Publication
Impact of early palliative care intervention on maternal stress in mothers of infants prenatally diagnosed with single ventricle heart disease: A randomized clinical trial
Hancock H, Pituch K, Uzark K, Bhat P, Fifer C, Silveira M, Yu S, Donohue J, Lowery R, Aiyagari R · Journal of the American College of Cardiology · 2016
Background: Children with single ventricle (SV) cardiac defects requiring staged palliation have a high risk of mortality and receive invasive and complex care, resulting in significant maternal stress. In other complex, life-limiting illnesses among children, pediatric palliative care (PPC) may mitigate maternal distress. We hypothesized early PPC in the SV population may have the same beneficial effect upon mothers. Methods: In this pilot trial of early PPC, mothers of infants with a prenatal diagnosis of SV completed 4 questionnaires measuring anxiety, depression, coping, and quality of life/family functioning at a prenatal visit (not at initial diagnosis) and again at neonatal discharge. Infants were randomized to receive early PPC (defined as initial consultation prior to surgery consisting of structured evaluation, psychosocial/ spiritual support, and communication between mothers and care providers) or usual care. Results: Among 56 eligible subjects, forty mothers enrolled and completed baseline surveys; 38 neonates randomized (18 early PPC, 20 usual care) and 34 postnatal surveys were completed (3 neonates died, 1 mother declined). Baseline Beck Depression Index II and State- Trait Anxiety Index (STAI) scores exceeded those of a normal pregnant sample (mean 13.76 +/- SD 8.46 vs. 7.0 +/- 5.0, and 46.34 +/- 12.59 vs. 29.8 +/- 6.35, respectively; both P=0.0001), but there were no significant differences between study groups. There was a significant decrease in prenatal to postnatal STAI scores in the early PPC group (-7.6 vs. 0.3 in usual care, P=0.02). Significantly higher postnatal Brief Cope Inventory scores for positive reframing, an adaptive response, were noted in the early PPC group (P=0.03). The early PPC group had a positive change in communication and family relationships scores for the Peds QL Family Impact Module (medium effect size of 0.46 and 0.41, respectively). Conclusions: In this pilot randomized trial of early PPC, mothers of children with SV heart disease experienced high levels of depression and anxiety in the prenatal period. Early PPC in the SV population resulted in decreased maternal stress, improved maternal coping, and improved communication and family relationships.
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