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

  • Hayley S. Hancock (a1), Ken Pituch (a2), Karen Uzark (a3), Priya Bhat (a4), Carly Fifer (a3), Maria Silveira (a5), Sunkyung Yu (a3), Suzanne Welch (a3), Janet Donohue (a3), Ray Lowery (a3) and Ranjit Aiyagari (a3)...


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.


Corresponding author

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:


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1. Ohye, RG, Schonbeck, JV, Eghtesady, P, et al. Cause, timing, and location of death in the Single Ventricle Reconstruction trial. J Thorac Cardiovasc Surg 2012; 144: 907914.
2. Ohye, RG, Sleeper, LA, Mahony, L, et al. Comparison of shunt types in the Norwood procedure for single-ventricle lesions. N Engl J Med 2010; 362: 19801992.
3. Helfricht, S, Latal, B, Fischer, JE, Tomaske, M, Landolt, MA. Surgery-related posttraumatic stress disorder in parents of children undergoing cardiopulmonary bypass surgery: a prospective cohort study. Pediatr Crit Care Med 2008; 9: 217223.
4. Lawoko, S, Soares, JJ. Psychosocial morbidity among parents of children with congenital heart disease: a prospective longitudinal study. Heart Lung 2006; 35: 301314.
5. Rychik, J, Donaghue, DD, Levy, S, et al. Maternal psychological stress after prenatal diagnosis of congenital heart disease. J Pediatr 2013; 162: 302307.e301.
6. Sarajuuri, A, Lonnqvist, T, Schmitt, F, Almqvist, F, Jokinen, E. Patients with univentricular heart in early childhood: parenting stress and child behaviour. Acta Paediatr 2012; 101: 252257.
7. Uzark, K, Jones, K. Parenting stress and children with heart disease. J Pediatr Health Care 2003; 17: 163168.
8. Vrijmoet-Wiersma, CM, Ottenkamp, J, van Roozendaal, M, Grootenhuis, MA, Koopman, HM. A multicentric study of disease-related stress, and perceived vulnerability, in parents of children with congenital cardiac disease. Cardiol Young 2009; 19: 608614.
9. Woolf-King, SE, Anger, A, Arnold, EA, Weiss, SJ, Teitel, D. Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc 2017; 6: e004862.
10. Morell, E, Wolfe, J, Scheurer, M, et al. Patterns of care at end of life in children with advanced heart disease. Arch Pediatr Adolesc Med 2012; 166: 745748.
11. Himelstein, BP, Hilden, JM, Boldt, AM, Weissman, D. Pediatric palliative care. New Engl J Med 2004; 350: 17521762.
12. Mack, JW, Wolfe, J. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr 2006; 18: 1014.
13. Feudtner, C, Womer, J, Augustin, R, et al. Pediatric palliative care programs in children’s hospitals: a cross-sectional national survey. Pediatrics 2013; 132: 10631070.
14. Moore, D, Sheetz, J. Pediatric palliative care consultation. Pediatr Clin North Am 2014; 61: 735747.
15. Bradford, N, Herbert, A, Mott, C, Armfield, N, Young, J, Smith, A. Components and principles of a pediatric palliative care consultation: results of a Delphi study. J Palliat Med 2014; 17: 12061213.
16. Beck, AT, Steer, RA, Brown, GK. BDI-II, Beck Depression Inventory: Manual, 2nd edn. Psychological Corp. and Harcourt Brace, San Antonio, TX and Boston, 1996.
17. Carver, CS. You want to measure coping but your protocol’s too long: consider the brief COPE. Int J Behav Med 1997; 4: 92100.
18. Carver, CS, Scheier, MF, Weintraub, JK. Assessing coping strategies: a theoretically based approach. J Pers Soc Psychol 1989; 56: 267283.
19. Spielberger, CD. Manual for the State-Trait Anxiety Inventory. Consulting Psychologists Press, Palo Alto, CA, 1983.
20. Varni, JW, Sherman, SA, Burwinkle, TM, Dickinson, PE, Dixon, P. The PedsQL Family Impact Module: preliminary reliability and validity. Health Qual Life Outcomes 2004; 2: 55.
21. Goodman, SH, Tully, EC. Recurrence of depression during pregnancy: psychosocial and personal functioning correlates. Depress Anxiety 2009; 26: 557567.
22. Su, KP, Chiu, TH, Huang, CL, et al. Different cutoff points for different trimesters? The use of Edinburgh Postnatal Depression Scale and Beck Depression Inventory to screen for depression in pregnant Taiwanese women. Gen Hosp Psychiatry 2007; 29 (5): 436441.
23. Medrano, GR, Berlin, KS, Hobart Davies, W. Utility of the PedsQL family impact module: assessing the psychometric properties in a community sample. Qual Life Res 2013; 22: 28992907.
24. Caris, EC, Dempster, N, Wernovsky, G, et al. Anxiety scores in caregivers of children with hypoplastic left heart syndrome. Congenit Heart Dis 2016; 11: 727732.
25. Temel, JS, Greer, JA, Muzikansky, A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. New Engl J Med 2010; 363: 733742.
26. Yoong, J, Park, ER, Greer, JA, et al. Early palliative care in advanced lung cancer: a qualitative study. JAMA Intern Med 2013; 173: 283290.
27. Pirl, WF, Greer, JA, Traeger, L, et al. Depression and survival in metastatic non-small-cell lung cancer: effects of early palliative care. J Clin Oncol 2012; 30: 13101315.
28. Irwin, KE, Greer, JA, Khatib, J, Temel, JS, Pirl, WF. Early palliative care and metastatic non-small cell lung cancer: potential mechanisms of prolonged survival. Chron Respir Dis 2013; 10: 3547.
29. Bakitas, M, Lyons, KD, Hegel, MT, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA 2009; 302: 741749.
30. Kang, TI, Munson, D, Hwang, J, Feudtner, C. Integration of palliative care into the care of children with serious illness. Pediatr Rev 2014; 35 (8): 318325.
31. Zhukovsky, DS, Herzog, CE, Kaur, G, Palmer, JL, Bruera, E. The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer. J Palliat Med 2009; 12: 343349.
32. Wolfe, J, Hammel, JF, Edwards, KE, et al. Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 2008; 26: 17171723.
33. Voyles, E. The development and outcomes of a pediatric palliative care program: a quality improvement process. J Pediatr Nurs 2013; 28: 196199.


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