Journal of palliative medicine
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Multicenter Study
Missing Voices: Lessons Learned from Nonparticipating Caregivers in Palliative Care Research.
Background: Our previous study to understand end-of-life care of adolescents and young adults (AYAs) had a suboptimal survey response rate by bereaved caregivers. Objective: To identify sociodemographic factors associated with caregiver nonparticipation. Design/Setting/Subjects:Post hoc analysis of a retrospective multicenter cohort study of caregivers of deceased AYAs from 2013 to 2016. ⋯ Caregivers of nonwhite AYAs were significantly less likely to participate (OR 0.35; 95% CI 0.12-0.87; p = 0.01). Conclusions: Caregivers of patients living in poverty are less likely to be reached by traditional recruitment efforts. Caregivers of racial/ethnic minority patients are less likely to participate overall.
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Multicenter Study
Epidemiology of Respiration with Mandibular Movement in Advanced Cancer Patients: A Multicenter Prospective Cohort Study.
Background: Respiration with mandibular movement (RMM) is one of the important clinical signs of impending death. However, there is very limited data on its natural course. Objective and Methods: This study was conducted in 23 inpatient palliative care units in Japan. ⋯ Mean oxygen saturation and percentage of patients with SpO2 ≥90% at RMM onset were found to be significantly higher in patients with longer durations from RMM onset to death (p < 0.001). Conclusion: RMM occurred in a majority (80%) of dying patients within 12 hours. A minority of the patients survived >24 hours.
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Multicenter Study
Assessment of Changes in Symptoms Is Feasible and Prognostic in the Last Weeks of Life: An International Multicenter Cohort Study.
Background: Symptoms are not typically part of established various prognostic factors and scoring systems but are among the most frequently assessed issues in patient care. Objectives: To evaluate that, changes in symptoms can provide additional useful prognostic information. Design: A secondary analysis of an international cohort study in Japan, Korea, and Taiwan. ⋯ Interestingly, Improved symptoms were associated with similar survival compared with Stable groups, with no statistical differences. Conclusions: Worsened symptoms at one week after admission were useful predictors of survival for patients with advanced cancer in PCUs during the final weeks of life. Longitudinal assessments are needed to reflect passage of time as well as impact of treatments.
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Multicenter Study
Does Urinary Catheterization Affect the Quality of Death in Patients with Advanced Cancer? A Secondary Analysis of Multicenter Prospective Cohort Study.
Background: Patients with life-limiting illnesses frequently experience urinary difficulties, and urinary catheterization is one of the interventions for managing them. However, evidence supporting the effects of urinary catheters on the quality of death (QoD) is lacking in this population. Objectives: To investigate whether urinary catheterization affects QoD in patients with advanced cancer in palliative care units. ⋯ In subgroup analyses stratified by sex, age, and length of palliative care unit stay, urinary catheterization was associated with higher total GDS scores in patients younger than 65 years of age and those who died after a palliative care unit stay of 21 days or fewer. Conclusions: This study suggested that urinary catheterization during a palliative care unit stay may have a positive impact on overall QoD in patients with advanced cancer. This study was registered in the UMIN Clinical Trials Registry (UMIN000025457).
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Multicenter Study
Death and Dying in Hospitalized Pediatric Patients: A Prospective Multicenter, Multinational Study.
Background: For hospitalized children admitted outside of a critical care unit, the location, mode of death, "do-not-resuscitate" order (DNR) use, and involvement of palliative care teams have not been described across high-income countries. Objective: To describe location of death, patient and terminal care plan characteristics of pediatric inpatient deaths inside and outside the pediatric intensive care unit (PICU). Design: Secondary analysis of inpatient deaths in the Evaluating Processes of Care and Outcomes of Children in Hospital (EPOCH) randomized controlled trial. ⋯ Hospital palliative care consultation was more common in older children and independently associated with a lower adjusted odds (95% confidence interval) of dying in PICU [0.59 (0.52-0.68)]. Conclusion: Most pediatric inpatient deaths occur in PICU where patients were less likely to have a DNR or palliative care consult. Palliative care consultation could be better integrated into end-of-life care for younger children and those dying in PICU.