Skip to main content
SpringerLink
Log in

Health Care Transition Perceptions Among Parents of Adolescents with Congenital Heart Defects in Georgia and New York

Pediatric Cardiology volume 41, pages 1220–1230 (2020)Cite this article

Abstract

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.

This is a preview of subscription content, access via your institution.

Access options

Buy single article

Instant access to the full article PDF.

USD 39.95

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Fig. 1

Data Availability

Patient data are protected and not publicly available. Surveys and methods may be shared publicly.

References

  1. 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

    Article  PubMed  Google Scholar 

  2. 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

    Article  PubMed  PubMed Central  Google Scholar 

  3. 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

    Article  PubMed  Google Scholar 

  4. 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

    PubMed  Google Scholar 

  5. 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

    Article  PubMed  Google Scholar 

  6. 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

    Article  CAS  PubMed  Google Scholar 

  7. 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

    Article  PubMed  Google Scholar 

  8. 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

    Article  PubMed  Google Scholar 

  9. 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

    Article  PubMed  Google Scholar 

  10. 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

    Article  PubMed  Google Scholar 

  11. 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

    Article  PubMed  Google Scholar 

  12. 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

    Article  Google Scholar 

  13. 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

    Article  PubMed  Google Scholar 

  14. 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

    Article  PubMed  Google Scholar 

  15. 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

    Article  PubMed  PubMed Central  Google Scholar 

  16. 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

    Article  PubMed  Google Scholar 

  17. 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

    Article  PubMed  Google Scholar 

  18. 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

    Article  PubMed  Google Scholar 

  19. 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

    Article  PubMed  PubMed Central  Google Scholar 

  20. 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

    Article  PubMed  Google Scholar 

  21. Kirk S (2008) Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev 34(5):567–575

    Article  CAS  PubMed  Google Scholar 

  22. 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

    Article  PubMed  Google Scholar 

  23. 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

    Article  PubMed  PubMed Central  Google Scholar 

  24. 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

    Article  PubMed  Google Scholar 

  25. 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

    Article  Google Scholar 

  26. 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

    Article  PubMed  Google Scholar 

  27. Higgins SS, Tong E (2003) Transitioning adolescents with congenital heart disease into adult health care. Prog Cardiovasc Nurs 18(2):93–98

    Article  PubMed  Google Scholar 

  28. Betz CL (1998) Adolescent transitions: a nursing concern. Pediatr Nurs 24(1):23–28

    CAS  PubMed  Google Scholar 

  29. 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

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  30. 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

    Article  PubMed  Google Scholar 

  31. 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

    Article  Google Scholar 

  32. 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

    Article  PubMed  Google Scholar 

  33. 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

    Article  PubMed  Google Scholar 

  34. 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

  35. 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

    Article  PubMed  PubMed Central  Google Scholar 

  36. Adult Congenital Heart Association (2020) ACHD Clinic Directory. https://www.achaheart.org/your-heart/clinic-directory/clinic-listings/. Accessed 23 Apr 2020

  37. 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

    Article  PubMed  Google Scholar 

  38. 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

    Article  Google Scholar 

  39. 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

    Article  PubMed  PubMed Central  Google Scholar 

  40. 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

    Article  PubMed  PubMed Central  Google Scholar 

  41. 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

    Article  PubMed  Google Scholar 

  42. 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

    Article  Google Scholar 

  43. 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

    Article  Google Scholar 

Download references

Funding

Centers for Disease Control and Prevention (CDC), Grant/Award Number: CDC‐RFA‐DD15‐1506.

Author information

Authors and Affiliations

  1. Rollins School of Public Health, Emory University, Atlanta, GA, USA

    Laura M. Gaydos, Cheryl Raskind-Hood & Trenton Hoffman

  2. New York State Department of Health, Albany, NY, USA

    Kristin Sommerhalter, Olushola Fapo & Alissa Van Zutphen

  3. Division of Cardiovascular Medicine and Pediatric Cardiology, Stanford School of Medicine, Stanford, CA, USA

    George Lui

  4. Division of Pediatric Cardiology, Children’s Hospital at Montefiore, Bronx, NY, USA

    Daphne Hsu

  5. University at Albany School of Public Health, Rensselaer, NY, USA

    Alissa Van Zutphen

  6. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA

    Jill Glidewell & Sherry Farr

  7. Emory University School of Medicine, Atlanta, GA, USA

    Fred H. Rodriguez III & Wendy Book

Authors
  1. Laura M. Gaydos
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Kristin Sommerhalter
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Cheryl Raskind-Hood
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Olushola Fapo
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. George Lui
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Daphne Hsu
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Alissa Van Zutphen
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Jill Glidewell
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Sherry Farr
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Fred H. Rodriguez III
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Trenton Hoffman
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Wendy Book
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Laura M. Gaydos PhD, Kristin Sommerhalter, PhD, Cheryl Raskind-Hood, MS, MPH, and Olushola Fapo, MPH. The first draft of the manuscript was written by Laura M. Gaydos PhD, Kristin Sommerhalter, PhD, Cheryl Raskind-Hood, MS, MPH, and Olushola Fapo, MPH. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Laura M. Gaydos.

Ethics declarations

Conflict of interest

The authors declare that they have no conflicts of interest.

Ethics Approval

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

Informed consent was obtained from all individual participants included in the study.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 72 kb)

Rights and permissions

Reprints and Permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00246-020-02378-z

Keywords

search

Navigation