Transitioning the Adolescent with Congenital Heart Disease: The Quest to Improve Long-Term Care
ACC/WCC Virtual Conference, the 69th annual scientific session, emphasized the needs of patients with adult congenital heart disease (ACHD), especially the importance of a streamlined transition of care from the pediatric to adult medical team.1 In 2008, the ACC/American Heart Association (AHA) document for the management of ACHD, including guidelines for successful transition of care, was published.2 In 2011, best practices in managing transition of adolescents with CHD to adulthood was published by the AHA.3 Today, despite over two decades of national efforts, there are still unmet needs for this high-risk population.
Disparities in the medical care of the growing CHD adolescent population exist, including (1) poor transition from child-centered to adult-centered healthcare (an age and developmentally dependent process that addresses medical, psychosocial and educational/vocational aspects)4,5 and (2) lack of appropriate transfer of care (the point at which an ACHD provider assumes the medical care of a patient).3,6,7 This is concerning as many patients drop out of active health care during this time, and lapses in care appear to be predictors for morbidity and poor outcomes,8 particularly for minority populations.3,9
Current Data and Review of Evidence for CHD Transition
A 2015 review highlighted that transition to adult services should begin in early adolescence, using a formal educational program for both medical providers and parents regarding their changing role. A formal referral to an ACHD cardiologist is essential at this point.10
In 2016, a Cochrane review revealed four small randomized control studies covering a limited range of interventions and clinical conditions with a < 12-month follow-up to determine effectiveness of interventions to improve transition and transfer of care for adolescents. For the one study specific to CHD, while there were positive outcomes in the patients' knowledge of their condition, it was impossible to elicit long-term effectiveness or study reproducibility in other contexts. Additionally the study did not find any improvement in the participants' transition-readiness scores, which may indicate that simply increasing disease knowledge is insufficient to improve their readiness for transition.10
In 2017, a review of US transition and transfer of care processes noted that the development of ideal transition programs may not be feasible in the current healthcare environment.11 Little data examining disease-specific clinical outcomes of formal transition and transfer programs exists, making it hard to determine which strategies work best.11
In 2018, a systematic review of qualitative studies found that up to 53% of the young adults are not successfully transferred to an adult CHD center. It was recommended that transition programs need to be individualized, age and developmentally adapted, and must involve introductions to ACHD physicians.12
Models of CHD Transition Education Program Interventions
Around the time of the publication of the ACC/AHA 2008 guidelines, it was noted that implementation of transition programs could prevent a lost generation of patients with CHD. Several studies describe these programs, but only the three recent studies noted below evaluated CHD educational interventions with differing models of delivery.
In 2017, a study compared an educational transition program in France, randomizing 115 adolescents with CHD to receive a one-time nursing education program and compared them to a group without the intervention.13 A higher patient academic attainment and structured education were found to be significant determinants of health-related knowledge. They noted that though the intervention group obtained higher scores than the comparison group, total scores were only increased by 36%, suggesting that repeated interventions may be necessary.
In 2017, another study conducted in the US looked at the effect of a transition clinic that was not associated with a cardiology clinic visit. This was conducted by a nurse care manager, social worker and an ACHD physician.14 They found that only 39% of patients successfully transferred from pediatric to adult services during the study period. However, those with severe CHD and cardiac implantable electronic devices had a statistically significant rate of successful transfer of care.
In 2018, a Canadian study conducted a randomized control trial for transitioning adolescents with CHD.15 The intervention group, consisting of half of the participants, received two 1-hour individualized nurse education sessions. Eighteen months later, intervention participants were three times more likely to have an ACHD follow up appointment and had higher knowledge and transition readiness scores.
There are other patient centered CHD educational interventions being trialed.16 However, as there are different healthcare models across the globe, determining successful individual program components is crucial as resources and delivery methods may vary.17 Understanding ways to retain patients in care throughout the transition period18 and addressing their psychosocial needs throughout the process is of utmost importance to their long-term wellbeing.19
Transition and Transfer Guidelines and Program Recommendation
Despite the number of published transition guidelines, adoption of these recommendations still appears limited.
The 2011 AHA scientific statement on best practices for the transition process of adolescents with CHD note that a medical home, healthcare financing, adult provider education and communication between families and healthcare providers were paramount to the successful transition and transfer.3
In February 2018, the ACC Adult Congenital and Pediatric Cardiology (ACPC) quality workgroup developed CHD Young Adult Transition and Transfer Policy Quality Metrics for use in institutional programs.20 Other guidelines for building institutional CHD transition programs and strategies have also been described in the US21 and Canada.22
The 2018 report from the American Academy of Pediatrics provides new practice-based quality improvement guidance on six key elements of transition, packaged into three versions: pediatric, adult and other practitioners.23 For pediatrics, these include (1) a transition policy, (2) tracking and monitoring, (3) readiness assessment, (4) transition planning (including patient education to fill the gaps in knowledge identified by the readiness assessment), (5) transfer of care, and (6) transfer completion. A major update to the ACC/AHA 2008 guidelines for the management of ACHD with transition action items was published in 2018.24 Finally, the Adult Congenital Heart Association (ACHA) has instituted accreditation for US ACHD programs. Having a transition program in place is one of the criteria to be met.25
Tools and Technology
The ACC ACPC Section developed transition tools to provide resources for CHD specialists, families and young adults.26 Additionally, the ON TRAC and the American College of Physicians (ACP) both have created CHD specific tools for transition.27,28
The Cochrane review from 2016 suggested that interventions that use technology may have a beneficial effect on participants' self-efficacy and confidence in managing their own health and health care. There are several websites that have been developed to assist in the transition process for various chronic diseases,29 including one specifically for CHD.30 A systematic review and meta-analysis of technology-based tools to support teens with chronic disease was published in 2019.31 The adolescents were receptive to receiving medical information electronically, but due to lack of intervention efficacy trials, no meaningful conclusion could be drawn. A CHD mobile transition app is currently in the usability and testing phase of development.32
There are extensive opportunities to implement CHD transition guidelines and tools and develop coordinated and innovative transition and transfer processes for CHD patients. Considering implementation of technology into the transition process, transition program design and evaluation, reducing structural and institutional barriers to providing care, and advocating for improved reimbursement for transition programs are all critical to the success of transition efforts in CHD.11
- Webb GD, Williams RG. Care of the adult with congenital heart disease. J Am Coll Cardiol 2001;37:1162–5.
- 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. J Am Coll Cardiol 2008;52:e143-e263.
- 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;123:1454–85.
- Skorton DJ, Garson AJr, et al. Task force 5: adults with congenital heart disease: access to care. J Am Coll Cardiol 2001;37:1193–8.
- Hersh AO, Pang S, Curran ML, Milojevic DS, von Scheven E. The challenges of transferring chronic illness patients to adult care: reflections from pediatric and adult rheumatology at a US academic center. Pediatr Rheumatol Online J 2009;7:13.
- Connolly D, Rutkowski M, Auslender M, Artman M. Measuring health-related quality of life in children with heart disease. Appl Nurs Res 2002;15:74–80.
- Yang H-L, Chen Y-C, Wang J-K, Gau B-S, Moons P. An evaluation of disease knowledge in dyads of parents and their adolescent children with congenital heart disease. J Cardiovasc Nurs 2013;28:541–9.
- 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;125:62–5.
- Lotstein DS, Inkelas M, Hays RD, Halfon N, Brook R. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health 2008;43:23–9.
- Campbell F, Biggs K, Aldiss SK, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database of Syst Rev 2016;4:CD009794.
- Everitt IK, Gerardin JF, Rodriguez FH III, Book WM. Improving the quality of transition and transfer of care in young adults with congenital heart disease. Congenit Heart Dis 2017;12:242–50.
- Chong LSH, Fitzgerald DA, Craig JC, et al. Children's experiences of congenital heart disease: a systematic review of qualitative studies. Eur J Pediatr 2018;177:319-36.
- Ladouceur M, Calderon J, Traore M, et al. Educational needs of adolescents with congenital heart disease: impact of a transition intervention programme. Arch Cardiovasc Dis 2017;110:317–24.
- Vaikunth SS, Williams RG, Uzunyan MY, Tun H, Barton C, Chang PM. Short-term outcomes following implementation of a dedicated young adult congenital heart disease transition program. Congenit Heart Dis 2017;13:85–91.
- Mackie AS, Rempel GR, Kovacs AH, et al. Transition intervention for adolescents with congenital heart disease. J Am Coll Cardiol 2018;71:1768–77.
- Acuña Mora M, Sparud-Lundin C, Bratt E-L, Moons P. Person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood: a study protocol for a hybrid randomised controlled trial (STEPSTONES project). BMJ Open 2017;7:e014593.
- Landzberg MJ, Gurvitz M. Transition Education. J Am Coll Cardiol 2018;71:1778–80.
- Bohun CM, Woods P, Winter C, et al. Challenges of intra-institutional transfer of care from paediatric to adult congenital cardiology: the need for retention as well as transition. Cardiol Young 2016;26:327–33.
- Kovacs AH, Utens EM. More than just the heart: transition and psychosocial issues in adult congenital heart disease. Cardiol Clin 2015;33:625–34.
- ACPC Develops CHD Young Adult Transition and Transfer Policy Quality Metrics (ACC website). 2018. Available at: https://www.acc.org/membership/sections-and-councils/adult-congenital-and-pediatric-cardiology-section/section-updates/2018/02/09/16/26/acpc-develops-chd-young-adult-transition-and-transfer-policy-quality-metrics. Accessed 01/20/2019.
- Saidi A, Kovacs AH. Developing a transition program from pediatric- to adult-focused cardiology care: practical considerations. Congenit Heart Dis 2009;4:204–15.
- Kovacs AH, Cullen-Dean G, Aiello S, et al. The Toronto congenital heart disease transition task force. Progress in Pediatric Cardiology 2012;34:21–6.
- White PH, Cooley WC, Transitions Clinical Report Authoring Group, American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2018;143:e20183610.
- Stout KK, Daniels CJ, Aboulhosn JA, et al. 2018 AHA/ACC guideline for the management of adults with congenital heart disease. J Am Coll Cardiol 2019;73:e81-e192.
- ACHA ACHD Accreditation Program (ACHA website). 2017. Available at: https://www.achaheart.org/provider-support/accreditation-program/. Accessed 01/22/2019.
- ACC Releases CHD Transition Tools (ACC website). 2016. Available at: https://www.acc.org/membership/sections-and-councils/adult-congenital-and-pediatric-cardiology-section/section-updates/2016/07/21/16/34/acc-releases-chd-transition-tools. Accessed 01/22/2019.
- Transition to Adult Care (BC Children's Hospital website). 2019. Available at: http://www.bcchildrens.ca/health-professionals/clinical-resources/transition-to-adult-care. Accessed 01/22/2019.
- Pediatric to Adult Care Transitions Initiative (ACP website). 2019. Available at: https://www.acponline.org/clinical-information/high-value-care/resources-for-clinicians/pediatric-to-adult-care-transitions-initiative. Accessed 01/22/2019.
- Got Transition (got transition website). 2018. Available at: http://www.gottransition.org/. Accessed 01/22/2019.
- I Heart Change (iheartchange website). 2019. Available at: https://iheartchange.org/. Accessed 01/22/2019.
- Low JK, Manias E. Use of technology-based tools to support adolescents and young adults with chronic disease: systematic review and meta-analysis. JMIR Mhealth Uhealth 2019;7:e12042.
- Lopez KN, O'Connor M, King J, et al. Improving transitions of care for young adults with congenital heart disease: mobile app development using formative research. JMIR Formativ Res 2018;2:e16.
Clinical Topics: Congenital Heart Disease and Pediatric Cardiology, Congenital Heart Disease, CHD and Pediatrics and Quality Improvement
Keywords: Heart Defects, Congenital, Pediatrics, American Heart Association, acc20, ACC Annual Scientific Session, Self Efficacy, Quality Improvement, Transition to Adult Care, Benchmarking, Follow-Up Studies, Healthcare Financing, Patient Transfer, Reproducibility of Results
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