P388 Asking teenagers and young adults with IBD; “what matters to you?”. A qualitative survey during the COVID-19 pandemic

King, A.(1);Speight, A.(1);

(1)Newcastle Upon Tyne NHS Trust, Gastroenterology, Newcastle Upon Tyne, United Kingdom;


Good paediatric to adult transition of IBD care is important to prevent disengagement and poor disease outcomes [1]. The aim of this study was to qualitatively measure what is important to patients before they attended a new transitional service. There may be a dichotomy between the treating healthcare workers’ priorities and teenagers’ priorities that form a barrier to effective communication. Unprepared services can result in negative consequences for those involved [2] and a greater understanding of what matters to teenagers and young adults may improve the clinicians' ability to facilitate the transition process.


We asked 75 teenagers and young adults, aged between 14 and 21, who attended a new transitional service at a tertiary IBD unit in the North of England, to complete a survey prior to their clinic review. This ‘what matters to you’ survey included 12 suggestions they could circle, with no limitations on how many many they selected, but a suggestion to choose up to 3 topics. The survey was conducted during the COVID-19 pandemic and UK national lockdown, between September 2020 and September 2021.



Inflammatory bowel disease is a condition with potentially a high morbidity from physical symptoms, and it is important not to forget this as a focus of a consultation. Medical therapies and their effects on the patient were important to 48% of responders, and the transition process should include further education on treatment options with discussions of compliance. The impact on education and schooling feature as a significant topic and should be discussed during transition. Minimising the impact on education and employment should be considered when developing transitional services. Mental health wellbeing and body image were highly significant to a smaller number of patients and remain an important consideration. Interestingly not a single responder including the COVID-19 outbreak as a concern despite universally being on biological therapy or immunomodulators. It is important to note that whilst no patients reported ‘smoking, drugs and alcohol’ as important, risk-taking behaviours are increased in this patient population [3], they need to be sensitively discussed to become apparent and may be under-represented with the methodology used. 

[1] Brooks AJ, Smith PJ, Cohen R, et al UK guideline on transition of adolescent and young persons with chronic digestive diseases from paediatric to adult care Gut 2017;66:988-1000
[2] van Rheenen, P, et al ECCO topical review on transitional care in inflammatory bowel disease. Journal of Crohn's and Colitis 2017;11,30-31
[3] Brooks A et al. Health-related behaviours in young people with inflammatory bowel disease Gut 2017;66:A153