Objectives To use parent and patient feedback to understand how we can improve transition for young people with irritable bowel disease (IBD). The main focus was:
The confidence of the young person in regards to knowledge and management of their disease and treatments
We want to understand what works well currently and how we can improve the transition process.
Methods Telephone interviews with focused questions on transition experience was used to obtain the data. The sample contained patients with IBD that had already been transitioned from 2020 onwards. The questions that were used was derived from the ready steady go criteria (Nagra, 2015)1 and NICE guidance (NICE, 2016)2 but condensed to 11 questions for the child and 3 for the parent/guardian. Qualitative data was obtained to understand more about the transition process.
Results 10 patients and 10 carers were contacted, of those people 6 patients and 3 carers responded. 4 patients remembered transition being introduced at the age of 15–16 years old and 2 by 17–18 years. 5 patients had a face to face consultation, 1 had a telephone call due to COVID-19 restrictions. 5 could name a healthcare professional they could contact for transition support, one person who did not. All 6 were confident on their knowledge about the condition and also to be seen independently in clinic. Only 1 patient stated to not lead a healthy lifestyle but everyone understood the risks of drugs, alcohol and smoking on their health and their condition. All 6 reported a happy mood. 2 patients rated their overall experience as very good, 2 rated their experience as good and 2 rated their experience as neither good or bad.
The qualitative data reflected positive feedback from both parties. COVID restrictions was the main cause of complaint.
Conclusions Overall, this study shows an overwhelming satisfaction in the transition services offered. NICE guidance was met in providing a named service provider for all and building confidence in patients. All patients were introduced to transition much later than 13–14 years of age recommended by NICE (NICE, 2016).2 We need to start early with preparation for transition. In some cases pandemic disruptions have effected transition due to the reduced availability of face to face appointments. Coincidentally, 2 of the 4 patients who did not answer when contacted came from South Asian backgrounds, both with a longstanding history of missed appointments. A look into ethnic backgrounds and transition needs and attitudes may help improve the process for ethnic minorities.
Nagra DA. (2015). Ready, Steady, Go. Retrieved from https://www.readysteadygo.net/
NICE. (2016). Retrieved from https://www.nice.org.uk/guidance/ng43/chapter/Recommendations#transition-planning
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