6821 Patient reported experiences of a tertiary post COVID service

Objectives Post COVID Syndrome is a poorly understood disorder affecting around 62,000 children and young people (CYP) in the UK.¹ Our tertiary regional CYP Post COVID service was established to provide holistic medical, rehabilitative, and psychological assessment and management for the most severely affected CYP. Here we evaluate the experience of CYP and their families who have accessed the service. Methods We requested feedback from all patients seen in our CYP Post COVID clinic via a QR code provided in person at clinic appointments and on clinical correspondence. We collected quantitative data scoring outcomes from 1–5 on a Likert scale and qualitative data on patients' experience of the service and how it could be improved. Results 18 patients and 33 parents/carers completed the survey between March 2022 – October 2023. 91% felt listened to; 90% got the consultation they needed; 82% felt the service helped them understand their difficulties and 94% felt involved in decisions about their care. Three key themes were noted: 1) Participants reported the importance of being listened to and having their concerns taken seriously: 'We were properly listened to and heard/understood by people who know how tough it's been and how much effort it took to get to the appointment.' 2) They felt input from a multidisciplinary team was beneficial: 'Having experts of different specialties in the same room and combining their experience was very helpful.' 3) They would like access to additional investigations, research and advice on medical interventions: 'It's depressing that more can't be done. Physiotherapy and pacing is helpful but doesn't really address the root cause.' More than half of those surveyed reporting accessing other resources prior to their clinic appointment including websites, leaflets and other clinical services. Several participants commented on treatments they had obtained privately. Conclusion This provides further understanding of what CYP and their families want from a Post COVID service. The value of a multidisciplinary approach, listening to patients, helping them understand their condition and involving them in decisions should not be underestimated. However many patients want further investigation and trials of/management with unlicenced novel treatments. We are increasingly performing prolonged heart rate and blood pressure monitoring to detect autonomic dysfunction which informs our diagnosis of comorbidities and management plans. We aim to improve resources on novel treatments to enable patients to make informed choices about treatments offered outside our service while continuing to advocate for CYP research in Post COVID syndrome. References Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK, Office for National Statistics (ONS), 30 March 2023