Meaghann S Weaver1, Abby R Rosenberg2,3, Julia Tager4, Christopher S Wichman5, Lori Wiener4. 1. 1 Divisions of Palliative Care and Oncology, Department of Pediatrics, Children's Hospital and Medical Center , Omaha, Nebraska. 2. 2 Center for Clinical and Translational Research and Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute , Seattle, Washington. 3. 3 Divisions of Hematology/Oncology and Bioethics, Department of Pediatrics, University of Washington School of Medicine , Seattle, Washington. 4. 4 National Institutes of Health, National Cancer Institute , Center for Cancer Research, Bethesda, Maryland. 5. 5 Division of Biostatistics, University of Nebraska Medical Center , Omaha, Nebraska.
Abstract
BACKGROUND: Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. OBJECTIVE: To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. METHODS: Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup. SUBJECTS: A total of 142 surveys were completed with representation from 18 countries and 39 states. RESULTS: Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals ("trigger" diagnoses) were reported by 44% respondents. The presence of such "triggers" increased the likelihood of palliative principle introduction 3.41 times (p < 0.003). Six percent of respondents perceived pediatric oncology patients and their families "always" were introduced to palliative care concepts and 17% reported children and families "always" received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level. DISCUSSION: Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.
BACKGROUND: Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. OBJECTIVE: To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. METHODS: Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup. SUBJECTS: A total of 142 surveys were completed with representation from 18 countries and 39 states. RESULTS: Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals ("trigger" diagnoses) were reported by 44% respondents. The presence of such "triggers" increased the likelihood of palliative principle introduction 3.41 times (p < 0.003). Six percent of respondents perceived pediatric oncology patients and their families "always" were introduced to palliative care concepts and 17% reported children and families "always" received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level. DISCUSSION: Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.
Entities:
Keywords:
pediatric cancer; pediatric oncology; pediatric palliative care
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