With increasing survival trends for children and adolescents with congenital heart defects (CHD), there is a growing need to focus on transition from pediatric to adult specialty cardiac care. To better understand parental perspectives on the transition process, a survey was distributed to 451 parents of adolescents with CHD who had recent contact with the healthcare system in Georgia (GA) and New York (NY). Among respondents, 90.7% reported excellent, very good or good health-related quality of life (HRQoL) for their adolescent. While the majority of parents (77.8%) had been told by a provider about their adolescent’s need to transition to adult specialty cardiac care, most reported concerns about transitioning to adult care. Parents were most commonly concerned with replacing the strong relationship with pediatric providers (60.7%), locating an appropriate adult provider (48.7%), and accessing adult health insurance coverage (43.6%). These findings may offer insights into transition planning for adolescents with CHD.
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Moons P, Bovijn L, Budts W, Belmans A, Gewillig M (2010) Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 122(22):2264–2272
Gilboa SM, Devine OJ, Kucik JE, Oster ME, Riehle-Colarusso T, Nembhard WN, Xu P, Correa A, Jenkins K, Marelli AJ (2016) Congenital heart defects in the United States: estimating the magnitude of the affected population in 2010. Circulation 134(2):101–109
Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, Del Nido P, Fasules JW, Graham TP Jr, 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. J Am Coll Cardiol 52(23):e143–e263
Stout KK, Daniels CJ, Aboulhosn JA, Bozkurt B, Broberg CS, Colman JM, Crumb SR, Dearani JA, Fuller S, Gurvitz M, Khairy P, Landzberg MJ, Saidi A, Valente AM, Van Hare GF (2019) 2018 AHA/ACC guideline for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines. Circulation 139:e698–e800
Marelli AJ, Mackie AS, Ionescu-Ittu R, Rahme E, Pilote L (2007) Congenital heart disease in the general population: changing prevalence and age distribution. Circulation 115(2):163–172. https://doi.org/10.1161/CIRCULATIONAHA.106.627224
Blum RW, Garell D, Hodgman CM, Jorissen TW, Okinow NA, Orr DP, Slap GB (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions. J Adolesc Health 14:570–576
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 et al (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(13):1454–1485. https://doi.org/10.1161/CIR.0b013e3182107c56
Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM (2003) Transition to adult health care for adolescents and young adults with chronic conditions. J Adolesc Health 33(4):309–311
Warnes CA, Liberthson R, Danielson GK, Dore A, Harris L, Hoffman JIE, Somerville J, Williams RG, Webb GD (2001) Task Force 1: The changing profile of congenital heart disease in adult life. J Am Coll Cardiol. https://doi.org/10.1016/S0735-1097(01)01272-4
Everitt IK, Gerardin JF, Rodriguez FH 3rd, Book WM (2017) Improving the quality of transition and transfer of care in young adults with congenital heart disease. Congenit Heart Dis 12(3):242–250. https://doi.org/10.1111/chd.12463
Deanfield J, Thaulow E, Warnes C, Webb G, Kolbel F, Hoffman A, Sorenson K, Kaemmer H, Thilen U, Bink-Boelkens M, Iserin L, Daliento L, Silove E, Redington A, Vouhe P, Priori S, Alonso MA, Blanc JJ, Budaj A, Cowie M, Deckers J, Fernandez Burgos E, Lekakis J, Lindahl B, Mazzotta G, Morais J, Oto A, Smiseth O, Trappe HJ, Klein W, Blomstrom-Lundqvist C, de Backer G, Hradec J, Mazzotta G, Parkhomenko A, Presbitero P, Torbicki A et al (2003) Management of grown up congenital heart disease. Eur Heart J 24(11):1035–1084. https://doi.org/10.1016/s0195-668x(03)00131-3
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(1):182–200. https://doi.org/10.1542/peds.2011-0969
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(3 Pt 1):e197–205
Mackie A, Ionescu-Ittu R, Therrien J, Pilote L, Abrahamowicz M, Marielli A (2009) Children and adults with congenital heart disease lost to follow up: who and when? Circulation 120(4):302–309
Gurvitz M, Valente AM, Broberg C, Cook S, Stout K, Kay J, Ting J, Kuehl K, Earing M, Webb G, Houser L, Opotowsky A, Harmon A, Graham D, Khairy P, Gianola A, Verstappen A, Landzberg M et al (2013) 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 61(21):2180–2184. https://doi.org/10.1016/j.jacc.2013.02.048
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(1):62–65. https://doi.org/10.1016/j.ijcard.2007.02.023
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(4):259–263. https://doi.org/10.1016/j.ejcnurse.2008.10.001
Bohun CM, Woods P, Winter C, Mitchell J, McLarry J, Weiss J, Broberg CS (2016) Challenges of intra-institutional transfer of care from paediatric to adult congenital cardiology: the need for retention as well as transition. Cardiol Young 26(2):327–333. https://doi.org/10.1017/S1047951115000220
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(1):43–51. https://doi.org/10.3233/PRM-140269
Fernandes SM, Khairy P, Fishman L, Melvin P, O'Sullivan-Olivereira 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(23):2411–2418
Kirk S (2008) Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev 34(5):567–575
Woodward JF, Swigonski NL, Ciccarelli MR (2012) Assessing the health, functional characteristics, and health needs of youth attending a noncategorical transition support program. J Adolesc Health 51(3):272–278
Marelli A, Miller SP, Marino BS, Jefferson AL, Newburger JW (2016) Brain in congenital heart disease across the lifespan: the cumulative burden of injury. Circulation 133(20):1951–1962. https://doi.org/10.1161/CIRCULATIONAHA.115.019881
Sanz JH, Wang J, Berl MM, Armour AC, Cheng YI, Donofrio MT (2018) Executive function and psychosocial quality of life in school age children with congenital heart disease. J Pediatr 202:63–69. https://doi.org/10.1016/j.jpeds.2018.07.018
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(9):S317–S322. https://doi.org/10.1016/S0828-282X(09)70145-X
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(4):619–629. https://doi.org/10.1016/j.ccl.2006.08.010
Higgins SS, Tong E (2003) Transitioning adolescents with congenital heart disease into adult health care. Prog Cardiovasc Nurs 18(2):93–98
Betz CL (1998) Adolescent transitions: a nursing concern. Pediatr Nurs 24(1):23–28
Glidewell J, Book W, Raskind-Hood C, Hogue C, Dunn J, Gurvitz M, Ozonoff A, McGarry C, Van Zutphen A, Lui G, Downing K, Riehle-Colarusso T (2018) Population-based surveillance of congenital heart defects among adolescents and adults: surveillance methodology. Birth Defects Res 110(19):1395–1403
Harris P, Taylor R, Thielke R, Payne J, Gonzalez N, Conde J (2009) Research electronic data capture (REDCap): a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 42(2):377–381
Uzark K, Jones K, Limbers CA, Burwinkle TM, Varni JW (2008) Quality of life in children with heart disease as perceived by children and parents. Pediatrics 121(5):2006–3778
Marino BS, Shera D, Wernovsky G, Tomilson R, Aguirre A, Gallagher M, Lee A, Cho C, Stern W, Davis L, Tong E, Teitel D, Mussatto K, Ghanayem N, Gleason M, Gaynor J, Wray J, Helfaer M, Shea J (2008) The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease. Qual Life Res 17(4):613–626
Marino BS, Tomlinson RS, Wernovsky G, Drotar D, Newburger JW, Mahony L, Mussatto K, Tong E, Cohen M, Andersen C, Shera D, Khoury P, Wray J, Gaynor WJ, Helfaer MA, Kazak AE, Shea JA (2010) Validation of the pediatric cardiac quality of life inventory. Pediatrics 126:498–508
Marino BS, Cassedy A, Drotar DD. The Pediatric Cardiac Quality of Life Inventory (PCQLI): a brief user's guide. Ann & Robert H. Lurie Children's Hospital of Chicago, IL
Gerardin J, Raskind-Hood C, Rodriguez F, Hoffman T, Kalogeropoulos A, Hogue C, Book W (2019) Lost in the system? Transfer to adult congenital heart disease care: challenges and solutions. Congenit Heart Dis 14(4):541–548
Adult Congenital Heart Association (2020) ACHD Clinic Directory. https://www.achaheart.org/your-heart/clinic-directory/clinic-listings/. Accessed 23 Apr 2020
Lin C, Novak E, Rich M, Billadello J (2018) Insurance access in adults with congenital heart disease in the Affordable Care Act era. Congenit Heart Dis 13(3):384–391
Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo P, Siu S, Webb G (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(3):197–205
Gurvitz M, Valente A, Broberg C, Cook S, Stout K, Kay J, Ting J, Kuehl K, Earing M, Webb G, Houser L, Opotowsky A, Harmon A, Graham D, Khairy P, Gianola A, Verstappen A, Landsberg M et al (2013) 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 61(21):2180–2184
Downing KF, Oster ME, Farr SL (2017) Preparing adolescents with heart problems for transition to adult care, 2009–2010 National Survey of Children with Special Health Care Needs. Congenit Heart Dis 12(4):497–506. https://doi.org/10.1111/chd.12476
Ruggiero KM, Hickey PA, Leger RR, Vessey JA, Hayman LL (2018) Parental perceptions of disease-severity and health-related quality of life in school-age children with congenital heart disease. J Spec Pediatr Nurs. https://doi.org/10.1111/jspn.12204
Mozlon ES, Mullins LL, Cushing CC, Chaney JM, McNall R, Mayes S (2018) The relationship between barriers to care, caregiver distress, and child health-related quality of life in caregivers of children with cancer: a structural equation modeling approach. Child Health Care 47(1):1–15
Uzark K, Jones K, Burwinkle TM, Varni JW (2003) The Pediatric Quality of Life InventoryTM in children with heart disease. Prog Pediatr Cardiol 18(2):141–148
Centers for Disease Control and Prevention (CDC), Grant/Award Number: CDC‐RFA‐DD15‐1506.
Conflict of interest
The authors declare that they have no conflicts of interest.
The survey was approved by the institutional review boards of Emory University (EU) in Atlanta, GA and New York State Department of Health (NYSDOH). The U.S. Office of Management and Budget (OMB) approved data collection activities. The procedures used in this study adhere to the tenets of the Declaration of Helsinki.
Informed consent was obtained from all individual participants included in the study.
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Gaydos, L.M., Sommerhalter, K., Raskind-Hood, C. et al. Health Care Transition Perceptions Among Parents of Adolescents with Congenital Heart Defects in Georgia and New York. Pediatr Cardiol 41, 1220–1230 (2020). https://doi.org/10.1007/s00246-020-02378-z