The people and projects featuring at our 2019 Patient Involvement in Research day on Saturday 7 September.
Dr Miles Parkes (Cambridge University Hospital)
IBD BioResource: Translating today's science into tomorrow's treatments.
IBD BioResource aims to assist quality Crohn’s and Colitis research and speed up patients benefit from scientific progress. Converting recent research discoveries into better ways to prevent, diagnose and treat IBD and its complications requires access to sizable and well-defined groups of patients.
We have created and are expanding a national platform of 25,000 patients with Crohn’s or colitis and are generating detailed genetic and descriptive data. This information would be available to the research community in anonymised form for analysis, and facilitate recruitment of patients for future research projects based on their genetic and clinical characteristics.
Sue Blackwell (Patient)
Stoma formation is often necessary after bowel surgery. A common complication of a stoma is a parastomal hernia (PSH).
This can have a negative impact on a patient’s quality of life, but we do not know how best to treat PSH, and which patients require surgical intervention. PROPHER will look at what happens to patients who have a parastomal hernia repair, and those that opt for watchful waiting.
PROPHER is the first hernia research study to have patient reported outcomes as a primary outcome measure. We will also be utilising novel technology to complete the patient follow up, with a system which can send questionnaires to patients using mobile, telephone and online technology.
PROPHER is also the first colorectal research study to use the Measure Yourself Medical Outcome Profile (MYMOP) which is a patient generated outcome measure questionnaire where the patient selects the outcomes that are important to them.
Dr Jennie Clough (Guy's and St Thomas' NHS Trust)
The TRIBUTE trial is investigating a new type of treatment for Crohn’s disease (CD), called regulatory T cells (Tregs) immunotherapy. Tregs are naturally produced by the immune system and have a powerful immunosuppressive action. It is thought that in patients with active CD, other immune cells in the gut are resistant to the normal controlling action of Tregs.
Treg immunotherapy is derived from each patient’s own blood cells, which are extracted and grown under strict laboratory conditions to increase their numbers and enable them to ‘home’ to the bowel. This type of treatment has been used in other conditions, including diabetes and kidney transplantation, but this is the first time it will be tested in people with CD.
The aims of the study are to ensure that Treg immunotherapy can be safely given to patients with CD and to see if Treg immunotherapy can reduce inflammation in the bowel.
Shellie Radford (RN) (The University of Nottingham)
Developing a feasibility study of non-pharmacological interventions to manage IBD fatigue.
Fatigue is an extremely common symptom amongst patients with IBD and negatively impacts quality of life. Half of the patients complain of fatigue when well and the majority complain of this symptom when their IBD flares. Apart from normal reversible causes like anaemia there is no treatment for IBD fatigue.
Through literature review and patient interviews we have shown that exercise has the potential to improve IBD fatigue and quality of life. However, to date, this has not been investigated further.
We aim to test the suitability of an exercise programme to help reduce levels of IBD fatigue. We need PPI input to help design the exercise intervention (e.g. type of exercise, frequency and duration) and elements of the overall study design. We hope this will go on to inform future research, helping to pave the way for exercise to become a commissioned NHS treatment for IBD fatigue.
Prof. Bernie Carter & Dr Ali Rouncefield-Swales (Edge Hill University)
Being Me with IBD: growing up and getting on with my life.
The study used surveys and creative interviews to find out how IBD impacted on young people's (aged 14-25yrs) friendships and mental health.
We found that young people with IBD experience feelings of depression, anxiety, and loneliness and that these feelings are linked to pain, age when diagnosed and overall self-confidence.
The longer a young person has had IBD, the more symptoms (especially embarrassing ones) they experience, the more impact it has on their social lives and friendships. Good friends help to sustain their social lives, even when their IBD is being disruptive. Some young people found it hard talking to friends about IBD.
We are using our findings to work with young people to develop an animation for young people, their friends, parents and professionals. This animation aims to help young people decide when, who, and how to tell about their IBD.
Prof. Sebastian Shaji (Hull University Teaching Hospitals NHS Trust)
GONDOMAR: GOals, Needs and outcomes Determinants Of Multimodal therapy in PeriAnal CRohn's Fistula: A multicentre prospective inception cohort study.
Perianal disease is reported to occur in up to 40% of patients with Crohn’s disease and can lead to significant levels of disease with recurrent abscesses and fistulae which impact on patients' quality of life with serious clinical and psychological consequences.
Our recent multicentre retrospective study showed there was a wide variation in how perianal Crohn’s disease was treated, and in how the outcomes and goals for treatment were evaluated. Both of these could have a potential impact on the outcomes of treatment.
Reducing the variations, improving the timeliness of treatment and multidisciplinary management are key aspirations in the recently launched UK IBD standards, all of which are extremely relevant to CD fistula patients.
This study will set up and follow up a group of patients (newly diagnosed fistula in patients already diagnosed with Crohn's, and those patients who have a fistula as their first presentation) to study the whole patient journey from diagnosis of fistula, from both the patient and healthcare professional perspective, and to validate outcome measures used to evaluate the treatment of perianal Crohn’s disease.
Mr Omar Faiz & Dr Mohammed Deputy (St Mark’s Hospital and Academic Institute)
Re-inventing the continent ileostomy.
The continent ileostomy is now a little performed procedure most often for Ulcerative Colitis. When it works it allows the patient to be appliance free and to evacuate at a time of their choosing. It is unfortunately associated with complications of a high re-operation rate and failure to maintain continence as the naturally-made valve slips.
This research at the concept stage would be to re-invent this procedure and give patients another option. It would be crucial for those in whom an ileo-anal pouch anastomosis (IPAA) is not suitable or where IPAA procedure has failed.
Dr Komal Patel (St Mark's Hospital and Academic Institute)
High performance in Inflammatory Bowel Disease surgery.
Surgery plays an important role in the treatment of inflammatory bowel disease (IBD) and can have a huge impact on patients' lives. Current evidence suggests there is variation in the delivery of services and outcomes following surgery.
One way of improving quality is by learning from the highest performers. High Performance in IBD surgery (HiPer IBD) study looks to learn from the highest performing IBD surgical centres to understand what it is these institutions do to achieve their level of performance.
We want to understand what high quality IBD surgical care looks like for patients and identify what they deem to be important for measuring high performance.
Mr Kapil Sahnan (St Mark's Hospital and Academic Institute)
Almost 40% of all patients admitted to hospital are malnourished. Nutrition is increasingly considered as clinical therapy in its own right e.g. IBD, Cancer, Type II diabetes etc. However, clinicians lack the data and mechanistic insights to leverage it.
Access to a qualified dietitian is the most important factor in determining sustained, evidence based dietary interventions. The Food4Me study identified the value of personalised approaches for changing nutritional behaviour in >1600 patients across Europe.
Not all patients with IBD have access to a dietitian which is, more often than not, due to a lack of resources. They are one of the cohorts most likely to benefit from a regular interaction with a dietitian and prepared to accept video consultations as a means of intervention.
Bionutromics aims to address this deficit with the aim to offer a face-to-face consultation with registered gastrointestinal dietitians as well as offering a service where patients can chronicle their journey with IBD.