Dissemination and Implementation of a Community Health Worker Intervention for Disparities in Palliative Care (DeCIDE PC): a study protocol for a hybrid type 1 randomized controlled trial.

BACKGROUND: There are persistent racial and ethnic health disparities in end-of-life health outcomes in the United States. African American patients are less likely than White patients to access palliative care, enroll in hospice care, have documented goals of care discussions with their healthcare providers, receive adequate symptom control, or die at home. We developed Community Health Worker Intervention for Disparities in Palliative Care (DeCIDE PC) to address these disparities. DeCIDE PC is an integrated community health worker (CHW) palliative care intervention that uses community health workers (CHWs) as care team members to enhance the receipt of palliative care for African Americans with advanced cancer. The overall objectives of this study are to (1) assess the effectiveness of the DeCIDE PC intervention in improving palliative care outcomes amongst African American patients with advanced solid organ malignancy and their informal caregivers, and (2) develop generalizable knowledge on how contextual factors influence implementation to facilitate dissemination, uptake, and sustainability of the intervention. METHODS: We will conduct a multicenter, randomized, assessor-blind, parallel-group, pragmatic, hybrid type 1 effectiveness-implementation trial at three cancer centers across the United States. The DeCIDE PC intervention will be delivered over 6 months with CHW support tailored to the individual needs of the patient and caregiver. The primary outcome will be advance care planning. The treatment effect will be modeled using logistic regression. The secondary outcomes are quality of life, quality of communication, hospice care utilization, and patient symptoms. DISCUSSION: We expect the DeCIDE PC intervention to improve integration of palliative care, reduce multilevel barriers to care, enhance clinic and patient linkage to resources, and ultimately improve palliative care outcomes for African American patients with advanced cancer. If found to be effective, the DeCIDE PC intervention may be a transformative model with the potential to guide large-scale adoption of promising strategies to improve palliative care use and decrease disparities in end-of-life care for African American patients with advanced cancer in the United States. TRIAL REGISTRATION: Registered on ClinicalTrials.gov (NCT05407844). First posted on June 7, 2022.

Respecting Faith, Hope, and Miracles in African American Christian Patients at End-of-Life: Moving from Labeling Goals of Care as "Aggressive" to Providing Equitable Goal-Concordant Care.

In this article, we demonstrate first how the term "aggressive care," used loosely by clinicians to denote care that can negatively impact quality of life in serious illness, is often used to inappropriately label the preferences of African American patients, and discounts, discredits, and dismisses the deeply held beliefs of African American Christians. This form of biased communication results in a higher proportion of African Americans than whites receiving care that is non-goal-concordant and contributes to the prevailing lack of trust the African American community has in our healthcare system. Second, we invite clinicians and health care centers to make the perspectives of socially marginalized groups (in this case, African American Christians) the central axis around which we find solutions to this problem. Based on this, we provide insight and understanding to clinicians caring for seriously ill African American Christian patients by sharing their beliefs, origins, and substantive importance to the African American Christian community. Third, we provide recommendations to clinicians and healthcare systems that will result in African Americans, regardless of religious affiliation, receiving equitable levels of goal-concordant care if implemented. KEY MESSAGE: Labeling care at end-of-life as "aggressive" discounts the deeply held beliefs of African American Christians. By focusing on the perspectives of this group clinicians will understand the importance of respecting their religious values. The focus on providing equitable goal-concordant care is the goal.

Piloting the Sexual and Gender Minority Cancer Curricular Advances for Research and Education (SGM Cancer CARE) Workshop: Research Training in the Service of SGM Cancer Health Equity.

The purpose of this study is to describe the context, curriculum design, and pilot evaluation of the educational program "Sexual and Gender Minority Cancer Curricular Advances for Research and Education" (SGM Cancer CARE), a workshop for early-career researchers and healthcare providers interested in gaining knowledge and skills in sexual and gender minority (SGM) cancer research and healthcare advocacy. A needs assessment of a sample of clinicians and researchers (n = 104) and feedback from an Advisory Board informed the curriculum design of the SGM Cancer CARE workshop. Four SGM-tailored modules, focusing on epidemiology, clinical research, behavioral science and interventions, and community-based participatory approaches, were developed and tested in a 2.5-day virtual format among 19 clinicians and researchers. A fifth module to provide feedback to participants on brief presentations about their SGM cancer research ideas or related efforts was added later. A mixed-methods evaluation comprised of pre- and post-modular online evaluation surveys and virtual focus groups was used to determine the degree to which the workshop curriculum met participant needs. Compared to pre-module evaluations, participants reported a marked increase in SGM cancer research knowledge in post-module scores. Quantitative results were supported by our qualitative findings. In open field response survey questions and post-workshop focus groups, participants reported being extremely pleased with the content and delivery format of the SGM Cancer CARE workshop. Participants did regret not having the opportunity to connect with instructors, mentors, and colleagues in person. The SGM Cancer CARE curriculum was shown to increase the knowledge, skills, and level of preparedness of early-career clinicians and scientists to conduct culturally relevant and appropriate research needed to improve care for SGM persons across the cancer care continuum from prevention to survivorship.

Preserving independence among under-resourced older adults in the Southeastern United States: existing barriers and potential strategies for research.

Disability prevention and preservation of independence is crucial for successful aging of older adults. To date, relatively little is known regarding disparities in independent aging in a disadvantaged older adult population despite widely recognized health disparities reported in other populations and disciplines. In the U.S., the Southeastern region also known as "the Deep South", is an economically and culturally unique region ravaged by pervasive health disparities - thus it is critical to evaluate barriers to independent aging in this region along with strategies to overcome these barriers. The objective of this narrative review is to highlight unique barriers to independent aging in the Deep South and to acknowledge gaps and potential strategies and opportunities to fill these gaps. We have synthesized findings of literature retrieved from searches of computerized databases and authoritative texts. Ultimately, this review aims to facilitate discussion and future research that will help to address the unique challenges to the preservation of independence among older adults in the Deep South region.

Engaging Social Justice Methods to Create Palliative Care Programs That Reflect the Cultural Values of African American Patients with Serious Illness and Their Families: A Path Towards Health Equity.

Cultural values influence how people understand illness and dying, and impact their responses to diagnosis and treatment, yet end-of-life care is rooted in white, middle class values. Faith, hope, and belief in God's healing power are central to most African Americans, yet life-preserving care is considered "aggressive" by the healthcare system, and families are pressured to cease it.

Disparities and Racism Experienced Among Older African Americans Nearing End of Life.

Purpose of Review: The purpose of this review is to examine racism in healthcare as it relates to older African American adults. We focus on health disparities in old age and medical mismanagement throughout their lifespan. Recent Findings: In the United States there have been extensive medical advances over the past several decades. Individuals are living longer, and illnesses that were deemed terminal in the past are now considered chronic illnesses. While most individuals living with chronic illness have experienced better quality of life, this is not the case for many African American older adults. Summary: Older African American adults are less likely to have their chronic illness sufficiently managed and are more likely to die from chronic illnesses that are well controlled in Whites. African American older adults also continue to suffer from poorer healthcare outcomes throughout the lifespan to end-of-life.

Protecting our Elders and Developing Equitable Policies During Public Health Emergencies: Ethical Recommendations.

Purpose of the Review: Experiences of patients, families, healthcare workers and health systems during the COVID-19 pandemic and recent national focus on racial justice have forced a reconsideration of policies and processes of providing care in crisis situations when resources are scarce. The purpose of this review is to present recent developments in conceptualizing ethical crisis standards. Recent findings: Several recent papers have raised concerns that "objective" scarce resource allocation protocols will serve to exacerbate underlying social inequities. Older adults and their formal and informal caregivers suffered from intersecting planning failures including lack of adequate stockpiling of personal protective equipment, failure to protect essential workers, neglect of long-term care facilities and homecare in disaster planning and de-prioiritization in triage algorithms. Summary: Revision of disaster planning guidelines is urgent. The time is now to apply lessons learned from COVID-19 before another disaster occurs. We present several suggestions for future plans.

Community Tele-pal: A community-developed, culturally based palliative care tele-consult randomized controlled trial for African American and White Rural southern elders with a life-limiting illness.

BACKGROUND: Patients living in rural areas experience a variety of unmet needs that result in healthcare disparities. The triple threat of rural geography, racial inequities, and older age hinders access to high-quality palliative care (PC) for a significant proportion of Americans. Rural patients with life-limiting illness are at risk of not receiving appropriate palliative care due to a limited specialty workforce, long distances to treatment centers, and limited PC clinical expertise. Although culture strongly influences people's response to diagnosis, illness, and treatment preferences, culturally based care models are not currently available for most seriously ill rural patients and their family caregivers. The purpose of this randomized clinical trial (RCT) is to compare a culturally based tele-consult program (that was developed by and for the rural southern African American (AA) and White (W) population) to usual hospital care to determine the impact on symptom burden (primary outcome) and patient and care partner quality of life (QOL), care partner burden, and resource use post-discharge (secondary outcomes) in hospitalized AA and White older adults with a life-limiting illness. METHODS: Community Tele-pal is a three-site RCT that will test the efficacy of a community-developed, culturally based PC tele-consult program for hospitalized rural AA and W older adults with life-limiting illnesses (n = 352) and a care partner. Half of the participants (n = 176) and a care partner (n = 176) will be randomized to receive the culturally based palliative care consult. The other half of the patient participants (n = 176) and care partners (n = 176) will receive usual hospital care appropriate to their illness. DISCUSSION: This is the first community-developed, culturally based PC tele-consult program for rural southern AA and W populations. If effective, the tele-consult palliative program and methods will serve as a model for future culturally based PC programs that can reduce patients' symptoms and care partner burden. TRIAL REGISTRATION: ClinicalTrials.gov NCT03767517 . Registered on 27 December 2018.

Reducing Disparities in the Quality of Palliative Care for Older African Americans through Improved Advance Care Planning: Study Design and Protocol.

Advance care planning (ACP) improves end-of-life care for patients and their caregivers. However, only one-third of adults have participated in ACP and rates are substantially lower among African Americans than among whites. Importantly, ACP improves many domains of care where there are racial disparities in outcomes, including receipt of goal-concordant care, hospice use, and provider communication. Yet, few studies have examined the effectiveness of ACP interventions among African Americans. The objectives of reducing disparities in the quality of palliative care for older African Americans through improved advance care planning (EQUAL ACP) are as follows: to compare the effectiveness of two interventions in (1) increasing ACP among African Americans and whites and (2) reducing racial disparities in both ACP and end-of-life care; and to examine whether racial concordance of the interventionist and patient is associated with ACP. EQUAL ACP is a longitudinal, multisite, cluster randomized trial and a qualitative study describing the ACP experience of participants. The study will include 800 adults ≥65 years of age (half African American and half white) from 10 primary care clinics in the South. Eligible patients have a serious illness (advanced cancer, heart failure, lung disease, etc.), disability in activities of daily living, or recent hospitalization. Patients are followed for one year and participate in either a patient-guided, self-management ACP approach, including a Five Wishes form or structured ACP with Respecting Choices First Steps. The primary outcome is formal or informal ACP-completion of advance directives, documented discussions with clinicians, and other written or verbal communication with surrogate decision makers about care preferences. Secondary outcomes assessed through after-death interviews with surrogates of patients who die during the study include receipt of goal-concordant care, health services use in the last year of life, and satisfaction with care. EQUAL ACP is the first large study to assess which strategies are most effective at both increasing rates of ACP and promoting equitable palliative care outcomes for seriously ill African Americans.

Social Inequalities in Palliative Care for Cancer Patients in the United States: A Structured Review.

OBJECTIVES: To identify patterns of access to and use or provision of palliative care services in medically underserved and vulnerable groups diagnosed with cancer. DATA SOURCES: Google Scholar, PubMed, MEDLINE, and Web of Science were searched to identify peer-reviewed studies that described palliative care in medically underserved or vulnerable populations diagnosed with cancer. CONCLUSION: Disparities in both access and referral to palliative care are evident in many underserved groups. There is evidence that some groups received poorer quality of such care. IMPLICATIONS FOR NURSING PRACTICE: Achieving health equity in access to and receipt of quality palliative care requires prioritization of this area in clinical practice and in research funding.

Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making.

Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality palliative care for all, both domestically and internationally.

Opioid Prescription Drug Use and Expenditures in US Outpatient Physician Offices: Evidence from Two Nationally Representative Surveys.

BACKGROUND: Opioids are widely prescribed for their analgesic properties. Chronic opioid use is a persistent problem in the US. Nevertheless, little is known about its prescribing and utilization patterns and overall expenditures. OBJECTIVE: This study examined secular trends in opioid prescription drug utilization and expenditures, along with factors associated with opioid prescription drug use in US physician offices. METHODS: National Ambulatory Medical Care Survey (NAMCS) and Medical Expenditure Panel Survey (MEPS) data (2006-2010), both nationally representative surveys, were used to assess the trend, predictors of opioid prescription among US adults (more than 18 years) and the opioid-associated expenditures as a whole and borne by the patients in outpatient settings. RESULTS: Opioid prescription drugs use among US adults in outpatient settings, as a percentage of all prescription drugs, showed a gradual increase since 2006, leveling off in 2010. Opioid prescription drug expenditures showed an upward trend from 2009 after declining over three years. Mean out-of-pocket payments per prescription steadily declined over study period. LIMITATIONS: Cross-sectional nature and visit based information of NAMCS do not provide the actual prevalence and the reason for opioid prescription. CONCLUSIONS: Given the upward trend in opioid prescription drug utilization and associated expenditures, clinicians may benefit from evidence-based methods of monitoring prescription opioid use to prevent misuse, abuse, and other adverse patient outcomes. FUNDING: Drs. Qureshi, Haider, Ball, Horner and Bennett's efforts are partially supported by the University of South Carolina's ASPIRE I. Dr. Wooten's effort is funded by the National Institute on Drug Abuse (K01DA037412).

National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

The National Institutes of Health (NIH) Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was cosponsored by the NIH Office of Disease Prevention and the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Working Group. A multidisciplinary working group developed the agenda, and an Evidence-based Practice Center prepared an evidence report through a contract with the Agency for Healthcare Research and Quality to facilitate the discussion. During the 1.5-day workshop, invited experts discussed the body of evidence and attendees had the opportunity to comment during open discussions. After weighing evidence from the evidence report, expert presentations, and public comments, an unbiased, independent panel prepared a draft report that identified research gaps and future research priorities. The report was posted on the NIH Office of Disease Prevention Web site for 4 weeks for public comment.