With advancement in technology and medical care, approximately 1 in 10 paediatric patients with chronic diseases and life-threatening conditions can now survive into adulthood.1 Paediatricians caring for critically ill adults in the paediatric intensive care unit (PICU) should be aware of the potential challenges that are unique to this group of patients. We recently admitted to our PICU a patient in his 30s with chronic renal disease and respiratory failure. The patient had a complex history of end-stage renal failure due to crescentic glomerulonephritis, and previous peritoneal dialysis and cadaveric renal transplant had been unsuccessful. He had received subsequent haemodialysis under the care of the paediatric nephrology unit. He had severe skeletal deformities and multicentric carpotarsal osteolysis syndrome likely due to a heterozygous mutation in the MAFB gene.2 The patient developed respiratory failure and necessitated admission to the PICU for stabilisation.

In Hong Kong, many patients with chronic childhood illnesses receive excellent multidisciplinary care from territory-wide paediatric services. When these patients reach adulthood, the transition to adult services involves multiple stakeholders, including paediatricians, adult physicians, allied healthcare professionals, and the patient’s family, all having to work together in the patient’s best interest. This transition can involve several challenges. Firstly, paediatricians and paediatric allied health providers may be unfamiliar with adult diseases and must continue the child’s care until they are transitioned to adult services. Likewise, adult physicians are often unfamiliar with paediatric conditions with degenerative sequelae and may be reluctant to take on the risks in managing these patients. Secondly, there is a lack of comprehensive healthcare policy on this subject matter, and this can affect healthcare resource allocation and budgeting. Thirdly, there is currently no standard paediatric transitional programme or educational framework to prepare patients and their families for transition into the adult healthcare services.3 Lastly, patients and their families, who have become familiar with the paediatric approach, might have difficulty adapting to adult services or even lose confidence in their medical professionals during the transition period.

Transitional care is widely defined as ‘the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented healthcare systems’.4 An effective transition process can provide appropriate high-quality uninterrupted medical care services for the patient, and a communication platform for the main participants in the patient’s treatment to enhance the patient’s health, life outcomes, self-management, and autonomy.4 5 6 7 8 9 In contrast, a premature transition to adult-oriented therapy may lead to insufficient preparation, resulting in transition failure, non-adherence to treatment and poor engagement with healthcare services subsequently, excess morbidity, and even mortality.10 11 12 Therefore, a better management strategy for chronically ill adolescents is necessary to address the additional needs of patients in adult life.11 Data on the overall number of patients involved are scarce; however, registries of subspecialty populations provide strong evidence to support the general consensus that transitional care is a growing challenge.13 14

Transitional care of paediatric patients to adult care in Hong Kong should be easy to carry out, as the majority of these patients with chronic conditions are managed under the public healthcare system. However, paediatric transitional care services in Hong Kong are rather underdeveloped and fragmented and, in comparison with other countries, lack an agreed framework3 (Table 15 16 17 18 19 20 21 22). In Hong Kong, only limited success in transition care has been established, primarily in patients with cerebral palsy, Down syndrome, and diabetes mellitus. Notorious challenges are present for those with oncologic diseases, congenital heart diseases, chronic renal diseases on renal replacement, and inborn errors of metabolism. Transitional care for most of these other chronic conditions remains fragmented, and for solid organ transplant recipients it is even less developed.8 9 In 2010, a Hong Kong study reported that it was commonplace for paediatricians to continue seeing chronically ill adolescents well into adulthood11; sadly, this remains the case at the time of writing. In the 2010 study, the majority of adolescents (85.3%) and parents (82.5%) were willing to be transferred to adult care; however, fewer than 10% had received any transitional information.11 It is evident that the main obstacle to a successful transition is the lack of a structured transitional care programme and healthcare system, not resistance of patients and families.23

The outcomes of adult PICU patients are often overlooked in paediatric clinical studies, and there have been no local data or reports on adults admitted to a PICU. In a large report of such patients in the United States, patients aged 21 to 29 years had two-fold greater odds of PICU mortality compared with adolescent patients, after adjusting for Paediatric Index of Mortality score, sex, trauma, and having a complex chronic condition. Being aged ≥30 years was associated with a 3.5-fold greater odds of mortality.17 It is difficult to draw a general conclusion on whether a PICU or an adult intensive care unit can provide the best critical care for this group of patients. Paediatricians are more familiar with some childhood-onset chronic conditions than adult physicians; however, paediatricians may not have the expertise to optimise the care of adult-acquired conditions. Therefore, some investigators have suggested that PICUs should have plans and protocols specifically focused on this group of adult patients.17

Transitional care programmes should be tailored to the specific medical condition to ensure optimal care and outcomes. Adult congenital heart disease or cystic fibrosis, for example, are obvious candidates for the establishment of centralised, disease-specific services that would bring together specific paediatric and adult expertise for small and complex patient cohorts.24 25 Other more common conditions such as cerebral palsy, asthma or type 1 diabetes will benefit from a broader framework that can guide clinicians and patients through a successful transition from paediatric to adult care in a variety of healthcare settings. A successful transitional programme should include the following factors: (1) a structured and written policy; (2) patient and family involvement in preparation and planning; (3) adequate training for staff and sensitisation to the needs of adolescent patients; (4) continuity of care to adult service (eg, paediatricians and adult physicians should develop and implement joint recommendations on diagnosis and treatment); and (5) financial support for special healthcare service needs.1 In addition to transitional care for chronic medical conditions, psychiatric disorders, including attention deficit hyperactivity disorder or autism, should also be addressed. Developing transitional care programmes for adolescents is an important healthcare policy, as it can improve adherence to healthcare services, long-term outcomes for the patient, and better utilisation of healthcare resources.12

As survival rates improve for chronic childhood conditions, it is inevitable that some adults with rare childhood conditions, especially those with congenital heart disease, might be admitted to a PICU. The PICUs should have protocols, infrastructures, and transition pathways specifically focusing on this unique group of adults, who are ‘too old’ to be a paediatric patient, but might not be best treated in an adult intensive care unit.17 From initiating collaboration with adult physicians to developing a structured transitional care programme covering both in-patient and out-patient services, paediatricians are ultimately responsible for the clinical care and long-term outcomes of this group of adult patients, so that they are not overlooked by our healthcare system. This process should be an integral practice of humanism, humanistic medicine, and humanitarianism. The modern PICU may take on an additional role as a ‘Progressive Integrative Care Unit’.

All authors contributed to the concept or design of the study, acquisition of the data, analysis or interpretation of the data, drafting of the manuscript, and critical revision of the manuscript for important intellectual content.

All authors had full access to the data, contributed to the study, approved the final version for publication, and take responsibility for its accuracy and integrity.

As an editor of the journal, KL Hon was not involved in the peer review process. Other authors have disclosed no conflicts of interest. Other authors have no conflicts of interest to disclose.

This study received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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