BACKGROUND: We previously developed stakeholder-informed quality measures to assess end-of-life care quality for children with cancer. We sought to implement a subset of these quality measures in the multi-center pediatric palliative care (PPC) database.

PROCEDURES: We utilized the Shared Data and Research database to evaluate the proportion of childhood cancer decedents from 2017-2021 who, in the last 30 days of life, avoided chemotherapy, mechanical ventilation, intensive care unit admissions, and > 1 hospital admission; were enrolled in hospice services, and reported ≤ 2 highly distressing symptoms. We then explored patient factors associated with the attainment of quality benchmarks.

RESULTS: Across 79 decedents, 82% met ≥ 4 quality benchmarks. Most (76%) reported > 2 highly distressing symptoms; 17% were enrolled in hospice. In univariable analyses, patients with an annual household income ≤$50,000 had lower odds of hospice enrollment and avoidance of mechanical ventilation or intensive care unit admissions near end of life (odds ratio [OR] 0.10 [95% confidence interval (C.I.) 0.01, 0.86], p = 0.04; OR 0.13 [0.02, 0.64], p = 0.01; OR 0.36 [0.13, 0.98], p = 0.04, respectively). In multivariable analyses, patients with an income ≤$50,000 remained less likely to enroll in hospice, after adjusting for cancer type (OR 0.10 [0.01, 0.87]; p = 0.04).

CONCLUSIONS: Childhood cancer decedents who received PPC met a large proportion of quality measures near the end of their life. Yet, many reported highly distressing symptoms. Moreover, patients with lower household incomes appeared less likely to enroll in hospice and more likely to receive intensive hospital services near the end of life. This study identifies opportunities for palliative oncology quality improvement.

<p><strong>CONTEXT: </strong>Childhood cancer care is delivered by interprofessional healthcare teams however little is known about how parents perceive overall team-delivered care (TDC).</p>

<p><strong>OBJECTIVES: </strong>We sought to describe parent perceptions of TDC and associated factors, including care rendered by individual clinicians, teamwork, information consistency, and patient and parent characteristics.</p>

<p><strong>METHODS: </strong>Cross-sectional surveys were distributed to parents of 104 children with recurrent/refractory cancer enrolled in a multi-site symptom management trial. The primary outcome, TDC, was parent report of care quality delivered by the child's care team during the preceding 3 months. Likert scaled items (excellent/very good/good/fair/poor) queried care quality delivered by individual clinicians, perceived teamwork and other factors. Factors associated with parent perceptions of "excellent" TDC were identified using Fisher's Exact test.</p>

<p><strong>RESULTS: </strong>Eighty-six parents (83%) responded. Over the preceding 3 months, 63% (n=54) of parents reported excellent TDC. However, only 47% (n=40) described their care team's teamwork as excellent. Approximately one-quarter (24%) described care rendered by their child's oncologist as less-than-excellent. Among parents who reported psychosocial clinician involvement (71%, n=60), only 43% described this care as excellent. Individually, excellent care from each clinician type (oncologist, psychosocial clinician, primary nurse) was associated with excellent TDC (all p≤0.001, no correction for multiple comparisons).</p>

<p><strong>CONCLUSION: </strong>Among parents of children with advanced cancer, more than one-third report less-than-excellent TDC. Additionally, less than half report excellent teamwork, and ratings of care rendered by individual clinicians are highly variable. Findings suggest interventions are needed to enhance interprofessional teamwork in the care of children with advanced cancer.</p>

<p><strong>BACKGROUND AND OBJECTIVES: </strong>Although many adults experience resource-intensive and costly health care in the last year of life, less is known about these health care experiences in children with life-threatening complex chronic conditions (LT-CCCs). We assessed hospital resource use in children by type and number of LT-CCCs.</p>

<p><strong>METHODS: </strong>A retrospective analysis of 1252 children with LT-CCCs, ages 1 to 18 years, who died in 2012 within 40 US children's hospitals of the Pediatric Health Information System database. LT-CCCs were identified with International Classification of Diseases, 9th Revision, Clinical Modification codes. Using generalized linear models, we assessed hospital admissions, days, costs, and interventions (mechanical ventilation and surgeries) in the last year of life by type and number of LT-CCCs.</p>

<p><strong>RESULTS: </strong>In the last year of life, children with LT-CCCs experienced a median of 2 admissions (interquartile range [IQR] 1-5), 27 hospital days (IQR 7-84), and $142 562 (IQR $45 270-$410 087) in hospital costs. During the terminal admission, 76% (n = 946) were mechanically ventilated; 36% (n = 453) underwent surgery. Hospital use was greatest (P &lt; .001) among children with hematologic/immunologic conditions (99 hospital days [IQR 51-146]; cost = $504 145 [IQR $250 147-$879 331]) and children with ≥3 LT-CCCs (75 hospital days [IQR 28-132]; cost = $341 222 [IQR $146 698-$686 585]).</p>

<p><strong>CONCLUSIONS: </strong>Hospital use for children with LT-CCCs in the last year of life varies significantly across the type and number of conditions. Children with hematologic/immunologic or multiple conditions have the greatest hospital use. This information may be useful for clinicians striving to improve care for children with LT-CCCs nearing the end of life.</p>