ABSTRACT
OBJECTIVES: Patients with paediatric inflammatory bowel disease (IBD) constitute one of the largest cohorts requiring transition from paediatric to adult services. Standardised transition care improves short and long-term patient outcomes. This study aimed to detail the current state of transition services for IBD in the United Kingdom (UK). METHODS: We performed a nationwide study to ascertain current practice, facilities and resources for children and young people with IBD. Specialist paediatric IBD centres were invited to contribute data on: timing of transition/transfer of care; transition resources available including clinics, staff and patient information; planning for future improvement. RESULTS: Twenty of 21 (95%) of invited centres responded. Over 90% of centres began the transition process below 16âyears of age and all had completed transfer to adult care at 18âyears of age. The proportion of patients in the transition process at individual centres varied from 10% to 50%.Joint clinics were held in every centre, with a mean of 12.9 clinics per year. Adult and paediatric gastroenterologists attended at all sites. Availability of additional team members was patchy across the UK, with dietetic, psychological and surgical attendance available in <50% centres. A structured transition tool was used in 75% of centres. Sexual health, contraception and pregnancy were discussed by <60% of teams. CONCLUSIONS: This study provides real-world clinical data on UK-wide transition services. These data can be used to develop a national strategy to complement current transition guidelines, focused on standardising services whilst allowing for local implementation.
Subject(s)
Colitis , Inflammatory Bowel Diseases , Transitional Care , Adolescent , Adult , Child , Female , Humans , Inflammatory Bowel Diseases/therapy , Pregnancy , United KingdomABSTRACT
BACKGROUND: The Paediatric Endoscopy Global Rating Scale (P-GRS) is a quality improvement tool used in the UK. An important aspect of this includes regular surveys on the patient and/or carer's endoscopy experience. The aim of our study was to design and implement a patient/carer experience questionnaire. METHODS: This questionnaire was designed to obtain feedback on patient and/or carer satisfaction with their endoscopy experience. Question selection was based on relevant measures in the endoscopy Global Rating Scale, with input from clinical governance, Patient Advice and Liaison Service and a hospital youth forum. This was distributed to patients and/or carers in three UK paediatric endoscopy services during six surveys between 2013 and 2018. Data were then collated and analysed on Microsoft Excel for Office 365 MSO (16.0.11901.20070). RESULTS: Overall, 830 endoscopic procedures occurred during the six survey periods. 270 questionnaires were returned. Feedback from the questionnaires were mostly positive (overall satisfaction rated 'excellent' or 'good' was seen in 87% of responses) but also identified areas of improvement, such as in managing postprocedure pain and having a separate space for adolescents for preprocedure discussions. Improvements in satisfaction scores were noted in one unit over time, particularly in preprocedure preparation (from 86% to 100%), and overall satisfaction with endoscopy experience (81%-100%). CONCLUSION: All three paediatric endoscopy services found this questionnaire useful in identifying areas needing improvement and in demonstrating compliance with measures within the P-GRS quality of patient experience domain. Further work includes exploring ways to increase response rates, as well as developing age-appropriate and electronic versions.
ABSTRACT
INTRODUCTION AND OBJECTIVES: The endoscopy Global Rating Scale (GRS) is a web-based self-assessment quality improvement (QI) tool that provides a framework for service improvement. Widespread use of the GRS in adult endoscopy services in the United Kingdom (UK) has led to a demonstrable improvement in quality. The adult GRS is not directly applicable to paediatric endoscopy services. The objective of this study is to develop and pilot a paediatric endoscopy Global Rating Scale (P-GRS) as a QI tool. METHODS: Members of the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) Endoscopy Working Group collaborated with the Joint Advisory Group on Gastrointestinal Endoscopy (JAG) to develop the P-GRS. After a period of consultation, this was piloted nationally at 9 centres and data were collected prospectively at 2 census points, May and December 2016. RESULTS: The P-GRS mirrors the adult GRS by dividing care into 4 domains and includes 19 standards with several measures that underpin the standards. Eight services completed the online P-GRS return in May 2016 and 6 in December 2016. All pilot sites identified areas that needed improvement and post-pilot reflected on the key challenges and developments. Several positive developments were reported by the pilot sites. CONCLUSIONS: The national pilot helped ensure that the P-GRS developed was relevant to the paediatric endoscopy services. The pilot demonstrated that even in the first year of engaging with this QI tool, services were starting to identify areas that needed improvement, share best practice documents, put in place QI plans, and support greater patient involvement in services.
