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Challenges of intra-institutional transfer of care from paediatric to adult congenital cardiology: the need for retention as well as transition

Published online by Cambridge University Press:  13 April 2015

Claudine M. Bohun ,
Patricia Woods ,
Christiane Winter ,
Julie Mitchell ,
Joel McLarry ,
Joseph Weiss  and
Craig S. Broberg
Claudine M. Bohun
Affiliation:
Division of Pediatric Cardiology, Oregon Health & Science University, Portland, Oregon, United states of America
Patricia Woods
Affiliation:
Adult Congenital Heart Program, Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, United states of America
Christiane Winter
Affiliation:
Oregon Clinical and Translational Research Institute, Oregon Health & Science University, Portland, Oregon, United states of America
Julie Mitchell
Affiliation:
Oregon Clinical and Translational Research Institute, Oregon Health & Science University, Portland, Oregon, United states of America
Joel McLarry
Affiliation:
Adult Congenital Heart Program, Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, United states of America
Joseph Weiss
Affiliation:
Adult Congenital Heart Program, Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, United states of America
Craig S. Broberg*
Affiliation:
Adult Congenital Heart Program, Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, United states of America
*
Correspondence to: C. Broberg, MD, UHN 62, Knight Cardiovascular Institute, 3181 SW Sam Jackson Park Road, Portland, OR 97239, United States of America. Tel: +503 494 7400; Fax: +503 494 8550; E-mail: brobergc@ohsu.edu
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Abstract

Background

Transferring patients with CHD from paediatric to adult care has been challenging, especially across institutions. Within a single institution, some issues such as provider interaction, information exchange, or administrative directives should not play a significant role, and should favour successful transfer.

Objective

We studied patients who were eligible for transfer to the adult congenital heart disease service within our institution in order to identify factors associated with successful transfer to adult care providers versus failure to transfer.

Methods

Patients above18 years of age with CHD who were seen by paediatric cardiologists before January, 2008 were identified through a patient-care database. Records were reviewed to determine follow-up between 2008 and 2011 and to determine whether the patient was seen in the adult congenital cardiology clinic, paediatric cardiology clinic, or had no follow-up, and statistical comparisons were made between groups.

Results

After reviewing 916 records, 229 patients were considered eligible for transition to adult congenital cardiology. Of these, 77 (34%) were transferred successfully to adult congenital cardiology, 47 (21%) continued to be seen by paediatric cardiologists, and 105 (46%) were lost to follow-up. Those who transferred successfully differed with regard to complexity of diagnosis, insurance, and whether a formal referral was made by a paediatric care provider. Only a small fraction of the patients who were lost to follow-up could be contacted.

Conclusion

Within a single institution, with shared information systems, administrations, and care providers, successful transfer from paediatric to adult congenital cardiology was still poor. Efforts for successful retention are just as vital as those for transfer.

Keywords

Adult congenital heart diseasetransitiontransfer of carelost to follow-upretention
Type
Original Articles
Information
Cardiology in the Young , Volume 26 , Issue 2 , February 2016 , pp. 327 - 333
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Copyright
© Cambridge University Press 2015 

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References

1. 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
2. Lloyd-Jones, D, Adams, R, Carnethon, M, et al. Heart disease and stroke statistics–2009 update: a report from the American Heart Association Statistics Committee and Stroke Statistics Subcommittee. Circulation 2009; 119: 480–486.Google Scholar
3. Marelli, AJ, Gurvitz, M. From numbers to guidelines. Prog Cardiovasc Dis 2011; 53: 239–246.CrossRefGoogle ScholarPubMed
4. Williams, RG, Lu, Y. Caring for ACHD in a market-driven society. Methodist Debakey Cardiovasc J 2011; 7: 33–34.CrossRefGoogle Scholar
5. 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
6. 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
7. Garson, A, Allen, HD, Gersony, WM, et al. The cost of congenital heart disease in children and adults. A model for multicenter assessment of price and practice variation. Arch Pediatr Adolesc Med 1994; 148: 1039–1045.Google Scholar
8. 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.Google Scholar
9. Bureau USC. Oregon QuickFacts. United States Census Bureau, 2014. Retrieved from http://quickfacts.census.gov/qfd/states/41000.html Google Scholar
10. 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
11. Webb, GD, Williams, RG. Care of the adult with congenital heart disease: introduction. J Am Coll Cardiol 2001; 37: 1166.Google Scholar
12. Knauth, A, Verstappen, A, Reiss, J, Webb, GD. Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 2006; 24: 619–629.Google Scholar
13. Saidi, A, Kovacs, AH. Developing a transition program from pediatric- to adult-focused cardiology care: practical considerations. Congenit Heart Dis 2009; 4: 204–215.Google Scholar
14. Fernandes, SM, Khairy, P, Fishman, L, et al. Referral patterns and perceived barriers to adult congenital heart disease care: results of a survey of U.S. pediatric cardiologists. J Am Coll Cardiol 2012; 60: 2411–2418.Google Scholar
15. Fortuna, RJ, Halterman, JS, Pulcino, T, Robbins, BW. Delayed transition of care: a national study of visits to pediatricians by young adults. Acad Pediatr 2012; 12: 405–411.Google Scholar
16. Sable, C, Foster, E, Uzark, K, et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation 2011; 123: 1454–1485.CrossRefGoogle ScholarPubMed
17. Clarizia, NA, Chahal, N, Manlhiot, C, Kilburn, J, Redington, AN, McCrindle, BW. Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent and health care provider. Can J Cardiol 2009; 25: e317–e322.Google Scholar
18. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110: 1304–1306. PMID no. 12456949.Google Scholar