Hostname: page-component-76fb5796d-qxdb6 Total loading time: 0 Render date: 2024-04-27T00:56:55.660Z Has data issue: false hasContentIssue false
  • English
  • Français

Screening of adults with congenital cardiac disease lost for follow-up

Published online by Cambridge University Press:  24 October 2007

Kasper Iversen ,
Niels G. Vejlstrup ,
Lars Sondergaard  and
Olav W. Nielsen
Kasper Iversen*
Affiliation:
The Heart Centre, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
Niels G. Vejlstrup
Affiliation:
The Heart Centre, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
Lars Sondergaard
Affiliation:
The Heart Centre, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
Olav W. Nielsen
Affiliation:
The Heart Centre, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
*
Correspondence to: Dr Kasper Iversen MD, Department of Cardiology, The Heart Centre, Copenhagen University Hospital Rigshospitalet, DK-2100 Copenhagen Ø, Denmark. Tel: +45 3545 2018; Fax: +45 3545 2648; E-mail: kasper.iversen@dadlnet.dk
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

A problem facing doctors treating adults with congenitally malformed hearts is that a significant number of these patients are lost for follow-up. The purpose of our study is to describe the medical history and clinical findings in a group of such adults that was lost for follow-up.

Design, settings and patients

The Danish press ran a front-page story about adults with congenitally malformed hearts who were lost for follow-up. These patients were strongly advised to contact a center for congenital cardiac disease, and we examined all responding patients within four-weeks.

Interventions

We carried out a structured interview, a clinical examination, echocardiography, and measured levels of N-terminal pro brain natriuretic peptide.

Results

The number of responders was 147. Based on the diagnosis and the findings, further follow-up was scheduled for 52 (35.4%), either because of significant residual lesions, found in 32, or the risk of late complications, judged to be present in 20. Symptoms were present in 36.5% of patients scheduled for follow-up. The presence of a heart murmur was highly predictive of the need for further follow-up but the sensitivity was too low to recommend the use of auscultation as a screening test.

Conclusion

A large proportion of adults with congenitally malformed hearts who are lost for follow-up require regular assessment according to a modern standard. Symptoms, signs, and measurement of natriuretic peptide cannot replace full cardiological assessment. It is a challenge for centres treating adults with congenital heart disease to find the lost group of patient with significant cardiac malformations.

Keywords

Grown-up congenital heart diseaseechocardiographyauscultationnatriuretic peptides
Type
Original Article
Information
Cardiology in the Young , Volume 17 , Issue 6 , December 2007 , pp. 601 - 608
Copyright
Copyright © Cambridge University Press 2007

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1. Macmahon, B, Mckeown, T, Record, RG. The incidence and life expectation of children with congenital heart disease. Br Heart J 1953; 15: 121–129.CrossRefGoogle ScholarPubMed
2. Grown-up congenital heart (GUCH) disease: current needs provision of service for adolescents, adults with congenital heart disease in the UK. Heart 2002; 88 (1 Suppl): i1–14.CrossRefGoogle Scholar
3. Child, JS, Collins-Nakai, RL, Alpert, JS, et al. . Task force 3: workforce description and educational requirements for the care of adults with congenital heart disease. J Am Coll Cardiol 2001; 37: 1183–1187.CrossRefGoogle ScholarPubMed
4. Deanfield, J, Thaulow, E, Warnes, C, et al. . Management of grown up congenital heart disease. Eur Heart J 2003; 24: 1035–1084.CrossRefGoogle ScholarPubMed
5. Gatzoulis, MA, Hechter, S, Siu, SC, Webb, GD. Outpatient clinics for adults with congenital heart disease: increasing workload and evolving patterns of referral. Heart 1999; 81: 57–61.CrossRefGoogle ScholarPubMed
6. Perloff, JK. Congenital heart disease in adults. A new cardiovascular subspecialty. Circulation 1991; 84: 1881–1890.CrossRefGoogle ScholarPubMed
7. Somerville, J. Management of adults with congenital heart disease: an increasing problem. Annu Rev Med 1997; 48: 283–293.CrossRefGoogle ScholarPubMed
8. Williams, RG, Pearson, GD, Barst, RJ, et al. . Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease. J Am Coll Cardiol 2006; 47: 701–707.CrossRefGoogle Scholar
9. Reid, GJ, Irvine, MJ, McCrindle, BW, et al. . Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 2004; 113: e197–e205.CrossRefGoogle ScholarPubMed
10. Wacker, A, Kaemmerer, H, Hollweck, R, et al. . Outcome of operated and unoperated adults with congenital cardiac disease lost to follow-up for more than five years. Am J Cardiol 2005; 95: 776–779.CrossRefGoogle ScholarPubMed
11. Azar, H, Hardesty, RL, Pontius, RG, Zuberbuhler, JR, Bahnson, HT. A review of total correction in 200 cases of tetralogy of Fallot. Arch Surg 1969; 99: 281–285.CrossRefGoogle ScholarPubMed
12. Warnes, CA, Liberthson, R, Danielson, GK, et al. . Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001; 37: 1170–1175.CrossRefGoogle ScholarPubMed
13. Murphy, JG, Gersh, BJ, McGoon, MD, et al. . Long-term outcome after surgical repair of isolated atrial septal defect. Follow-up at 27 to 32 years. N Engl J Med 1990; 323: 1645–1650.CrossRefGoogle ScholarPubMed
14. Nygren, A, Sunnegardh, J, Berggren, H. Preoperative evaluation and surgery in isolated ventricular septal defects: a 21 year perspective. Heart 2000; 83: 198–204.CrossRefGoogle ScholarPubMed
15. Ali Khan, MA, al Yousef, S, Mullins, CE, Sawyer, W. Experience with 205 procedures of transcatheter closure of ductus arteriosus in 182 patients, with special reference to residual shunts and long-term follow-up. J Thorac Cardiovasc Surg 1992; 104: 1721–1727.CrossRefGoogle ScholarPubMed