Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions

Veerle Piette; Tinne Smets; Luc Deliens; Gerlant van Berlaer; Kim Beernaert; Joachim Cohen

doi:10.1016/j.jpeds.2022.10.037

Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions

Veerle Piette, Tinne Smets, Luc Deliens, Gerlant van Berlaer, Kim Beernaert, Joachim Cohen

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Abstract

OBJECTIVE: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions.

STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurologic conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed ANOVA for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care.

RESULTS: Between 2010 and 2017, 139 children with neurologic conditions died in Belgium. For potentially appropriate care, in the last 30 days, 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days, 45% had blood drawn and 27% were admitted to intensive care unit.

CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurologic conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and blood drawing.

Original language	English
Article number	E8
Pages (from-to)	128-136
Number of pages <span style="color:red"p> <font size="1.5"> ✽ </span> </font>	9
Journal	Journal of Pediatrics
Volume	255
Early online date	10 Nov 2022
DOIs	https://doi.org/10.1016/j.jpeds.2022.10.037
Publication status	Published - Apr 2023

Bibliographical note

Funding Information:
All phases of this study were supported by the Research Foundation Flanders (FWO postdoctoral status to K.B.). The study sponsors had no role in the study design, or the collection, analysis, and interpretation of data; the writing of the report; or the decision to submit the manuscript for publication. K.B. is a Postdoctoral Fellow of the Research Foundation Flanders (FWO). The authors declare no conflicts of interest.

Publisher Copyright:
© 2022 Elsevier Inc.

Copyright:
Copyright 2023 Elsevier B.V., All rights reserved.

Keywords

cohort decedent study
not in title: Indicators
quality of care

Access to Document

10.1016/j.jpeds.2022.10.037

2022_PietteV_JPediatrAccepted author manuscript, 629 KBLicence: CC BY-NC-ND

Cite this

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title = "Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions",

abstract = "OBJECTIVE: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions.STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurologic conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed ANOVA for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care.RESULTS: Between 2010 and 2017, 139 children with neurologic conditions died in Belgium. For potentially appropriate care, in the last 30 days, 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days, 45% had blood drawn and 27% were admitted to intensive care unit.CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurologic conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and blood drawing.",

keywords = "cohort decedent study, not in title: Indicators, quality of care",

author = "Veerle Piette and Tinne Smets and Luc Deliens and {van Berlaer}, Gerlant and Kim Beernaert and Joachim Cohen",

note = "Funding Information: All phases of this study were supported by the Research Foundation Flanders (FWO postdoctoral status to K.B.). The study sponsors had no role in the study design, or the collection, analysis, and interpretation of data; the writing of the report; or the decision to submit the manuscript for publication. K.B. is a Postdoctoral Fellow of the Research Foundation Flanders (FWO). The authors declare no conflicts of interest. Publisher Copyright: {\textcopyright} 2022 Elsevier Inc. Copyright: Copyright 2023 Elsevier B.V., All rights reserved.",

year = "2023",

month = apr,

doi = "10.1016/j.jpeds.2022.10.037",

language = "English",

volume = "255",

pages = "128--136",

journal = "Journal of Pediatrics",

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AU - Piette, Veerle

AU - Smets, Tinne

AU - Deliens, Luc

AU - van Berlaer, Gerlant

AU - Beernaert, Kim

AU - Cohen, Joachim

N1 - Funding Information: All phases of this study were supported by the Research Foundation Flanders (FWO postdoctoral status to K.B.). The study sponsors had no role in the study design, or the collection, analysis, and interpretation of data; the writing of the report; or the decision to submit the manuscript for publication. K.B. is a Postdoctoral Fellow of the Research Foundation Flanders (FWO). The authors declare no conflicts of interest. Publisher Copyright: © 2022 Elsevier Inc. Copyright: Copyright 2023 Elsevier B.V., All rights reserved.

PY - 2023/4

Y1 - 2023/4

N2 - OBJECTIVE: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions.STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurologic conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed ANOVA for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care.RESULTS: Between 2010 and 2017, 139 children with neurologic conditions died in Belgium. For potentially appropriate care, in the last 30 days, 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days, 45% had blood drawn and 27% were admitted to intensive care unit.CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurologic conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and blood drawing.

AB - OBJECTIVE: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions.STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurologic conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed ANOVA for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care.RESULTS: Between 2010 and 2017, 139 children with neurologic conditions died in Belgium. For potentially appropriate care, in the last 30 days, 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days, 45% had blood drawn and 27% were admitted to intensive care unit.CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurologic conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and blood drawing.

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KW - quality of care

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DO - 10.1016/j.jpeds.2022.10.037

M3 - Article

C2 - 36372096

VL - 255

SP - 128

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JO - Journal of Pediatrics

JF - Journal of Pediatrics

SN - 0022-3476

M1 - E8

ER -

Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions

Abstract

Bibliographical note

Keywords

Access to Document

Other files and links

Fingerprint

SRP69: SRP-Onderzoekszwaartepunt: Addressing the challenges around serious illness, palliative care and the end of life: public health, health services and clinical innovations

Cite this

Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions

Abstract

Bibliographical note

Keywords

Access to Document

Other files and links

Fingerprint

Projects

SRP69: SRP-Onderzoekszwaartepunt: Addressing the challenges around serious illness, palliative care and the end of life: public health, health services and clinical innovations

Cite this