P203 Surveying outcomes of service user experience on the effects of emotional well-being and schooling in paediatric IBD (PIBD) patients in a tertiary PIBD centre

Abstract

Abstract Background We conducted a prospective survey with our PIBD patients and parents seeking outcomes in accordance with our ICN- Improve Care Now participation goals to ‘Improve and optimize the care of children and teens with IBD in underserved and underrepresented populations by addressing healthcare disparities’. Methods We sent out a survey to our PIBD patients focusing on their overall satisfaction with the service we deliver in relation to their emotional wellbeing and schooling. We prospectively sent this to our patient cohort of 280 PIBD patients, collecting both quantitative and qualitative data. Results 76/280 patients and parents (27%) responded, of whom 60/76 (79%) completed the entire survey. Of those responders 45 (75%) were mothers speaking on the behalf of their children aged 5-12 years (n=20 patients). 4 (7%) patients completed the survey themselves, of whom 3 (75%) were aged between 12-18 years. 39 (65%) parents and patients were overall satisfied that the IBD team spoke about getting the right help and support for the child at school. Although 39 (65%) of the patients strongly agreed that we provided information and materials on IBD and support, 21 (35%) of the patients felt that we did not provide the necessary information and education to schools to support them whilst at school.30 (50%) of the overall responders to the survey did not feel that the team had discussed with them the effect IBD has on their feelings and emotions. Conclusion Our survey has highlighted the need to provide more education at diagnosis and throughout patient care. This can be achieved by providing physical education packs for schools to be given to every child at diagnosis along with our already established welcome pack. We currently ask patients and families if they would like us to contact their school with information about IBD. This is something we can potentially change, by giving all patients a letter for school at diagnosis for them to give to schools. Caring for the patient’s emotional wellbeing is essential as part of delivering a holistic approach in the care we provide. Although we do offer referral to psychology at diagnosis, this should be followed up regularly and should be included as a standard when patients seen in clinics.