Journal of pain and symptom management
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J Pain Symptom Manage · Oct 2024
The Home-Based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of Psychometric Properties.
Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S. Ensuring equitable, high-quality home-based PPHC for all children requires the evaluation of families' care experiences and assessment of whether these experiences are aligned with their needs and priorities. ⋯ The EXPERIENCE Measure is a tool with evidence for reliable and valid scores to evaluate family-reported home-based PPHC experiences at the time care is being received. Future work will evaluate the usability (i.e., acceptability, feasibility, and clinical actionability) of EXPERIENCE, including the sensitivity of the instrument to change over time and its impact on real-time clinical actions.
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J Pain Symptom Manage · Oct 2024
Comparative StudyComparing the Need and Development of Pediatric Palliative Care in Mexico: A Geographical Analysis.
The Global Atlas of Palliative Care (GAPC) ranked Mexico's palliative care services at a preliminary integration stage into mainstream healthcare services. However, this data does not reflect pediatric palliative care (PPC) development. ⋯ PPC services are distributed unevenly across the country, leading to inequitable access to care and an inability to meet the needs of patients and families. There is a disparity between the level of development of adult palliative care services and the underdevelopment of PPC in Mexico. This information can help stakeholders guide the development of PPC where it is needed most.
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J Pain Symptom Manage · Oct 2024
Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life.
Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. ⋯ Palliative care services are engaged with most children at end of life and is accessible to marginalized patient groups. Spanish-speaking patients have different code status orders and modes of death at end of life. Further studies are needed to elucidate explanatory factors for differences revealed and multicenter studies are needed to characterize more widespread experiences.
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J Pain Symptom Manage · Oct 2024
Opioid Access among Advanced Cancer Patients in Low- and Middle-Income Countries in Asia.
Most cancer-associated pain is experienced in low- and middle-income countries (LMICs) due to inequitable access to opioids. ⋯ Study findings emphasize the importance of palliative care training-even a minimal amount-in supporting access to opioids for advanced cancer patients. This study also highlights pragmatic site-level policies, such as extended morphine prescription durations, enabling access.
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J Pain Symptom Manage · Oct 2024
Frequency of Comfort Care and Palliative Care Consultation after ST-elevation Myocardial Infarction.
ST-elevation myocardial infarction (STEMI) remains a leading cause of death despite advances in revascularization and post-STEMI care. Especially for patients with a poor prognosis, there is increasing emphasis on comfort-focused care. ⋯ Transition to comfort-focused care before death after STEMI is common, particularly in those with cardiogenic shock and/or treated with MCS, highlighting the critical status of such patients. Although increasingly employed in recent years, palliative care consults remain rare and are often employed late in the hospitalization.