Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer

Abstract

Background Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life. Methods Oncology patients (ages 0-25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015-06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017-06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared. Results A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both preand post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084). Conclusion A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.

Presuppositions, cost–benefit, collaboration, and competency impacts palliative care referral in paediatric oncology: a qualitative study

“…The research participants' suggestions were for palliative care staff to be part of the oncology team and be present during consultations, family conferences and oncology team meetings. Currently, studies on the effectiveness of embedded paediatric palliative care models are restricted to the United States [103][104][105]. The feasibility and effectiveness of the embedded palliative care model in the paediatric oncology setting internationally would need further evaluation.…”

Palliative Care in Paediatric Oncology: an Update

“…A centre with minimal resources may choose a trigger-based or a consultative model, whereas a centre with better resources may prefer a disease-specific embedded mode [ 155 •]. Embedded paediatric palliative oncology models demonstrated a higher number of children accessing palliative care, longer stay with the palliative care service before death, and fewer days in the hospital during the last three months of their lives [ 156 •, 157 •]. Moreover, the embedded model facilitated better acceptance of paediatric palliative care by the paediatric oncology providers [ 158 •], and improved palliative care education of paediatric oncology residents [ 159 ].…”

Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic

“…13,14 There has been an expansion of innovative outpatient models of PPC that attempt to address the need for robust outpatient palliative care in pediatric oncology. [15][16][17][18][19][20][21] These models have been associated with an improvement in quality of life (QOL) and may help improve access to palliative care for children with cancer. [15][16][17][18][19][20][21] Embedded palliative care, defined as a model of care with shared workspace for palliative specialists and oncologists, has emerged as one way to improve access to palliative care in the outpatient oncology setting.…”

“…[15][16][17][18][19][20][21] These models have been associated with an improvement in quality of life (QOL) and may help improve access to palliative care for children with cancer. [15][16][17][18][19][20][21] Embedded palliative care, defined as a model of care with shared workspace for palliative specialists and oncologists, has emerged as one way to improve access to palliative care in the outpatient oncology setting. 12 Perceived benefits of embedded PPC among multidisciplinary team members include early integration, routinization of care, and accessibility of PPC.…”

“…There has been an expansion of innovative outpatient models of PPC that attempt to address the need for robust outpatient palliative care in pediatric oncology 15–21 . These models have been associated with an improvement in quality of life (QOL) and may help improve access to palliative care for children with cancer 15–21 .…”