ADOPTED PROJECT: EnablExercise in Crohns: A qualitativE study to uNderstAnd the Barriers and faciLitators to physical activity and Exercise IN children and adolescents with CROHN’S disease

Principal Investigator: Dr Zoe Saynor

Co Applicants: Dr Nadeem Afzal, Dr Christopher Roberts, Professor Kelly Mackintosh, Dr Danielle Lambrick, Professor James Faulkner, Mr William Freer (PPI Contributor)

Partners: University of Portsmouth, University Hospital Southampton NHS Foundation Trust, Swansea University, University of Winchester, For Crohns (charity), Guts UK (Charity)

Duration: 12 Months

Background:

We know that people with inflammatory bowel disease (IBD), of which one of the main forms is Crohns, are at a high-risk of not meeting the physical activity recommendations for health, due to a combination of bowel and general physical symptoms (e.g. abdominal pain, diarrhoea and fatigue). Additionally, there are currently no physical activity and exercise guidelines for young people with IBD – making it difficult to advise what people should be doing. Researchers within our team have been monitoring the effects of COVID-19 and associated lockdowns on physical activity and mental health on a global scale, and saw negative impacts in both people with long-term conditions and in the wider population. However, there is currently no data to tell us how young people with e.g. Crohns have been impacted during this time. in our centre, we are seeing an increasing number of people with Crohns transitioning from paediatric to adult care with metabolic syndrome and we anticipate this will rise in response to the COVID-19 pandemic.

Objectives:

Assess the barriers to, and facilitators of, physical activity and exercise participation in young people with Crohns disease. Additionally, comparing their views to their parents/guardians and clinicians.

Design and Methods:

The proposed research will be a qualitative cross-sectional study consisting of individual semi-structured interviews with the three participant groups (in clinic for young people; videoconference for parents/guardians and clinicians). The interview schedule will be co-developed with people living with Crohns. Information from the interview will be digitally recorded, transcribed verbatim and thematically analysed. For the young people with Crohns involved in the study, we are interested in documenting their disease activity and nutritional/growth status at the time of interview so will use the Paediatric Crohns Disease Activity Index (PCDAI) to determine remission, mild activity, or moderate-to-severe activity and growth ‘weight height and BMI’ Z-scores for this.

Clinical and Scientific Impact:

Physical activity is important for both mental and physical health and is particularly important in people with a long-term condition. This work will provide important understanding of the views and experiences of young people with Crohns, their parents/guardians and clinicians surrounding physical activity and exercise. The findings from this qualitative study will provide insight as to why young people with Crohns may not undertake physical activity and exercise and will help inform the design and delivery of future appropriate physical activity and exercise programmes for this population. This information would complement our ongoing research (The ACTIVE-IBD Study), and will inform future funding applications to develop, evaluate and implement educational and interventional resources to increase the physical activity and exercise undertaken by young people living with Crohns. This funding award will help expedite our journey to the end goal of improving this provision and, ultimately, the quality of lives of people with Crohns