Family Caregivers of Children With Medical Complexity: Changes in Health-Related Quality of Life and Experiences of Care Coordination

Harris, Kelly W.; Ray, Kristin N.; Yu, Justin

doi:10.1016/j.acap.2023.11.023

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2024

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Cited by 2 publications

References 30 publications

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Introduction and Definitions

Delgado-Corcoran,

Bierer,

Cramer Finnerty

et al. 2024

SpringerBriefs in Public Health

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Introduction and Definitions

Delgado-Corcoran,

Bierer,

Cramer Finnerty

et al. 2024

SpringerBriefs in Public Health

View full text Add to dashboard Cite

Liveborn children with trisomy 18: A retrospective review

Armour,

MacPherson,

Mack

et al. 2024

Paediatrics &Amp; Child Health

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Background Historically, children born alive with trisomy 18 were considered to have a lethal genetic condition such that no medical interventions were provided. While survival is now recognized to be possible, these children’s lives include aspects of technological dependency, medical complexity, and neurodevelopmental disabilities. Objectives The primary aim of this study was to describe the outcomes of a contemporary Canadian population-based cohort of children born alive with trisomy 18. Methods A retrospective study was conducted to review the records of children born alive with trisomy 18 from January 2012 to December 2023 in Central/Northern Alberta. Demographic and clinical information were abstracted, including features reported in the literature associated with morbidity and mortality. Outcomes were described, including technological dependency, time spent in the hospital, and survival. Results In total, 37 liveborn infants with complete trisomy 18 were identified. While most died in hospital following medical-surgical interventions and/or comfort-care palliation, nine were discharged home. All of these children had been born at term with a birthweight ≥1750 g. While they relied on medical technologies such as home oxygen and feeding tubes at the time of discharge, most were able to spend a considerable amount of time at home rather than being re-hospitalized. At the time of this review, four remain alive varying in age from 6 to 9 years. Conclusions Trisomy 18 is not a homogeneous clinical condition. Some children may have their lives extended to spend their lives at home with their families.

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Family Caregivers of Children With Medical Complexity: Changes in Health-Related Quality of Life and Experiences of Care Coordination

Cited by 2 publications

References 30 publications

Introduction and Definitions

Introduction and Definitions

Liveborn children with trisomy 18: A retrospective review

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