Search RHCG Website
Select your language

Young people with congenital cardiac conditions: transition and medical transfer from paediatric to adult care

exp date isn't null, but text field is


Young people with congenital cardiac conditions: transition and medical transfer from paediatric to adult care*

*Acquired heart disease, arrhythmias and inherited cardiac conditions transition lie beyond the scope of this document (Appendix 8) 

This is a joint guideline between the Royal Hospital for Children in Glasgow and the Golden Jubilee National Hospital. This document describes the current and planned pathways for Transition and Transfer for young people with congenital cardiac conditions attending the Royal Hospital for Children and transferring to adult care in Scotland. It has been developed by the Transition Steering Group including paediatric and adult congenital cardiologist and cardiac specialist nurses in these institutions. The Roles and Responsibilities of the healthcare providers are documented in Appendix 7.  


Transition: The process by which adolescents and young adults with chronic childhood illness are prepared to take charge over their lives and their health in adulthood1  

Transfer: An event or series of events through which care of adolescents and young adults with chronic physical and medical conditions is transferred from a paediatric to an adult healthcare environment.  

It is important to recognise that Transition is an ongoing process rather than a discrete event.  Transition should start well before the medical care transfer and involve the young person and caregiver, where appropriate, from the outset. Appendix 1 describes the evidence base for Transition.  

The Transition Pathway

Initiation and early phase 

  • Age 12-14 (identified from the Scottish Paediatric Cardiac Services (SPCS) database) if appropriate for current health status, emotional maturity and cognitive functioning. Provide additional educational and psychological support if needed. 
  • The concept of transition is introduced to patient and family/carers. 
  • A transition introductory letter and information regarding nurse led transition clinic are provided (Appendix 2) 

Middle stage Transition 14-16 Years  

  • Patients are identified via the SPCS database and referred to an appropriate adult care facility by their Paediatric Cardiologist 
  • Patients are offered an appointment in the Transition Nurse-led Young Person’s Clinic at RHC.  
  • The number of subsequent appointments will be individualised to the individual patient and family needs.  
  • A typical appointment is 45-60 mins long (including administration time). Opportunity should be given to see the family/carers as a unit but also to see the patient alone.  
  • A typical appointment will focus on:  
    • The patient’s understanding of their condition
    • Understanding of the nature of previous interventions 
    • The importance of specialist life-long follow-up and future interventions 
    • Medication (why they are needed, dosage and frequency) 
    • Understanding the issues around prevention of endocarditis  
    • General lifestyle issues - diet, exercise, alcohol, smoking, use of recreational drugs 
    • Education and career plans  
    • Family planning and pre-pregnancy counselling advice 

The Paediatric Cardiac Nurse Specialist conducting the clinic will complete the transition checklist (Appendix 3) and upload this to the patient’s electronic medical record on Clinical Portal.  

Late stage Transition 16+   

  • During this phase formal Transfer of medical care to the adult team occurs. 
  • Moderate and complex patients are invited to a nurse led clinic with the Adult Congenital Transition team (virtual or face-to-face). 
  • The adult nurse-led clinic builds on the concepts described above in an age appropriate manner. This includes future health care trajectory and discussion about how Adult health care is organised using shared care approach. The importance of lifelong follow-up and advice on how to access services are be included. Other topics include consent and guardianship and DVLA advice if appropriate.  The Adult Congenital Cardiac Nurse Specialists will document these consultations by dictated letter.  

Ready-Steady-Go: The Care plans will have a “Ready, Steady, Go” approach. By the time of transfer this will identify areas that are “ready to Go” and flagging areas that require more support.  

Transition Events

Patients aged 15 and over are invited to the Transition Open Day in the Golden Jubilee Hospital. These will continue to develop to ensure that needs of patients with multiple health or additional learning needs are met. A hybrid platform combining face-to-face and virtual settings, appears to be optimal. These evening educational events for patients, families and carers take place 1-2 times per year.  

Clinical conference for patients with complex needs

A minority of young patient have very particular health challenges or will be transferring their care during a period when there are active ongoing treatment decisions to be made. This includes the less than 5% patients on a clear palliative care track. The transition and transfer process will be tailored to the individual and part of this process will involve a full Clinical Case Conference jointly held between the paediatric and adult congenital teams. These meetings have the additional benefit of ensuring cross-site learning, continuity of approach and dissemination of best practice. It is a bidirectional process between the two teams. 

Other Transition resources

Patients will be encouraged to engage with specific web-based Transition resources and will be introduced to the charities supporting patients with congenital heart disease. The development of more “teen-friendly” methods of communication and care delivery constitute part of the remit of the transition team.

Transfer of medical care

The transfer of medical care process for congenital heart disease patients starts when the patient is referred by the Paediatric Cardiologist to the ACHD service. This will occur between the ages of 16 to 18 years old depending on the agreement between the family and Paediatric Cardiologist, by means of a referral letter to the SACCS Consultant Team who will ensure the patient is given the appropriate follow-up. The referral letter and clinical documentation pack will be provided to the adult team.  

For mild or simple lesions the referrals are made by the Paediatric cardiologist to the local Adult Cardiologist with Expertise in Adult Congenital Heart Disease copying the letter to the SACCS for database. In addition patients transferring from local services should be referred to the Local Cardiologist with an interest in ACHD (Appendix 5). 

Transition Referral Pack should contain a letter with a summary of past medical history and interventions, current status including medication and most relevant recent clinical investigations results. Enclosed should be Surgical Operation notes, most recent cardiac catheter, ambulatory and exercise ECGs, cardiopulmonary exercise test and cross-sectional imaging reports, where they are not easily accessible within the shared electronic patient record (Regional Portal). 

The Paediatric Cardiac Nurse Specialist leading on transition will ensure continuity of care with their SACCS counterparts. This second handover will minimise the loss to follow-up. 

Medical transfer of care for patient with non-congenital heart disease is beyond the scope of this document (Appendix 8)

There is the ongoing need to build a Scotland-wide congenital heart disease database for all patients from diagnosis through to adult care. The Intra NHS Scotland Sharing Accord for clinical information will facilitate the sharing of such information and minimise barriers to its development.  

Appendix 1: The Background and Evidence Base for Transition

The aim of a transition service is to empower the young person and provide them with the necessary skills to take over responsibility for their healthcare needs. Transition services should be designed with a family-centered approach working with all members of the family, as stakeholders, to prepare the young person for this process and for transfer. This process starts in the pediatric services at approximately 12 years of age (this may be adjusted according to the individual patient’s care requirements) and continues within the adult services long after the patient’s medical care has been transferred. In practice, this support continues until the time of physiological brain maturation at or around the age of 25 years and is sometimes described as “Emerging Adulthood”.2, 3    

Several studies have described a high proportion of patients having significant lapses in care during adolescence.6,7 Patchy provision of specialist transition and tailored adult services contributes adversely impacts on outcomes.5 This is true even for patients with complex congenital heart disease. Sub-optimal transition is associated with an increase in lost-to-follow-up rates and to poorer psychological adaptation to chronic health issues. In contrast, the establishment of transition care pathways improves continuity of care and may positively influence other outcome measures such as hospitalisation.8  

The leading principle of transition being a process starting when the patient is still well within the paediatric age group, and completing in adult services in early to mid-twenties, distinctly separate from the event of medical care transfer between paediatric and adult services, underpins the guidance document below. 

Benefits of effective transition  

The importance of an effective transition programme goes beyond simply ensuring medical continuity of care. Knowledge deficits, even in long-term clinic attendees are frequent in young people with heart disease, impacting on successful transition to adulthood.10 Delay in achieving psychosocial milestones is also common in chronic illnesses. There is, therefore, a pressing need for all patients to be empowered to understand their heart condition and make informed decisions about their future health, occupation and lifestyle. Effective transition needs to employ multiple communication modalities to conform to individual preferences, as no two young people are the same.  

The transition process has to address the evolving needs of parents, enabling them to be good advocates for their children with appropriate levels of protectiveness and support. Any discrepancies between professional and parental perspectives12, in addition to those between parent and adolescent, need to be acknowledged and sensitively negotiated. For some patients, the ability to attend clinic appointments without their parents positively affects attendance5. Promoting active involvement of the young patient during the consultation helps foster an environment of trust and enables parents to gradually withdraw from being an equal stakeholder and evolve into a more supportive role.  

Transition and Transfer Model  

A recent multi-centre study13 has demonstrated the effectiveness of a nurse-led transition programme, working in parallel with and acting in a complementary way to the medical congenital cardiac care. The primary focus of the nurse-led Transition Service is patient and family education and empowerment of a young person to gradually assume responsibility for their own healthcare decision and function in an adult environment. 

Key principles as outlined in NICE Guidelines14 

  • The transition process should have the young person’s interests at the centre and should serve to meet the needs of the individual involved 
  • Transition support must be appropriate in terms of developmental and emotional maturity, social and personal circumstances 
  • Both the young person and caregiver, where appropriate, should be involved in the planning and decisions about the transition process. The aim of this is that the young person takes responsibility for their own health and has the skills to make informed choices and decisions about their health and wellbeing both now and in the future.  National Service Framework for Children, Young people and Maternity Services (2004), Standard 415 
Appendix 2: Initiation Phase: Transition introductory letter
Appendix 3: Paediatric Nurse-Led Transition Clinic Checklist

Appendix 4: Transition Pathway: Paediatric Component

Appendix 5: Congenital heart disease patient medical care transfer pathways

Appendix 6: Categorisation of congenital heart lesions







Biventricular repairs involving conduits 

All unrepaired cyanotic lesions 

Eisenmenger Syndrome 

Double outlet ventricle 

Univentricular heart (irrespective of palliation) 

Pulmonary atresia/distal pulmonary artery stenoses 

Transposition of the great arteries 

Common arterial trunk 

Other atrio-ventricular and ventriculo-arterial connection defects 







Total and partial anomalous venous connection 

AV septal defects 

Aortic coarctation 

Ebstein anomaly 

Severe RVOT obstruction  


Moderate/severe pulmonary valve disease 

Aneurysm/rupture sinus of Valsalva 

Sinus venosus ASD 

Sub-aortic /supra-valvar aortic stenosis 

Tetralogy of Fallot 

VSD with a complicating lesion e.g. AR 








Isolated congenital aortic stenosis 

Isolated congenital mitral malformations (except parachute) 

Isolated ASD or PFO not requiring closure  

Small isolated VSD 

Mild pulmonary stenosis 


Acquired and post-intervention  

PDA post-occlusion, ASD closure without residual shunt, VSD closure without residual shunt 

Appendix 7: Roles and Responsibilities in Transition Pathway
  1. Data Manager 
    1. Collating information and selecting cohort of patients who have reached the age for commencement of transition process 
    2. Initial categorising of diagnoses in relation to severity of condition 

  2. Secretarial and Outpatient Clinic Administrative Support Staff 
    1. Sending out relevant letters regarding preparation for transition  
    2. Organising and supporting transition clinics  

  3. Paediatric Cardiologist 
    1. Assessment, diagnosis and disease severity categorisation of condition  
    2. Assess suitability for and facilitate referral to Transition nurses  
    3. Supporting the Transition nurse regarding lifestyle advice  
    4. Identify and coordinate multidisciplinary team discussions for patients with complex needs in preparation for transfer 
    5. Ongoing medical care until patient seen in the adult service  
    6. Formal written referral to the adult services for transfer of care including the appropriate documentation.  

  4. Adult Congenital Cardiologist 
    1. Triaging +/- accepting the referrals from the Paediatric Cardiologist.   
    2. Participation in multidisciplinary team discussions regarding patients with specific complex transition and transfer needs  
    3. Supporting the adult Transition Nurse Specialists  

  5. Paediatric and Adult Congenital Cardiac Nurse Specialist 
    1. Assessment for suitability for process of transition 
    2. Coordinate and deliver Transitional care through nurse led clinics 
    3. Disease and lifestyle education 
    4. Assisting the young person navigate services 
    5. Be the link between the young person and the other health professionals involved in their care 

  6. General Practitioner 
    1. Provides day to day care for medical needs 
    2. Refers to specialist services as required 
    3. Continuity of care for the young person through the transition process into adulthood 
Appendix 8: Non-congenital heart disease patients medical care transfer (should be referred to local Adult Cardiology services)

Inherited cardiovascular conditions (ICC) 

Regional ICC services should be involved in the transition of all patients with a confirmed cardiac genetic diagnosis (cardiomyopathy, arrhythmia, neuromuscular, mitochondrial, aortopathy) to ensure care is consistent within a family and reproductive options addressed 

Transition of patients who are part of the screening program for ICCs needs to be reviewed on a patient-by-patient basis, whether this is necessary and type of screening 

  • Marfan Syndrome and other connective tissue disorders should be referred to their local Adult Cardiology clinic unless they are anticipated to require an intervention in the near future – then transferred to SACCS, GJNH 
  • Inherited Cardiomyopathies – local Adult Cardiologist and/or ICC Service 
  • Inherited Arrhythmia Syndromes – local Adult Cardiologist and/or ICC Service  
  • Neuromuscular disorders: local Adult Cardiologist and/or ICC service 

Non-inherited arrhythmias 

  • SVT, VT, bradyarrhythmias: local Adult Cardiologist or local specialised Arrhythmia clinic 
  • Patients with implanted cardiac rhythm management devices (pacemakers, ICDs) also require additional separate transfer of device follow up to the regional adult device clinic; patients with ICD require special consideration   

Non-inherited cardiomyopathies 

  • Myocarditis, cardiomyopathy – local adult cardiologist or local specialised heart failure clinic 

Acquired Cardiovascular disorders 

  • Kawasaki’s disease and other vasculitis resulting in coronary artery lesions - local Adult Cardiologist 
  • Rheumatic heart disease - local Adult Cardiologist 

Pulmonary Hypertension 

  • Idiopathic Pulmonary Hypertension : Scottish Adult PHTN service (Transition led by GOSH Paediatric PAH team) 
  • Pulmonary Hypertension associated with CHD (SACCS, GJNH) 
  1. Knauth A, Verstappen A, Reiss J et al. Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin. 2006;(4):619-29, vi.
  2. Gavin L, MacKay AP, Brown K, et al. Centers for Disease Control and Prevention (CDC) Sexual and reproductive health of persons aged 10–24 years – United States, 2002–2007. MMWR Surveill Summ. 2009;58(6):1–58.
  3. Kovacs AH, McCrindle BW. So hard to say goodbye: transition from paediatric to adult cardiology care. Nat Rev Cardiol. 2014;11(1):51-62.
  4. Beresford, B (2004) ‘On the road to nowhere? Young disabled people and transition’. Child Care Health Development 2004; 30(6): 581-587
  5. Stam, H; Hartman, E.E; Deurloo, J.A, et. al. Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. Journal of Adolescent Health 2006; 39: 4-13
  6. 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(3 Pt 1):e197-205.
  7. Mackie AS, Ionescu-Ittu R, Therrien J et al. Children and adults with congenital heart disease lost to follow-up: who and when? Circulation. 2009;120(4):302-9.
  8. Holmes-Walker DJ, Llewellyn AC, Farrell K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with Type 1 diabetes aged 15-25 years. Diabet Med 2007;24(7):764-9.
  9. Lyon, M.E; Kuehl, K; McCarter, R (2006) ‘Transition to adulthood in congenital heart disease: missed adolescent milestones’. Journal of Adolescent Health 2006; 39: 121-124
  10. McDonagh, J.E; Southwood, T.R; Shaw, K.L, (2005) ‘Growing up and moving on in rheumatology: disease knowledge in a multicentre cohort of adolescents with juvenile idiopathic arthritis’. Archives of Disease in Childhood 2005; 90(suppl II):G123
  11. Last B.F; Stam, H; Onland-van Nieuwenhuizen, A.M, (2007) ‘Positive effects of a psycho-educational group intervention for children with a chronic disease: first results’. Patient Education Counsil 2007; 65(1):101-102
  12. Geenen, S.J; Powers, L.E; Sells, W (2003) ‘Understanding the role of health care providers during transition of adolescents with disabilities and special health care needs’. Journal of Adolescent Health 2003; 32: 225-233
  13. Mackie AS, Rempel GR, Kovacs AH et al. Transition Intervention for Adolescents with Congenital Heart Disease. JACC 2018;71:1768-77.
  14. NICE Guideline Transition from children’s to adult services overview (2018)
  15. National Service Framework for Children, Young people and Maternity Services (2004), Standard 4
  16. Department of Health. Transition : Moving on well (2008)
  17. Hudsmith LE, Thorne SA. Transition of care from paediatric to adult services in cardiology. Arch Dis Child 2007 92: 927-930
  18. Mora MA, 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
  19. 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
  20. Burstrom A, Ojmyr-Joelsson M, Bratt EL, et al. Adolescents with congenital heart disease and their parents: needs before transfer to adult care. J Cardiovasc Nurs 2016;31:399–404
  21. Rönning H, Arestedt K, Erik Nielsen N, et al. Development and psychometric evaluation of the knowledge scale for adults with congenitally malformed hearts. J Cardiovasc Nurs 2013;28:228–37
Editorial Information

Last reviewed: 01 March 2022

Next review: 31 March 2024

Author(s): Scottish Paediatric Cardiac Services, RHC Glasgow; Scottish Adult Congenital Cardiac Service, Golden Jubilee National Hospital; Paediatric and Adult Congenital Outreach Centres, Scotland