Hostname: page-component-586b7cd67f-g8jcs Total loading time: 0 Render date: 2024-11-22T19:28:19.315Z Has data issue: false hasContentIssue false
  • English
  • Français

Loss of follow-up in transition to adult CHD: a single-centre experience

Published online by Cambridge University Press:  03 July 2018

Madhukar S. Kollengode Open the ORCID record for Madhukar S. Kollengode [Opens in a new window] ,
Curt J. Daniels  and
Ali N. Zaidi
Madhukar S. Kollengode*
Affiliation:
Department of Internal Medicine and Pediatrics, The Ohio State University Wexner Medical Center, Columbus, OH, USA
Curt J. Daniels
Affiliation:
The Heart Center, Nationwide Children’s Hospital, Division of Cardiovascular Medicine, The Ohio State University Wexner Medical Center, Columbus, OH, USA
Ali N. Zaidi
Affiliation:
The Heart Center, Nationwide Children’s Hospital, Division of Cardiovascular Medicine, The Ohio State University Wexner Medical Center, Columbus, OH, USA
*
Author for correspondence: M. S. Kollengode, MD, Department of Medicine, Division of Cardiology, The University of Colorado Anschutz Medical Campus, 12631 East 17th Avenue, #1704, Mail stop B130, Aurora, CO 80045, USA. Tel: 720 848 6583; Fax: 877 991 6414; E-mail: madhukar.kollengode@ucdenver.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Lapses in care during transition in adult CHD patients lead to increased morbidity and mortality. Previous studies have investigated predictors of poor follow-up in universal healthcare paradigms and select American populations. We studied patients with a wide spectrum of CHD severity within a single American centre to identify factors associated with successful internal transition and maintenance of care. Loss of follow-up was defined as no documented cardiac follow-up for ⩾3 years. Ambulatory cardiology patients aged 16–17 years with CHD were retrospectively enrolled and contacted. A survey assessing demographics, patients’ understanding of their CHD, medical status, and barriers to care was administered. On the basis of chart review of 197 enrolled patients, 74 demonstrated loss of follow-up (37.6%). Of 78 successfully contacted patients, 58 were surveyed, of whom a minority had loss of follow-up (n=16). The status of most patients with loss of follow-up was not known. Maintenance of care was associated with greater complexity of CHD (p<0.01), establishment of care with an adult CHD provider (p<0.001), use of prescription medications (p<0.001), and receipt of education emphasising the importance of long-term cardiac care (p<0.003). Insurance lapses were not associated with loss of follow-up (p=0.08). Transition and maintenance of care was suboptimal even within a single centre. Over one-third of patients did not maintain care. Patients with greater-complexity CHD, need for medications, receipt of transition education, and care provided by adult CHD providers had superior follow-up.

Keywords

Adult CHDCHDrisk factorsadolescentyoung adultfollow-up studies
Type
Original Article
Information
Cardiology in the Young , Volume 28 , Issue 8 , August 2018 , pp. 1001 - 1008
Check for updates
Copyright
© Cambridge University Press 2018 

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.)

Footnotes

Cite this article: Kollengode MS, Daniels CJ, Zaidi AN. (2018) Loss of follow-up in transition to adult CHD: a single-centre experience. Cardiology in the Young28: 1001–1008. doi: 10.1017/S1047951118000690

*

Current address: Department of Medicine, Division of Cardiology, The University of Colorado Anschutz Medical Campus, Aurora, CO, USA.

†

Current address: The Heart & Vascular Care Center, The Montefiore Medical Center, The Pediatric Heart Center, The Children’s Hospital at Montefiore, Albert Einstein College of Medicine, New York, NY, USA.

References

1. Goossens, E, Stephani, I, Hilderson, D, et al. Transfer of adolescents with congenital heart disease from pediatric cardiology to adult health care: an analysis of transfer destinations. J Am Coll Cardiol 2011; 57: 2368–2374.Google Scholar
2. 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
3. Zomer, AC, Vaartjes, I, Grobbee, DE, Mulder, BJM. Adult congenital heart disease: new challenges. Int J Cardiol 2013; 163: 105–107.Google Scholar
4. van der Bom, T, Zomer, AC, Zwinderman, AH, Meijboom, FJ, Bouma, BJ, Mulder, BJM. The changing epidemiology of congenital heart disease. Nat Rev Cardiol 2011; 8: 50–60.CrossRefGoogle ScholarPubMed
5. Marelli, AJ, Mackie, AS, Ionescu-Ittu, R, Rahme, E, Pilote, L. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation 2007; 115: 163–172.Google Scholar
6. Vis, JC, van der Velde, ET, Schuuring, MJ, et al. WANTED! 8000 heart patients: identification of adult patients with a congenital heart defect lost to follow-up. Int J Cardiol 2011; 149: 246–247.CrossRefGoogle ScholarPubMed
7. Warnes, CA, Liberthson, R, Danielson, GK Jr, et al. Task Force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001; 37: 1170–1175.Google Scholar
8. Ávila, P, Mercier, LA, Dore, A, et al. Adult congenital heart disease: a growing epidemic. Can J Cardiol 2014; 30 (Suppl): S410–S419.Google Scholar
9. Rodriguez, FH, Marelli, AJ. The epidemiology of heart failure in adults with congenital heart disease. Heart Fail Clin 2014; 10: 1–7.Google Scholar
10. Warnes, CA, Williams, RG, Bashore, TM, et al. ACC/AHA 2008 Guidelines for the Management of Adults with Congenital Heart Disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines. Circulation 2008; 118: e714–e833.Google Scholar
11. Mackie, AS, Ionescu-Ittu, R, Therrien, J, Pilote, L, Abrahamowicz, M, Marelli, AJ. Children and adults with congenital heart disease lost to follow-up: who and when? Circulation 2009; 120: 302–309.Google Scholar
12. Yeung, E, Kay, J, Roosevelt, GE, Brandon, M, Yetman, AT. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008; 125: 62–65.Google Scholar
13. Winter, MM, Mulder, BJM, Van Der Velde, ET. Letter by Winter et al regarding article, “children and adults with congenital heart disease lost to follow-up: who and when?”. Circulation 2010; 121: e252–e252.Google Scholar
14. Mackie, AS, Rempel, GR, Rankin, KN, Nicholas, D, Magill-Evans, J. Risk factors for loss to follow-up among children and young adults with congenital heart disease. Cardiol Young 2012; 22: 307–315.Google Scholar
15. Gurvitz, MZ, Inkelas, M, Lee, M, Stout, K, Escarce, J, Chang, RK. Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J Am Coll Cardiol 2007; 49: 875–882.Google Scholar
16. de Bono, J, Freeman, LJ. Aortic coarctation repair—lost and found: the role of local long term specialised care. Int J Cardiol 2005; 104: 176–183.Google Scholar
17. Moons, P, Hilderson, D, Van Deyk, K. Implementation of transition programs can prevent another lost generation of patients with congenital heart disease. Eur J Cardiovasc Nurs 2008; 7: 259–263.Google Scholar
18. Gurvitz, M, Valente, AM, Broberg, C, et al. Prevalence and predictors of gaps in care among adult congenital heart disease patients: HEART-ACHD (The Health, Education, and Access Research Trial). J Am Coll Cardiol 2013; 61: 2180–2184.Google Scholar
19. Roberta, GW. Transitioning youth with congenital heart disease from pediatric to adult health care. J Pediatr. 2015; 166: 15–19.Google Scholar
20. 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 (Pt 1): e197–e205.CrossRefGoogle ScholarPubMed
21. Iversen, K, Vejlstrup, NG, Sondergaard, L, Nielsen, OW. Screening of adults with congenital cardiac disease lost for follow-up. Cardiol Young 2007; 17: 601–608.Google Scholar
22. Foster, E, Graham, TP, Driscoll, DJ, et al. Task Force 2: special health care needs of adults with congenital heart disease. J Am Coll Cardiol 2001; 37: 1176–1183.Google Scholar
23. Moons, P, Pinxten, S, Dedroog, D, et al. Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. J Adolesc Health 2009; 44: 316–322.Google Scholar
24. Deanfield, J, Thaulow, E, Warnes, C, et al. Management of grown up congenital heart disease. Eur Heart J 2003; 24: 1035–1084.Google Scholar
25. Kirk, S. Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev 2008; 34: 567–575.Google Scholar
26. Saidi, A, Kovacs, AH. Developing a transition program from pediatric- to adult-focused cardiology care: practical considerations. Congenit Heart Dis 2009; 4: 204–215.CrossRefGoogle ScholarPubMed
27. Knauth, A, Verstappen, A, Reiss, J, Webb, GD. Transition and transfer from pediatric to adult care of the young adult with complex congenital heart dsease. Cardiol Clin 2006; 24: 619–629.CrossRefGoogle Scholar
28. Hilderson, D, Saidi, AS, Van Deyk, K, et al. Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe. Pediatr Cardiol 2009; 30: 786–793.Google Scholar
29. 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.Google Scholar
30. Mackie, AS, Pilote, L, Ionescu-Ittu, R, Rahme, E, Marelli, AJ. Health care resource utilization in adults with congenital heart disease. Am J Cardiol 2007; 99: 839–843.Google Scholar
31. Norris, MD, Webb, G, Drotar, D, et al. Prevalence and patterns of retention in cardiac care in young adults with congenital heart disease. J Pediatr 2013; 163: 902–904.Google Scholar
32. Van Deyk, K, Pelgrims, E, Troost, E, et al. Adolescents’ understanding of their congenital heart disease on transfer to adult-focused care. Am J Cardiol 2010; 106: 1803–1807.Google Scholar
33. Valente, AM, Lewis, M, Vaziri, SM, et al. Outcomes of adolescents and adults undergoing primary Fontan procedure. Am J Cardiol 2013; 112: 1938–1942.Google Scholar