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Design and initial results of a programme for routine standardised longitudinal follow-up after congenital heart
Sara K Pasquali1, Chitra Ravishankar2, Jennifer C Romano1
11Congenital Heart Center,University of Michigan C.S. Mott Children's Hospital,Ann Arbor,Michigan,United States of America.
Insights
Long-term follow-up data for pediatric congenital heart surgery patients is challenging but achievable. A collaborative program at CHOP and UM achieved high follow-up rates, demonstrating the feasibility of standardized data collection for improved outcomes.
Area of Science:
- Pediatric Cardiology
- Health Outcomes Research
- Clinical Data Management
Background:
- Improving long-term outcomes after congenital heart surgery requires robust data collection.
- Routine longitudinal follow-up data is currently limited and challenging to obtain.
- A collaborative program was developed to integrate standardized follow-up into routine care.
Purpose of the Study:
- To describe the development of a standardized longitudinal follow-up program.
- To report initial results and follow-up rates from two institutions.
- To assess the feasibility of collecting long-term outcome data in pediatric cardiac surgery patients.
Main Methods:
- Inclusion of children undergoing benchmark Society of Thoracic Surgeons operations.
- Description of considerations for personnel, patient engagement, funding, and regulatory issues.
- Annual data collection and reporting of initial follow-up rates.
Main Results:
- Analysis included 1737 patients at CHOP and 887 at UM.
- High follow-up rates achieved: 90.8% at CHOP (median 4.3 years) and 98.3% at UM (median 2.8 years).
- Standardized questionnaires completed by 80.2% (CHOP) and 78.4% (UM) via phone; 53.4% via automated email pilot.
Conclusions:
- Standardized follow-up data collection is feasible for most children undergoing benchmark cardiac operations.
- Automated systems and registry integration can reduce resource needs and facilitate multi-center studies.
- Improved data collection is crucial for understanding and enhancing long-term outcomes in this population.
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.
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