INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS' ORGANISATIONS “ROADMAP” Richard Driscoll Helen Terry (Chief Executive) (Director of Information and Support) EVENT ORGANIZED BY EFCCA
Mar 31, 2015
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.