Race, Ethnicity, and Goal-Concordance of End-Of-Life Palliative Care in Pediatric Oncology
Oncology
BackgroundRacial and ethnic minority children with cancer disproportionately receive intensive care at the end of life (EOL). It is not known whether these differences are goal-concordant or disparities. The authors sought to explore patterns of pediatric palliative care (PPC) and health care utilization in pediatric oncology patients receiving subspecialty palliative care at the end-of-life (last 6 months) and to examine goal-concordance of location of death in a subset of these patients.MethodsThis was a retrospective cohort study of pediatric oncology patients receiving subspecialty palliative care at a single large tertiary care center who died between January 2013 and March 2017.ResultsA total of 115 patients including 71 White, non-Hispanic patients and 44 non-White patients (including 12 Black patients and 21 Hispanic patients) were included in the analytic cohort. There were no significant differences in oncologic diagnosis, cause of death, or health care utilization in the last 6 months of life. White and non-White patients had similar PPC utilization including time from initial consult to death and median number of PPC encounters. Non-White patients were significantly more likely to die in the hospital compared to White patients (68% vs 46%, P = .03). Analysis of a subcohort with documented preferences (n = 45) revealed that 91% of White patients and 93% of non-White patients died in their preferred location of death.ConclusionsAlthough non-White children with cancer were more likely to die in the hospital, this difference was goal-concordant in our cohort. Subspecialty PPC access may contribute to the achievement of goal-concordant EOL care.
Umaretiya PJ; Li A; McGovern A; Ma C; Wolfe J; Bona K
Cancer
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/cncr.33768" target="_blank" rel="noreferrer noopener">10.1002/cncr.33768</a>
Symptoms and Suffering at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions (S756)
adult; central nervous system; child; chromosome; chronic disease; conference abstract; data analysis; dyspnea; female; human; major clinical study; male; medical technology; pain; prospective study; young adult
Objectives: * Identify parent perceptions of suffering at end of life in children with life-threatening complex chronic conditions. * Describe factors associated with child suffering at end of life. Original Research Background: Research in children with cancer and cardiac disease has highlighted significant suffering at end of life (EOL). Children with other life-threatening complex chronic conditions (LT-CCC) comprise a growing proportion of patients, yet little is known about their EOL suffering. Research Objectives: To examine parent perspectives on EOL suffering among children with LT-CCC and factors associated with high child suffering in the final two days of life.
Marcus K; Kao P C; Ma C; Wolfe J; DeCourcey D
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.318" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.318</a>
The Relationship Between Household Income and Patient-Reported Symptom Distress and Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study
pain; poverty; palliative therapy; major clinical study; advanced cancer; outcome assessment; cancer patient; cohort analysis; distress syndrome; human; article; child; female; male; quality of life; prevalence; secondary analysis; household income; patient-reported outcome; highest income group; lowest income group
Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described. Methods: The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [<$50,000/year] or high income [>=$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL. Results: A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (beta<inf>low-high</inf>=3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (beta=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (beta=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (beta=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (beta=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (beta=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (beta=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (beta=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL. Conclusions: In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL.
Ilowite MF; Al-Sayegh H; Ma C; Dussel V; Rosenberg AR; Feudtner C; Kang TI; Wolfe J; Bona K
Cancer
2018
<a href="http://doi.org/%2010.1002/cncr.31668" target="_blank" rel="noreferrer noopener">10.1002/cncr.31668</a>
Provider Perspectives on Use of Medical Marijuana in Children With Cancer
Cross-Sectional Studies; Cannabis; Child; Logistic Models; Washington; Only Child
BACKGROUND: Although medical marijuana (MM) may have utility in the supportive care of children with serious illness, it remains controversial. We investigated interdisciplinary provider perspectives on legal MM use in children with cancer.METHODS: We sent a 32-item, cross-sectional survey to 654 pediatric oncology providers in Illinois, Massachusetts, and Washington characterizing MM practices, knowledge, attitudes, and barriers. Forty-eight percent responded; 44% (n = 288) were included in analyses. Providers were stratified by status as legally eligible to certify (ETC) for MM. We used Fisher�s exact and Wilcoxon rank tests and univariate and multivariate logistic regression models for group comparisons.RESULTS: The provider median age was 35 years (range 22�70 years); 33% were ETC (83 physicians; 13 Washington state advance practice providers). Thirty percent of providers received ?1 request for MM in the previous month. Notably, only 5% of all providers knew state-specific regulations. ETC providers were more likely to know that MM is against federal laws (P < .0001). Whereas most providers (92%) reported willingness to help children with cancer access MM, in adjusted models, ETC providers were less likely to indicate approval of patient MM use by smoking, oral formulations, as cancer-directed therapy, or to manage symptoms (P < .005 for all). Forty-six percent of all providers cited the absence of standards around formulations, potency, or dosing to be the greatest barrier to recommending MM.CONCLUSIONS: Most pediatric oncology providers are willing to consider MM use in children with cancer and receive frequent inquiries. However, ETC providers endorse less favorable attitudes overall. The absence of standards is an important barrier to recommending MM.
Ananth P; Ma C; Al-Sayegh H; Kroon L; Klein V; Wharton C; Hallez E; Braun Ilana; Michelson K; Rosenberg AR; London W; Wolfe J
Pediatrics
2017
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>