Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study

Abstract Background Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age, disease type, socioeconomic status, and dist...

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Main Authors: Kimberley Widger, Sarah Brennenstuhl, Katherine E. Nelson, Hsien Seow, Adam Rapoport, Harold Siden, Christina Vadeboncoeur, Sumit Gupta, Peter Tanuseputro
Format: Article
Language:English
Published: BMC 2023-07-01
Series:BMC Pediatrics
Subjects:
Online Access:https://doi.org/10.1186/s12887-023-04186-9
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author Kimberley Widger
Sarah Brennenstuhl
Katherine E. Nelson
Hsien Seow
Adam Rapoport
Harold Siden
Christina Vadeboncoeur
Sumit Gupta
Peter Tanuseputro
author_facet Kimberley Widger
Sarah Brennenstuhl
Katherine E. Nelson
Hsien Seow
Adam Rapoport
Harold Siden
Christina Vadeboncoeur
Sumit Gupta
Peter Tanuseputro
author_sort Kimberley Widger
collection DOAJ
description Abstract Background Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age, disease type, socioeconomic status, and distance that the child lives from a tertiary hospital. We examined: 1) the prevalence of indicators of high intensity end-of-life care (e.g., hospital stays, intensive care unit [ICU] stays, death in ICU, use of cardiopulmonary resuscitation [CPR], use of mechanical ventilation) and 2) the association between demographic and diagnostic factors and each indicator for children with any life-threatening condition in Canada. Methods We conducted a population-based retrospective cohort study using linked health administrative data to examine care provided in the last 14, 30, and 90 days of life to children who died between 3 months and 19 years of age from January 1, 2008 to December 31, 2014 from any underlying life-threatening medical condition. Logistic regression was used to model the association between demographic and diagnostic variables and each indicator of high intensity end-of-life care except number of hospital days where negative binomial regression was used. Results Across 2435 child decedents, the most common diagnoses included neurology (51.1%), oncology (38.0%), and congenital illness (35.9%), with 50.9% of children having diagnoses in three or more categories. In the last 30 days of life, 42.5% (n = 1035) of the children had an ICU stay and 36.1% (n = 880) died in ICU. Children with cancer had lower odds of an ICU stay (OR = 0.47; 95% CI = 0.36–0.62) and ICU death (OR = 0.37; 95%CI = 0.28–0.50) than children with any other diagnoses. Children with 3 or more diagnoses (vs. 1 diagnosis) had higher odds of > 1 hospital stay in the last 30 days of life (OR = 2.08; 95%CI = 1.29–3.35). Living > 400 km (vs < 50 km) from a tertiary pediatric hospital was associated with higher odds of multiple hospitalizations (OR = 2.09; 95%CI = 1.33–3.33). Conclusion High intensity end of life care is prevalent in children who die from life threatening conditions, particularly those with a non-cancer diagnosis. Further research is needed to understand and identify opportunities to enhance care across disease groups.
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spelling doaj.art-9dedeab0e3d64702acb4472c7ab59e142023-07-30T11:24:55ZengBMCBMC Pediatrics1471-24312023-07-0123111010.1186/s12887-023-04186-9Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational studyKimberley Widger0Sarah Brennenstuhl1Katherine E. Nelson2Hsien Seow3Adam Rapoport4Harold Siden5Christina Vadeboncoeur6Sumit Gupta7Peter Tanuseputro8Lawrence S. Bloomberg Faculty of Nursing, University of TorontoLawrence S. Bloomberg Faculty of Nursing, University of TorontoHospital for Sick ChildrenMcMaster UniversityHospital for Sick ChildrenCanuck Place Children’s HospiceFaculty of Medicine, University of OttawaHospital for Sick ChildrenOttawa Hospital Research InstituteAbstract Background Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age, disease type, socioeconomic status, and distance that the child lives from a tertiary hospital. We examined: 1) the prevalence of indicators of high intensity end-of-life care (e.g., hospital stays, intensive care unit [ICU] stays, death in ICU, use of cardiopulmonary resuscitation [CPR], use of mechanical ventilation) and 2) the association between demographic and diagnostic factors and each indicator for children with any life-threatening condition in Canada. Methods We conducted a population-based retrospective cohort study using linked health administrative data to examine care provided in the last 14, 30, and 90 days of life to children who died between 3 months and 19 years of age from January 1, 2008 to December 31, 2014 from any underlying life-threatening medical condition. Logistic regression was used to model the association between demographic and diagnostic variables and each indicator of high intensity end-of-life care except number of hospital days where negative binomial regression was used. Results Across 2435 child decedents, the most common diagnoses included neurology (51.1%), oncology (38.0%), and congenital illness (35.9%), with 50.9% of children having diagnoses in three or more categories. In the last 30 days of life, 42.5% (n = 1035) of the children had an ICU stay and 36.1% (n = 880) died in ICU. Children with cancer had lower odds of an ICU stay (OR = 0.47; 95% CI = 0.36–0.62) and ICU death (OR = 0.37; 95%CI = 0.28–0.50) than children with any other diagnoses. Children with 3 or more diagnoses (vs. 1 diagnosis) had higher odds of > 1 hospital stay in the last 30 days of life (OR = 2.08; 95%CI = 1.29–3.35). Living > 400 km (vs < 50 km) from a tertiary pediatric hospital was associated with higher odds of multiple hospitalizations (OR = 2.09; 95%CI = 1.33–3.33). Conclusion High intensity end of life care is prevalent in children who die from life threatening conditions, particularly those with a non-cancer diagnosis. Further research is needed to understand and identify opportunities to enhance care across disease groups.https://doi.org/10.1186/s12887-023-04186-9End-of-life careHigh intensity careLife-threatening conditionsPediatrics
spellingShingle Kimberley Widger
Sarah Brennenstuhl
Katherine E. Nelson
Hsien Seow
Adam Rapoport
Harold Siden
Christina Vadeboncoeur
Sumit Gupta
Peter Tanuseputro
Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study
BMC Pediatrics
End-of-life care
High intensity care
Life-threatening conditions
Pediatrics
title Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study
title_full Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study
title_fullStr Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study
title_full_unstemmed Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study
title_short Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study
title_sort intensity of end of life care among children with life threatening conditions a national population based observational study
topic End-of-life care
High intensity care
Life-threatening conditions
Pediatrics
url https://doi.org/10.1186/s12887-023-04186-9
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