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Cardiol Young. 2018 Apr;28(4):561-570. doi: 10.1017/S1047951117002761. Epub 2018 Jan 10.

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

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1Department of Pediatrics,Division of Pediatric Cardiology,Ward Family Heart Center,Children's Mercy Kansas City,Missouri,United States of America.
2Department of Pediatrics,Palliative Care,University of Michigan,Ann Arbor,Michigan,United States of America.
3Department of Pediatrics,Division of Pediatric Cardiology,University of Michigan,Ann Arbor,Michigan,United States of America.
4Department of Pediatrics,School of Medicine,Divisions of Pediatric Cardiology and Critical Care Medicine,Washington University,St. Louis,Missouri,United States of America.
5Department of Internal Medicine,Division of Geriatric Medicine and Palliative Care,University of Michigan,Ann Arbor,Michigan,United States of America.


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.


CHD; hypoplastic left heart syndrome; paediatric palliative care; parental stress

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