Journal of pain and symptom management
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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
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
Case ReportsChallenges in Pediatric Home-Based Hospice and Palliative Care: A Case Series.
Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and palliative care, there remain barriers to its optimal development, implementation, and dissemination as well as best clinical practice knowledge gaps. This case series presents specific examples of ubiquitous challenges in pediatric home-based hospice and palliative care in hopes of guiding future research, education, advocacy, and program development efforts.
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J Pain Symptom Manage · Oct 2024
Outpatient Training During Hospice and Palliative Medicine Fellowship: A National Survey.
Outpatient palliative care (PC) has strong evidence demonstrating impact across serious illnesses, resulting in growing demand for skilled outpatient PC clinicians. However, there is limited literature examining the existing state and quality of outpatient PC education during postgraduate training. ⋯ Our survey of US HPM fellowships identified multiple gaps between outpatient and inpatient PC education and training during fellowship and raises concern about the adequacy of outpatient PC training. To prepare the HPM workforce to meet the diverse needs of seriously ill populations and ensure adequate access, outpatient PC training requires reform.
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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.