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Clinical Course for Patients With Trisomy 13 and 18 Pursuing Life-Prolonging Therapies Versus Comfort-Directed Care

Michelle C Perry Milligan1,2, Laura E Jackson3,4, Scott H Maurer1,5

  • 1Department of Pediatrics, University of Pittsburgh School of Medicine, 6619UPMC Children's Hospital of Pittsburgh, PA, USA.

The American Journal of Hospice & Palliative Care
|December 30, 2020
PubMed

Insights

Parental goals of care for infants with Trisomy 13 and 18 did not impact lifespan but significantly influenced treatment intensity, including hospital and ICU days. This finding can guide clinical decision-making for these complex genetic conditions.

Area of Science:

  • Genetics and Developmental Biology
  • Pediatric Medicine
  • Palliative Care

Background:

  • Care for infants with Trisomy 13 and 18 is advancing with increased medical and surgical options.
  • Understanding the link between parental goals of care and clinical outcomes is crucial for informed decision-making.

Purpose of the Study:

  • To describe and compare parental goals of care (GOC) with the clinical course of infants diagnosed with Trisomy 13 and 18.
  • To analyze the impact of GOC on treatment intensity and survival in these infants.

Main Methods:

  • Retrospective analysis of 28 infants diagnosed with Trisomy 13 or 18 between 2013-2019 at a single center.
  • Electronic health records were reviewed for diagnoses, hospitalization duration, interventions, GOC, and survival data.

Main Results:

  • Among 26 infants with complete Trisomy 13 or 18, 8 had life-prolonging goals and 18 had comfort care goals.
  • Life-prolonging GOC was associated with increased hospital days (70 vs. 12), ICU days (66 vs. 9), intubation rates, and in-ICU deaths.
  • No significant difference in length of life was observed between groups (p = 0.36).

Conclusions:

  • Parental GOC significantly influences treatment intensity but not the length of life for infants with complete Trisomy 13 or 18.
  • These findings can aid clinicians and families in navigating complex care decisions for these conditions.
Abstract

Keywords:
goals of caretrisomy 13trisomy 18

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