OPTICAL: Optimising Paediatric Transition to Intensive Care for AduLts

MOTIVATION

Due to advances in medical care, there are a growing number of children with chronic, complex conditions. Many require admission to paediatric intensive care units (ICUs) for acute health deteriorations. There are also some teenagers who require admission to paediatric ICUs during a mental health crisis (e.g. for managing self-harm or nutritional rehabilitation).

After they turn 16, many of these teenagers and young adults (TYA) are admitted to adult ICUs who often have little knowledge of them or their families. Transition, defined as a ‘purposeful and planned process of supporting young people to move from children's to adults' services’, is well-established for chronic conditions such as congenital heart disease and cystic fibrosis, but intensive care transition has been neglected.

Lack of effective transition to adult ICU services for the vulnerable cohort of TYA with complex needs, such as those technology-dependent or with life-limiting conditions, means clinical teams are often unprepared for the first few adult ICU admissions, compromising patient care and potentially causing moral distress amongst staff. TYA and their families accessing adult ICU for the first time also face changes to consent, physical environment and visiting arrangements, compromising patient experience.

Some may have significant mental health issues associated with critical care transition, the burden and impact of which are unclear, especially as they grow into adulthood.

Recently published guidelines for ICU transition are not evidence-based due to a scarcity of evidence. Key unknowns are: the size of the population that requires transition; which teenagers will need intensive care after 16; how many teenagers admitted to paediatric ICU for a mental health crisis are later admitted to adult ICU; and how clinical care and patient experience can be improved as part of the transition.

Without this crucial evidence, development of future national guidelines, quality standards and patient-reported outcomes will be hampered. AIM

To generate the evidence base for improving the care received and patient/family experience for teenagers transitioning from paediatric to adult ICU services. OBJECTIVES (O) & METHODS (M)

O1: Determine the clinical characteristics and healthcare resource utilisation from teenage years to early adulthood of people who used intensive care as a young person (including during a mental health crisis), and how these relate to intensive care use after the age of 16.

M1 (months 10-30): Analysis of national linked datasets for patients with at least one ICU admission aged 14-15-years comprising: hospital inpatient, outpatient and A&E visits, life status and paediatric and adult ICU audit data.

O2: Understand the experience of patients, carers and health professionals of ICU transition, including any impact on mental health, barriers faced, examples of good practice and suggestions for improving support provided.

M2 (months 4-30): 1-1 semi-structured interviews with patients, carers and health professionals and online forums with patients and carers to elicit in-depth views from small samples. These will inform surveys with much larger sample size to further refine understanding of patient and clinical experience. Work will be in partnership with charities and our PPI group.

O3: Establish evidence-based potential improvements in the processes and support for transitioning to adult ICU services, targeted among patient groups as appropriate.

M3 (months 12-32): Synthesis of evidence from O1 and O2 and formal problem structuring with 5 stakeholder workshops to identify potential improvements for future evaluation. IMPACT AND DISSEMINATION

OPTICAL will provide comprehensive evidence on the population of TYA transitioning to adult ICU services and a set of potential improvements for transition. Evidence will be disseminated in the academic literature; conferences; directly to national professional societies and policy makers; and to patients and families via our partner charities.