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Mixed method study of quality of life for children with trisomy 18 and 13 after cardiac surgery

Published online by Cambridge University Press:  22 January 2020

Meaghann S. Weaver*
Affiliation:
Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA Department of Pediatrics, University of Nebraska Medical Center, Omaha, NE, USA
Nicole Birge
Affiliation:
Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA Department of Pediatrics, University of Nebraska Medical Center, Omaha, NE, USA
Howard Hsu
Affiliation:
Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA Department of Pediatrics, University of Nebraska Medical Center, Omaha, NE, USA
Christine Woell
Affiliation:
Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA Department of Pediatrics, University of Nebraska Medical Center, Omaha, NE, USA
Jacob E. Robinson
Affiliation:
Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA
Christopher Wichman
Affiliation:
Department of Pediatrics, University of Nebraska Medical Center, Omaha, NE, USA
James Hammel
Affiliation:
Department of Pediatrics, Children’s Hospital and Medical Center, Omaha, NE, USA Department of Pediatrics, University of Nebraska Medical Center, Omaha, NE, USA
*
Author for correspondence: M. S. Weaver, Division of Pediatric Palliative Care, Children’s Hospital and Medical Center, Omaha, NE68114, USA. Tel: +1 402 955 5432; E-mail: meweaver@childrensomaha.org

Abstract

Background and Objectives:

Cardiac surgical interventions for children with trisomy 18 and trisomy 13 remain controversial, despite growing evidence that definitive cardiac repair prolongs survival. Understanding quality of life for survivors and their families therefore becomes crucial. Study objective was to generate a descriptive summary of parental perspectives on quality of life, family impact, functional status, and hopes for children with trisomy 18 and trisomy 13 who have undergone heart surgery.

Methods:

A concurrent mixed method approach utilising PedsQL™ 4.0 Generic Core Parent Report for Toddlers or the PedsQL™ Infant Scale, PedsQL™ 2.0 Family Impact Module, Functional Status Scale, quality of life visual analogue scale, and narrative responses for 10 children whose families travelled out of state to access cardiac surgery denied to them in their home state due to genetic diagnoses.

Results:

Parents rated their child’s quality of life as 80/100, and their own quality of life as 78/100 using validated scales. Functional status was rated 11 by parents and 11.6 by providers (correlation 0.89). On quality of life visual analogue scale, all parents rated their child’s quality of life as “high” with mean response 92.7/100. Parental hopes were informed by realistic perspective on prognosis while striving to ensure their children had access to reaching their full potential. Qualitative analysis revealed a profound sense of the child’s relationality and valued life meaning.

Conclusion:

Understanding parental motivations and perceptions on the child’s quality of life has potential to inform care teams in considering cardiac interventions for children with trisomy 18 and trisomy 13.

Type
Original Article
Copyright
© Cambridge University Press 2020

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