Pre-post-evaluation of a dementia-specific advance care planning toolkit for Japanese primary care clinicians.

BACKGROUND: The population of people living with dementia (PLwD) continues to grow in Japan where advance care planning (ACP) for PLwD is relatively new. Our aim was to evaluate the feasibility and cultural acceptability of a dementia-specific ACP communication skills toolkit for Japanese primary care clinicians. METHODS: We delivered 13 training sessions in primary care clinics across central Japan and conducted a post-training survey to assess whether the toolkit increased confidence in dementia-specific ACP communication skills and the acceptability of the toolkit with the following four statements: (1) The language in the sessions was clear, (2) The sessions took an appropriate amount of time to complete, (3) The design of the sessions was an effective educational method, and (4) The sessions were culturally appropriate for communication with Japanese patients with dementia and their family members. We asked participants to respond using a 5-point Likert scale from strongly agree to strongly disagree. RESULTS: All participants were Japanese and included 80 physicians (mean age 39.8 years), 33 nurses (mean age 45.7 years), and 58 other participants (mean age 42.9 years), who were 30.0%, 87.9%, and 55.2% female, respectively. Most participants practiced in rural settings. In pre- post-comparisons, participant confidence increased in determining capacity, understanding dementia prognosis, goals of care, eliciting surrogates, recommending self-care practices to families, and leading family meetings (all p < 0.001). Most participants strongly agreed or agreed that the toolkit was an effective method (96.9%), took an appropriate amount of time (94.5%), contained clear language (89.8%), and was culturally appropriate (73.6%). CONCLUSIONS: Dementia-specific ACP communication skills toolkit can be delivered in Japan. Japanese primary care clinicians generally felt the dementia-specific ACP toolkit increased their confidence in ACP communication skills and was acceptable. The language, time, and design were well received, though further work is needed to improve the cultural appropriateness of the toolkit.

A comparison of dementia diagnoses and cognitive function measures in Medicare claims and the Minimum Data Set.

BACKGROUND: Gold standard dementia assessments are rarely available in large real-world datasets, leaving researchers to choose among methods with imperfect but acceptable accuracy to identify nursing home (NH) residents with dementia. In healthcare claims, options include claims-based diagnosis algorithms, diagnosis indicators, and cognitive function measures in the Minimum Data Set (MDS), but few studies have compared these. We evaluated the proportion of NH residents identified with possible dementia and concordance of these three. METHODS: Using a 20% random sample of 2018-2019 Medicare beneficiaries, we identified MDS admission assessments for non-skilled NH stays among individuals with continuous enrollment in Medicare Parts A, B, and D. Dementia was identified using: (1) Chronic Conditions Warehouse (CCW) claims-based algorithm for Alzheimer's disease and non-Alzheimer's dementia; (2) MDS active diagnosis indicators for Alzheimer's disease and non-Alzheimer's dementias; and (3) the MDS Cognitive Function Scale (CFS) (at least mild cognitive impairment). We compared the proportion of admissions with evidence of possible dementia using each criterion and calculated the sensitivity, specificity, and agreement of the CCW claims definition and MDS indicators for identifying any impairment on the CFS. RESULTS: Among 346,013 non-SNF NH admissions between 2018 and 2019, 57.2% met criteria for at least one definition (44.7% CFS, 40.7% CCW algorithm, 26.0% MDS indicators). The MDS CFS uniquely identified the greatest proportion with evidence of dementia. The CCW claims algorithm had 63.7% sensitivity and 78.1% specificity for identifying any cognitive impairment on the CFS. Active diagnosis indicators from the MDS had lower sensitivity (47.0%), but higher specificity (91.0%). CONCLUSIONS: Claims- and MDS-based methods for identifying NH residents with possible dementia have only partial overlap in the cohorts they identify, and neither is an obvious gold standard. Future studies should seek to determine whether additional functional assessments from the MDS or prescriptions can improve identification of possible dementia in this population.

Validating claims-based definitions for deprescribing: Bridging the gap between clinical and administrative data.

BACKGROUND: Limited research has evaluated the validity of claims-based definitions for deprescribing. OBJECTIVES: Evaluate the validity of claims-based definitions of deprescribing against electronic health records (EHRs) for deprescribing of benzodiazepines (BZDs) after a fall-related hospitalization. METHODS: We used a novel data linkage between Medicare fee-for-service (FFS) and Part D with our health system's EHR. We identified patients aged ≥66 years with a fall-related hospitalization, continuous enrollment in Medicare FFS and Part D for 6 months pre- and post-hospitalization, and ≥2 BZD fills in the 6 months pre-hospitalization. Using a standardized EHR abstraction tool, we adjudicated deprescribing for a sub-sample with a fall-related hospitalization at UNC. We evaluated the validity of claims-based deprescribing definitions (e.g., gaps in supply, dosage reductions) versus chart review using sensitivity and specificity. RESULTS: Among 257 patients in the overall sample, 44% were aged 66-74 years, 35% had Medicare low-income subsidy, 79% were female. Among claims-based definitions using gaps in supply, the prevalence of BZD deprescribing ranged from 8.2% (no refills) to 36.6% (30-day gap). When incorporating dosage, the prevalence ranged from 55.3% to 65.8%. Among the validation sub-sample (n = 47), approximately one-third had BZDs deprescribed in the EHR. Compared to EHR, gaps in supply from claims had good sensitivity, but poor specificity. Incorporating dosage increased sensitivity, but worsened specificity. CONCLUSIONS: The sensitivity of claims-based definitions for deprescribing of BZDs was low; however, the specificity of a 90-day gap was >90%. Replication in other EHRs and for other low-value medications is needed to guide future deprescribing research.

Development and Evaluation of a Multisource Approach to Extend Mortality Follow-Up for Older Adults With Advanced Cancer Enrolled in Randomized Trials.

PURPOSE: Mortality data can complement primary end points from cancer clinical trials. Yet, identifying deaths after trial completion is challenging, as timely and comprehensive vital status data are unavailable in the United States. We developed and evaluated a multisource approach to capture death data after clinical trial completion. METHODS: Individuals age 70 years and older with incurable solid tumors or lymphoma and ≥1 aging-related condition were enrolled from October 2014 to March 2019 (ClinicalTrials.gov identifier: NCT02107443 and NCT02054741). Participants provided consent to link trial information to external sources. We developed a stepped approach for extended death capture using (1) active trial follow-up up to 1 year, (2) linkage to the National Death Index (NDI), and (3) obituary searches, thus generating a 5-year survival curve. In a random sample of 50 participants who died during trial follow-up, we estimated sensitivity of death data using NDI and obituary sources and computed survival times by data source. RESULTS: The two trials enrolled 1,169 participants; mean age was 76 years; 46% were female; and gastrointestinal cancer (30%) and lung cancer (26%) were the most common cancer types. Across data sources, maximum follow-up was >7 years; 5-year survival was 18%. In total, there were 841 deaths: 603 identified during trial follow-up; 199 from the NDI; and 39 from obituary searches. The sensitivity for death capture was 92% for the NDI and 94% for the obituary searches compared with the trial data, and computed survival times were similar across data sources. CONCLUSION: Extending clinical trial mortality follow-up through linkage with external data sources was feasible and accurate. Future cancer clinical trials should collect necessary consent and patient identifiers for vital status linkages that can enhance understanding of longer-term outcomes.

Novel Definitions of Wellness and Distress among Family Caregivers of Patients with Acute Cardiorespiratory Failure: A Qualitative Study.

Rationale: Family caregivers of patients with acute cardiorespiratory failure are at high risk for distress, which is typically defined as the presence of psychological symptoms such as anxiety, depression, or posttraumatic stress. Interventions to reduce caregiver distress and increase wellness have been largely ineffective to date. An incomplete understanding of caregiver wellness and distress may hinder efforts at developing effective support interventions. Objectives: To allow family caregivers to define their experiences of wellness and distress 6 months after patient intensive care unit (ICU) admission and to identify moderators that influence wellness and distress. Methods: Primary family caregivers of adult patients admitted to the medical ICU with acute cardiorespiratory failure were invited to participate in a semistructured interview 6 months after ICU admission as part of a larger prospective cohort study. Interview guides were used to assess caregiver perceptions of their own well-being, record caregiver descriptions of their experiences of family caregiving, and identify key stress events and moderators that influenced well-being during and after the ICU admission. This study was guided by the Chronic Traumatic Stress Framework conceptual model, and data were analyzed using the five-step framework approach. Results: Among 21 interviewees, the mean age was 58 years, 67% were female, and 76% were White. Nearly half of patients (47%) had died before the caregiver interview. At the time of the interview, 9 caregivers endorsed an overall sense of distress, 10 endorsed a sense of wellness, and 2 endorsed a mix of both. Caregivers defined their experiences of wellness and distress as multidimensional and composed of four main elements: 1) positive versus negative physical and psychological outcomes, 2) high versus low capacity for self-care, 3) thriving versus struggling in the caregiving role, and 4) a sense of normalcy versus ongoing life disruption. Postdischarge support from family, friends, and the community at large played a key role in moderating caregiver outcomes. Conclusions: Caregiver wellness and distress are multidimensional and extend beyond the absence or presence of psychological outcomes. Future intervention research should incorporate novel outcome measures that include elements of self-efficacy, preparedness, and adaptation and optimize postdischarge support for family caregivers.

Neural Circuits Underlying Multifeature Extraction in the Retina.

Classic ON-OFF direction-selective ganglion cells (DSGCs) that encode the four cardinal directions were recently shown to also be orientation-selective. To clarify the mechanisms underlying orientation selectivity, we employed a variety of electrophysiological, optogenetic, and gene knock-out strategies to test the relative contributions of glutamate, GABA, and acetylcholine (ACh) input that are known to drive DSGCs, in male and female mouse retinas. Extracellular spike recordings revealed that DSGCs respond preferentially to either vertical or horizontal bars, those that are perpendicular to their preferred-null motion axes. By contrast, the glutamate input to all four DSGC types measured using whole-cell patch-clamp techniques was found to be tuned along the vertical axis. Tuned glutamatergic excitation was heavily reliant on type 5A bipolar cells, which appear to be electrically coupled via connexin 36 containing gap junctions to the vertically oriented processes of wide-field amacrine cells. Vertically tuned inputs are transformed by the GABAergic/cholinergic "starburst" amacrine cells (SACs), which are critical components of the direction-selective circuit, into distinct patterns of inhibition and excitation. Feed-forward SAC inhibition appears to "veto" preferred orientation glutamate excitation in dorsal/ventral (but not nasal/temporal) coding DSGCs "flipping" their orientation tuning by 90° and accounts for the apparent mismatch between glutamate input tuning and the DSGC's spiking response. Together, these results reveal how two distinct synaptic motifs interact to generate complex feature selectivity, shedding light on the intricate circuitry that underlies visual processing in the retina.

Development of a Lived Experience Panel to inform the design of embedded pragmatic trials of dementia care interventions.

BACKGROUND: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. METHODS: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia. The 11-member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. RESULTS: LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. CONCLUSIONS: The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.

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.

Deprescribing bisphosphonates for older adults with dementia: perspectives of caregivers.

Little is known about caregivers' perspectives on deprescribing bisphosphonates for older adults with dementia. Caregivers agreed that fracture prevention was important for maintaining functional independence but acknowledged that changing goals of care may justify deprescribing. Conversations grounded in "what matters most" can align fracture prevention treatment with goals of care. PURPOSE: The long-term fracture prevention benefits of bisphosphonates may begin to be overshadowed by the potential burden of adverse effects and polypharmacy for older adults living with dementia as the disease progresses. We characterized factors that influence caregiver decision-making for continuing versus deprescribing bisphosphonates for persons living with dementia. METHODS: We conducted 11 interviews with family or informal caregivers of older adults living with dementia in the community or in long-term care who had been treated with bisphosphonates. Interviews focused on experiences caring for someone who has experienced a fracture, perceived benefits and harms of bisphosphonates, and experiences with deprescribing. Analyses were conducted using a qualitative framework methodology guided by the Health Belief Model. RESULTS: Most caregivers were male (n = 8), younger than 65 (n = 8) and were an adult child caregiver (n = 8). Three caregivers were Black and five were Latino/a. Attempts to maintain functional independence despite high likelihood of falls was frequently discussed as contributing to fracture risk, in this population. Many caregivers perceived fracture prevention treatment as important, while several noted that it may become less important near the end of life. Perceived benefits of fracture prevention treatment for persons with dementia included improved quality of life and maintaining independence. Although most indicated that bisphosphonates were well tolerated, gastrointestinal adverse effects, preference for fewer treatments, and dementia-related behaviors that interfere with medication administration may be reasons for deprescribing. CONCLUSION: Conversations grounded in caregiver experiences and "what matters most" may help optimize fracture prevention treatment for older adults with dementia.

Clinical Features and Outcomes Among Patients With Refractory Out-of-Hospital Cardiac Arrest and an Initial Shockable Rhythm.

BACKGROUND: Clinical features among patients with refractory out-of-hospital cardiac arrest (OHCA) and initial shockable rhythms of ventricular fibrillation/pulseless ventricular tachycardia are not well-characterized. METHODS: We compared clinical characteristics and coronary angiographic findings between patients with refractory OHCA (incessant ventricular fibrillation/pulseless ventricular tachycardia after ≥3 direct-current shocks) and those without refractory OHCA. RESULTS: Between 2014 and 2018, a total of 204 patients with ventricular fibrillation/pulseless ventricular tachycardia OHCA (median age 62; males 78%) were divided into groups with (36%, 74/204) and without refractory arrest (64%, 130/204). Refractory OHCA patients had longer cardiopulmonary resuscitation (23 versus 15 minutes), more frequently required ≥450 mg amiodarone (34% versus 3.8%), and had cardiogenic shock (80% versus 55%) necessitating higher adrenaline dose (4.0 versus 1.0 mg) and higher rates of mechanical ventilation (92% versus 74%; all P<0.01). Of 167 patients (82%) selected for coronary angiography, 33% (n=55) had refractory OHCA (P=0.035). Significant coronary artery disease (≥1 major vessel with >70% stenosis) was present in >70% of patients. Refractory OHCA patients frequently had acute coronary occlusion (64% versus 47%), especially left circumflex (20% versus 6.4%) and graft vessel (7.3% versus 0.9%; all P<0.05) compared with those without refractory OHCA. Refractory OHCA group had higher in-hospital mortality (45% versus 30%, P=0.036) and greater new requirement for dialysis (18% versus 6.3%, P=0.011). After adjustment, refractory OHCA was associated with over 2-fold higher odds of in-hospital mortality (odds ratio, 2.28 [95% CI, 1.06-4.89]; P=0.034). CONCLUSIONS: Refractory ventricular fibrillation/pulseless ventricular tachycardia OHCA was associated with more intensive resuscitation, higher rates of acute coronary occlusion, and poorer in-hospital outcomes, underscoring the need for future studies in this extreme-risk subgroup.

Establishing and sustaining an acute care for elders unit: An incremental journey to success.

Acute Care for Elders (ACE) units reduce hospital-associated delirium, functional decline, and lengths of stay. However, establishing and sustaining such units have proven difficult. There are only 43 ACE units among the >3500 hospitals in the United States. This study describes an iterative quality improvement process, which allowed us to establish and sustain an ACE unit care model in a modern academic hospital. This continuous process was centered on implementing the key principles of the ACE unit model of care: patient-centered care assessments, medical care review, specialized prepared environment, early mobilization, physical therapy, and early planning for discharge to home. Quality of care and patient outcomes data for older adults admitted to our ACE unit includes mortality index (observed/expected) consistently <1 (FY22 = 0.86), 30-day readmission rate of <10% (FY22 9.31%), and length of stay index of ~1 (FY22 1.07). We describe how work on our ACE unit has led to hospital-wide initiatives, including dementia-friendly hospital certification. Our hope is that others can use this process to enhance the dissemination of the ACE unit model of care.

Cytomegalovirus infection induces Alzheimer's disease-associated alterations in tau.

Alzheimer's disease (AD) manifests with loss of neurons correlated with intercellular deposition of amyloid (amyloid plaques) and intracellular neurofibrillary tangles of hyperphosphorylated tau. However, targeting AD hallmarks has not as yet led to development of an effective treatment despite numerous clinical trials. A better understanding of the early stages of neurodegeneration may lead to development of more effective treatments. One underexplored area is the clinical correlation between infection with herpesviruses and increased risk of AD. We hypothesized that similar to work performed with herpes simplex virus 1 (HSV1), infection with the cytomegalovirus (CMV) herpesvirus increases levels and phosphorylation of tau, similar to AD tauopathy. We used murine CMV (MCMV) to infect mouse fibroblasts and rat neuronal cells to test our hypothesis. MCMV infection increased steady-state levels of primarily high molecular weight forms of tau and altered the patterns of tau phosphorylation. Both changes required viral late gene products. Glycogen synthase kinase 3 beta (GSK3ß) was upregulated in the HSVI model, but inhibition with lithium chloride suggested that this enzyme is unlikely to be involved in MCMV infection mediated tau phosphorylation. Thus, we confirm that MCMV, a beta herpes virus, like alpha herpes viruses (e.g., HSV1), can promote tau pathology. This suggests that CMV infection can be useful as another model system to study mechanisms leading to neurodegeneration. Since MCMV infects both mice and rats as permissive hosts, our findings from tissue culture can likely be applied to a variety of AD models to study development of abnormal tau pathology.

Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review.

BACKGROUND: Advance care planning (ACP) is a process that involves discussing a person's goals, values, and preferences; it is particularly important for persons living with dementia (PLWD) given that dementia is incurable and progressive. To ensure results that will impact real-world practices, ACP outcome measures must be psychometrically strong, meaningful to key partners, and pragmatic to collect. Therefore, we conducted a scoping review of outcome measures utilized in ACP randomized controlled clinical trials (RCTs) enrolling PLWD or their care partners and evaluated their pragmatic characteristics. METHODS: We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for peer-reviewed ACP RCTs enrolling PLWD or their care partners from 2011 to 2021. We abstracted characteristics of primary and secondary outcome measures, including pragmatic characteristics using an adapted Psychometric and Pragmatic Evidence Rating Scale and ACP outcome domains using the standardized ACP Outcome Framework (i.e., process, action, healthcare, or quality of care). RESULTS: We included 21 ACP RCTs. Trials included 103 outcome measures (39 primary and 64 secondary), of which 11% measured process, 14% measured action, 49% measured healthcare, and 26% measured quality of care. Twenty-four (23%) outcome measures were highly pragmatic, the majority of which (67%) reflected healthcare outcome measures. Sixty-one (59%) outcomes were assessed as highly relevant to PLWD or their care partners. Only 20% (n = 21) of outcome measures were embedded into clinical practice. Most (62%) RCTs were conducted in nursing homes, and 33% were focused PLWD with advanced stage disease. CONCLUSIONS: In RCTs testing ACP interventions to support PLWD, only 23% of outcome measures were highly pragmatic, and most of these measured healthcare utilizations. Outcome assessments were rarely integrated into the EHR during routine clinical care. New outcome measures that address the lived experience of PLWD and their care partners plus have high pragmatic characteristics are needed for embedded pragmatic clinical trials.

Left Ventricular End-Diastolic Pressure for the Prediction of Contrast-Induced Nephropathy and Clinical Outcomes in Patients With ST-Elevation Myocardial Infarction Who Underwent Primary Percutaneous Intervention (the ELEVATE Study).

Contrast-induced nephropathy (CIN) is an important complication of percutaneous coronary intervention (PCI). We investigated whether left ventricular end-diastolic pressure (LVEDP) in patients who underwent PCI might be additive to current risk stratification of CIN. Data from consecutive patients who underwent primary PCI for ST-elevation myocardial infarction between 2013 and 2018 at Western Health in Victoria, Australia were analyzed. CIN was defined as a 25% increase in serum creatinine from baseline or 44 µmol/L increase in absolute value within 48 hours of contrast administration. Compared with patients without CIN (n = 455, 93%), those who developed CIN (n = 35, 7%) were older (64 vs 58 years, p = 0.006), and had higher peak creatine kinase (2,862 [1,258 to 3,952] vs 1,341 U/L [641 to 2,613], p = 0.02). The CIN group had higher median LVEDP (30 [21-33] vs 25 mm Hg [20-30], p = 0.013) and higher median Mehran risk score (MRS) (5 [2-8] vs 2 [1-5], p <0.001). Patients with CIN had more in-hospital major adverse cardiovascular and cerebrovascular events (composite end point of death, new or recurrent myocardial infarction or stent thrombosis, target vessel revascularization or stroke) (23% vs 8.6%, p = 0.01), but similar 30-day major adverse cardiovascular and cerebrovascular events (20% vs 15%, p = 0.46). An LVEDP >30 mm Hg independently predicted CIN (odds ratio 3.4, 95% confidence interval 1.46 to 8.03, p = 0.005). The addition of LVEDP ≥30 mm Hg to MRS marginally improved risk prediction for CIN compared with MRS alone (area-under-curve, c-statistic = 0.71 vs c-statistic = 0.63, p = 0.08). In conclusion, elevated LVEDP ≥30 mm Hg during primary PCI was an independent predictor of CIN in patients treated for ST-elevation myocardial infarction. The addition of LVEDP to the MRS may improve risk prediction for CIN.

Prescriber Perspectives and Experiences with Deprescribing Versus Continuing Bisphosphonates in Older Nursing Home Residents with Dementia.

BACKGROUND: Few guidelines address fracture prevention medication use in nursing home (NH) residents with dementia. OBJECTIVE: We sought to identify factors that influence prescriber decision-making for deprescribing of bisphosphonates for older NH residents with dementia. METHODS: We conducted 12 semi-structured interviews with prescribers who care for older adults with dementia in NHs. MAIN MEASURES: Interview prompts addressed experiences treating fractures, benefits, and harms of bisphosphonates, and experiences with deprescribing. Coding was guided by the social-ecological framework including patient-level (intrapersonal) and external (interpersonal, system, community, and policy) influences. RESULTS: Most prescribers were physicians (83%); 75% were female and 75% were White. Most (75%) spent less than half of their clinical effort in NHs and half were in the first decade of practice. Among patient-level influences, prescribers uniformly agreed that a prior bisphosphonate treatment course of several years, emergence of adverse effects, and changing goals of care or limited life expectancy were compelling reasons to deprescribe. External influences were frequently discussed as barriers to deprescribing. At the interpersonal level, prescribers noted that family/informal caregivers are diverse in their involvement in decision-making, and frequently concerned about the adverse effects of bisphosphonates, but perceive deprescribing as "withdrawing care." At the health system level, prescribers felt that frequent transitions make it difficult to determine duration of prior treatment and to implement deprescribing. At the policy level, prescribers highlighted the lack of guidelines addressing residents with limited mobility and dementia or criteria for deprescribing, including uncertainty in the setting of prior fractures and lack of bone densitometry in NHs. CONCLUSION: Systems-level barriers to evaluating bone densitometry and treatment history in NHs may impede person-centered decision-making for fracture prevention. Further research is needed to evaluate the residual benefits of bisphosphonates in medically complex residents with limited mobility and dementia to inform recommendations for deprescribing versus continued use.

Palliative care to support the needs of adults with neurological disease.

Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. Unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care.

Structure and integration of specialty palliative care in three NCI-designated cancer centers: a mixed methods case study.

INTRODUCTION: Early access to specialty palliative care is associated with better quality of life, less intensive end-of-life treatment and improved outcomes for patients with advanced cancer. However, significant variation exists in implementation and integration of palliative care. This study compares the organizational, sociocultural, and clinical factors that support or hinder palliative care integration across three U.S. cancer centers using an in-depth mixed methods case study design and proposes a middle range theory to further characterize specialty palliative care integration. METHODS: Mixed methods data collection included document review, semi-structured interviews, direct clinical observation, and context data related to site characteristics and patient demographics. A mixed inductive and deductive approach and triangulation was used to analyze and compare sites' palliative care delivery models, organizational structures, social norms, and clinician beliefs and practices. RESULTS: Sites included an urban center in the Midwest and two in the Southeast. Data included 62 clinician and 27 leader interviews, observations of 410 inpatient and outpatient encounters and seven non-encounter-based meetings, and multiple documents. Two sites had high levels of "favorable" organizational influences for specialty palliative care integration, including screening, policies, and other structures facilitating integration of specialty palliative care into advanced cancer care. The third site lacked formal organizational policies and structures for specialty palliative care, had a small specialty palliative care team, espoused an organizational identity linked to treatment innovation, and demonstrated strong social norms for oncologist primacy in decision making. This combination led to low levels of specialty palliative care integration and greater reliance on individual clinicians to initiate palliative care. CONCLUSION: Integration of specialty palliative care services in advanced cancer care was associated with a complex interaction of organization-level factors, social norms, and individual clinician orientation. The resulting middle range theory suggests that formal structures and policies for specialty palliative care combined with supportive social norms are associated with greater palliative care integration in advanced cancer care, and less influence of individual clinician preferences or tendencies to continue treatment. These results suggest multi-faceted efforts at different levels, including social norms, may be needed to improve specialty palliative care integration for advanced cancer patients.

Posttraumatic Stress Symptom Trajectories in Family Caregivers of Patients With Acute Cardiorespiratory Failure.

Importance: Overall, 1 in 3 family caregivers of patients who require intensive care unit (ICU) admission will experience significant posttraumatic stress symptoms (PTSSs), but little is known about how PTSSs evolve over time. Measuring PTSS trajectories could facilitate the development of targeted interventions to improve mental health outcomes for family caregivers of critically ill patients. Objective: To measure 6-month PTSS trajectories among caregivers of patients with acute cardiorespiratory failure. Design, Setting, and Participants: This prospective cohort study was conducted in the medical ICU of a large academic medical center among adult patients requiring (1) vasopressors for shock, (2) high-flow nasal cannula, (3) noninvasive positive pressure ventilation, or (4) invasive mechanical ventilation. Each patient was enrolled along with their primary caregiver, ie, the unpaid individual who provided the most physical, emotional, or financial support prior to ICU admission. Main Outcomes and Measures: Family caregiver PTSSs were assessed using the Impact of Events Scale-Revised within 48 hours of ICU admission, following ICU discharge, and 3 and 6 months after enrollment. Latent class growth analysis was used to measure PTSS trajectories. Preselected patient and caregiver characteristics measured at ICU admission were analyzed for association with trajectory membership. Six-month patient and caregiver outcomes were analyzed by caregiver trajectory. Results: Overall, 95 family caregivers were enrolled and provided baseline data; mean (SD) age was 54.2 (13.6) years, 72 (76%) were women, 22 (23%) were Black individuals, and 70 (74%) were White individuals. Three trajectories were identified: persistently low (51 caregivers [54%]), resolving (29 [31%]), and chronic (15 [16%]). Low caregiver resilience, prior caregiver trauma, high patient severity of illness, and good patient premorbid functional status were associated with the chronic trajectory. Caregivers with the chronic PTSS trajectory had worse 6-month health-related quality of life (mean [SD] total 36-item Short Form Survey score, persistently low trajectory: 104.7 [11.3]; resolving trajectory: 101.7 [10.4]; chronic trajectory: 84.0 [14.4]; P < .001) and reduced effectiveness at work (mean [SD] perceived effectiveness at work score, persistently low trajectory: 86.0 [24.2]; resolving trajectory: 59.1 [32.7]; chronic trajectory: 72.3 [18.4]; P = .009). Conclusions and Relevance: In this study, 3 distinct PTSS trajectories among ICU family caregivers were observed, with 16% of caregivers experiencing chronic PTSSs over the subsequent 6 months. Family caregivers with persistent PTSS had lower resilience, prior trauma, higher patient severity of illness, and higher baseline patient functional status compared with family caregivers with persistently low PTSS, with adverse effects on quality of life and work. Identifying these caregivers is an essential first step to develop interventions tailored to those with the greatest need for support.