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26 Respiratory annual review for children & young people with neuromuscular conditions and complex neurodisability: a pilot study
  1. Sairah Akbar1,
  2. Ruth Wakeman1,
  3. Caroline Davies-Jones1,
  4. Joanne Gregory1,
  5. Alexander Thomas1,
  6. Bernadette Ortega1 and
  7. Federica Trucco2
  1. 1Royal Brompton Hospital, Guys and St Thomas’ NHS Foundation Trust, London, UK
  2. 2Department of Paediatric Neuroscience, Guy’s and St Thomas’ NHS Foundation Trust and Department of Paediatric Respiratory Medicine, Royal Brompton Hospital, London, UK


Introduction Children with complex neurological and neuromuscular conditions often have respiratory involvement requiring ventilatory support and multidisciplinary expertise due to their complexity.

To ensure patients’ needs are met whilst minimising repeated hospital visits, an Annual Review (A/R) pathway was created to combine sleep study and multi-professional review within one admission.

Method Patients under our care with a scheduled in-patient sleep study were offered a full A/R as part of the pilot (August 2020-2021). Table 1 outlines investigations and reviews undertaken during A/R (tailored to the individual). The A/R team met regularly to review admissions. Continuous improvement methodology was used to assess issues and implement process changes.

Key review findings were documented and shared with other teams involved. Patients and families were invited to provide feedback prior to discharge.

Results 47 AR’s were performed for 46 patients. Mean age was 10.5 years (median of 11.9 years, range 1.3-17.6). 43% of patients were female.

33% (15/46 pts) had Spinal Muscular Atrophy (See table 2 for patient demographics)

54% of patients used nocturnal NIV, 11% using NIV for respiratory illnesses and 13% on oxygen. 19% had no respiratory support.

A/R led to management changes in 59% of patients. These included microbacterial growths on sputum and commencement of treatment, airway clearance plan alterations, NIV requirement/establishment, identification of cardiomyopathy, vitamin D and Iron supplementation.

Patients and families scored A/R’s as 9.5/10 median (8-10).

Abstract 26 Table 1

A/R Reviews and Investigations

Abstract 26 Table 2

Patient demographics

Discussion This new model of individualised respiratory multidisciplinary review ensured a range of issues were identified, and treatment adjusted to optimise respiratory management for this cohort. Patients and families appeared receptive to the process.

Further analysis is needed to determine whether A/R’s reduce the burden of travel by facilitating virtual reviews at other times.

The A/R model is being expanded for children ventilated via tracheostomy and congenital central hypoventilation syndrome.

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