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Design and initial results of a programme for routine standardised longitudinal follow-up after congenital heart surgery

Published online by Cambridge University Press:  02 February 2017

Sara K. Pasquali ,
Chitra Ravishankar ,
Jennifer C. Romano ,
Kristin Kane ,
Suzanne Viers ,
Andrea Kennedy ,
Nancy Burnham ,
Ray Lowery ,
Karen Uzark  and
Lauren Retzloff
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Sara K. Pasquali*
Affiliation:
Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Chitra Ravishankar
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America
Jennifer C. Romano
Affiliation:
Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Kristin Kane
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America
Suzanne Viers
Affiliation:
Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Andrea Kennedy
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America
Nancy Burnham
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America
Ray Lowery
Affiliation:
Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Karen Uzark
Affiliation:
Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Lauren Retzloff
Affiliation:
Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Jonathon J. Rome
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America
Joseph W. Rossano
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America
John R. Charpie
Affiliation:
Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Thomas L. Spray
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America
Michael G. Gaies
Affiliation:
Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Richard G. Ohye
Affiliation:
Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
J. William Gaynor
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, United States of America
*
Correspondence to: S. Pasquali, MD, MHS, Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, 1540 E. Hospital Drive, Ann Arbor, MI 48105, United States of America. Tel: 734 232 8594; Fax: 734 936 9470; E-mail: [email protected]
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Abstract

Background

With improvements in early survival following congenital heart surgery, it has become increasingly important to understand longer-term outcomes; however, routine collection of these data is challenging and remains very limited. We describe the development and initial results of a collaborative programme incorporating standardised longitudinal follow-up into usual care at the Children’s Hospital of Philadelphia (CHOP) and University of Michigan (UM).

Methods

We included children undergoing benchmark operations of the Society of Thoracic Surgeons. Considerations regarding personnel, patient/parent engagement, funding, regulatory issues, and annual data collection are described, and initial follow-up rates are reported.

Results

The present analysis included 1737 eligible patients undergoing surgery at CHOP from January 2007 to December 2014 and 887 UM patients from January 2010 to December 2014. Overall, follow-up data, of any type, were obtained from 90.8% of patients at CHOP (median follow-up 4.3 years, 92.2% survival) and 98.3% at UM (median follow-up 2.8 years, 92.7% survival), with similar rates across operations and institutions. Most patients lost to follow-up at CHOP had undergone surgery before 2010. Standardised questionnaires assessing burden of disease/quality of life were completed by 80.2% (CHOP) and 78.4% (UM) via phone follow-up. In subsequent pilot testing of an automated e-mail system, 53.4% of eligible patients completed the follow-up questionnaire through this system.

Conclusions

Standardised follow-up data can be obtained on the majority of children undergoing benchmark operations. Ongoing efforts to support automated electronic systems and integration with registry data may reduce resource needs, facilitate expansion across centres, and support multi-centre efforts to understand and improve long-term outcomes in this population.

Keywords

CHDcongenital heart surgeryoutcomes
Type
Original Articles
Information
Cardiology in the Young , Volume 26 , Special Issue 8: HeartWeek 2016 , December 2016 , pp. 1590 - 1596
Copyright
© Cambridge University Press 2017 

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References

1. Gilboa, SM, Devine, OJ, Kucik, JE, et al. Congenital heart defects in the United States: estimating the magnitude of the affected population in 2010. Circulation 2016; 134: 101–109.Google Scholar
2. Pasquali, SK, Jacobs, JP, Farber, GK, et al. Report of the National Heart, Lung, and Blood Institute working group: an integrated network for congenital heart disease research. Circulation 2016; 133: 1410–1418.Google Scholar
3. Wernovsky, G, Lihn, SL, Olen, MM. Creating a lesion-specific “roadmap” for ambulatory care following surgery for complex congenital cardiac disease. Cardiol Young 2016; 1–15 [Epub ahead of print].Google Scholar
4. Wernovsky, G, Rome, JJ, Tabbutt, S, et al. Guidelines for the outpatient management of complex congenital heart disease. Congenit Heart Dis 2006; 1: 10–26.Google Scholar
5. Jacobs, JP, Morales, DLS. Strategies for longitudinal follow-up of patients with pediatric and congenital cardiac disease. Prog Pediatr Cardiol 2011; 32: 97–102.Google Scholar
6. Bradley, DJ, Wu, DTY, Goldberg, CS, et al. Out of many, one: integrating data in the pediatric cardiovascular environment. Cardiol Young (in press).Google Scholar
7. Pediatric Congenital Heart Association. Retrieved 22 July 2016, from http://conqueringchd.org/.Google Scholar
8. Jacobs, JP, O’Brien, SM, Pasquali, SK, et al. Variation in outcomes for benchmark operations: an analysis of the society of thoracic surgeons congenital heart surgery database. Ann Thorac Surg 2011; 92: 2184–2191.Google Scholar
9. Harris, PA, Taylor, R, Thielke, R, et al. Research electronic data capture (REDCap) – a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42: 377–381.Google Scholar
10. Uzark, K, Jones, K, Burwinkle, TM, Varni, JW. The Pediatric Quality of Life Inventory in children with heart disease. Prog Pediatr Cardiol 2003; 18: 141–148.Google Scholar
11. Uzark, K, Jones, K, Slusher, J, et al. Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008; 121: e1060–e1067.Google Scholar
12. Improving patient outcomes after radical prostatectomy. Retrieved July 22, 2016, from http://musicurology.com/pro/.Google Scholar
13. Fernando, HC, Landreneau, RJ, Mandrekar, SJ, et al. Analysis of longitudinal quality of life data in high-risk operable patients with lung cancer: results from the ACOSOG Z4032 (Alliance) multicenter randomized trial. J Thorac Cardiovasc Surg 2015; 149: 718–726.Google Scholar