Journal of palliative medicine
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Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care, patient/family satisfaction with telepalliative care, and patient/family perspectives. Design: Retrospective electronic medical record chart review (2016-2020) of telepalliative patients at RCH (San Diego, USA), including satisfaction surveys. ⋯ Conclusions and Implications: Pediatric patients receiving telepalliative care varied in demographics, functional status, and goals of care. Telepalliative care can provide good quality of care and patient satisfaction. In a telepalliative setting, parents were able to communicate challenging aspects of care including navigating uncertainty, finding support, and decision making.
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Background: Although bereaved parents suffer greatly, some may experience positive change referred to as post-traumatic growth. Objective: Explore the extent to which parents perceive post-traumatic growth after their child's death in a pediatric intensive care unit (PICU), and associated factors. Design: Longitudinal parent survey conducted 6 and 13 months after a child's death. ⋯ On multivariate modeling, higher education (compared with those not completing high school) and higher 6-month ICG scores (reflecting more complicated grief symptoms) were associated with lower 13-month PTGI-SF scores (p = 0.005 and 0.033, respectively). Conclusion: Parents bereaved by their child's PICU death perceive a moderate degree of post-traumatic growth in the first 13 months after the death however variability is wide. Education level and complicated grief symptoms may influence parents' perception of post-traumatic growth.
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Selective pan fibroblast growth factor receptor (FGFR) inhibitors have been linked to severe onycholysis, the uncomfortable separation of the nail plate from the nail bed. Recommendations to assist with FGFR inhibitor onycholysis vary based on the severity. We hypothesized that the application of topical lidocaine to mimic a digital nerve block would be beneficial in addition to traditional supportive care interventions and subsequently report its immediate and continued efficacy for targeted therapy-induced onycholysis.
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Background: Early, high-quality advance care planning discussions are essential for supporting goal-concordant care among glioblastoma (GBM) patients. Objective: Using mixed methods, we sought to characterize current serious illness (SI) communication practices at our institution. Methods: The electronic medical records of 240 deceased GBM patients cared for at the Abramson Cancer Center in Philadelphia, PA between 2017 and 2019 were systematically reviewed for documented SI conversations about four domains: prognosis, goals, end-of-life planning, and code status. ⋯ Seven themes emerged from clinician interviews: balancing hope and reality, anticipatory guidance, neglect of the "big picture," need for earlier conversations, care coordination, the role of clinical expertise, and communication training. Conclusion: SI conversations were documented early and often in our sample, but their quality was difficult to assess. Contrary to our quantitative findings, interviewees reported that SI conversations were late, infrequent, inadequate, and fragmented across specialties, failing to explore critical issues such as prognosis and functional decline.
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Context: Pharmacogenomic analysis may improve the efficacy or safety of the drugs used in palliative care. Decision support systems may promote clinical integration of this information. Objectives: To determine the feasibility and acceptability of a pharmacist-directed pharmacogenomic decision support system in the care of patients with advanced illness and explore the drug-gene and drug-drug interactions that occur in this population. ⋯ Almost all clinicians rated the system likely to improve the quality of care and all "agreed" or "strongly agreed" to recommend the system to colleagues. Conclusion: This pharmacist-directed pharmacogenomic decision support system was perceived positively and was integrated into practice. Further studies are warranted to its clinical integration and its outcomes.