Journal of pain and symptom management
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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.
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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
Financial Hardship: A Qualitative Study Exploring Perspectives of Seriously Ill Patients and their Family.
Seriously ill patients, such as those who experience critical illness, and their families experience a variety of poor outcomes, including financial hardship. However, little is known about the ways in which these seriously ill patients and their families experience financial hardship. ⋯ Our findings suggest that the acute and time sensitive nature of treatment decisions in critical care settings provides a unique context for experiences of financial hardship. Additional research is needed to better understand these experiences and design context-sensitive interventions to mitigate financial hardship and associated poor patient- and family-centered outcomes.
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J Pain Symptom Manage · Nov 2024
Serious health-related suffering impairs treatments and survival in older patients with cancer.
More than half of new cancer cases occurred in older adults. Older patients with cancer are particularly at risk of physical, psycho-existential or socio-familial suffering as defined by the concept of Serious Health-related Suffering (SHS). ⋯ Physical suffering has direct pejorative effect on survival. All dimensions indirectly decrease survival due to poorer cancer treatability. Our findings support concomitant management of physical and psycho-existential suffering.
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J Pain Symptom Manage · Nov 2024
'Recommendations for deprescribing of medication in the last phase of life: an international Delphi study'.
Medications may become inappropriate for patients in the last phase of life and may even compromise their quality of life. ⋯ A high level of consensus was reached on recommendations on potential deprescription of several medications for patients with a life expectancy of six months or less.