Journal of pain and symptom management
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J Pain Symptom Manage · Sep 2021
ReviewAdvance Care Planning, Palliative Care, and End-of-life Care Interventions for Racial and Ethnic Underrepresented Groups: A Systematic Review.
Persons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care. ⋯ The effectiveness of advance care planning, end-of-life, and palliative care interventions in improving outcomes for underrepresented racial and ethnic populations remains uncertain. Randomized controlled trials and educational interventions indicate that interventions targeting underrepresented groups can have significant and positive effects on advance directives and/or advance care planning-related outcomes. More high-quality intervention studies that address racial and ethnic health disparities in palliative care are needed, particularly those that address systemic racism and other complex multilevel factors that influence disparities in health.
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>Goal-concordant care is a priority outcome for palliative care research, yet the field lacks consensus on optimal methods for measurement. We sought to 1) categorize methods used to measure goal-concordant care, and 2) discuss strengths and limitations of each method using empirical examples from palliative care research. We categorized measurement methods for goal-concordant care. ⋯ Population-level indicators allow pragmatic research to include large populations; its primary limitation is the assumption that preferences held by a majority of persons should correspond to patterns of actual treatment in similar populations. Methods used to measure goal-concordant care have distinct strengths and limitations, and methods should be selected based on research question and study design. Existing methods could be improved, yet a future gold standard is unlikely to suit all research designs.
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J Pain Symptom Manage · Sep 2021
Multicenter StudyA Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children with Cancer.
Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply. ⋯ Childhood cancer stakeholders define high quality EOLC primarily through person-centered measures, characterizing half of existing adult-focused measures as limited in relevance to children. Future research should focus on developing techniques for person-centered quality measurement to capture attributes of greatest importance to children with cancer and their families.