Pediatric Cardiology

, Volume 37, Issue 5, pp 899–912 | Cite as

The Impact of a Designated Cardiology Team Involving Telemedicine Home Monitoring on the Care of Children with Single-Ventricle Physiology After Norwood Palliation

  • Ashraf S. HarahshehEmail author
  • Lisa A. Hom
  • Sarah B. Clauss
  • Russell R. Cross
  • Amy R. Curtis
  • Rachel D. Steury
  • Stephanie J. Mitchell
  • Gerard R. Martin
Original Article


We evaluated the effect of an interdisciplinary single-ventricle task force (SVTF) that utilizes a family-driven, telemedicine home monitoring program on clinical outcomes of stage II admissions and its acceptance by parents and cardiologists. Study population was divided into two cohorts, one with Norwood surgery dates before the SVTF (pre-SVTF) and one interventional (post-SVTF). Post-SVTF data also included surveys of parents and cardiologists on the efficacy of the SVTF. Comparative and multivariate statistical testing was performed. Compared to the pre-SVTF group, the post-SVTF group had lower complications after stage II (18.4 vs. 34.1 %, p = 0.02), higher weight-for-age z scores at stage II (−1.5 ± 0.97 vs. −1.58 ± 1.34, p = 0.02) and were less likely to have a stage II weight-for-age z score below −2 (26.5 vs. 31.7 %, p = 0.03). A multivariate regression analysis showed providing a written red-flag action plan to parents at discharge was independently associated with higher weight at stage II (β = 0.42, p = 0.04) and higher weight-for-age z score (β = 0.48, p = 0.02). Parents’ satisfaction with SVTF (α = 0.97) was 4.34 ± 0.62; (95 % CI 4.01–4.67) and cardiologists’ acceptance (α = 0.93) was 4.1 ± 0.7 (95 % CI 3.79–4.42). Development of SVTF was associated with a reduction in complications post-stage II and improved weight status at stage II. A written red-flag action plan provided to parents at the time of Norwood discharge was associated with higher weight status at stage II. Parents and cardiologists expressed satisfaction with the utility of SVTF and encouraged expansion to cover all children with congenital heart disease.


Hypoplastic left heart syndrome Family-centered care Quality improvement Stage I palliation Interstage 



The authors wish to thank Angela Doty, Cathleen Shannon and Lindsay Attaway for their editorial assistance; Marcin Gierdalski, Cary McMahon, Lisa Ring and Carla Rothgery for data gathering; Heather Langlois for locating parents’ addresses.


This project was funded in part by C. Richard Beyda Distinguished Professorship in Cardiology, Children’s National Heart Institute/Children’s National Health System, Washington, D.C. Current funding sources for National Pediatric Cardiology Quality Improvement Collaborative include (1) participation fees from enrolled centers; (2) a Grant from the Children’s Heart Association of Cincinnati; (3) a federal Grant to the pediatric Center for Education and Research in Therapeutics at Cincinnati Children’s Hospital Medical Center, funded by the federal Agency for Healthcare Research and Quality [#U19HS021114 AHRQ].

Author Contributions

Ashraf Harahsheh was involved in study design, development of surveys, data gathering, analysis of data, and drafting the manuscript. Lisa A. Hom was involved in study design, development of surveys, data gathering, analysis of data, and revising the manuscript. Sarah B. Clauss was involved in data gathering, analysis of data, and revising the manuscript. Amy R. Curtis was involved in development of surveys, data gathering, analysis of data, and revising the manuscript. Russell R. Cross was involved in study design, development of surveys, data gathering, analysis of data, and revising the manuscript. Rachel D. Steury was involved in study design, development of surveys and data gathering. Stephanie J. Mitchell was involved in the analysis of data and revising the manuscript. Gerard R. Martin provided critical revision of the manuscript for important intellectual content. This submission is with the full knowledge and approval of the listed coauthors.

Compliance with Ethical Standards

Conflicts of interest

The authors report no conflicts of interest.

Supplementary material

246_2016_1366_MOESM1_ESM.pdf (3.1 mb)
Supplementary material 1 (PDF 3145 kb)
246_2016_1366_MOESM2_ESM.pdf (1.9 mb)
Supplementary material 2 (PDF 1958 kb)


  1. 1.
    Anderson JB, Beekman RH 3rd, Border WL, Kalkwarf HJ, Khoury PR, Uzark K, Eghtesady P, Marino BS (2009) Lower weight-for-age z score adversely affects hospital length of stay after the bidirectional Glenn procedure in 100 infants with a single ventricle. J Thorac Cardiovasc Surg 138(397–404):e391Google Scholar
  2. 2.
    Anderson JB, Beekman RH 3rd, Kugler JD, Rosenthal GL, Jenkins KJ, Klitzner TS, Martin GR, Neish SR, Brown DW, Mangeot C, King E, Peterson LE, Provost L, Lannon C (2015) Improvement in interstage survival in a national pediatric cardiology learning network. Circul Cardiovasc Qual Outcomes 8(4):428–436. doi: 10.1161/CIRCOUTCOMES.115.001956 CrossRefGoogle Scholar
  3. 3.
    Bhanji F, Gottesman R, de Grave W, Steinert Y, Winer LR (2012) The retrospective pre-post: a practical method to evaluate learning from an educational program. Acad Emerg Med 19(2):189–194CrossRefPubMedGoogle Scholar
  4. 4.
    Cross R, Steury R, Randall A, Fuska M, Sable C (2012) Single-ventricle palliation for high-risk neonates: examining the feasibility of an automated home monitoring system after stage I palliation. Future Cardiol 8:227–235CrossRefPubMedGoogle Scholar
  5. 5.
    Cross RR, Harahsheh AS, McCarter R, Martin GR (2014) Identified mortality risk factors associated with presentation, initial hospitalisation, and interstage period for the Norwood operation in a multi-centre registry: a report from the national pediatric cardiology-quality improvement collaborative. Cardiol Young 24:253–262CrossRefPubMedGoogle Scholar
  6. 6.
    Feinstein JA, Benson DW, Dubin AM, Cohen MS, Maxey DM, Mahle WT, Pahl E, Villafane J, Bhatt AB, Peng LF, Johnson BA, Marsden AL, Daniels CJ, Rudd NA, Caldarone CA, Mussatto KA, Morales DL, Ivy DD, Gaynor JW, Tweddell JS, Deal BJ, Furck AK, Rosenthal GL, Ohye RG, Ghanayem NS, Cheatham JP, Tworetzky W, Martin GR (2012) Hypoplastic left heart syndrome: current considerations and expectations. J Am Coll Cardiol 59:S1–S42CrossRefPubMedGoogle Scholar
  7. 7.
    Fenton TR, Kim JH (2013) A systematic review and meta-analysis to revise the fenton growth chart for preterm infants. BMC Pediatr 13:59CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Ghanayem NS, Hoffman GM, Mussatto KA, Cava JR, Frommelt PC, Rudd NA, Steltzer MM, Bevandic SM, Frisbee SS, Jaquiss RD, Litwin SB, Tweddell JS (2003) Home surveillance program prevents interstage mortality after the norwood procedure. J Thorac Cardiovasc Surg 126:1367–1377CrossRefPubMedGoogle Scholar
  9. 9.
    Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG (2009) Research electronic data capture (redcap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inf 42:377–381CrossRefGoogle Scholar
  10. 10.
    Hehir DA, Ghanayem NS (2013) Single-ventricle infant home monitoring programs: outcomes and impact. Curr Opin Cardiol 28:97–102CrossRefPubMedGoogle Scholar
  11. 11.
    Hehir DA, Dominguez TE, Ballweg JA, Ravishankar C, Marino BS, Bird GL, Nicolson SC, Spray TL, Gaynor JW, Tabbutt S (2008) Risk factors for interstage death after stage 1 reconstruction of hypoplastic left heart syndrome and variants. J Thorac Cardiovasc Surg 136:94–99, 99 e91–93Google Scholar
  12. 12.
    Hsieh HF, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Health Res 15:1277–1288CrossRefPubMedGoogle Scholar
  13. 13.
    Jaquiss RD, Ghanayem NS, Hoffman GM, Fedderly RT, Cava JR, Mussatto KA, Tweddell JS (2004) Early cavopulmonary anastomosis in very young infants after the norwood procedure: impact on oxygenation, resource utilization, and mortality. J Thorac Cardiovasc Surg 127:982–989CrossRefPubMedGoogle Scholar
  14. 14.
    Kugler JD, Beekman Iii RH, Rosenthal GL, Jenkins KJ, Klitzner TS, Martin GR, Neish SR, Lannon C (2009) Development of a pediatric cardiology quality improvement collaborative: from inception to implementation. From the joint council on congenital heart disease quality improvement task force. Congenit Heart Dis 4:318–328CrossRefPubMedGoogle Scholar
  15. 15.
    Li JS, Yow E, Berezny KY, Rhodes JF, Bokesch PM, Charpie JR, Forbus GA, Mahony L, Boshkov L, Lambert V, Bonnet D, Michel-Behnke I, Graham TP, Takahashi M, Jaggers J, Califf RM, Rakhit A, Fontecave S, Sanders SP (2007) Clinical outcomes of palliative surgery including a systemic-to-pulmonary artery shunt in infants with cyanotic congenital heart disease: does aspirin make a difference? Circulation 116:293–297CrossRefPubMedGoogle Scholar
  16. 16.
    Mahle WT, Spray TL, Wernovsky G, Gaynor JW, Clark BJ III (2000) Survival after reconstructive surgery for hypoplastic left heart syndrome: a 15-year experience from a single institution. Circulation 102:III136–III141CrossRefPubMedGoogle Scholar
  17. 17.
    Mahle WT, Spray TL, Gaynor JW, Clark BJ 3rd (2001) Unexpected death after reconstructive surgery for hypoplastic left heart syndrome. Ann Thorac Surg 71:61–65CrossRefPubMedGoogle Scholar
  18. 18.
    Menon SC, McCandless RT, Mack GK, Lambert LM, McFadden M, Williams RV, Minich LL (2013) Clinical outcomes and resource use for infants with hypoplastic left heart syndrome during bidirectional Glenn: summary from the joint council for congenital heart disease national pediatric cardiology quality improvement collaborative registry. Pediatr Cardiol 34:143–148CrossRefPubMedGoogle Scholar
  19. 19.
    WHO Multicentre Growth Reference Study Group (2006) World Health Organization child growth standards based on length/height, weight and age. Acta Paediatr Suppl. 450:76–85Google Scholar
  20. 20.
    Oster ME, Ehrlich A, King E, Petit CJ, Clabby M, Smith S, Glanville M, Anderson J, Darbie L, Beekman RH 3rd (2015) Association of interstage home monitoring with mortality, readmissions, and weight gain: a multicenter study from the national pediatric cardiology quality improvement collaborative. Circulation 132:502–508CrossRefPubMedGoogle Scholar
  21. 21.
    Peditools clinical tools for pediatric providers. http://peditools.Org/. Accessed 23 April 2015
  22. 22.
    Petit CJ, Fraser CD, Mattamal R, Slesnick TC, Cephus CE, Ocampo EC (2011) The impact of a dedicated single-ventricle home-monitoring program on interstage somatic growth, interstage attrition, and 1-year survival. J Thorac Cardiovasc Surg 142:1358–1366CrossRefPubMedGoogle Scholar
  23. 23.
    Rudd NA, Frommelt MA, Tweddell JS, Hehir DA, Mussatto KA, Frontier KD, Slicker JA, Bartz PJ, Ghanayem NS (2014) Improving interstage survival after norwood operation: outcomes from 10 years of home monitoring. J Thorac Cardiovasc Surg 148:1540–1547CrossRefPubMedGoogle Scholar
  24. 24.
    Sarajuuri A, Jokinen E, Puosi R, Mildh L, Mattila I, Lano A, Lonnqvist T (2010) Neurodevelopment in children with hypoplastic left heart syndrome. J Pediatr 157:414–420, 420 e411–414Google Scholar
  25. 25.
    Scotten M, Manos EL, Malicoat A, Paolo AM (2015) Minding the gap: interprofessional communication during inpatient and post discharge chasm care. Patient Educ Couns 98:895–900CrossRefPubMedGoogle Scholar
  26. 26.
    Simsic JM, Bradley SM, Stroud MR, Atz AM (2005) Risk factors for interstage death after the norwood procedure. Pediatr Cardiol 26:400–403CrossRefPubMedGoogle Scholar
  27. 27.
    Srinivasan C, Sachdeva R, Morrow WR, Gossett J, Chipman CW, Imamura M, Jaquiss RD (2009) Standardized management improves outcomes after the norwood procedure. Congenit Heart Dis 4:329–337CrossRefPubMedGoogle Scholar
  28. 28.
    Weems G (2007) Reverse scaling. In: Salkind NJ, Rasmussen K (eds) Encyclopedia of measurement and statistics. doi:http://dx.Doi.Org/10.4135/9781412952644, print isbn: 9781412916110 | online isbn: 9781412952644

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Ashraf S. Harahsheh
    • 1
    • 2
    Email author
  • Lisa A. Hom
    • 1
  • Sarah B. Clauss
    • 1
    • 2
  • Russell R. Cross
    • 1
    • 2
  • Amy R. Curtis
    • 1
  • Rachel D. Steury
    • 1
  • Stephanie J. Mitchell
    • 3
  • Gerard R. Martin
    • 1
    • 2
  1. 1.Children’s National Health SystemWashingtonUSA
  2. 2.Department of Pediatrics, Division of CardiologyChildren’s National Health System, The George Washington University School of MedicineWashingtonUSA
  3. 3.Children’s Research Institute, Children’s National Health SystemWashingtonUSA

Personalised recommendations