The adolescent health society defined transition in 1993 as a ‘Purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-orientated healthcare systems’.

In 2002, American Academy of Pediatrics published the following consensus: ‘The goal of transition in health care for young adults with special health care needs is to maximize lifelong functioning and potential through the provision of high-quality developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood’ [55]. Several reports, mainly in the transplant setting, have since been published, with worse outcomes for patients transplanted during adolescence but a decrease in 1 year mortality in renal transplant recipients as patients age from 20 to 30 years. This supports the concept that maturation and complete development occur after the age of 18 years [9]. It seems that to date the development of dedicated programs to optimize transition from pediatric to adult-centred care has mainly been driven by pediatric specialists, with currently no consensus as to how to implement or measure this, or even define what a successful outcome is. Different models of transition programs have been described and will need to be developed depending on the set up and needs of the individual centres. Pediatric teams should focus on developing strategies to overcome barriers to an adequate transition including learning difficulties, social factors, patients in care and patients with mental health problems and aim for an integrative process. With regards to congenital and rare conditions typically presenting in childhood, where adult teams might be less familiar in managing these conditions, management in specialized centres with pediatric expertize is recommended. In cardiology, for example, it is recommended for ‘grown up adults with congenital heart disease’ also known as GUCH to be followed up in specialized centres with multidisciplinary input [56].

Patients and their families should be given realistic expectations of the adult health-care systems where the patient is expected to advocate for themselves and therefore self-management skills should be included in the transition process.

Experience in the renal transplant setting demonstrated that the introduction of an integrated pediatric/young adult joint transition clinic and care pathway improved outcome over a 4-year period, with no episodes of late acute rejection or graft loss compared to 35 % graft loss in a group of patients who did not benefit from this service [28]. A transition service should aim to manage young people with a chronic condition in a comprehensive and holistic way and should include parents/caregivers whose role will change during the process as one of the main aspects of transition is shifting from caregiver-provided to parent-provided care and the self-management of one’s own illness [57]. It has been shown that incorporation and promotion of disease self-management within chronic care models have improved outcomes in conditions as asthma, diabetes mellitus and rheumatoid arthritis [58]. In this respect, it is important to use transition readiness tools to define a patient’s individual needs and for a multi-professional team to address these.

A recent small pilot study in a group of 20 liver transplant recipients whose care was coordinated by a transition coordinator showed, compared to a historic group of 14 patients, improved adherence to treatment during the year before transfer to adult services. After transfer, tacrolimus standard deviation (SD) scores remained stable in the group supported by the transition coordinator compared to the historic group where the tacrolimus SD increased, suggesting poorer adherence [59].

Ideally, the timing of the transition process should be flexible and aimed at the patient’s needs and readiness; however, in practice, lack of age-appropriate inpatient facilities or pediatric and adult setting being on different sites often means that patients over 18 years cannot be admitted to pediatric inpatient facilities, raising the importance of starting the transition process early enough. This is particularly relevant in patients with special health-care needs where the transition process becomes more complicated as the patient might not be able to advocate for their care, consent for procedures and manage an inpatient stay on an adult ward independently. In these cases, the multi-professional team should ensure a well-documented care; pathway is discussed prior to transition to adult services [60, 61].

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