Journal of pain and symptom management
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J Pain Symptom Manage · Nov 2024
Development and Piloting of a Bereaved Care Partner Survey to Inform Quality Improvement in ALS Supportive Care.
Bereaved care partner surveys typically focus on the experience with care in the final days of life. We sought to develop and pilot a novel bereaved care partner survey to understand experiences with ALS supportive care provided throughout the illness and identify opportunities for quality improvement. ⋯ We developed and piloted a bereaved care partner survey to understand and improve the quality of ALS supportive care, which was found to be feasible and acceptable. Next steps include testing it at additional centers in order to generate learnings that can advance ALS supportive care in ways that are meaningful to patients and care partners.
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J Pain Symptom Manage · Nov 2024
Race and Socio-Economic Status Impact Withdrawal of Treatment in Young Traumatic Brain Injury.
Withdrawal of life-sustaining therapies (WDLST) in young individuals with traumatic brain injury (TBI) is an overwhelming situation often made more stressful by socioeconomic factors that shape health outcomes. Identifying these factors is crucial to developing equitable and goal-concordant care for patients and families. ⋯ The decision for WDLST in young patients with severe TBI may be influenced by cultural and socioeconomic factors in addition to clinical considerations.
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J Pain Symptom Manage · Nov 2024
Start of the COVID-19 pandemic and palliative care unit utilization: a retrospective cohort study.
People with noncancer diagnoses have poorer access to palliative care units (PCUs) or hospices compared to those with cancer diagnoses. The COVID-19 pandemic disrupted how specialist palliative care services were delivered and utilized. ⋯ Despite historically poor PCU/hospice access, the COVID-19 pandemic created circumstances that may have enabled unprecedented utilization in individuals with noncancer diagnoses in our cohort.
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J Pain Symptom Manage · Nov 2024
Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions.
Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). ⋯ In this study, children with CCCs met 69% of quality measures and received high-intensity healthcare in the last two years of life.