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Risk factors for loss to follow-up among children and young adults with congenital heart disease

Published online by Cambridge University Press:  21 October 2011

Andrew S. Mackie ,
Gwen R. Rempel ,
Kathryn N. Rankin ,
David Nicholas  and
Joyce Magill-Evans
Andrew S. Mackie*
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada
Gwen R. Rempel
Affiliation:
Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada
Kathryn N. Rankin
Affiliation:
Division of Cardiology, Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada
David Nicholas
Affiliation:
Department of Social Work, University of Calgary, Edmonton, Alberta, Canada
Joyce Magill-Evans
Affiliation:
Department of Occupational Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Alberta, Canada
*
Correspondence to: Dr A. S. Mackie, MD, SM, Division of Cardiology, Department of Pediatrics, Stollery Children's Hospital, 4C2 Walter C. Mackenzie Centre, 8440-112th Street NW, Edmonton, Alberta, Canada T6G 2B7. Tel: 780 407 8361; Fax: 780 407 3954; E-mail: andrew.mackie@ualberta.ca
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Abstract

Objective

To identify risk factors for loss to cardiology follow-up among children and young adults with congenital heart disease.

Methods

We used a matched case-control design. Cases were born before January, 2001 with moderate or complex congenital heart disease and were previously followed up in the paediatric or adult cardiology clinic, but not seen for 3 years or longer. Controls had been seen within 3 years. Controls were matched 3:1 to cases by year of birth and congenital heart disease lesion. Medical records were reviewed for potential risk factors for loss to follow-up. A subset of cases and controls participated in recorded telephone interviews.

Results

A total of 74 cases (66% male) were compared with 222 controls (61% male). A history of missed cardiology appointments was predictive of loss to follow-up for 3 years or longer (odds ratio 13.0, 95% confidence interval 3.3–51.7). Variables protective from loss to follow-up were higher family income (odds ratio 0.87 per $10,000 increase, 0.77–0.98), cardiac catheterisation within 5 years (odds ratio 0.2, 95% confidence interval 0.1–0.6), and chart documentation of the need for cardiology follow-up (odds ratio 0.4, 95% confidence interval 0.2–0.8). Cases lacked awareness of the importance of follow-up and identified primary care physicians as their primary source of information about the heart, rather than cardiologists. Unlike cases, controls had methods to remember appointments.

Conclusions

A history of one or more missed cardiology appointments predicted loss to follow-up for 3 or more years, as did lack of awareness of the need for follow-up. Higher family income, recent catheterisations, and medical record documentation of the need for follow-up were protective.

Keywords

Cardiac defectscongenitalpaediatricadultcontinuity of caremixed method
Type
Original Article
Information
Cardiology in the Young , Volume 22 , Issue 3 , June 2012 , pp. 307 - 315
Copyright
Copyright © Cambridge University Press 2012

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Mackie Supplementary Appendices

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