Disparities in the Intensity of End-of-Life Care for Children With Cancer

Johnston, Emily E.; Alvarez, Elysia; Saynina, Olga; Sanders, Lee; Bhatia, Smita; Chamberlain, Lisa

doi:10.1542/peds.2017-0671

Cited by 81 publications

(115 citation statements)

References 37 publications

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“…To our knowledge, population‐based studies have been performed on children, adolescents, and young adults in only 4 countries: 1 in Canada, 1 in Korea, 2 in Taiwan, and 3 in the United States . Exploring EOL care in children, adolescents, and young adult in other countries and health care systems using national medical administrative databases may provide additional information.…”

Section: Introductionmentioning

confidence: 99%

“…To our knowledge, population-based studies have been performed on children, adolescents, and young adults in only 4 countries: 1 in Canada, 15 1 in Korea, 16 2 in Taiwan, 17,18 and 3 in the United States. 11,19,20 Exploring EOL care in children, adolescents, and young adult in other countries and health care systems using national medical administrative Cancer July 1, 2019 databases may provide additional information. The French Health System may offer an interesting approach, as its universal health coverage guarantees access to care regardless of cost 21 and may facilitate access to EOL and palliative care.…”

Section: Introductionmentioning

confidence: 99%

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High‐intensity end‐of‐life care among children, adolescents, and young adults with cancer who die in the hospital: A population‐based study from the French national hospital database

Revon‐Rivière

Pauly

Baumstarck

et al. 2019

Cancer

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Background Efforts to improve the quality of end‐of‐life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high‐intensity EOL (HI‐EOL) care. The objective was to assess the rates of HI‐EOL care in this population and to determine patient‐ and hospital‐related predictors of HI‐EOL from the French national hospital database. Methods This was a population‐based, retrospective study of a cohort of patients aged 0 to 25 years at the time of death who died at hospital as a result of cancer in France between 2014 and 2016. The primary outcome was HI‐EOL care, defined as the occurrence of ≥1 chemotherapy session <14 days from death, receiving care in an intensive care unit ≥1 time, >1 emergency room admission, and >1 hospitalization in an acute care unit in the last 30 days of life. Results The study included 1899 individuals from 345 hospitals; 61.4% experienced HI‐EOL care. HI‐EOL was increased with social disadvantage (adjusted odds ratio [AOR], 1.30; 95% confidence interval [CI], 1.03‐1.65; P = .028), hematological malignancies (AOR, 2.09; 95% CI, 1.57‐2.77; P < .001), complex chronic conditions (AOR, 1.60; 95% CI, 1.23‐2.09; P = .001) and care delivered in a specialty center (AOR, 1.70; 95% CI, 1.22‐2.36; P = .001). HI‐EOL was reduced in cases of palliative care (AOR, 0.31; 95% CI, 0.24‐0.41; P < .001). Conclusion A majority of children, adolescents, and young adults experience HI‐EOL care. Several features (eg, social disadvantage, cancer diagnosis, complex chronic conditions, and specialty center care) were associated with HI‐EOL care. These findings should now be discussed with patients, families, and professionals to define the optimal EOL.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

High‐intensity end‐of‐life care among children, adolescents, and young adults with cancer who die in the hospital: A population‐based study from the French national hospital database

Revon‐Rivière

Pauly

Baumstarck

et al. 2019

Cancer

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“…In addition, they are more likely to receive delayed care and to experience unmet care and coordination needs (Nageswaran, Silver, & Stein, ). Furthermore, there may be socioeconomic disparities in the provision of health care for children with complex healthcare needs, which has an immediate impact on their quality of life (Didsbury et al., ; Johnston et al., ).…”

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confidence: 99%

Socioeconomic Status and Health Services Utilization for Children With Complex Chronic Conditions Liable to Receive Nurse‐Led Services: A Cross‐Sectional Study

Ardanaz

Morales‐Asencio

García-Piñero

et al. 2019

J of Nursing Scholarship

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Aim To analyze the use of health services for children with severe chronic diseases, seeking to identify patterns of use according to sociodemographic and clinical conditions, and to identify unmet needs of care coordination that could benefit from nursing case management services. Design Cross‐sectional study. Methods Children treated in ambulatory and hospital care in Granada, Spain, with complex chronic diseases in 2016 were analyzed to determine their use of healthcare resources. Socioeconomic variables were evaluated, along with clinical status and duration of their conditions. Results In total, 265 children were analyzed (mean age 7.3 years, SD 4.63; 56.6% male). The average duration of the disease was 63.26 months (SD 54.09). The most common types of disease were neurological (35.80%), congenital (23.90%), and oncological (18.90%). Multivariate analysis showed that children in need of advanced care (β = 0.71), with a relatively recent diagnosis (β = ‐0.11), with criteria for palliative care 1 (β = ‐0.26), and whose mothers were older (β = 0.36) and had a higher educational level (β = 0.19) made greater use of healthcare resources during the preceding 12 months, whether urgent or scheduled (r2 = 78.0%, p < .001). Conclusions Children with higher needs for advanced care have a heterogeneous use of healthcare resources depending on certain clinical and sociodemographic determinants. This finding highlights the importance of the identification of profiles of children and families for care coordination. The presence of sociodemographic determinants may need individualized approaches to assure a timely health care utilization. Clinical Relevance A significant proportion of the children used multiple health services, being treated at several centers simultaneously, and producing up to 139 total yearly contacts with the health system. Policymakers, healthcare providers, and patients’ families should engage in a redesign of healthcare services for these children, providing comprehensive and coordinated systems of care for this population.

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“…8 However, previous research has also identified differences in treatment utilization across racial-ethnic and socioeconomics groups. [11][12][13] This may be compounded when therapies are novel, intensive, or expensive.…”

Section: Discussionmentioning

confidence: 99%

Disparities in the use of antineoplastic immunotherapy in pediatric malignant adrenal tumors

Shoag

Podda

Kobetz

2020

Pediatric Blood & Cancer

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Dinutuximab is a costly life‐prolonging immunotherapy for high‐risk neuroblastoma. We used a large pediatric inpatient database to analyze the use of antineoplastic immunotherapy in patients with malignant adrenal tumors 1 year after Food and Drug Administration approval of dinutuximab for high‐risk neuroblastoma. On multivariate modeling, children of Black race (odds ratio [OR] 0.62, P = .04; referent non‐Black) and the lowest ZIP code income quartile (OR 0.74, P = .03; referent wealthier 3 quartiles) were significantly less like to receive antineoplastic immunotherapy. These results suggest substantial disparities in the distribution of a vital therapy in children with advanced cancer.

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Disparities in the Intensity of End-of-Life Care for Children With Cancer

Abstract: Nearly two-thirds of children who died of cancer experienced intense end-of-life care. Further research needs to determine if these rates and disparities are consistent with patient and/or family goals.

Cited by 81 publications

References 37 publications

High‐intensity end‐of‐life care among children, adolescents, and young adults with cancer who die in the hospital: A population‐based study from the French national hospital database

High‐intensity end‐of‐life care among children, adolescents, and young adults with cancer who die in the hospital: A population‐based study from the French national hospital database

Socioeconomic Status and Health Services Utilization for Children With Complex Chronic Conditions Liable to Receive Nurse‐Led Services: A Cross‐Sectional Study

Disparities in the use of antineoplastic immunotherapy in pediatric malignant adrenal tumors

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