Anxiety, depression, and end-of-life care utilization in adults with metastatic cancer.

OBJECTIVE: End-of-life care for patients with cancer is often overly burdensome, and palliative and hospice care are underutilized. The objective of this study was to evaluate whether the mental health diagnoses of anxiety and depression were associated with variation in end-of-life care in metastatic cancer. METHODS: This study used electronic health data from 1,333 adults with metastatic cancer who received care at two academic health centers in Louisiana, USA, and died between 1/1/2011-12/31/2017. The study used descriptive statistics to characterize the sample and logistic regression to examine whether anxiety and depression diagnoses in the six months before death were associated with utilization outcomes (chemotherapy, intensive care unit [ICU] visits, emergency department visits, mechanical ventilation, inpatient hospitalization, palliative care encounters, and hospice utilization), while controlling for key demographic and health covariates. RESULTS: Patients (56.1% male; 65.6% White, 31.1% Black) commonly experienced depression (23.9%) and anxiety (27.2%) disorders within six months of death. Anxiety was associated with an increased likelihood of chemotherapy (odds ratio [OR] = 1.42, p = 0.016), ICU visits (OR = 1.40, p = 0.013), and inpatient hospitalizations (OR = 1.85, p < 0.001) in the 30 days before death. Anxiety (OR = 1.95, p < 0.001) and depression (OR = 1.34, p = 0.038) were associated with a greater likelihood of a palliative encounter. CONCLUSIONS: Patients with metastatic cancer who had an anxiety disorder were more likely to have burdensome end-of-life care, including chemotherapy, ICU visits, and inpatient hospitalizations in the 30 days before death. Depression and anxiety both increased the odds of palliative encounters. These results emphasize the importance of mental health considerations in end-of-life care.

Racial Disparities in End-of-Life Care Between Black and White Adults With Metastatic Cancer.

CONTEXT: The comfort of patients with cancer near the end of life (EOL) is often undermined by unnecessary and burdensome treatments. There is a need for more research examining racial disparities in EOL care, especially in regions with a history of racial discrimination. OBJECTIVES: To examine whether black adults received more burdensome EOL care than white adults in a population-based data set of cancer decedents in Louisiana, a state with a history of slavery and long-standing racial disparities. METHODS: This was a retrospective analysis of EOL care from the Research Action for Health Network (REACHnet), a regional Patient-Centered Outcomes Research Institute-funded database. The sample consisted of 875 white and 415 black patients with metastatic cancer who died in Louisiana from 2011 to 2017. We used logistic regression to examine whether race was associated with five indicators of burdensome care in the last 30 days of life: chemotherapy use, inpatient hospitalization, intensive care unit admission, emergency department (ED) admission, and mechanical ventilation. RESULTS: Most patients (85.0%) received at least one indicator of burdensome care: hospitalization (76.5%), intensive care unit admission (44.1%), chemotherapy (29.1%), mechanical ventilation (23.0%), and ED admission (18.3%). Odds ratios (ORs) indicated that black individuals were more likely than white individuals to be hospitalized (OR = 1.66; 95% CI = 1.21-2.28; P = 0.002) or admitted to the ED (OR = 1.57; 95% CI = 1.16-2.13; P = 0.004) during their last month of life. CONCLUSION: Findings have implications for informing health care decision making near the EOL for patients, families, and clinicians, especially in regions with a history of racial discrimination and disparities.

Dissemination and continuous improvement of a CTSA-based software platform, SPARCRequest©, using an open source governance model.

SPARCRequest© (Services, Pricing, & Application for Research Centers) is a web-based research management system that provides a modular and adaptable "electronic storefront" for research-related services. Developed by the South Carolina Clinical & Translational Research Institute at the Medical University of South Carolina, it was released as open source (OS) code in 2014. The adoption of SPARCRequest© accelerated in 2016, when, to ensure responsiveness to the needs of partners, its governance also became open. This governance model enables OS partners to suggest and prioritize features for new releases. As a result, the software code has become more modularized and can be easily customized to meet the diverse needs of adopting hubs. This article describes innovative aspects of the OS governance model, including a multi-institutional committee structure to set strategic vision, make operational decisions, and develop technical solutions; a virtual roadmap that ensures transparency and aligns adopters with release-based goals; and a business process model that provides a robust voting mechanism for prioritizing new features while also enabling fast-paced bug fixes. OS software evolves best in open governance environments. OS governance has made SPARCRequest© more responsive to user needs, attracted more adopters, and increased the proportion of code contributed by adopters.

Exploring Patient, Caregiver, and Healthcare Provider Perceptions of Caring for Patients With Heart Failure: What Are the Implications?

BACKGROUND: Heart failure (HF) is an incurable and frequently progressive disease. Symptoms of HF may impair the ability of patients to perform daily living activities. As HF progresses, patients typically increase their reliance on caregivers. The purpose of this study was to determine what roles patients and caregivers perceive and desire for themselves in managing HF and to compare and contrast these roles with those perceived by healthcare providers. METHODS: A purposive sample (60 patients, 22 caregivers, and 11 healthcare providers) was enrolled in the study. Patients and caregivers individually participated in semistructured interviews, and healthcare providers participated in 1 of 2 focus groups. RESULTS: Four key themes evolved from interviews with patients and caregivers-education on disease specifics, guidance to enhance quality of life, learning to cope with HF, and future outlook and care decisions-that may guide the development of caregiver interventions in HF. Healthcare providers in both structured focus groups regardless of rank order selected knowledge is powerful, adherence to treatment plan, and compliance with medication as the top 3 issues likely to have the greatest impact, and they identified education on the disease (knowledge is powerful) as the easiest strategy to implement for patients and caregivers in the management of HF. CONCLUSION: Interventions among caregivers of patients with HF are needed and should focus on education in family structures, family functioning, and skills training in family assessment and engagement.