Interventions to help oncologists care for patients with fatalistic beliefs could mitigate socioeconomic disparities in end-of-life care.

Context. There has been surprisingly little attention to conceptual and methodological issues that influence the measurement of discretionary utilization at the end of life (DIAL), an indicator of quality care. Objective. The objectives of this study were to examine how DIALs have been operationally defined and identify areas where evidence is biased or inadequate to inform practice. Methods. We conducted a scoping review of the English language literature published from 1/1/04 to 6/30/17. Articles were eligible if they reported data on $2 DIALs within 100 days of the deaths of adults aged $18 years. We explored the influence of research design on how researchers measure DIALs and whether they examine demographic correlates of DIALs. Other potential biases and influences were explored. Results. We extracted data from 254 articles published in 79 journals covering research conducted in 29 countries, mostly focused on cancer care (69.1%). More than 100 DIALs have been examined. Relatively crude, simple variables (e.g., intensive care unit admissions [56.9% of studies], chemotherapy [50.8%], palliative care [40.0%]) have been studied more frequently than complex variables (e.g., burdensome transitions; 7.3%). We found considerable variation in the assessment of DIALs, illustrating the role of research design, professional norms and disciplinary habit. Variables are typically chosen with little input from the public (including patients or caregivers) and clinicians. Fewer than half of the studies examined age (44.6%), gender (37.3%), race (26.5%), or socioeconomic (18.5%) correlates of DIALs. Conclusion. Unwarranted variation in DIAL assessments raises difficult questions concerning how DIALs are defined, by whom, and why. We recommend several strategies for improving DIAL assessments. Improved metrics could be used by the public, patients, caregivers, clinicians, researchers, hospitals, health systems, payers, governments, and others to evaluate and improve end-of-life care.

Little is known about the psychosocial factors that might impact the functioning ability of heterosexual men living with HIV. We examined positive and negative coping, social support, and HIV stigma as predictors of physical and global functioning in a cross-sectional sample of 317 HIV-infected adult heterosexual male patients recruited from clinical and social service agencies in New York City. Study participants were primarily minority and low income. Sixty-four percent were African-American, 55% were single, and 90% were 40 years of age or older. The majority had long-term HIV (LTHIV), with an average duration of 15 years since diagnosis. After controlling for participant characteristics, structural equation modelling analyses revealed that positive coping and social support had a significant positive direct effect on global functioning, while stigma had a significant negative direct effect on global functioning. The physical functioning model revealed that negative coping and HIV stigma had significant negative direct effects, whereas social support had a significant positive indirect effect. Age and duration of HIV diagnosis were not associated with physical and global functioning. In conclusion, we found that heterosexual men living with LTHIV who have ineffective coping, less social support, and greater stigma have reduced functioning ability. Study findings have implications for developing interventions aimed at increasing and retaining functioning ability with the end goal of improving successful aging in this population.

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National organizations call for providing trauma-informed care (TIC) to those who have experienced adverse childhood experiences (ACEs) and to the population as a whole. All providers and staff are at risk for experiencing stress and burnout when they care for patients with multiple complex needs and insufficient resources. All are at risk but not all develop burnout. This study shares findings from a pilot project to implement training on ACEs and toxic stress in a busy urban pediatric primary care practice. Using a mixed-methods approach, we assessed pre and post self-reported knowledge and attitudes via surveys ( n = 52), baseline in-depth interviews ( n = 16), focus groups (three groups, n = 36), and follow-up interviews ( n = 13). After training, staff reported a marginally significant increase in rating the office as doing a good job meeting the needs of families around childhood trauma (72% vs. 46%, p = 0.057). Key themes from baseline in-depth interviews and focus groups identified the following: (1) pervasiveness of trauma and adversity among families in the practice, (2) empathy for families with significant social needs, (3) feelings of frustration to alleviate stressors identified during visits, (4) need for social support and coping mechanisms to alleviate workplace stress, and (5) receptiveness to enhance knowledge and understanding. Key themes from follow-up interviews and focus groups highlighted the impact of compassion fatigue and strategies to promote self-care. We discuss these findings and challenges in relation to providing TIC and professional development.