Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas

Ebelhar, Jonathan; Allen, Kristen; DeGroote, Nicholas P.; Wasilewski‐Masker, Karen; Brock, Katharine E.

doi:10.1002/pbc.28363

Cited by 16 publications

(30 citation statements)

References 37 publications

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“…This additional time permits a shift of focus from treatment towards comfort‐focused care, reduces family and provider distress, facilitates memory‐making activities, and, if desired, allows time for discharge home with hospice or family visitation before the patient dies. Lastly, only 27.2% of patients received hospice care, far below the 71.7% of patients with sarcomas at this institution who received hospice 34 . Most hospice recipients had received PC; even among all patients who received PC, less than half received hospice care, consistent with prior data showing patients with hematologic malignancies are less likely to receive hospice or die at home 7,8,12 .…”

Section: Discussionsupporting

confidence: 71%

“…Patients in our cohort experienced a median of five palliative opportunities throughout their disease course, compared to a mean of nine opportunities in children with sarcomas at the same institution 34 . There was no association between the number of palliative opportunities and demographic factors or primary diagnosis.…”

Section: Discussionmentioning

confidence: 77%

“…Prior to data collection, a list of “palliative opportunities” was established through an expert panel including subspecialty PC, pediatric oncology, and pediatric palliative oncology physicians 34 . Palliative opportunities were defined as events during a patient's cancer course with an increased risk of morbidity or distress, as viewed by the patient or family, in which PC could be initiated or intensified.…”

Section: Methodsmentioning

confidence: 99%

“…Many opportunities for PC consultation occur throughout a child's cancer course. A “palliative opportunity” has been defined as an event during a patient's disease course at which time subspecialty PC, or care provided by clinicians with subspecialty training or board certification in PC, could be provided to diminish suffering and improve the patient's or family's overall experience 34 . The primary aim of this study was to examine the number and timing of palliative opportunities between diagnosis and death in children with hematologic malignancies who did not survive.…”

Section: Introductionmentioning

confidence: 99%

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Evaluating palliative opportunities in pediatric patients with leukemia and lymphoma

et al. 2021

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Background Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care (PC) consultation and often undergo intensive end‐of‐life (EOL) care. We examined “palliative opportunities,” or events when the integration of PC would have the greatest impact, present during a patient's hematologic malignancy course and relevant associations. Methods A single‐center retrospective review was conducted on patients aged 0–18 years with a hematologic malignancy who died between 1/1/12 and 11/30/17. Demographic, disease, and treatment data were collected. A priori, nine palliative opportunity categories were defined. Descriptive statistics were performed. Palliative opportunities were evaluated over temporal quartiles from diagnosis to death. Timing and rationale of pediatric PC consultation were evaluated. Results Patients (n = 92) had a median of 5.0 (interquartile range [IQR] 6.0) palliative opportunities, incurring 522 total opportunities, increasing toward the EOL. Number and type of opportunities did not differ by demographics. PC consultation was most common in patients with lymphoid leukemia (50.9%, 28/55) and myeloid leukemia (48.5%, 16/33) versus lymphoma (0%, 0/4, p = 0.14). Forty‐four of ninety‐two patients (47.8%) received PC consultation a median of 1.8 months (IQR 4.1) prior to death. Receipt of PC was associated with transplant status (p = 0.0018) and a higher number of prior palliative opportunities (p = 0.0005); 70.3% (367/522) of palliative opportunities occurred without PC. Conclusion Patients with hematologic malignancies experience many opportunities warranting PC support. Identifying opportunities for ideal timing of PC involvement may benefit patients with hematologic cancers and their caregivers.

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Section: Discussionsupporting

confidence: 71%

Section: Discussionmentioning

confidence: 77%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Evaluating palliative opportunities in pediatric patients with leukemia and lymphoma

et al. 2021

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“…Utilizing high-risk events as a trigger for referral may represent an innovative tool for research and clinical purposes [45].…”

Section: Discussionmentioning

confidence: 99%

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

Brock

Allen

Falk

et al. 2020

Support Care Cancer

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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.

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Differences in palliative opportunities across diagnosis groups in children with cancer

Ebelhar

DeGroote

Massie

et al. 2022

Pediatric Blood & Cancer

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Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas

Cited by 16 publications

References 37 publications

Evaluating palliative opportunities in pediatric patients with leukemia and lymphoma

Evaluating palliative opportunities in pediatric patients with leukemia and lymphoma

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

Differences in palliative opportunities across diagnosis groups in children with cancer

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