a PPV of 68.6%, FDR of 31.4%, FNR of 0.5%, and 99.5% sensitivity. The EHR phenotype for stage 4-5 CKD had a PPV of 46.4%, FDR of 53.7%, FNR of 0.0%, and 100% sensitivity. CONCLUSIONS: EHR phenotypes efficiently identified patients who died with late-stage cancer or CKD. Future EHR phenotypes can prioritize specificity over sensitivity, and incorporate stratification of high- and low-palliative care need. EHR phenotypes are a promising method for identifying patients for research and clinical purposes, including equitable distribution of specialty palliative care.

Costs at the End of Life: Perspectives for North Carolina.

Many elders require supportive services, with many costs covered by Medicaid. Once terminal illness sets in, palliative care and hospice may help control cost while ensuring quality. This commentary reviews trends in cost at the end of life and describes selected strategies to improve patient-centered care in North Carolina.

Conflict Management Strategies in the ICU Differ Between Palliative Care Specialists and Intensivists.

OBJECTIVES: Conflict is common between physicians and surrogate decision makers around end-of-life care in ICU. Involving experts in conflict management improve outcomes, but little is known about what differences in conflict management styles may explain the benefit. We used simulation to examine potential differences in how palliative care specialists manage conflict with surrogates about end-of-life treatment decisions in ICUs compared with intensivists. DESIGN: Subjects participated in a high-fidelity simulation of conflict with a surrogate in an ICU. In this simulation, a medical actor portrayed a surrogate decision maker during an ICU family meeting who refuses to follow an advance directive that clearly declines advanced life-sustaining therapies. We audiorecorded the simulation encounters and applied a coding framework to quantify conflict management behaviors, which was organized into two categories: task-focused communication and relationship building. We used negative binomial modeling to determine whether there were differences between palliative care specialists' and intensivists' use of task-focused communication and relationship building. SETTING: Single academic medical center ICU. SUBJECTS: Palliative care specialists and intensivists. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We enrolled 11 palliative care specialists and 25 intensivists. The palliative care specialists were all attending physicians. The intensivist group consisted of 11 attending physicians, 9 pulmonary and critical care fellows, and 5 internal medicine residents rotating in the ICU. We excluded five residents from the primary analysis in order to reduce confounding due to training level. Physicians' mean age was 37 years with a mean of 8 years in practice. Palliative care specialists used 55% fewer task-focused communication statements (incidence rate ratio, 0.55; 95% CI, 0.36-0.83; p = 0.005) and 48% more relationship-building statements (incidence rate ratio, 1.48; 95% CI, 0.89-2.46; p = 0.13) compared with intensivists. CONCLUSIONS: We found that palliative care specialists engage in less task-focused communication when managing conflict with surrogates compared with intensivists. These differences may help explain the benefit of palliative care involvement in conflict and could be the focus of interventions to improve clinicians' conflict resolution skills.

Health behavior change in advance care planning: an agent-based model.

BACKGROUND: A practical and ethical challenge in advance care planning research is controlling and intervening on human behavior. Additionally, observing dynamic changes in advance care planning (ACP) behavior proves difficult, though tracking changes over time is important for intervention development. Agent-based modeling (ABM) allows researchers to integrate complex behavioral data about advance care planning behaviors and thought processes into a controlled environment that is more easily alterable and observable. Literature to date has not addressed how best to motivate individuals, increase facilitators and reduce barriers associated with ACP. We aimed to build an ABM that applies the Transtheoretical Model of behavior change to ACP as a health behavior and accurately reflects: 1) the rates at which individuals complete the process, 2) how individuals respond to barriers, facilitators, and behavioral variables, and 3) the interactions between these variables. METHODS: We developed a dynamic ABM of the ACP decision making process based on the stages of change posited by the Transtheoretical Model. We integrated barriers, facilitators, and other behavioral variables that agents encounter as they move through the process. RESULTS: We successfully incorporated ACP barriers, facilitators, and other behavioral variables into our ABM, forming a plausible representation of ACP behavior and decision-making. The resulting distributions across the stages of change replicated those found in the literature, with approximately half of participants in the action-maintenance stage in both the model and the literature. CONCLUSIONS: Our ABM is a useful method for representing dynamic social and experiential influences on the ACP decision making process. This model suggests structural interventions, e.g. increasing access to ACP materials in primary care clinics, in addition to improved methods of data collection for behavioral studies, e.g. incorporating longitudinal data to capture behavioral dynamics.

Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis.

Importance: The use of palliative care programs and the number of trials assessing their effectiveness have increased. Objective: To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. Data Sources: MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016. Study Selection: Randomized clinical trials of palliative care interventions in adults with life-limiting illness. Data Extraction and Synthesis: Two reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-palliative care scale (FACIT-Pal) instrument (range, 0-184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0-90 [best-worst]; MCID, 5.7 points). Main Outcomes and Measures: Quality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures. Results: Forty-three RCTs provided data on 12 731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95% CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, -0.66; 95% CI, -1.25 to -0.07; ESAS mean difference, -10.30). When analyses were limited to trials at low risk of bias (n = 5), the association between palliative care and QOL was attenuated but remained statistically significant (standardized mean difference, 0.20; 95% CI, 0.06 to 0.34; FACIT-Pal mean difference, 4.94), whereas the association with symptom burden was not statistically significant (standardized mean difference, -0.21; 95% CI, -0.42 to 0.00; ESAS mean difference, -3.28). There was no association between palliative care and survival (hazard ratio, 0.90; 95% CI, 0.69 to 1.17). Palliative care was associated consistently with improvements in advance care planning, patient and caregiver satisfaction, and lower health care utilization. Evidence of associations with other outcomes was mixed. Conclusions and Relevance: In this meta-analysis, palliative care interventions were associated with improvements in patient QOL and symptom burden. Findings for caregiver outcomes were inconsistent. However, many associations were no longer significant when limited to trials at low risk of bias, and there was no significant association between palliative care and survival.

Knowledge, attitudes, and preferences of healthy young adults regarding advance care planning: a focus group study of university students in Pittsburgh, USA.

BACKGROUND: To date, research and promotion regarding advance care planning (ACP) has targeted those with serious illness or the elderly, thereby ignoring healthy young adults. The purpose of this study was to explore young adults' knowledge, attitudes, and preferences regarding advance care planning (ACP) and medical decision-making. Further, we aimed to understand the potential role of public health to encourage population-based promotion of ACP. METHODS: Between February 2007 and April 2007, we conducted six focus groups comprising 56 young adults ages 18-30. Topics explored included (1) baseline knowledge regarding ACP, (2) preferences for ACP, (3) characteristics of preferred surrogates, and (4) barriers and facilitators to completing ACP specific to age and individuation. We used a qualitative thematic approach to analyze transcripts. RESULTS: All participants desired more information regarding ACP. In addition, participants expressed (1) heterogeneous attitudes regarding triggers to perform ACP, (2) the opinion that ACP is a marker of individuation, (3) the belief that prior exposure to illness plays a role in prompting ACP, and (4) an appreciation that ACP is flexible to changes in preferences and circumstances throughout the life-course. CONCLUSION: Young adults perceive ACP as a worthwhile health behavior and view a lack of information as a major barrier to discussion and adoption. Our data emphasize the need for strategies to increase ACP knowledge, while encouraging population-level, patient-centered, healthcare decision-making.

Health system implementation of the PROMIS Cognitive Function Screener in the Medicare Annual Wellness Visit: framing as abilities versus concerns.

BACKGROUND: Cognitive assessment is a required component of the Medicare Annual Wellness Visit (AWV). In this prospective study, we evaluated acceptability and usefulness of a patient-reported outcome measure (the PROMIS® Cognitive Function Screener, or PRO-CS) to screen for cognitive impairment during the AWV. We compared two versions of the PRO-CS: Abilities and Concerns. METHODS: We developed PRO-CS Abilities and PRO-CS Concerns using items from the PROMIS Cognitive Function item banks. We partnered with a large health system in Pennsylvania to implement an electronic health record (EHR)-integrated version of the 4-item PRO-CS into their AWV workflow. PRO-CS Abilities was implemented in June 2022 and then replaced with PRO-CS Concerns in October 2022. We used EHR data to evaluate scores on Abilities versus Concerns and their association with patient characteristics. We gathered feedback from providers on experiences with the PRO-CS and conducted cognitive interviews with patients to evaluate their preferences for Abilities versus Concerns. RESULTS: Between June 2022 and January 2023, 3,088 patients completed PRO-CS Abilities and 2,614 patients completed PRO-CS Concerns. Mean T-scores for Abilities (54.8) were slightly higher (indicating better cognition) than for Concerns (52.6). 10% of scores on Abilities and 13% of scores on Concerns indicated concern for cognitive impairment (T-score < 45). Both Abilities and Concerns were associated with clinical characteristics as hypothesized, with lower scores for patients with cognitive impairment diagnoses and those requiring assistance with instrumental activities of daily living. Abilities and Concerns had similar negative correlations with depression (r= -0.31 versus r= -0.33) and anxiety (r= -0.28 for both), while Abilities had a slightly stronger positive correlation with self-rated health (r = 0.34 versus r = 0.28). In interviews, providers commented that the PRO-CS could be useful to facilitate conversations about cognition, though several providers noted potential limitations of patient self-report. Feedback from patients indicated a preference for PRO-CS Concerns. CONCLUSIONS: Our findings suggest potential utility of the PRO-CS for cognitive screening in the Medicare AWV. PRO-CS Abilities and Concerns had similar associations with patient clinical characteristics, but the Concerns version was more acceptable to patients.

Advanced Care Planning in Chronic Kidney Disease: Qualitative Impact of the MY WAY Intervention.

CONTEXT: Despite recommendations for shared decision-making and advanced care planning (ACP) for people with chronic kidney disease (CKD), such conversations are infrequent. The MY WAY educational and patient coaching intervention aimed to promote high-quality ACP. OBJECTIVES: This qualitative substudy sought to gain participant feedback on the MY WAY ACP coaching intervention, and how it impacted their wishes, perceptions of kidney care, and factors that helped them reflect on ACP. METHODS: We conducted semi-structured interviews with participants from the intervention arm of the MY WAY study about their prior experience with ACPs in the context of CKD, impressions of the MY WAY intervention, and outcomes of the MY WAY intervention. We conducted a qualitative thematic analysis of transcribed interviews. RESULTS: Among 15 intervention participants, the following major themes emerged: 1) Patients with CKD approach ACP with varied experiences; 2) Patients felt the MY WAY coaching intervention supported ACP by reinforcing values; and 3) Patients found the coaching intervention focused on end of life, but not necessarily on decision making regarding CKD. CONCLUSION: Participants perceived the coaching intervention to have high utility in facilitating ACP, but had a limited impact on CKD-specific decision-making. These findings suggest that the coach plays a crucial role in comfort with ACP conversations and that ACP readiness and engagement may not correlate with treatment preferences or understanding of CKD treatment decisions.

Which medicare advantage enrollees are at highest one-year mortality risk?

BACKGROUND: While a number of tools exist to predict mortality among older adults, less research has described the characteristics of Medicare Advantage (MA) enrollees at higher risk for 1 year mortality. OBJECTIVES: To describe the characteristics of MA enrollees at higher mortality risk using patient survey data. RESEARCH DESIGN: Retrospective cohort. SUBJECTS: MA enrollees completing the 2019 MA Consumer Assessment of Healthcare Providers and Systems (CAHPS) Survey. MEASURES: Linked demographic, health, and mortality data from a sample of MA enrollees were used to predict 1-year mortality risk and describe enrollee characteristics across levels of predicted mortality risk. RESULTS: The mortality model had a 0.80 c-statistic. Mortality risks were skewed: 6 % of enrollees had a ≥ 10 % 1-year mortality risk, while 45 % of enrollees had 1 % to < 5 % 1-year mortality risk. Among the high-risk (≥10 %) group, 47 % were age 85+ versus 12 % among those with mortality risk <5 %. 79 % were in fair or poor self-rated health versus 29 % among those with mortality risk of <5 %. 71 % reported needing urgent care in the prior 6 months versus 40 % among those with a mortality risk of 1 to<5 %. CONCLUSIONS: Relatively few older adults enrolled in MA are at high 1-year mortality risk. Nonetheless, MA enrollees over age 85, in fair or poor health, or with recent urgent care needs are far more likely to be in a high mortality risk group.

Selecting outcomes for pragmatic clinical trials in dementia care: The IMPACT Collaboratory iLibrary.

BACKGROUND: Many interventions improve care and outcomes for people with Alzheimer's Disease and related dementias (ADRD), yet are never disseminated. Pragmatic trials facilitate the adoption and dissemination of best practices, but gaps in pragmatic outcome measurement are a critical obstacle. Our objectives are (1) to describe the development and structure of the IMbedded Pragmatic ADRD Clinical Trials Collaboratory (IMPACT) iLibrary of potential outcome measures for ADRD pragmatic trials, and (2) to assess their pragmatic characteristics. METHODS: We identified potential outcome measures from several sources: a database of administrative and clinical outcome measures from ADRD clinical trials registered in ClinicalTrials.gov, published reviews, and IMPACT pilot pragmatic trial outcome measures. The iLibrary reports (a) number of items, (b) completion time, (c) readability for diverse populations, (d) cost or copyright barriers to use, (e) method of administration, (f) assessor training burden, and (g) feasibility of data capture and interpretation in routine care; a summary of pragmatic characteristics of each outcome measure (high, moderate, low); items or descriptions of items; and links to primary citations regarding development or psychometric properties. RESULTS: We included 140 outcome measures in the iLibrary: 66 administrative (100% were pragmatic) and 74 clinical (52% were pragmatic). The most commonly addressed outcome domains from administrative assessments included physical function, quality of care or communication concerns, and psychological symptoms or distress behaviors. The most commonly addressed outcome domains from clinical assessments were psychological symptoms or distress behaviors, physical function, cognitive function, and health-related quality of life. CONCLUSIONS: Pragmatic outcome measures are brief, meaningful to diverse populations, easily scored and interpreted by clinicians, and available in electronic format for analysis. The iLibrary can facilitate the selection of measures for a wide range of outcomes relevant to people with ADRD and their care partners.

A systematic review of experimentally tested implementation strategies across health and human service settings: evidence from 2010-2022.

BACKGROUND: Studies of implementation strategies range in rigor, design, and evaluated outcomes, presenting interpretation challenges for practitioners and researchers. This systematic review aimed to describe the body of research evidence testing implementation strategies across diverse settings and domains, using the Expert Recommendations for Implementing Change (ERIC) taxonomy to classify strategies and the Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) framework to classify outcomes. METHODS: We conducted a systematic review of studies examining implementation strategies from 2010-2022 and registered with PROSPERO (CRD42021235592). We searched databases using terms "implementation strategy", "intervention", "bundle", "support", and their variants. We also solicited study recommendations from implementation science experts and mined existing systematic reviews. We included studies that quantitatively assessed the impact of at least one implementation strategy to improve health or health care using an outcome that could be mapped to the five evaluation dimensions of RE-AIM. Only studies meeting prespecified methodologic standards were included. We described the characteristics of studies and frequency of implementation strategy use across study arms. We also examined common strategy pairings and cooccurrence with significant outcomes. FINDINGS: Our search resulted in 16,605 studies; 129 met inclusion criteria. Studies tested an average of 6.73 strategies (0-20 range). The most assessed outcomes were Effectiveness (n=82; 64%) and Implementation (n=73; 56%). The implementation strategies most frequently occurring in the experimental arm were Distribute Educational Materials (n=99), Conduct Educational Meetings (n=96), Audit and Provide Feedback (n=76), and External Facilitation (n=59). These strategies were often used in combination. Nineteen implementation strategies were frequently tested and associated with significantly improved outcomes. However, many strategies were not tested sufficiently to draw conclusions. CONCLUSION: This review of 129 methodologically rigorous studies built upon prior implementation science data syntheses to identify implementation strategies that had been experimentally tested and summarized their impact on outcomes across diverse outcomes and clinical settings. We present recommendations for improving future similar efforts.