INviting Veterans InTo Enrollment in Alzheimer's Disease Research Centers (INVITE-ADRC): An NIA and VA-sponsored initiative to increase veteran participation in aging and dementia research.

INTRODUCTION: Older military veterans often present with unique and complex risk factors for Alzheimer's disease (AD) and related dementias. Increasing veteran participation in research studies offers one avenue to advance the field and improve health outcomes. METHODS: To this end, the National Institute on Aging (NIA) and Department of Veterans Affairs (VA) partnered to build infrastructure, improve collaboration, and intensify targeted recruitment of veterans. This initiative, INviting Veterans InTo Enrollment in Alzheimer's Disease Research Centers (INVITE-ADRC), provided funding for five sites and cross-site organizing structure. Diverse and innovative recruitment strategies were used. RESULTS: Across five sites, 172 veterans entered registries, and 99 were enrolled into ADRC studies. Of the enrolled, 39 were veterans from historically underrepresented racial and ethnic groups. CONCLUSIONS: This initiative laid the groundwork to establish sustainable relationships between the VA and ADRCs. The partnership between both federal agencies demonstrates how mutual interests can accelerate progress. In turn, efforts can help our aging veterans.

Neural responses to gender-based microaggressions in academic medicine.

Gender-based microaggressions have been associated with persistent disparities between women and men in academia. Little is known about the neural mechanisms underlying those often subtle and unintentional yet detrimental behaviors. Here, we assessed the neural responses to gender-based microaggressions in 28 early career faculty in medicine (N = 16 female, N = 12 male sex) using fMRI. Participants watched 33 videos of situations demonstrating gender-based microaggressions and control situations in academic medicine. Video topics had been previously identified through real-life anecdotes about microaggression from women faculty and were scripted and reenacted using professional actors. Primary voxel-wise analyses comparing group differences in activation elucidated a significant group by condition interaction in a right-lateralized cluster across the frontal (inferior and middle frontal gyri, frontal pole, precentral gyrus, postcentral gyrus) and parietal lobes (supramarginal gyrus, angular gyrus). Whereas women faculty exhibited reduced activation in these regions during the microaggression relative to the control condition, the opposite was true for men. Posthoc analyses showed that these patterns were significantly associated with the degree to which participants reported feeling judged for their gender in academic medicine. Lastly, secondary exploratory ROI analyses showed significant between-group differences in the right dorsolateral prefrontal cortex and inferior frontal gyrus. Women activated these two regions less in the microaggression condition compared to the control condition, whereas men did not. These findings indicate that the observation of gender-based microaggressions results in a specific pattern of neural reactivity in women early career faculty.

Healthcare Utilization is High in Adult Patients Relapsing after Allogeneic Hematopoietic Cell Transplantation.

Disease relapse is the leading cause of death for patients with acute leukemia (AL) and myelodysplastic syndrome (MDS) who undergo allogeneic hematopoietic cell transplantation (HCT). Relapse post-HCT is associated with poor prognosis; however, inpatient healthcare utilization of this population is unknown. Here we describe survival, intensity of healthcare utilization, and characteristics associated with high resource use at the end of life (EOL). Adult patients with AL/MDS who underwent HCT at a large regional referral center with subsequent relapse between 2005 and 2015 were included in this retrospective study. We compared the distribution of demographic and clinical characteristics of patients as well as healthcare utilization over 2 years postrelapse and at EOL by postrelapse disease-directed therapeutic interventions. We created a composite score for EOL healthcare utilization intensity by summing the presence of any of the following criteria: death in the hospital, use of chemotherapy, emergency department, hospitalization, intensive care unit, intubation, cardiopulmonary resuscitation, or hemodialysis in the last month of life. Higher scores indicate more intense healthcare use at EOL. Multivariable linear regression analysis was used to determine variables (demographic characteristics, postrelapse treatment group, advance directives documentation, palliative care referral, time to relapse) associated with EOL healthcare utilization intensity. One hundred fifty-four patients were included; median age at relapse was 56 years (interquartile range [IQR], 39 to 63), 55% were men, 79% had AL, and median time from HCT to relapse was 6 months (IQR, 3 to 10). After relapse, 28% received supportive care only, 50% received chemotherapy only, and 22% received chemotherapy plus cell therapy (either donor lymphocyte infusion, second HCT, or donor lymphocyte infusion plus second HCT). With the exception of time until relapse and Karnofsky Performance Status, baseline characteristics (gender, age, race, graft-versus-host disease, year of treatment) did not significantly differ by postrelapse treatment group. One hundred thirty-six patients (88%) died within 2 years of relapse; survival differed significantly by postrelapse treatment group, with those receiving disease-directed treatment showing lower risk of death. Healthcare use in AL/MDS patients after post-HCT relapse was high overall, with 44% visiting the emergency department at least once (22% at least 2 times), 93% hospitalized (55% at least 2 times, 16% at least 5 times), and 38% using the intensive care unit (median length of stay 5, days; IQR, 3 to 10). Use was high even among those receiving only supportive care. For those patients who died, the mean intensity score for EOL healthcare use was 1.8 (standard deviation, 1.8). Most patients (70%) had a marker of high-intensity healthcare utilization at the EOL or died in hospital. In multivariable analysis, an increase in age (estimate -.03 (95% CI, -.06 to -.003) and having AL versus MDS were significantly associated with a decreased EOL healthcare intensity score; no other variables were associated with intensity of EOL healthcare use. Healthcare utilization after post-HCT relapse is associated with receipt of disease-directed therapy but remains high across all groups despite known poor prognosis. Interventions are needed to minimize nonbeneficial treatments and promote goal-concordant EOL care in this seriously ill patient population.

VA Interprofessional Fellowship in Palliative Care: 15 Years of Training Excellence.

Since 2002, the Department of Veterans Affairs (VA) has provided a unique training opportunity in palliative care at six VA medical centers. The VA Interprofessional Fellowship in Palliative Care has trained chaplains, nurses, pharmacists, physicians, psychologists, and social workers to provide clinical palliative care and to develop as leaders in the profession. This article describes the program's origin, mission, outcomes, and lessons learned.

Partnership to Enhance Resident Outcomes for Community Living Center Residents With Dementia: Description of the Protocol and Preliminary Findings.

The goal of this quality improvement project is to improve care planning around preferences for life-sustaining treatments (LST) and daily care to promote quality of life, autonomy, and safety for U.S. Department of Veterans Affairs (VA) Community Living Center (CLC) (i.e., nursing home) residents with dementia. The care planning process occurs through partnerships between staff and family surrogate decision makers. This process is separate from but supports implementation of the LST Decision Initiative-developed by the VA National Center for Ethics in Health Care-which seeks to increase the number, quality, and documentation of goals of care conversations (GOCC) with Veterans who have life-limiting illnesses. The current authors will engage four to six VA CLCs in the Mid-Atlantic states, provide teams with audit and feedback reports, and establish learning collaboratives to address implementation concerns and support action planning. The expected outcomes are an increase in CLC residents with dementia who have documented GOCC and LST plans. [Journal of Gerontological Nursing, 45(3), 21-30.].

Advance Directive Utilization Is Associated with Less Aggressive End-of-Life Care in Patients Undergoing Allogeneic Hematopoietic Cell Transplantation.

Allogeneic hematopoietic cell transplantation (HCT) is associated with significant morbidity and mortality, making advance care planning (ACP) and management especially important in this patient population. A paucity of data exists on the utilization of ACP among allogeneic HCT recipients and the relationship between ACP and intensity of healthcare utilization in these patients. We performed a retrospective review of patients receiving allogeneic HCT at our institution from 2008 to 2015 who had subsequently died after HCT. Documentation and timing of advance directive (AD) completion were abstracted from the electronic medical record. Outcomes of interest included use of intensive care unit (ICU) level of care at any time point after HCT, within 30 days of death, and within 14 days of death; use of mechanical ventilation at any time after HCT; and location of death. Univariate logistic regression was performed to explore associations between AD completion and each outcome. Of the 1031 patients who received allogeneic HCT during the study period, 422 decedents (41%) were included in the analysis. Forty-four percent had AD documentation prior to death. Most patients (69%) indicated that if terminally ill, they did not wish to be subjected to life-prolonging treatment attempts. Race/ethnicity was significantly associated with AD documentation, with non-Hispanic white patients documenting ADs more frequently (51%) compared with Hispanic (22%) or Asian patients (35%; P = .0007). Patients with ADs were less likely to use the ICU during the transplant course (41% for patients with ADs versus 52% of patients without ADs; P = .03) and also were less likely to receive mechanical ventilation at any point after transplantation (21% versus 37%, P < .001). AD documentation was also associated with decreased ICU use at the end of life; relative to patients without ADs, patients with ADs were more likely to die at home or in hospital as opposed to in the ICU (odds ratio, .44; 95% confidence interval, .27 to .72). ACP remains underused in allogeneic HCT. Adoption of a systematic practice to standardize AD documentation as part of allogeneic HCT planning has the potential to significantly reduce ICU use and mechanical ventilation while improving quality of care at end of life in HCT recipients.

Caring for oneself to care for others: physicians and their self-care.

It is well known that clinicians experience distress and grief in response to their patients' suffering. Oncologists and palliative care specialists are no exception since they commonly experience patient loss and are often affected by unprocessed grief. These emotions can compromise clinicians' personal well-being, since unexamined emotions may lead to burnout, moral distress, compassion fatigue, and poor clinical decisions which adversely affect patient care. One approach to mitigate this harm is self-care, defined as a cadre of activities performed independently by an individual to promote and maintain personal well-being throughout life. This article emphasizes the importance of having a self-care and self-awareness plan when caring for patients with life-limiting cancer and discusses validated methods to increase self-care, enhance self-awareness and improve patient care.

Characterizing subgroup performance of probabilistic phenotype algorithms within older adults: a case study for dementia, mild cognitive impairment, and Alzheimer's and Parkinson's diseases.

Objective: Biases within probabilistic electronic phenotyping algorithms are largely unexplored. In this work, we characterize differences in subgroup performance of phenotyping algorithms for Alzheimer's disease and related dementias (ADRD) in older adults. Materials and methods: We created an experimental framework to characterize the performance of probabilistic phenotyping algorithms under different racial distributions allowing us to identify which algorithms may have differential performance, by how much, and under what conditions. We relied on rule-based phenotype definitions as reference to evaluate probabilistic phenotype algorithms created using the Automated PHenotype Routine for Observational Definition, Identification, Training and Evaluation framework. Results: We demonstrate that some algorithms have performance variations anywhere from 3% to 30% for different populations, even when not using race as an input variable. We show that while performance differences in subgroups are not present for all phenotypes, they do affect some phenotypes and groups more disproportionately than others. Discussion: Our analysis establishes the need for a robust evaluation framework for subgroup differences. The underlying patient populations for the algorithms showing subgroup performance differences have great variance between model features when compared with the phenotypes with little to no differences. Conclusion: We have created a framework to identify systematic differences in the performance of probabilistic phenotyping algorithms specifically in the context of ADRD as a use case. Differences in subgroup performance of probabilistic phenotyping algorithms are not widespread nor do they occur consistently. This highlights the great need for careful ongoing monitoring to evaluate, measure, and try to mitigate such differences.

Revelations from a Machine Learning Analysis of the Most Downloaded Articles Published in Journal of Palliative Medicine 1999-2018.

The Journal of Palliative Medicine (JPM) is globally recognized as a leading interdisciplinary peer-reviewed palliative care journal providing balanced information that informs and improves the practice of palliative care. JPM shapes the values, integrity, and standards of the subspecialty of palliative medicine by what it chooses to publish. The global JPM readership chooses to download the articles that are of most relevance and utility to them. Utilizing machine learning methods, the top 100 most downloaded articles in JPM were analyzed to gain a better understanding of any latent trends and patterns in the topics between 1999 and 2018. The top five topic themes identified in the first decade were different from the ones identified in the second decade of publication. There is evidence of differentiation and maturation of the field in the context of comprehensive health care. Although noncancer serious illnesses have still not risen to the same prominence as cancer palliation, there is a directional quality to the emerging evidence as it pertains to cardiac, respiratory, neurological, renal, and other etiologies. Across both decades under study, there was persistent evidence of the importance of understanding and managing the mental health care needs of seriously ill patients and their families. A cause for concern is that the word "spirituality" was prominent in the first decade and was lacking in the second. Future palliative care clinical and research initiatives should focus on its development as an essential interprofessional and medical subspecialty germane to all types of serious illnesses and across all venues.

Palliative Care Is Proven.

Palliative care was officially recognized by the World Health Organization in 1990 as a distinct specialty dedicated to relieving suffering and improving quality of life for patients with serious illnesses. Journal of Palliative Medicine (JPM) was founded in 1997 in response to the need for a scientifically rigorous peer-reviewed journal to advance the field. In our first quarter of the century, JPM has become a leading global peer-reviewed scientific journal. What is the way forward? We engaged with this question in two ways. First, we utilized artificial intelligence techniques to analyze the trends of the articles published in JPM for the past two decades to discern key topic themes. Second, we applied human intelligence by convening seven panels of experts to discuss current topics of interest to the field as a separate strategy for discerning the future. Taken together, the way forward is clear. The field of palliative care has become broader and more subspecialized than anyone ever imagined at the beginning. The expansion of new knowledge has accelerated in all directions from its origins in the end-of-life care of patients with cancer. Although implementation science is of paramount importance, the barriers to implementation of this growing body of specialized knowledge lie not just with the need for more science. Some of the barriers lie within our field. The way forward requires confidence in what we know and the establishment of new collaborations outside of our field, including with people outside of traditional health care.

Factors affecting the recruitment of Hispanic/Latinx American older adults in clinical trials in the United States: A scoping review.

OBJECTIVE: Participation of Hispanic/Latinx American older adults (HLAOA) in clinical trials is fundamental to health equity in aging research. However, information on strategies for the successful recruitment of this population in clinical trials is limited. DESIGN: This scoping review aims to identify hindering and facilitating factors that impact the recruitment of HLAOA in clinical trials in the United States. METHODS: Two databases (PubMed, EMBASE) were searched for original research articles from inception until March 2022 reporting on factors that engaged HLAoa (≥65) in clinical trials. One thousand and thirteen studies were scrutinized to identify 31 eligible articles. RESULTS: Most articles were from cancer clinical trials (14 studies). Hindering factors that impacted the recruitment of HLAoa in clinical trials were related to (i) study design and logistics challenges, (ii) challenges imposed by social determinants of health, (iii) communication barriers, and (iv) patients' mistrust, and (v) family issues. Facilitating factors include (i) effective modes of outreach, (ii) strategic clinical trial design, (iii) incorporating culturally-respectful approaches that are tailored to the participants' sociocultural background, and (iv) bridging language barriers. CONCLUSIONS: Successful recruitment of HLAOA into clinical trials requires identifying the study question, co-designing the trial design, implementation, and evaluation in respectful collaboration with the Hispanic/Latinx community with careful attention to their needs and minimizing the study burden on this vulnerable population. Factors identified here may guide researchers to better understand the needs of HLAOA and successfully recruit them into clinical trials, leading to more equitable research that increases their representation in clinical research.

Patient-Reported Quality Measures for Palliative Care: The Time is now.

CONTEXT: While progress has been made in the ability to measure the quality of hospice and specialty palliative care, there are notable gaps. A recent analysis conducted by Center for Medicare and Medicaid Services (CMS) revealed a paucity of patient-reported measures, particularly in palliative care domains such as symptom management and communication. OBJECTIVES: The research team, consisting of quality measure and survey developers, psychometricians, and palliative care clinicians, used established state-of-the art methods for developing and testing patient-reported measures. METHODS: We applied a patient-centered, patient-engaged approach throughout the development and testing process. This sequential process included 1) an information gathering phase; 2) a pre-testing phase; 3) a testing phase; and 4) an endorsement phase. RESULTS: To fill quality measure gaps identified during the information gathering phase, we selected two draft measures ("Feeling Heard and Understood" and "Receiving Desired Help for Pain") for testing with patients receiving palliative care in clinic-based settings. In the pre-testing phase, we used an iterative process of cognitive interviews to refine draft items and corresponding response options for the proposed measures. The alpha pilot test supported establishment of protocols for the national beta field test. Measures met conventional criteria for reliability, had strong face and construct validity, and there was diversity in program level scores. The measures received National Quality Forum (NQF) endorsement. CONCLUSION: These measures highlight the key role of patient voices in palliative care and fill a much-needed gap for patient-reported experience measures in our field.

Augmenting group hoarding disorder treatment with virtual reality discarding: A pilot study in older adults.

Hoarding disorder is common and debilitating, especially in older adults, and novel treatment approaches are needed. Many current treatments emphasize skills related to discarding and decision-making about possessions, which can be practiced in the patient's home. However in many cases, in-home visits are unfeasible, or real-life discarding is too difficult. Virtual reality (VR) offers the ability to create a virtual "home" including 3D scans of the patient's actual possessions that can be moved or discarded. VR discarding is an alternative to in-home visits and an approach that provides a stepping stone to real-life discarding. VR has been successfully utilized to treat many disorders but tested minimally in hoarding disorder. In nine older adults with hoarding disorder, we tested an 8-week VR intervention administered to augment a 16-week Buried in Treasures group treatment. Individualized VR rooms were uniquely modeled after each patient's home. During clinician-administered VR sessions, patients practiced sorting and discarding their virtual possessions. The intervention was feasible to administer. Open-ended participant responses, examined by two independent evaluators, indicated that VR sessions were well-tolerated and that participants found them useful, with nearly all participants noting that VR helped them increase real-life discarding. Self-reported hoarding symptoms decreased from baseline to close, with seven of the nine participants showing reliable improvement in this timeframe and none showing deterioration. Results from this exploratory pilot study suggest that VR is a feasible way to simulate an at-home sorting and discarding experience in a manner that may augment skills acquisition. It remains an open question whether VR discarding practice yields greater improvement than existing treatments. VR for this population merits further clinical investigation.

Mid-Career Training to Advance Palliative Care.

The demand for specialist palliative medicine physicians, advanced practice providers, and other team members outstrips supply. Traditional paths to specialty practice will not meet projected need. Therefore, innovation and research are required. One innovation is the training of midcareer professionals; those who have been in practice and want to change to palliative care. Barriers to leaving practice and returning to traditional training are high; not the least of which is the opportunity cost. In this roundtable, experts discuss what they have learned from current research, and point the way to additional needed research.

Incentives for Palliative Care.

The past 25 years have proved that palliative care is effective in improving care of seriously ill patients. Research attention must pivot to focus on policy changes and systems and models of care that ensure easy access to quality palliative care to all patients who need it. Education, alone, has not worked. Leaving it to individual organizations to decide has not worked. The question of whether incentives should be used has arisen. Should we design treatment algorithms, such as for cardiopulmonary resuscitation, where palliative care is part of standard care and requires an "opt out"? Should payers pay more to health care organizations who demonstrate they provide universal access to palliative care and how can we control for unintended consequences? Should provision of specialist palliative care be required for a health care organization to be accredited? How can we advance the state of the science and best support the workforce?

Caught in a Loop with Advance Care Planning and Advance Directives: How to Move Forward?

Completion of an advance care planning (ACP) process and/or an advance directive should result in patients receiving the care they desire at the end of life. However, three decades of research have shown that is just not the case. ACP has been a front runner in developing the science within palliative care. Some positive outcomes such as lowering levels of surrogate grief may be associated with ACP. Yet, it does not appear that further ACP research will ensure that seriously ill patients will get goal-concordant care. An unfortunate consequence of palliative care research and advocacy so far is the misguided notion of many hospital systems trying to solve their palliative care problems by only implementing an ACP initiative. At best, ACP is but one tool in the collective palliative care toolbox. New tools are needed. Given that we have finite resources, future research should focus more on tools to improve symptom management, better models of care, and systems that will ensure goal-concordant care that meet the needs of the population that the health care system is designed to meet.

Generalist versus Specialist Palliative Medicine.

The issue of generalist versus specialist palliative care is on the minds of healthcare leaders everywhere. We are amid changing demographics of physicians. The industrialization of medicine is well underway in the US and around the developing world. Is it important to identify patients who benefit the most from specialist palliative care, given that it is currently a limited resource? Should we step out of standard practice and redesign palliative care using principles of population management? The COVID pandemic rapidly introduced virtual palliative care consults. Is it a better way to promote wide access to specialty palliative care? Looking forward, should we promote ways to advance primary palliative care and reserve specialty palliative care to patients who will benefit most from this level of care? These questions, and others, are considered in this transcribed discussion between leading physicians in the field.

25 Years: Looking Back, Looking Forward.

Palliative medicine and the practice of palliative care has disseminated around the world for the past 25 years. In many countries, palliative medicine is a formally recognized specialty of medicine. Yet, there is a high variability, due in part to the variable resources devoted to its development. New research is needed to improve our ability to control symptoms and to know how best to implement the existing science so that the patients who need palliative care can get it easily and equitably. Achieving this level of access requires expertise in organizational structure and system change strategies. Building the evidence base for best practices requires us to forge research collaborations with collegues from all medical subspecialities, including experts from allied health disciplines, and partner closely with patients and families. It also compels us to look critically at ourselves to overcome the barriers we put in our own way to becoming a routine part of standard health care in all countries.

Symptom Control Research.

The need for symptom control research has never been greater. Yet, this is an underdeveloped area in hospice and palliative care. Expert symptom control researchers point out a number of issues that show the way forward over the next 25 years. Chief among them is the need to do the research, rather than being content with the evidence we have. A barrier is to have the self-discipline to honestly evaluate the state of the palliative care science where the gold standard of randomized controlled trials has not been used to establish current practice. Commitment to organized symptom control research groups and clinical trials networks is important. Combining symptom control research with disease-directed research is a promising way forward. Investing in training junior clinicians and researchers is critical. All palliative care fellows and clinicians must receive training in the basics of research methods so that they can effectively support and advance research and evidence-based best practices.