1. INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS' ORGANISATIONS “ROADMAP” Richard Driscoll Helen Terry (Chief Executive) (Director of Information and Support) Brussels 18 October 2012 Hotel Métropole EVENT ORGANIZED BY EFCCA

2. ): INTRODUCTION INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP Crohn’s and Colitis UK Membership of 30,000 Helplines for information and support Publications Personal Grants Local Groups Campaigning for better services Raising awareness Research

3. ): RESEARCH STRATEGY INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP  Grants from our Research Fund –  Medical  Living with IBD  Better Health Services  Grants for 1-4 years  Major projects – up to £120,000  Co-funding of fellowships  Pilot projects – proof of concept enabling applications for other funding

4. ): RESEARCH STRATEGY (2) INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP  Grants from our Research Fund –  Medical  Living with IBD  Better Health Services  Leading research – Lottery grant of £500,000 for Fatigue and IBD with 3 research centres  Influencing research – patients involved on Research Project Steering Groups  Access to our members

5. ): RESEARCH FUNDING INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP  5 years: 2008-2012  Medical – 19 grants / £1,234,000  Living with IBD – 13 grants / £1,008,000  Better Health Services – 2 grants / £75,000  Total funding – 34 grants / £2,317,000

6. ): AWARDS PROCESS INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP  Better Health Service Research is commissioned.  Medical and Living with IBD - applications are invited annually  Medical Awards Panel – 8 Doctors and scientists, 4 IBD patients  Living with IBD Awards Panel – 3 Doctors and nurses, 3 social science academics 3 IBD patients  Crohn’s and Colitis UK is Government accredited = extra research funding for hospitals

7. ): MEDICAL AWARDS INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP  Medical research awards include Genetics of IBD Immune system Bacteria Diet Environmental factors Epidemiology Treatments Investigations

8. ): ONE MEDICAL AWARD INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP UK IBD Genetics Consortium Study of anti-TNF pharmacogenomics and IBD genetics in the UK South Asian population. 18 Month Project (2012 – 2013) £30,000

9. AIMS OF RESEARCH INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP 1.Begin to translate recent genetic discoveries into improved use of existing therapies. 2.Bring more hospitals into the process of capturing genetic samples and data and increase the clinical resources available for this work. 3.Gather genetic data on an additional 5,000 patients not previously studied with a special focus on the UK South Asian population patients on anti-TNF therapies

10. ``EXPECTED OUTCOMES ) INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP By comparing the genetic profile of the South Asian patients with those of European origin to see the similarities and differences in genes and how these relate to the clinical picture of IBD. Where regions of the genome show increased risk of IBD in both groups, this could help to pinpoint the causal genetic variants in both populations. To define genetic markers which predict response to or toxicity from these key therapies in Crohn’s disease.

11. ): INTRODUCTION INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP Living with IBD Research Award 2010 18 Month Project £109,173 Continence Issues in Inflammatory Bowel Disease

12. SELECTION CRITERIA ( INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP Academic meritMethodologyOriginality Value to people living with IBD Value to Crohn’s and Colitis UK Practical Output Shortlisted applicants are invited to present their proposals to the Living with IBD Research Panel, who make recommendations to the Crohn’s and Colitis UK Trustees The Panel consists of lay, academic and medical members.

13. RESEARCH TEAM INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP Continence Issues in IBD Lead Researcher Professor Christine Norton PhD, MA, RN Research Fellow Lesley Dibley MPhil, RGN Kings College London

14. AIMS OF RESEARCH INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP 1.Determine the prevalence of continence problems in IBD and identify major risk factors 2.Determine the suitability of an existing screening tool (ICIQ-B) for assessing bowel control issues in people with IBD 3.Understand the experience and concerns of people with IBD and continence-related issues 4.Understand how people with IBD-related incontinence manage this.

15. STUDY DESIGN ) INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP Two phase study: Questionnaire based on existing evidence, and incorporating recognised assessment tools Interviews explored issues in greater depth to gain an insight into experiences of living with regular faecal incontinence Quantitative (numerical) data was managed by statistician using SPSS Qualitative (text) data was sorted and analysed using a pragmatic thematic approach

16. PARTICIPANTS INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP 10,000 members were randomly selected: 3264 completed the questionnaire, 28 were interviewed Participants were over 18, had a proven diagnosis of IBD, and lived in the UK 2178 respondents were female (66.7%) Average age 50.26 yrs; range 19 – 92 years 1534 respondents had CD (46.98%) 1599 had UC (48.97%)

17. RESULTS - Prevalence INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP NeverRarelySometimesFrequently 85710881004299 26%34%31%9% 2415 members reported some experience of FI (74%)

18. RESULTS – Assessment tool INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP ICIQ-B not accurate assessment tool for bowel symptoms in IBD Not able to detect / record changeable symptoms to reflect contrast between relapse and remission New study just commenced in which we aim to modify the existing ICIQ-B, and develop a new assessment tool which is sensitive for IBD bowel symptoms

19. RESULTS – Experiences and concerns INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP Seven key themes emerged: emotional and psychological impact feelings of stigma limited lives symptoms practical coping mechanisms access to facilities fear of incontinence

20. RESULTS managing IBD-related incontinence INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP Help-seeking: Accessing help is challenging and stressful Existing continence services are rarely accessed People are unaware of available services, or avoid seeking help FI during a flare-up is ‘acceptable’ Embarrassment and taboo prevent help-seeking for FI that is unrelated to disease activity

21. : RESULTS managing IBD-related incontinence ) INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP Strategies used to manage IBD-related incontinence: - Wearing protection - Eating pattern - Stay at home - Constipating medication - Toilet behaviour - Toilet mapping - Diet (non-specific) - Diet (specific) - Nothing helps

22. CONCLUSION ( INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP Results from this study have been: published in NACC News – the quarterly newsletter of Crohn’s and Colitis UK posted on the Crohn’s and Colitis UK website presented at the AGM Two posters have been presented at ECCO 2012 Two posters accepted for the 2012 International Continence Society conference in Beijing Three papers submitted for publication (GUT, IBD Journal and Journal of Wound, Ostomy and Continence Nursing) Lesley Dibley invited to work with ECCO Nurses group on developing consensus guidelines for nursing care.