Measuring decision aid effectiveness for end-of-life care: A systematic review.

Objective: To systematically review research analyzing the effectiveness of decision aids for end-of-life care, including how researchers specifically measure decision aid success. Methods: We conducted a systematic review synthesizing quantitative, qualitative, and mixed-methods study results using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Four databases were searched through February 18, 2023. Inclusion criteria required articles to evaluate end-of-life care decision aids. The review is registered under PROSPERO (#CRD42023408449). Results: A total of 715 articles were initially identified, with 43 meeting the inclusion criteria. Outcome measures identified included decisional conflict, less aggressive care desired, knowledge improvements, communication improvements, tool satisfaction, patient anxiety and well-being, and less aggressive care action completed. The majority of studies reported positive outcomes especially when the decision aid development included International Patient Decision Aid Standards. Conclusion: Research examining end of life care decision aid use consistently reports positive outcomes. Innovation: This review presents data that can guide the next generation of decision aids for end-of-life care, namely using the International Patient Decision Aid Standards in developing tools and showing which tools are effective for helping to prevent the unnecessary suffering that can result when patients' dying preferences are unknown.

The effectiveness of community-based palliative care programme components: a systematic review.

BACKGROUND: There is evidence that community-based palliative care programmes can improve patient outcomes and caregiver experiences cost-effectively. However, little is known about which specific components within these programmes contribute to improving the outcomes. AIM: To systematically review research that evaluates the effectiveness of community-based palliative care components. DESIGN: A systematic mixed studies review synthesising quantitative, qualitative and mixed-methods study findings using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PROSPERO: ID # CRD42022302305. DATA SOURCES: Four databases were searched in August 2021 (CINAHL, Web of Science, ProQuest Federated and PubMed including MEDLINE) and a close review of included article references. Inclusion criteria required articles to evaluate a single, specific component of a community-based palliative care programme either within an individual programme or across several programmes. RESULTS: Overall, a total of 1,674 articles were identified, with 57 meeting the inclusion criteria. Of the included studies, 21 were qualitative, 25 were quantitative and 11 had mixed methods. Outcome measures consistently examined included patient/caregiver satisfaction, hospital utilisation and home deaths. The components of standardised sessions (interdisciplinary meetings about patients), volunteer engagement and early intervention contributed to the success of community-based palliative care programmes. CONCLUSIONS: Certain components of community-based palliative care programmes are effective. Such components should be implemented and tested more in low- and middle-income countries and key and vulnerable populations such as lower-income and marginalised racial or ethnic groups. In addition, more research is needed on the cost-effectiveness of individual programme components.

Experiences of caregivers and hospice leaders with telehealth for palliative care: a mixed methods study.

BACKGROUND: Telehealth was expanded worldwide during the COVID-19 pandemic to deliver essential care remotely to patients, including those receiving palliative care. Bipartisan groups of politicians in the United States call for continuing the expanded Medicare coverage of telehealth services beyond the pandemic period. The aim was to understand telehealth's benefits and risks to hospice and palliative care patients and their families. METHODS: We conducted a cross-sectional survey of 595 caregivers of seriously ill patients and interviewed 25 hospice leaders across the United States. We used multiple linear regression to analyze the survey data and qualitative methods to determine themes from the interview data. RESULTS: Our survey showed that a good internet connection, better access to video, and the patient being younger than 65 years old were associated with greater satisfaction with telehealth. The hospice leader interviews highlighted that telehealth can enhance or detract from quality care, depending on the function; confusion over telehealth policies and concern for abuse exists; and telehealth during the pandemic has spurred on technology-enabled innovation and improvements, especially for resource-constrained hospice and palliative care organizations. CONCLUSIONS: Telehealth used during the pandemic showed that it may work for certain hospice and palliative care services. As telehealth coverage expands, it is important to address its risks and shortcomings upfront. When designed and implemented with the patient and equity in mind, telehealth has the potential to improve access to hospice and palliative care for all.

Measuring effectiveness in community-based palliative care programs: A systematic review.

Community-based palliative care (CBPC) serves seriously ill individuals by integrating care for symptom and stress relief with local health care systems. This review provides the first systematic review of the literature to date on the effectiveness of CBPC programs and includes their measures of success, challenges faced, and characteristics of the populations served. A systematic review on CBPC program effectiveness was conducted across four electronic databases for academic articles published through August 2021. PRISMA reporting guidelines were followed throughout this review, study quality was assessed using the Mixed Methods Appraisal Tool, and results were summarized in a narrative synthesis. The 61 included articles were separated into quantitative and qualitative studies, with eight having mixed methods and belonging to both groups. Overall, the quantitative articles indicate that CBPC programs increase the likelihood that seriously ill patients in their community have their place of death as home, fewer hospitalizations, fewer emergency department visits, decreased hospital length of stays, improved quality of life, and lower health care costs. There was, however, also evidence showing certain programs were unsuccessful in improving the stated outcomes. The qualitative studies reported positive findings and highlighted areas for future program improvement, like training staff and volunteers in communication and other skills. There was a lack of quantitative and qualitative studies investigating CBPC programs in low-income and lower-middle-income countries. In addition, there is a paucity of research examining CBPC program impact on vulnerable and key populations across the globe. Although findings generally support the notion that CBPC programs are a cost-effective way to improve end-of-life quality, further research is needed examining the characteristics of the more successful programs. Findings also suggest the need for collaboration between researchers, health systems, and governments to design and implement effective CBPC programs and to share best practices across communities worldwide.

US hospices' approach to racial/ethnic minority inclusion: a qualitative study.

OBJECTIVE: To examine hospices' approaches to improving the current racial/ethnic hospice utilisation disparity. METHODS: During June and July 2020, we conducted in-depth, semistructured interviews with 22 hospice leaders from across the USA. The interviews focused on inclusive strategy approaches. We analysed the data using qualitative methods. RESULTS: Multiple themes emerged about racial/ethnic minority inclusion strategies: (1) hospices tailor strategies to the local communities they serve; (2) improvement involves addressing social determinants of health that extend beyond end-of-life care; (3) costs of strategies are not a primary concern and the benefits are worth the costs; and (4) hospices want to do more to improve their efforts. CONCLUSIONS: Hospices want to improve racial/ethnic minority inclusion and can take specific action steps to educate community members about hospice and provide an environment within hospice care that is welcoming to all. Hospice-targeted programmes and policies that facilitate language translation, diversity in staffing, enhanced community outreach, and leadership and staff collaboration regarding inclusion may help hospices achieve success in their efforts toward racial/ethnic minority inclusion.

The value of health awareness days, weeks and months: A systematic review.

OBJECTIVE: The aim of this systematic review was to analyze the value of awareness days, weeks, and months as found in peer-reviewed research and highlight any related trends. METHODS: A systematic review was conducted across four electronic databases for articles published between 1970 and July 2020. The researchers reviewed articles which included awareness days, weeks, or months in the title or abstract and extracted articles which used quantitative analysis to assess the impact of such campaigns. RESULTS: The 73 included articles were separated into categories based on outcome measure(s) with 12 articles included in more than one category. Of the 31 articles which examined online activity outcomes, the vast majority reported the awareness day, week, or month in question positively correlated with increased activity. Of the 14 articles focused on knowledge outcomes, those which focused on specific day, week, or month sub-interventions with targeted populations had relatively greater success. The 29 studies that examined the impact of awareness days, weeks, and months on health outcomes reported mixed results. Another twelve studies provided treatment insights based on convenience sample research conducted during awareness days, weeks, and months. The majority of articles across all outcome categories did not examine costs. CONCLUSION: Although online activity seemed to generally increase during the awareness days, weeks, and months studied, the relationship between this increase and improved health behaviors and outcomes remains unclear. In addition, there is a paucity of research pertaining to the cost and cost effectiveness of such campaigns. Future research in this area needs to focus more on health outcome impacts and include an examination of cost effectiveness when possible.

Hospice Response to COVID-19: Promoting Sustainable Inclusion Strategies for Racial and Ethnic Minorities.

There is a disproportionate burden of illness and death among racial/ethnic minorities related to COVID-19. The importance of reaching groups suffering the most with resources such as advance directive guidance, telehealth, and culturally sensitive education materials is vital to providing quality, inclusive care. A crisis presents an opportunity to unite and problem-solve to help avoid the dire consequences facing inaction. In this way, inclusive responses by hospices, social workers, other community partners during the COVID-19 pandemic can help reach and alleviate the pain of those groups most afflicted. We offer hospice inclusion strategies that align with general pandemic response trends that may lead to greater hospice inclusion beyond this public health emergency.

"We Are Here to Assist All Individuals Who Need Hospice Services": Hospices' Perspectives on Improving Access and Inclusion for Racial/Ethnic Minorities.

Background: Racial/ethnic minority populations in the United States are less likely to utilize hospice services nearing their end of life, potentially diminishing their quality of care while also increasing medical costs. Objective: Explore the minority hospice utilization gap from the hospice perspective by examining perceived barriers and facilitators as well as practices and policies. Method: Qualitative surveys were conducted with 41 hospices across the United States. Qualitative data analysis included performing a limited content analysis, including the identification of themes and representative quotations. Results: Commonly reported barriers to hospice care for racial/ethnic minorities included culture/beliefs, mistrust of the medical system, and language barriers. A major theme pertaining to successful minority hospice enrollment was an inclusive culture that provided language services, staff cultural training, and a diverse staff. Another major theme was the importance of community outreach activities that extended beyond the medical community and forming relationships with churches, racial/ethnic minority community leaders, and Native American reservations. Conclusion: The importance of incorporating a culture of inclusivity by forming committees, providing language services, and offering culturally competent care emerged in this qualitative study. Building strong external relationships with community groups such as churches is a strategy used to increase racial/ethnic minority utilization of hospice.

Closing the Gap in Hospice Utilization for the Minority Medicare Population.

Background: Medicare spends about 20% more on the last year of life for Black and Hispanic people than White people. With lower hospice utilization rates, racial/ethnic minorities receive fewer hospice-related benefits such as lesser symptoms, lower costs, and improved quality of life. For-profit hospices have higher dropout rates than nonprofit hospices, yet target racial/ethnic minority communities more through community outreach. This analysis examined the relationship between hospice utilization and for-profit hospice status and conducted an economic analysis of racial/ethnic minority utilization. Method: Cross-sectional analysis of 2014 Centers for Medicare & Medicaid Services (CMS), U.S. Census, and Hospice Analytics data. Measures included Medicare racial/ethnic minority hospice utilization, for-profit hospice status, estimated cost savings, and several demographic and socioeconomic variables. Results: The prevalence of for-profit hospices was associated with significantly increased hospice utilization among racial/ethnic minorities. With savings of about $2,105 per Medicare hospice enrollee, closing the gap between the White and racial/ethnic minority populations would result in nearly $270 million in annual cost savings. Discussion: Significant disparities in hospice use related to hospice for-profit status exist among the racial/ethnic minority Medicare population. CMS and state policymakers should consider lower racial/ethnic minority hospice utilization and foster better community outreach at all hospices to decrease patient costs and improve quality of life.

Re-Examining Genetic Screening and Oral Contraceptives: A Patient-Centered Review.

The World Health Organization classifies combined hormonal contraception as an unacceptable health risk in the presence of a known thrombogenic mutation but advises against routine thrombophilia screening before initiating combined oral contraceptives (COCs) on the grounds of high screening costs and low prevalence. From the perspective of patient-centered care, we examine cost, prevalence, and other published arguments for and against thrombophilia screening before initiating COCs. Our patient-centered review draws on relevant empirical evidence concerning the advantages and disadvantages of thrombophilia screening, while placing the discussion in the broader context of evolving attitudes toward genetic testing and a shifting policy landscape that provides many women direct access to COCs and/or thrombophilia screening. Given variation in prior probabilities of thrombophilia, expected exposure to other risk factors for venous thromboembolism, attitudes towards risk, expected reactions to a positive test result, ability to pay, and concerns about genetic discrimination, we conclude that the current one-size-fits-most approach is not consistent with patient-centered care. Instead, we advocate for greater patient and provider education concerning the implications of thrombophilia screening. Moreover, we recommend offering patients optional thrombophilia screening before initiating COCs.

Economic Evaluations of Thrombophilia Screening Prior to Prescribing Combined Oral Contraceptives: A Systematic and Critical Review.

BACKGROUND: Combined oral contraceptives (COCs) increase the risk of venous thromboembolism (VTE), particularly among women with inherited clotting disorders. The World Health Organization classifies combined hormonal contraception as an "unacceptable health risk" for women with thrombogenic mutations but advises against universal thrombophilia screening before prescribing COCs given the low prevalence of thrombophilia and high screening costs. OBJECTIVE: Through the lens of lifetime costs and benefits, this paper systematically and critically reviews all published economic evaluations of thrombophilia screening prior to prescribing COCs. METHODS: We searched relevant databases for economic evaluations of thrombophilia screening before prescribing COCs. After extracting the key study characteristics and economic variables, we evaluated each article using the Quality of Health Economic Studies (QHES) and the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) instruments. RESULTS: Seven economic evaluations of thrombophilia screening before prescribing COCs met our inclusion criteria. Only the two economic evaluations focusing exclusively on selective screening exceeded the 75-point threshold for high-quality economic studies based on the QHES instrument, whereas only one of these exceeded the 85% CHEERS threshold. Only three of the seven economic evaluations performed sensitivity analysis on key parameters. Most studies underestimated the benefits of thrombophilia screening by comparing one-time costs of genetic screening against benefits per person-year, thus implicitly assuming a 1-year duration of COC use, neglecting the long-term implications of VTE and/or neglecting the lifetime benefits of awareness of inherited thrombophilia. CONCLUSION: Our review highlights the lack of methodologically rigorous economic evaluations of universal thrombophilia screening before prescribing COCs.