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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*
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: pasquali@med.umich.edu

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.

Type
Original Articles
Copyright
© Cambridge University Press 2017 

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