Skip to main content
Erschienen in: Pediatric Cardiology 2/2016

01.02.2016 | Original Article

Provision of Transition Education and Referral Patterns from Pediatric Cardiology to Adult Cardiac Care

verfasst von: Anna L. Harbison, Stafford Grady Jr., Kevin Chi, Susan M. Fernandes

Erschienen in: Pediatric Cardiology | Ausgabe 2/2016

Einloggen, um Zugang zu erhalten

Abstract

ACC/AHA guidelines recommend a structured preparation for and transfer to adult-oriented cardiac care for adult survivors of pediatric onset heart disease (POHD). Given this, we sought to describe the transition and transfer practices for a cohort of young adults with POHD and to determine factors associated with successful transfer to adult-oriented cardiac care. We performed a single-center, retrospective chart review on patients ≥18 years of age, with POHD likely to require lifelong cardiac care, who were seen in outpatient pediatric cardiology (PC) between 2008 and 2011. Successful transfer was defined as the subsequent attendance at adult cardiology (AC) within 2 years of PC visit. We identified 118 patients who met study criteria. Mean age 22.4 ± 2.0 years, 59 % male, 64 % white and 40 % Hispanic. Mean transition education topics noted was 3.3 ± 1.8 out of 20 and covered the underlying cardiac disease (89 %), follow-up and current medications (56 %) and exercise limitations (34 %). Recommendations for follow-up were AC (57 %) and PC (33 %). Of those told to transfer to AC, 79 % successfully transferred. Characteristics of successful transfer included: prior cardiac surgery (p = 0.008), cardiac medication use (p = 0.006) and frequency of follow-up ≤1 year (p = 0.037). One-quarter of all subjects did not follow-up within at least 2 years. Despite published guidelines, transition education appears lacking and the approach to transfer to adult cardiac care is not consistent. Given the increased risk of morbidity and mortality in this patient population, standardization of transition education and transfer processes appear warranted.
Literatur
1.
Zurück zum Zitat American Academy of P, American Academy of Family P, American College of P, Transitions Clinical Report Authoring G, Cooley WC, Sagerman PJ (2011) Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128:182–200CrossRef American Academy of P, American Academy of Family P, American College of P, Transitions Clinical Report Authoring G, Cooley WC, Sagerman PJ (2011) Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128:182–200CrossRef
2.
Zurück zum Zitat Clarizia NA, Chahal N, Manlhiot C, Kilburn J, Redington AN, McCrindle BW (2009) 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 25:e317–e322PubMedCentralCrossRefPubMed Clarizia NA, Chahal N, Manlhiot C, Kilburn J, Redington AN, McCrindle BW (2009) 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 25:e317–e322PubMedCentralCrossRefPubMed
3.
Zurück zum Zitat de Bono J, Freeman LJ (2005) Aortic coarctation repair—lost and found: the role of local long term specialised care. Int J Cardiol 104:176–183CrossRefPubMed de Bono J, Freeman LJ (2005) Aortic coarctation repair—lost and found: the role of local long term specialised care. Int J Cardiol 104:176–183CrossRefPubMed
4.
Zurück zum Zitat Fernandes SM, Khairy P, Fishman L, Melvin P, O’Sullivan-Oliveira J, Sawicki GS, Ziniel S, Breitinger P, Williams R, Takahashi M, Landzberg MJ (2012) Referral patterns and perceived barriers to adult congenital heart disease care. Results of a survey of U.S. Pediatric Cardiologists. J Am Coll Cardiol 60:2411–2418CrossRefPubMed Fernandes SM, Khairy P, Fishman L, Melvin P, O’Sullivan-Oliveira J, Sawicki GS, Ziniel S, Breitinger P, Williams R, Takahashi M, Landzberg MJ (2012) Referral patterns and perceived barriers to adult congenital heart disease care. Results of a survey of U.S. Pediatric Cardiologists. J Am Coll Cardiol 60:2411–2418CrossRefPubMed
5.
Zurück zum Zitat Fernandes SM, O’Sullivan-Oliveira J, Landzberg MJ, Khairy P, Melvin P, Sawicki GS, Ziniel S, Kenney LB, Garvey KC, Sobota A, O’Brien R, Nigrovic PA, Sharma N, Fishman LN (2014) Transition and transfer of adolescents and young adults with pediatric onset chronic disease: the patient and parent perspective. J Pediatr Rehabil Med 7:43–51PubMed Fernandes SM, O’Sullivan-Oliveira J, Landzberg MJ, Khairy P, Melvin P, Sawicki GS, Ziniel S, Kenney LB, Garvey KC, Sobota A, O’Brien R, Nigrovic PA, Sharma N, Fishman LN (2014) Transition and transfer of adolescents and young adults with pediatric onset chronic disease: the patient and parent perspective. J Pediatr Rehabil Med 7:43–51PubMed
6.
Zurück zum Zitat Gurvitz MZ, Inkelas M, Lee M, Stout K, Escarce J, Chang RK (2007) Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J Am Coll Cardiol 49:875–882CrossRefPubMed Gurvitz MZ, Inkelas M, Lee M, Stout K, Escarce J, Chang RK (2007) Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J Am Coll Cardiol 49:875–882CrossRefPubMed
7.
Zurück zum Zitat Gurvitz M, Marelli AJ, Mangione-Smith R, Jenkins K (2013) Building quality indicators to improve care for adults with congenital heart disease. J Am Coll Cardiol 62:2244–2253CrossRefPubMed Gurvitz M, Marelli AJ, Mangione-Smith R, Jenkins K (2013) Building quality indicators to improve care for adults with congenital heart disease. J Am Coll Cardiol 62:2244–2253CrossRefPubMed
8.
Zurück zum Zitat Knauth A, Verstappen A, Reiss J, Webb GD (2006) Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 24:619–629CrossRefPubMed Knauth A, Verstappen A, Reiss J, Webb GD (2006) Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 24:619–629CrossRefPubMed
9.
Zurück zum Zitat Lowe HJ, Hernandez PM, Weber SC (2009) STRIDE—an integrated standards-based translational research informatics platform. In: AMIA annual symposium proceedings, pp 391–395 Lowe HJ, Hernandez PM, Weber SC (2009) STRIDE—an integrated standards-based translational research informatics platform. In: AMIA annual symposium proceedings, pp 391–395
10.
Zurück zum Zitat Mackie AS, Ionescu-Ittu R, Therrien J, Pilote L, Abrahamowicz M, Marelli AJ (2009) Children and adults with congenital heart disease lost to follow-up: Who and when? Circulation 120:302–309CrossRefPubMed Mackie AS, Ionescu-Ittu R, Therrien J, Pilote L, Abrahamowicz M, Marelli AJ (2009) Children and adults with congenital heart disease lost to follow-up: Who and when? Circulation 120:302–309CrossRefPubMed
11.
Zurück zum Zitat Marelli AJ (2012) The future of ACHD care symposium: changing demographics of congenital heart disease. Prog Pediatr Cardiol 34:85–90CrossRef Marelli AJ (2012) The future of ACHD care symposium: changing demographics of congenital heart disease. Prog Pediatr Cardiol 34:85–90CrossRef
12.
Zurück zum Zitat Moons P, Hilderson D, Van Deyk K (2008) Implementation of transition programs can prevent another lost generation of patients with congenital heart disease. Eur J Cardiovasc Nurs 7:259–263CrossRefPubMed Moons P, Hilderson D, Van Deyk K (2008) Implementation of transition programs can prevent another lost generation of patients with congenital heart disease. Eur J Cardiovasc Nurs 7:259–263CrossRefPubMed
13.
Zurück zum Zitat Mylotte D, Pilote L, Ionescu-Ittu R, Abrahamowicz M, Khairy P, Therrien J, Mackie AS, Marelli A (2014) Specialized adult congenital heart disease care: the impact of policy on mortality. Circulation 129:1804–1812CrossRefPubMed Mylotte D, Pilote L, Ionescu-Ittu R, Abrahamowicz M, Khairy P, Therrien J, Mackie AS, Marelli A (2014) Specialized adult congenital heart disease care: the impact of policy on mortality. Circulation 129:1804–1812CrossRefPubMed
14.
Zurück zum Zitat Norris MD, Webb GD, Drotar D, Lisec A, Pratt J, King E, Akanbi F, Marino BS (2013) Prevalence and patterns of retention in cardiac care in young adults with congenital heart disease. J Pediatr 163:902–904CrossRefPubMed Norris MD, Webb GD, Drotar D, Lisec A, Pratt J, King E, Akanbi F, Marino BS (2013) Prevalence and patterns of retention in cardiac care in young adults with congenital heart disease. J Pediatr 163:902–904CrossRefPubMed
15.
Zurück zum Zitat Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Siu SC, Webb GD (2004) Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 113:e197–e205CrossRefPubMed Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Siu SC, Webb GD (2004) Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 113:e197–e205CrossRefPubMed
16.
Zurück zum Zitat Sable C, Foster E, Uzark K, Bjornsen K, Canobbio MM, Connolly HM, Graham TP, Gurvitz MZ, Kovacs A, Meadows AK, Reid GJ, Reiss JG, Rosenbaum KN, Sagerman PJ, Saidi A, Schonberg R, Shah S, Tong E, Williams RG (2011) 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 123:1454–1485CrossRefPubMed Sable C, Foster E, Uzark K, Bjornsen K, Canobbio MM, Connolly HM, Graham TP, Gurvitz MZ, Kovacs A, Meadows AK, Reid GJ, Reiss JG, Rosenbaum KN, Sagerman PJ, Saidi A, Schonberg R, Shah S, Tong E, Williams RG (2011) 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 123:1454–1485CrossRefPubMed
17.
Zurück zum Zitat Wacker A, Kaemmerer H, Hollweck R, Hauser M, Deutsch MA, Brodherr-Heberlein S, Eicken A, Hess J (2005) Outcome of operated and unoperated adults with congenital cardiac disease lost to follow-up for more than five years. Am J Cardiol 95:776–779CrossRefPubMed Wacker A, Kaemmerer H, Hollweck R, Hauser M, Deutsch MA, Brodherr-Heberlein S, Eicken A, Hess J (2005) Outcome of operated and unoperated adults with congenital cardiac disease lost to follow-up for more than five years. Am J Cardiol 95:776–779CrossRefPubMed
18.
Zurück zum Zitat Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, del Nido P, Fasules JW, Graham TP, Hijazi ZM, Hunt SA, King ME, Landzberg MJ, Miner PD, Radford MJ, Walsh EP, Webb GD (2008) 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 (Writing Committee to develop Guidelines on the Management of Adults with Congenital Heart Disease). Developed in Collaboration With the American Society of Echocardiography, Heart Rythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of thoracic Surgeons. Circulation 118:714–833CrossRef Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, del Nido P, Fasules JW, Graham TP, Hijazi ZM, Hunt SA, King ME, Landzberg MJ, Miner PD, Radford MJ, Walsh EP, Webb GD (2008) 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 (Writing Committee to develop Guidelines on the Management of Adults with Congenital Heart Disease). Developed in Collaboration With the American Society of Echocardiography, Heart Rythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of thoracic Surgeons. Circulation 118:714–833CrossRef
19.
Zurück zum Zitat Yeung E, Kay J, Roosevelt GE, Brandon M, Yetman AT (2008) Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 125:62–65CrossRefPubMed Yeung E, Kay J, Roosevelt GE, Brandon M, Yetman AT (2008) Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 125:62–65CrossRefPubMed
Metadaten
Titel
Provision of Transition Education and Referral Patterns from Pediatric Cardiology to Adult Cardiac Care
verfasst von
Anna L. Harbison
Stafford Grady Jr.
Kevin Chi
Susan M. Fernandes
Publikationsdatum
01.02.2016
Verlag
Springer US
Erschienen in
Pediatric Cardiology / Ausgabe 2/2016
Print ISSN: 0172-0643
Elektronische ISSN: 1432-1971
DOI
https://doi.org/10.1007/s00246-015-1267-5

Weitere Artikel der Ausgabe 2/2016

Pediatric Cardiology 2/2016 Zur Ausgabe

Update Kardiologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.