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A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease

Published online by Cambridge University Press:  10 January 2018

Hayley S. Hancock*
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Ward Family Heart Center, Children’s Mercy Kansas City, Missouri, United States of America
Ken Pituch
Affiliation:
Department of Pediatrics, Palliative Care, University of Michigan, Ann Arbor, Michigan, United States of America
Karen Uzark
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, University of Michigan, Ann Arbor, Michigan, United States of America
Priya Bhat
Affiliation:
Department of Pediatrics, School of Medicine, Divisions of Pediatric Cardiology and Critical Care Medicine, Washington University, St. Louis, Missouri, United States of America
Carly Fifer
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, University of Michigan, Ann Arbor, Michigan, United States of America
Maria Silveira
Affiliation:
Department of Internal Medicine, Division of Geriatric Medicine and Palliative Care, University of Michigan, Ann Arbor, Michigan, United States of America
Sunkyung Yu
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, University of Michigan, Ann Arbor, Michigan, United States of America
Suzanne Welch
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, University of Michigan, Ann Arbor, Michigan, United States of America
Janet Donohue
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, University of Michigan, Ann Arbor, Michigan, United States of America
Ray Lowery
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, University of Michigan, Ann Arbor, Michigan, United States of America
Ranjit Aiyagari
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, University of Michigan, Ann Arbor, Michigan, United States of America
*
Correspondence to: H. S. Hancock, MD, Ward Family Heart Center, Children’s Mercy Kansas City, 2401 Gillham Road, Kansas City, MO 64108-4619, United States of America. Tel: +816 302 8277; Fax: +816 302 9987; E-mail: hshancock@cmh.edu

Abstract

Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care – structured evaluation, psychosocial/spiritual, and communication support before surgery – or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76±8.46 versus 7.0±5.0 and 46.34±12.59 versus 29.8±6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (−7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.

Type
Original Articles
Copyright
© Cambridge University Press 2018 

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