To understand healthcare professionals’ views on current physiotherapy service provision in children with congenital heart disease (CHD), how physiotherapy could be better used post-cardiac surgery and perceived barriers to service expansion.

Cross-sectional survey using a one-off self-completed online questionnaire, with open and closed questions, in June–August 2024.

Each of the 12 level 1 paediatric cardiac surgical centres in the UK National Health Service and Children’s Health Ireland.

Healthcare professionals providing clinical care to children undergoing cardiac surgery.

80 responses were obtained, with at least one response from each centre. Healthcare professionals conduct motor, developmental and functional evaluations across all age groups, with referrals to physiotherapy primarily based on physical examination (39, 87%). They expressed dissatisfaction with community physiotherapy services (64, 81%) compared with inpatient services (29, 36%), although they indicated that expanding services would positively impact patients and families. There is a lack of consensus regarding intervention frequency, duration and which patient groups should be prioritised. Respondents identified a lack of funding as the primary barrier to service expansion (76, 95%). Reported barriers for families included volume of medical appointments (69, 86%), transportation (66, 83%) and finances (62, 78%).

Healthcare professionals appreciate the positive impact physiotherapy can have on post-surgical management of children with CHD. The importance of expanding services was emphasised. However, to effectively support clinical practice, it is crucial to understand which patient groups should be prioritised and at what stage, as well as determining the optimal amount of physiotherapy that positively impacts patient outcomes.

While survival rates following neonatal surgery for congenital heart disease (CHD) have improved over the years, neurodevelopmental delays are still highly prevalent in these patients. After correcting for the CHD subtype, the severity of developmental impairment is dependent on multiple factors, including intraoperative brain injury, which is more frequent and more severe in those undergoing aortic arch repair with deep hypothermic circulatory arrest (DHCA). It is proposed that brain injury may be reduced if cooling is stopped at the point of electrocerebral inactivity (ECI) on electroencephalogram (EEG), but there is limited evidence to support this as few centres perform perioperative EEG routinely. This study aims to assess the feasibility of EEG monitoring during neonatal aortic arch repair and investigate the relationship between temperature and EEG to inform the design of a future clinical trial.

Single-centre prospective observational cohort study in a UK specialist children’s hospital, aiming to recruit 74 neonates (≤4 weeks corrected age) undergoing aortic arch repair with DHCA. EEG will be acquired at least 1–3 hours before surgery, and brain activity will be monitored continuously until 24 hours following admission to intensive care. Demographic, clinical, surgical and outcome variables will be collected. Feasibility will be measured by the number of patients recruited, data collection procedures, technically successful EEG recordings and adverse events. The main outcomes are the temperature at which ECI is achieved and its duration, EEG patterns at key perioperative steps and neurodevelopmental outcomes at 24 months postsurgery.

The study was approved by the Yorkshire and The Humber Sheffield National Health Service Research Ethics Committee (20/YH/0192) on 18 June 2020. Written informed consent will be obtained from the participant’s parent/guardian prior to surgery. Findings will be disseminated to the academic community through peer-reviewed publications and presentations at conferences. Parents/guardians will be informed of the results through a newsletter in conjunction with local charities.