Journal of palliative medicine
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Importance: A recent systematic review and meta-analysis found that palliative care was not associated with improvement in quality of life (QOL) in terminal noncancer illness. Among potential reasons for a null effect, it is unclear if patient-reported outcome measures (PROMs) measuring QOL were derived or validated among populations with advanced life-limiting illness (ALLI). Objective: To systematically review the derivation and validation of QOL PROMs from a recent meta-analysis of randomized controlled trials (RCT) of palliative care interventions in people with terminal noncancer illness. ⋯ QOL PROMs such as Quality of Life at End of Life, EuroQoL-5 Dimension 5-level, and 36-item Short Form Survey demonstrated validity in more than one terminal noncancer illness. Conclusions: Most QOL PROMs that measured the effect of palliative care on QOL in RCTs were neither derived nor validated in an ALLI population. These findings raise questions about the inferences that palliative care does not improve QOL among people with terminal noncancer illness.
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Importance: A recent systematic review and meta-analysis found that palliative care was not associated with improvement in quality of life (QOL) in terminal noncancer illness. Among potential reasons for a null effect, it is unclear if patient-reported outcome measures (PROMs) measuring QOL were derived or validated among populations with advanced life-limiting illness (ALLI). Objective: To systematically review the derivation and validation of QOL PROMs from a recent meta-analysis of randomized controlled trials (RCT) of palliative care interventions in people with terminal noncancer illness. ⋯ QOL PROMs such as Quality of Life at End of Life, EuroQoL-5 Dimension 5-level, and 36-item Short Form Survey demonstrated validity in more than one terminal noncancer illness. Conclusions: Most QOL PROMs that measured the effect of palliative care on QOL in RCTs were neither derived nor validated in an ALLI population. These findings raise questions about the inferences that palliative care does not improve QOL among people with terminal noncancer illness.
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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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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.