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Journal Article
7894 Advance care planning in children with complex neurodisability – is there a plan?
2025
Overview
Why did you do this work?A proportion of children with complex neurodisability have life-limiting conditions with significant risk of respiratory deterioration requiring intensive care treatment. Advance care plans (ACP) provide the opportunity for patients, families and healthcare professionals to consider the priorities of care for the child in the event of a clinical deterioration. The aim of this project was to identify this cohort of children with complex neurodisability that have required intensive care therapy for respiratory deterioration and whether advance care plans are in place and accessible.What did you do?Patients with complex neurodisability admitted to PICU at a tertiary paediatric hospital under the paediatric respiratory team from October 2023-May 2024 were identified retrospectively. Data was gathered from the patients’ healthcare records including: age, diagnosis, respiratory cause of deterioration, whether an ACP was recorded, and the outcome following PICU admission. Furthermore, the healthcare trust introduced a new electronic patient record system (EPIC) in June 2024 and data from the ACP section of this record was gathered for each patient.What did you find?13 patients were identified with mean age 8.8 years. Underlying diagnoses included: cerebral palsy, Angelman syndrome, spina bifida, holoprosencephaly, acquired brain injury, neurogenetic disorders and mitochondrial disease. 92% (12/13) had an infective respiratory deterioration prompting PICU admission. 62% (8/13) required intubation. 38% (5/13) had been admitted to PICU on at least 5 previous occasions (range 0–10 admissions). 46% (6/13) had an ACP listed on their legacy electronic healthcare record; none were accessible on EPIC. Of those with an ACP 67% (4/6) included full resuscitation; 33% (2/6) had an identified ceiling of care. At the time of writing, 15% (2/13) have required further admission to PICU with one child deceased.What does it mean?The results suggest a need to collaborate with stakeholders including: PICU, neurodisability, respiratory, palliative care and community paediatric teams as to how planning for ACPs can be facilitated and implemented in this cohort of children. There is also clear need for existing ACPs to be transferred onto the new electronic patient record system (EPIC) which has since been completed. Due consideration should be given to highlight this issue to other trusts in the region prior to the planned migration to the EPIC system.
Publisher
BMJ Publishing Group LTD
