Journal of palliative medicine
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Background: Acute leukemia is a cancer of the blood and bone marrow with a high symptom burden and a high mortality rate in adults. The quality of end-of-life care among this patient population is deemed to be low based on health care administrative data, though the patient experience is not included in this evaluation. Objective: This scoping review aims at exploring and mapping the current research literature on the experience of care among adults with incurable acute leukemia near the end of life. ⋯ The medicalization of end-of-life care, including intensive care unit admissions and invasive medical procedures, were viewed as the norm by some providers, though perceived as distressing for both patients and their loved ones. Conclusions: Adults with acute leukemia face significant challenges in accessing high-quality end-of-life care brought about by the complex nature of their disease and its treatment. A systematic exploration of the end-of-life experience among these patients through direct patient engagement or by way of patient reporting proxies is needed.
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Background: As a person nears the end of their life, culture and ethnicity increasingly drive preferences and priorities for care. Understanding these preferences and priorities is fundamental to health care professionals' goals to respect decision making and support the individual throughout this phase of life. Across Africa, several countries are in the initial stages of implementing palliative care services in their burgeoning health care systems. ⋯ Reasons for this were language, education, cultural norms and expectations, lack of time, and benevolence. Conclusions: The implementation of palliative care often relies on communication of patient desires and goals. Consideration is needed to determine how a provider can appropriately know these factors in a paternalistic relationship.
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Objective: The electronic health record (EHR) has emerged as a fundamental tool but has focused on physical care delivery. Psychosocial screenings and interventions are central to palliative care that supports whole person care models; however, EHR innovations to capture psychosocial care have not been optimized. Material and Methods: A narrative review was conducted from 2009 to March 2023. ⋯ Recommendations highlight the importance of shared priorities and collaboration with key stakeholders to fully execute on the clinical utility of EHRs. Future work will continue to evaluate data collection tools and systematic approaches to capture psychological needs and social environment and its impact on health outcomes and quality of life. Conclusion: This review will expand on opportunities for automated reporting of psychosocial care in the context of seriously ill.
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Clinical Trial
Support for Use of Consumer Assessment of Healthcare Providers and Systems Communication Items Among Seriously Ill Patients.
Background: High-quality doctor-patient communication is essential for patients with serious illnesses. The reliability and validity of Consumer Assessment of Healthcare Providers and Systems (CAHPS®) communication items among these patients are unknown. Methods: Five CAHPS communication items, a 4-item Advance Care Planning (ACP) engagement scale, 5-item confidence in others' knowledge of ACP medical wishes scale, and a question about confidence in filling out ACP-related medical forms were administered to 1100 patients (20% response rate) with serious illness receiving primary care at three University of California Health Systems. ⋯ Communication was positively correlated with confidence in other's knowledge of ACP medical wishes (r = 0.32, p < 0.0001), ACP engagement (r = 0.14, p < 0.0001), and confidence in filling out ACP-related medical forms (r = 0.09, p = 0.0022). Conclusions: These findings support the use of CAHPS survey items to assess communication among patients with serious illnesses in primary care. Clinical Trial Registration: https://clinicaltrials.gov/ct2/show/NCT04012749.
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Background: Within palliative care research, best practice guidelines to conduct scientifically rigorous clinical trials for neurodegenerative diseases are underexplored. This patient population experiences unique challenges, including fluctuations in cognitive capacity, care partner (CP) and proxy involvement, and high adverse events (AEs), that necessitate special consideration when designing clinical trials. Objective: The objective of this study was to describe and identify clinical trial design features that have been documented in studies involving a neuropalliative intervention for persons with neurodegenerative diseases, highlighting features that have been adapted for this unique patient population. ⋯ Conclusions: To date, neuropalliative care clinical trials have had varied study designs and the majority of research has focused on dementia. Research guideline development for high-quality neuropalliative care clinical trials is greatly needed across the range of neurodegenerative diseases. To increase the scientific rigor of clinical trials and neuropalliative care, we recommend a standardized capacity assessment for consent, defining conditions for the CP, proxy, and AEs, systematizing appropriate comparators, and outlining preemptive recruitment and retention strategies to address the broader unpredictable challenges of palliative care research.