Patient navigation across the cancer care continuum: An overview of systematic reviews and emerging literature.

Patient navigation is a strategy for overcoming barriers to reduce disparities and to improve access and outcomes. The aim of this umbrella review was to identify, critically appraise, synthesize, and present the best available evidence to inform policy and planning regarding patient navigation across the cancer continuum. Systematic reviews examining navigation in cancer care were identified in the Cochrane Central Register of Controlled Trials (CENTRAL), PubMed, Embase, Cumulative Index of Nursing and Allied Health (CINAHL), Epistemonikos, and Prospective Register of Systematic Reviews (PROSPERO) databases and in the gray literature from January 1, 2012, to April 19, 2022. Data were screened, extracted, and appraised independently by two authors. The JBI Critical Appraisal Checklist for Systematic Review and Research Syntheses was used for quality appraisal. Emerging literature up to May 25, 2022, was also explored to capture primary research published beyond the coverage of included systematic reviews. Of the 2062 unique records identified, 61 systematic reviews were included. Fifty-four reviews were quantitative or mixed-methods reviews, reporting on the effectiveness of cancer patient navigation, including 12 reviews reporting costs or cost-effectiveness outcomes. Seven qualitative reviews explored navigation needs, barriers, and experiences. In addition, 53 primary studies published since 2021 were included. Patient navigation is effective in improving participation in cancer screening and reducing the time from screening to diagnosis and from diagnosis to treatment initiation. Emerging evidence suggests that patient navigation improves quality of life and patient satisfaction with care in the survivorship phase and reduces hospital readmission in the active treatment and survivorship care phases. Palliative care data were extremely limited. Economic evaluations from the United States suggest the potential cost-effectiveness of navigation in screening programs.

Radiation therapy-associated toxicity: Etiology, management, and prevention.

Radiation therapy (RT) is a curative treatment for many malignancies and provides effective palliation in patients with tumor-related symptoms. However, the biophysical effects of RT are not specific to tumor cells and may produce toxicity due to exposure of surrounding organs and tissues. In this article, the authors review the clinical context, pathophysiology, risk factors, presentation, and management of RT side effects in each human organ system. Ionizing radiation works by producing DNA damage leading to tumor death, but effects on normal tissue may result in acute and/or late toxicity. The manifestation of toxicity depends on both cellular characteristics and affected organs' anatomy and physiology. There is usually a direct relationship between the radiation dose and volume to normal tissues and the risk of toxicity, which has led to guidelines and recommended dose limits for most tissues. Side effects are multifactorial, with contributions from baseline patient characteristics and other oncologic treatments. Technological advances in recent decades have decreased RT toxicity by dramatically improving the ability to deliver RT that maximizes tumor dose and minimizes organ dose. Thus the study of RT-associated toxicity is a complex, core component of radiation oncology training that continues to evolve alongside advances in cancer management. Because RT is used in up to one-half of all patients with cancer, an understanding of its acute and late effects in different organ systems is clinically pertinent to both oncologists and nononcologists.

Follow the trail: Using insights from the growth of palliative care to propose a roadmap for cancer rehabilitation.

Despite research explicating the benefits of cancer rehabilitation interventions to optimize physical, social, emotional, and vocational functioning, many reports document low rates of referral to and uptake of rehabilitation in oncology. Cancer rehabilitation clinicians, researchers, and policy makers could learn from the multidisciplinary specialty of palliative care, which has benefited from a growth strategy and has garnered national recognition as an important and necessary aspect of oncology care. The purpose of this article is to explore the actions that have increased the uptake and integration of palliative care to yield insights and multimodal strategies for the development and growth of cancer rehabilitation. After examining the history of palliative care and its growth, the authors highlight 5 key strategies that may benefit the field of cancer rehabilitation: 1) stimulating the science in specific gap areas; 2) creating clinical practice guidelines; 3) building clinical capacity; 4) ascertaining and responding to public opinion; and 5) advocating for public policy change. Coordinated and simultaneous advances on these 5 strategies may catalyze the growth, utilization, and effectiveness of patient screening, timely referrals, and delivery of appropriate cancer rehabilitation care that reduces disability and improves quality of life for cancer survivors who need these services.

How I communicate with patients and families about germ line genetic information.

Because germ line genetic testing is increasingly integrated into the clinical care of patients with hematologic malignancies, it is important for hematologists to effectively communicate with patients and their families about the genetic testing process and to relay the results in a concise and understandable manner. Effective communication facilitates trust between patients and providers and allows patients to feel empowered to ask questions and actively participate in their health care. Especially for inherited conditions, the patient's understanding of germ line genetic information is critical because it enables them to share this information with relatives who are at risk, thereby promoting cascade testing and providing potentially life-saving information to family members who may be similarly affected. Accordingly, a hematologist's skills in understanding the importance and implications of germ line genetic information and the ability to convey this information in patient-friendly language is a critical first step and can have a far-reaching impact. In this article, we outline a straightforward approach to discussing genetic information and provide the reader with practical tips that can be used when consenting patients to germ line genetic testing and disclosing subsequent test results. We also review special considerations and ethical concerns arising when offering genetic evaluation and germ line testing to patients and related donors for allogeneic hematopoietic stem cell transplantation.

Improving patient and caregiver outcomes in oncology: Team-based, timely, and targeted palliative care.

Over the past decade, a large body of evidence has accumulated supporting the integration of palliative care into oncology practice for patients with advanced cancer. The question is no longer whether palliative care should be offered, but what is the optimal model of delivery, when is the ideal time to refer, who is in greatest need of a referral, and how much palliative care should oncologists themselves be providing. These questions are particularly relevant given the scarcity of palliative care resources internationally. In this state-of-the-science review directed at the practicing cancer clinician, the authors first discuss the contemporary literature examining the impact of specialist palliative care on various health outcomes. Then, conceptual models are provided to support team-based, timely, and targeted palliative care. Team-based palliative care allows the interdisciplinary members to address comprehensively the multidimensional care needs of patients and their caregivers. Timely palliative care, at its best, is preventive care to minimize crises at the end of life. Targeted palliative care involves identifying the patients most likely to benefit from specialist palliative care interventions, akin to the concept of targeted cancer therapies. Finally, the strengths and weaknesses of innovative care models, such as outpatient clinics, embedded clinics, nurse-led palliative care, primary palliative care provided by oncology teams, and automatic referral, are summarized. Moving forward, more research is needed to determine how different health systems can best personalize palliative care to provide the right level of intervention, for the right patient, in the right setting, at the right time. CA Cancer J Clin. 2018;680:00-00. 2018 American Cancer Society, Inc.

Expanding the Paradigm for Cardiovascular Palliative Care.

Cardiovascular disease (CVD) is the leading cause of death worldwide. Despite medical advances, patients with CVD experience high morbidity and mortality rates, affecting their quality of life and death. Among CVD conditions, palliative care has been studied mostly in patients with heart failure, where palliative care interventions have been associated with improvements in patient-centered outcomes, including quality of life, end-of-life care, and health care use. Although palliative care is now incorporated into the American Heart Association/American College of Cardiology/Heart Failure Society of America guidelines for heart failure, the role of palliative care for non-heart failure CVD remains uncertain. Across all causes of CVD, palliative care can play an important role in all domains of CVD care from initial diagnosis to terminal care. In addition to general cardiovascular palliative care practices applicable to all areas, disease-specific palliative care needs may warrant individualized palliative care models. In this review, we discuss the role of cardiovascular palliative care for ischemic heart disease, valvular disease, arrhythmias, peripheral artery disease, and adult congenital heart disease. Although there are multiple barriers to cardiovascular palliative care, we recommend a framework for studying and developing cardiovascular palliative care models to improve patient-centered goal-concordant care for this underserved patient population.

Person-Centered Models for Cardiovascular Care: A Review of the Evidence: A Scientific Statement From the American Heart Association.

Cardiovascular disease remains the leading cause of death and disability in the United States and globally. Disease burden continues to escalate despite technological advances associated with improved life expectancy and quality of life. As a result, longer life is associated with multiple chronic cardiovascular conditions. Clinical guidelines provide recommendations without considering prevalent scenarios of multimorbidity and health system complexities that affect practical adoption. The diversity of personal preferences, cultures, and lifestyles that make up one's social and environmental context is often overlooked in ongoing care planning for symptom management and health behavior support, hindering adoption and compromising patient outcomes, particularly in groups at high risk. The purpose of this scientific statement was to describe the characteristics and reported outcomes in existing person-centered care delivery models for selected cardiovascular conditions. We conducted a scoping review using Ovid MEDLINE, Embase.com, Web of Science, CINAHL Complete, Cochrane Central Register of Controlled Trials through Ovid, and ClinicalTrials.gov from 2010 to 2022. A range of study designs with a defined aim to systematically evaluate care delivery models for selected cardiovascular conditions were included. Models were selected on the basis of their stated use of evidence-based guidelines, clinical decision support tools, systematic evaluation processes, and inclusion of the patient's perspective in defining the plan of care. Findings reflected variation in methodological approach, outcome measures, and care processes used across models. Evidence to support optimal care delivery models remains limited by inconsistencies in approach, variation in reimbursement, and inability of health systems to meet the needs of patients with chronic, complex cardiovascular conditions.

Consensus recommendations for improving the cancer clinical trial matching environment.

Enrollment in cancer clinical trials cannot occur without first successfully identifying trials for which patients are a match based on their clinical characteristics. A lack of onsite matching trials has been identified as the single largest barrier preventing patients from participating in clinical trials. The site-agnostic cancer clinical trial matching environment is a mix of public and private tools and infrastructure that are not designed to work together to facilitate trial matching in an efficient manner. To identify policy and infrastructure solutions that could enable more effective and more frequent use of third-party site-agnostic matching, the American Cancer Society Cancer Action Network held a summit to examine challenges and propose consensus recommendations that could address those challenges. At this 2019 summit, stakeholders in this field examined these barriers and challenges and made a number of policy and infrastructure recommendations to improve the ability of this environment to work in a more coordinated and efficient manner.

Factors influencing parents' choice of palliative treatment goals for children with relapsed or refractory neuroblastoma: A multi-site longitudinal survey study.

BACKGROUND: Many parents of children with advanced cancer report curative goals and continue intensive therapies that can compound symptoms and suffering. Factors that influence parents to choose palliation as the primary treatment goal are not well understood. The objective of this study was to examine experiences impacting parents' report of palliative goals adjusted for time. The authors hypothesized that awareness of poor prognosis, recall of oncologists' prognostic disclosure, intensive treatments, and burdensome symptoms and suffering would influence palliative goal-setting. METHODS: The authors collected prospective, longitudinal surveys from parents of children with relapsed/refractory neuroblastoma at nine pediatric cancer centers across the United States, beginning at relapse and continuing every 3 months for 18 months or until death. Hypothesized covariates were examined for possible associations with parental report of palliative goals. Generalized linear mixed models were used to evaluate factors associated with parents' report of palliative goals at different time points. RESULTS: A total of 96 parents completed surveys. Parents were more likely to report a primary goal of palliation when they recalled communication about prognosis by their child's oncologist (odds ratio [OR], 52.48; p = .010). Treatment intensity and previous ineffective therapeutic regimens were not associated with parents' report of palliative goals adjusted for time. A parent who reported new suffering for their child was less likely to report palliative goals (OR, 0.13; p = .008). CONCLUSIONS: Parents of children with poor prognosis cancer may not report palliative goals spontaneously in the setting of treatment-related suffering. Prognostic communication, however, does influence palliative goal-setting. Evidence-based interventions are needed to encourage timely, person-centered prognostic disclosure in the setting of advanced pediatric cancer. PLAIN LANGUAGE SUMMARY: Many parents of children with poor-prognosis cancer continue to pursue curative treatments that may worsen symptoms and suffering. Little is known about which factors influence parents to choose palliative care as their child's main treatment goal. To explore this question, we asked parents of children with advanced neuroblastoma across the United States to complete multiple surveys over time. We found that the intensity of treatment, number of treatments, and suffering from treatment did not influence parents to choose palliative goals. However, when parents remembered their child's oncologist talking about prognosis, they were more likely to choose palliative goals of care.

"It's Incapacitated Me in so Many Ways": Older Adults' Lived Experience With Postoperative Symptoms at Home After Major Elective Surgery.

OBJECTIVE: This qualitative study aimed to explore the challenges faced by older adults regarding the postoperative symptom experience after major elective surgery. BACKGROUND: Although extensively studied in oncology settings, the impact of postoperative symptom burden remains largely underexplored in elective major surgery among older adults. METHODS: We employed convenience sampling to recruit adults aged 65 years or above undergoing major elective surgery at the University of California, San Francisco. Semistructured interviews regarding the surgical experience were conducted at 1 and 3 months postoperatively. An inductive qualitative approach was used to identify emerging themes. Symptoms revealed by participants during interviews were also captured. RESULTS: Nineteen participants completed a 1-month postoperative interview, and 17 additionally completed a 3-month interview. Three themes emerged: (1) postoperative symptoms significantly impacted valued life activities and psychosocial well-being, (2) participants felt "caught off guard" by the intensity and duration of postoperative symptoms, and (3) participants expressed the need for additional support, resources, and education on symptom management. The most frequently mentioned symptoms were postoperative pain (n=12, 63.1%), gastrointestinal discomfort (n=8, 42.1%), and anxiety/stress (n=8, 42.1%) at 1-month postsurgery compared with pain and depression (both n=6, 35.3%) at 3 months. CONCLUSIONS: Study participants were surprised by the negative impact of postoperative symptoms on their psychosocial well-being and ability to engage in valued life activities. Symptom burden is an important patient-reported outcome that should be assessed postoperatively. Interventions to minimize postoperative symptom burden in older adults could optimize quality of life and participation in meaningful activities during surgical recovery.

Improved Symptom Change Enhances Quality of Dying in Patients With Advanced Cancer: An East Asian Cross-Cultural Study.

BACKGROUND: Symptom burdens tend to increase for patients with cancer and their families over the disease trajectory. There is still a lack of evidence on the associations between symptom changes and the quality of dying and death. In this context, this research investigated how symptom changes influence the quality of dying and death. METHODS: This international prospective cohort study (the East Asian Collaborative Cross-Cultural Study to Elucidate the Dying Process (EASED), 2017-2019) included 22, 11, and 4 palliative care units across Japan, South Korea, and Taiwan. Eligible participants were adults (Japan and Korea, ≥18 years; Taiwan, ≥20 years) with locally advanced or metastatic cancer. Physical and psychological symptoms were assessed by physicians upon admission and within 3 days before death. Death quality was assessed using the Good Death Scale (GDS), developed in Taiwan. Univariate and multivariate regression analyses were used to identify correlations between symptom severity changes and GDS scores. RESULTS: Among 998 patients (542 [54.3%] men and 456 [45.7%] women; mean [SD] age = 70.1 [± 12.5] years), persistent dyspnea was associated with lower GDS scores when compared to stable dyspnea (ß = -0.427, 95% CI = -0.783 to -0.071). Worsened (-1.381, -1.932 to -0.831) and persistent (-1.680, -2.701 to -0.659) delirium were also significantly associated with lower GDS scores. CONCLUSIONS: Better quality of dying and death was associated with improved symptom control, especially for dyspnea and delirium. Integrating an outcome measurement for the quality of dying and death is important in the management of symptoms across the disease trajectory in a goal-concordant manner.

Symptom Clusters in Patients With Advanced Cancer: A Prospective Longitudinal Cohort Study to Examine Their Stability and Prognostic Significance.

This study's purpose was to assess symptom cluster (SC) stability during disease progression and determine their strength of association with survival in patients with advanced cancer . Consecutively eligible patients with advanced cancer not receiving cancer-specific treatment and referred to a Tertiary Palliative Care Clinic were enrolled in a prospective cohort study. At first consultation (D0) and in subsequent consultations at day 15 (D15) and day 30 (D30), patients rated 9 symptoms through the Edmonton Symptom Assessment System scale (0-10) and 10 others using a Likert scale (1-5). Principal components factor analysis with varimax rotation was used to determine SCs at each consultation. Of 318 patients with advanced cancer, 301 met eligibility criteria with a median age of 69 years (range 37-94). Three SCs were identified: neuro-psycho-metabolic (NPM), gastrointestinal, and sleep impairment, with some variations in their constitution over time. Exploratory factor analysis accounted for 40% of variance of observed variables in all SCs. Shorter median survival was observed continuously for NPM cluster (D0 23 vs. 58 days, P < .001; D15 41 vs. 104 days, P=.004; D30 46 vs. 114 days, P = .002), although the presence of 2 or more SCs on D0 and D15 also had prognostic significance (D0: 21 vs. 45 days, P = .005; D30: 50 vs. 96 days, P = .040). In a multivariable model, NPM cluster (D0 hazard ratio estimate: HR 1.64; 95%CI, 1.17-2.31; P = .005; D15 HR: 2.51; 95%CI, 1.25-5.05; P = .009; D30 HR: 3.9; 95%CI, 1.54-9.86; P = .004) and hospitalization (D0 HR: 2.27; 95%CI, 1.47-3.51; P < .001; D15 HR: 2.43; 95%CI, 1.18-5.01; P = .016; D30 HR: 3.41; 95%CI, 1.35-8.62; P = .009) were independently and significantly associated with worse survival. Three clinically relevant SCs were identified, and their constitution had small variations, maintaining a stable set of nuclear symptoms through disease progression. Presence of the NPM cluster and hospitalization maintained their prognostic value over time.

Palliative Care Interventions and End-of-Life Care for Patients with Metastatic Breast Cancer: A Multicentre Analysis.

BACKGROUND: The aim of this study was to describe the implementation of integrated palliative care (PC) and the intensity of care in the last 3 months before death for patients with metastatic breast cancer. MATERIALS AND METHODS: We conducted a multicentric study of all adult patients with metastatic breast cancer who died over a 4-month period. Complete data were collected and checked from clinical records, including PC interventions and criteria regarding EOL care aggressiveness. RESULTS: A total of 340 decedent patients from 12 comprehensive cancer centres in France were included in the study. Sixty-five percent met the PC team with a median time of 39 days between the first intervention and death. In the last month before death, 11.5% received chemotherapy, the frequency of admission to intensive care unit was 2.4%, and 83% experienced acute hospitalization. The place of death was home for 16.7%, hospitalization for 63.3%, PC unit for 20%. Univariate and multivariate analyses showed factors independently associated with a higher frequency of chemotherapy in the last month before death: having a dependent person at home, meeting for the first time with a PC team < 30 days before death, and time between the first metastasis and death below the median. CONCLUSION: PC team integration was frequent and late for patients with metastatic breast cancer. However, PC intervention > 30 days is associated with less chemotherapy in the last month before death. Further studies are needed to better understand how to implement a more effective mode of PC integration for patients with metastatic breast cancer.

A new comprehensive and stratified concept for supportive care in cancer patients.

PURPOSE OF REVIEW: Supportive care in oncology has evolved alongside effective anticancer treatments since the 1960s, beginning with the advent of chemotherapy for acute leukemia. It was initially focused on managing treatment-induced complications, and expanded to address broader aspects of patient well being; the scope of supportive care needs to be periodically re-assessed. RECENT FINDINGS: Early palliative care interventions, and more recently advance care planning emerged as vital components, improving patient outcomes and quality of life. Despite barriers, such as prognostic uncertainty, these approaches have demonstrated significant benefits for patients with advanced disease. Additionally, the management of cancer survivors requires ongoing medical surveillance and psycho-social support. In the last years, integrative medicine has also emerged as a complementary approach to address survivors' holistic needs. SUMMARY: A proposed stratified model of supportive care emphasizes interventions based on patients' prognosis, with interdisciplinary collaboration ensuring comprehensive care across all stages of the cancer journey. This model provides a framework for the development of integrated supportive care units.

Supportive cancer care: is integrative oncology the future?

PURPOSE OF REVIEW: Nearly half of cancer patients use complementary therapies alongside the conventional cancer treatment. This clinical reality is a challenge for the medical team mainly to guarantee patient's safety. The evolution from Supportive Care to Integrative oncology is taking shape. RECENT FINDINGS: Integrative oncology, a new field in cancer care, combines conventional supportive care and validated complementary approaches. The first part of this review is to highlight the process of validation of one of the most popular complementary medicines among European cancer patients: homeopathy. It seems to be a well tolerated and useful complementary approach in integrative cancer care. The second part shows through the example of stage IV lung cancer the transition from conventional supportive care to integrative oncology with a benefit for their quality of life and survival. SUMMARY: The future of supportive cancer care seems to lead towards a move from coexistence of conventional care and complementary approaches to a combination of both in integrative oncology. This would require new skills among caregivers, specific academic training and adapted studies. Further research is needed to highlight the benefits in the specific field of integrative cancer care.

Association of patient-level characteristics with long-term outcomes after Fontan palliation: Rationale, design, and baseline characteristics of the Pediatric Cardiac Care Consortium Fontan cohort study.

BACKGROUND: The Fontan operation is used to palliate single ventricle congenital heart defects (CHD) but poses significant morbidity and mortality risks. We present the design, planned analyses, and rationale for a long-term Fontan cohort study aiming to examine the association of patient characteristics at the time of Fontan with post-Fontan morbidity and mortality. METHODS AND RESULTS: We used the Pediatric Cardiac Care Consortium (PCCC), a US-based, multicenter registry of pediatric cardiac surgeries to identify patients who underwent the Fontan procedure for single ventricle CHD between 1 and 21 years of age. The primary outcomes are in-hospital Fontan failure (death or takedown) and post-discharge mortality through 2022. A total of 1461 (males 62.1%) patients met eligibility criteria and were included in the analytical cohort. The median age at Fontan evaluation was 3.1 years (IQR: 2.4-4.3). While 95 patients experienced in-hospital Fontan failure (78 deaths and 17 Fontan takedown), 1366 (93.5%) survived to discharge with Fontan physiology and formed the long-term analysis cohort. Over a median follow-up of 21.2 years (IQR: 18.4-24.5) 184 post-discharge deaths occurred. Thirty-year post Fontan survival was 75.0% (95% CI: 72.3%-77.8%) for all Fontan types with higher rates for current techniques such as lateral tunnel and extracardiac conduit 77.1% (95% CI: 73.5-80.8). CONCLUSION: The PCCC Fontan study aims to identify predictors for post-Fontan morbidity and mortality, enabling risk- stratification and informing surveillance practices. Additionally, the study may guide therapeutic interventions aiming to optimize hemodynamics and enhance Fontan longevity for individual patients.

Racial/ethnic disparities in inpatient palliative care utilization and hospitalization outcomes among patients with colorectal cancer.

PURPOSE: Research has shown that racial/ethnic disparities exist in outcomes for colorectal cancer (CRC) patients, but there are no studies assessing inpatient palliative care utilization and hospitalization outcomes in this population. We examined racial/ethnic disparities in palliative care utilization and hospitalization outcomes among CRC and early-onset CRC patients. METHODS: Using National Inpatient Sample (NIS) data collected between 2016 and 2018, cross-sectional analyses were performed. Descriptive analyses were done, stratified by race/ethnicity. Multivariable logistic and linear regression models were used to examine racial/ethnic differences in palliative care utilization, inpatient mortality, chemotherapy/radiotherapy use, length of stay and total hospital charges among hospitalized patients with CRC and early-onset CRC. RESULTS: Blacks had higher odds (AOR: 1.09; 95% CI: 1.03-1.16) of receiving palliative care consultation while Hispanics had lower odds (AOR: 0.90; 95% CI: 0.84-0.96) compared to Whites. Blacks had 1.1 times higher odds (95% CI: 1.01-1.18) of inpatient mortality relative to Whites while Hispanics had 16% (AOR: 0.84; 95% CI: 0.76-0.93) lower odds of inpatient mortality. Compared to Whites, Blacks (AOR: 1.99; 95% CI: 1.64-2.41), Hispanics (AOR: 2.49; 95% CI: 1.94-3.19) and colorectal cancer patients in the other category (AOR: 1.72; 95% CI: 1.35-2.18) were more likely to receive inpatient treatment with chemotherapy/radiotherapy. Furthermore, Black patients were 1.1 times (95% CI: 1.06-1.14) more likely to have a length of stay more than 5 days. Blacks (𝛃: $3,096.7; 95% CI: $1,207.0-$4,986.5) Hispanic (𝛃: $10,237.5; 95% CI: $7,558.2-$12,916.8) and other patients (𝛃: $6,332.0; 95% CI: $2,830.9-$9, 833.2) had higher hospital charges relative to their White counterparts. Among patients with early onset CRC, Blacks had higher palliative care use (AOR: 1.29; 95% CI: 1.10-1.51) and inpatient mortality (AOR: 1.38; 95% CI: 1.06-1.79) while Hispanics reported $5,589.7 (95% CI: $683.2-$10,496.2) higher total hospital charges and were more likely to receive inpatient chemotherapy/radiotherapy (AOR: 2.48; 95% CI: 1.70-3.63). CONCLUSION: Further research is needed to explore specific cultural, socioeconomic, and political factors that explain these disparities and identify ways to narrow the gap. Meanwhile, the healthcare sector will need to assess what strategies might be helpful in addressing these disparities in outcomes in the context of other socioeconomic and cultural factors that may be affecting the patients.

Home-Based Pediatric Hospice and Palliative Care Provider Visits: Effects on Healthcare Utilization.

OBJECTIVE: This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare use. STUDY DESIGN: Retrospective review of individuals ages 1 month to 21 years receiving an in-person HBHPC provider (MD/DO or APN) HV through 2 HBHPC programs in the Midwest from January 1, 2013, through December 31, 2018. Descriptive statistics were calculated for healthcare use variables. Paired t test or Wilcoxon signed-rank test compared the changes in healthcare use the year before and year after initial provider HVs. RESULTS: The cohort included 195 individuals (49% female), with diagnoses composed of 49% neurologic, 30% congenital chromosomal, 11% oncologic, 7% cardiac, and 3% other. After implementation of HBHPC services, these patients showed decreases in the median (IQR) number of intensive care unit days (before HV, 12 [IQR, 4-37]; after HV, 0 [IQR, 0-8]; P < .001); inpatient admissions (before HV, 1 [IQR, 1-3]; after HV, 1 [IQR, 0-2]; P = .005); and number of inpatient days (before HV, 5 [IQR, 1-19]; after HV, 2 [IQR, 0-8]; P = .009). There was an increase in clinically relevant phone calls to the HBHPC team (before HV, 1 [IQR, 0-4] vs after HV, 4 [IQR, 1-7]; P < .001) and calls to the HBHPC team before emergency department visits (before HV, 0 [IQR, 0-0] vs after HV, 1 [IQR, 1-2]; P < .001). CONCLUSION: HBHPC provider HVs were associated with fewer inpatient admissions, hospital days, and intensive care unit days, and increased clinically relevant phone calls and phone calls before emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient use and increased use of the HBHPC team.

Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment.

OBJECTIVE: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. STUDY DESIGN: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. RESULTS: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. CONCLUSIONS: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.