Forging an easier path through graduation: Improving the patient transition from paediatric to adult critical care

Table 1 Disease phenotypes, specific conditions and potential clinical manifestations relevant to intensive care

Chronic disease phenotypes	Specific diseases	Key manifestations relevant to intensive care
Primary single organ chronic disease	Cystic fibrosis	Respiratory failure, pneumonia, pancreatitis (acute/chronic), liver failure, and distal intestinal obstruction syndrome
	Haemophilia	Life or limb threatening haemorrhage
	Congenital heart disease	Heart failure, post operative care (e.g., shunt upgrade), endocarditis, and single ventricle physiology
	Insulin dependent diabetes mellitus	Diabetic ketoacidosis and cardiovascular complications
	Organ transplantation	Organ failure and opportunistic infection
Complex disability	Cerebral palsy with neurocognitive disability: Perinatal hypoxia, traumatic brain injury, severe infections of the CNS, and neuronal migration disorders (e.g., lissencephaly)	Seizures, pneumonia, post operative monitoring respiratory support, chest wall deformity (scoliosis), abnormal bulbar tone, nutritional deficiency, intellectual disability, and polypharmacy
Rare conditions	Metabolic or mitochondrial conditions (e.g., urea cycle disorders and amino acidopathies)	Hyperammonaemia, neurological problems, metabolic acidosis, organ dysfunction, seizures, intellectual disability, and need for blood purification therapies (e.g., renal replacement therapy)
	Genetic abnormalities (e.g., Duchenne syndrome and Marfan syndrome)	Neuromuscular weakness, progressive heart or respiratory failure, and airway difficulty
	Chromosomal disorders (e.g., Down syndrome)	Pneumonia, immunodeficiency, congenital heart disease, cervical spine instability, and intellectual disability
Technology dependence	Tracheostomy with long term ventilation (e.g., cervical spine injury)	Pneumonia, respiratory failure, and home ventilation
	Long term gastric feeding tube, TPN dependence (e.g., short gut syndrome, bulbar palsy, and neurocognitive disability)	Nutritional deficiency, line related sepsis, and device malfunction

CNS: Central nervous system; TPN: Total parenteral nutrition.

Table 2 Barriers and enablers to effective hospital and intensive care transition

Barriers to effective transition	Potential enabler
Lack of knowledge relating to specific conditions and natural history	Medical letter/document summarising the condition, the key long term care components, formal transition meeting, consultation and process
Unknown medical, paediatric history/unavailable medical records	Patient “passport” - summary of care/paediatric history, current primary community clinicians, prior subspecialists, allied health clinicians. Handover process between paediatrician/intensivist to primary care clinician and emergency, ward and intensive care clinicians
No primary carer in hospital	Identify hospital and medical unit for ongoing inpatient care, transition letter with primary outpatient/video appointment introductory consultation
Uncertain acute care management	Emergency care document outlining medical condition, personalised care requirements (e.g., acute management of respiratory infection/failure), important medical record, current medications, care that works/care that doesn’t work
Inadequate facilities and hospital resources	Hospital visits to identify important facilities regarding access, locations, parking, medical supplies, establishing key contacts at hospital

Table 3 Optimising the transition from paediatric to adult oriented acute care

Key principles	Timing	Key considerations
Patient and carer centred approach	From outset	Ensure shared understanding of health-related issues and promote concept of shared responsibilities for complex decision making: Identify possible future need for ICU; where appropriate, include patients and carers in meetings where planning will occur; coordinate transition with other relevant services, e.g., educational programs; and clear outline of expectations and possible arrangements relating to carer presence at bedside during inpatient admissions
Clear outline of responsibilities	Important throughout, but especially during transition process	Best initiated by paediatric service, and appointment of key clinical lead at adult service responsible for ongoing coordination of care
Multidisciplinary	In anticipation of transition and during process of hand-over	Well-coordinated approach by all clinical team members: Specialist medical, intensivist, nursing, allied health, and family doctor
Staged	During years of mid to late adolescence in anticipation of adulthood, consider initiating engagement with adult clinicians at 14-16 years of age	Recognise transition as a process rather than an event: Possible overlapping “shared care” approach during period of transition; orientation visits to new facilities prior to first admission; and avoid admission to adult facilities until transition is complete
Documented: Relevant past history; outline of discussions regarding treatment preferences; and suggested approach to likely clinical problems	Initially developed early during patient’s life and maintained as a useful guide for unplanned emergency presentations as well as during hand-over process at transition to adult system	Must be accessible to relevant clinicians: Secure online “living” document; up to date portable, e.g., hard copy or USB with patient/carers; can include a “patient profile” of care preferences, including tailored approach to managing issues such as communication, anxiety, respiratory support, etc.; outline of consent processes; and advanced care planning
Funding and resources	Well in anticipation of transition process	Any changes in funding or availability of resources are identified and arranged prior to commencing transition process

ICU: Intensive care unit.