Journal of palliative medicine
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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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Introduction: Identifying the evolving needs of patients with advanced heart failure (AdHF) and triaging those at high risk of death can facilitate timely referrals to palliative care and advance patient-centered individualized care. There are limited models specific for patients with end-stage HF. We aim to identify risk factors associated with up to three-year all-cause mortality (ACM) and describe prognostic models developed or validated in AdHF populations. ⋯ Ten prognostic models developed/validated on AdHF patients displayed acceptable model performance [area under the curve (AUC) range: 0.71-0.81]. Among the ten models, the model for end-stage-liver disease (MELD-XI) and acute decompensated HF with N-terminal pro b-type natriuretic peptide (ADHF/proBNP) model attained the highest discriminatory performance against short-term ACM (AUC: 0.81). Conclusions: To enable timely referrals to palliative care interventions, further research is required to develop or validate prognostic models that consider the evolving landscape of AdHF management.
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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.