INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS' ORGANISATIONS “ROADMAP” Richard Driscoll Helen Terry (Chief Executive) (Director of Information.

INTERNATIONAL SYMPOSIUM ON IBD RESEARCH

FUNDED BY PATIENTS' ORGANISATIONS“ROADMAP”

Richard Driscoll Helen Terry (Chief Executive) (Director of Information and Support)

Brussels 18 October 2012Hotel Métropole

EVENT ORGANIZED BY EFCCA

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INTRODUCTION

INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

Crohn’s and Colitis UKMembership of 30,000Helplines for information and supportPublicationsPersonal GrantsLocal Groups Campaigning for better servicesRaising awarenessResearch

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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

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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

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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

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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

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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

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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

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

``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 causalgenetic variants in both populations.

To define genetic markers which predict response to or toxicity from these key therapies in Crohn’s disease.

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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

SELECTION CRITERIA(

INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

Academic merit Methodology Originality

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.

RESEARCH TEAM

INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

Continence Issues in IBD

Lead ResearcherProfessor Christine Norton PhD, MA, RN Research FellowLesley Dibley MPhil, RGN

Kings College London

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.

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

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%)

RESULTS - Prevalence

INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

Never Rarely Sometimes Frequently

857 1088 1004 299

26% 34% 31% 9%

2415 members reported some experience of FI (74%)

RESULTS – Assessment tool

INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

ICIQ-B not accurate assessment tool for bowel symptoms in IBDNot able to detect / record changeable symptoms to reflect contrast between relapse and remissionNew 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

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

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

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RESULTSmanaging IBD-related incontinence

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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

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.