Supporting young people to follow their treatment plans

What this research looked at 

Young people with Crohn’s or Colitis can sometimes find it difficult to follow the treatment plans recommended by their IBD teams. This can mean that their condition is not well-controlled. They may have more unplanned hospital stays and poorer health outcomes.   

Young people may be advised to take medicines as prescribed, change their diet, monitor symptoms and go to appointments. This comes at an already demanding time of life. And every young person will have their own individual barriers, which affect how they follow treatment plans.

These can include:  

• Practical barriers, such as forgetting to take medicine.
• Perceptual barriers, such as feeling well so the medicine is not needed.

Adult health behaviours are often formed in adolescence as young people move from childhood to becoming young adults. Dr Gemma Heath and her research team aim to positively influence health behaviours in young people with Crohn’s and Colitis.

What the researchers found

The researchers worked with young people (aged 13-17), their parents/caregivers and healthcare professionals to understand the challenges young people have in following treatment plans. They worked together to develop a new, online, support programme called A Self-led Self-management Intervention Supporting Teens with IBD (ASSIST-IBD).

ASSIST-IBD focuses on three key areas:

• Taking medicines.
• Sharing health information.
• Following lifestyle advice on diet, physical activity, and sleep.

The programme can be tailored to the young person’s own treatment plan needs. It includes ten interactive modules which help young people to:

• Feel confident to follow their treatment plan.
• Develop skills to overcome challenges with following their treatment plan.
• Feel confident in talking to others about Crohn’s or Colitis.
• Feel more positive about the future.

The views of young people with Crohn’s or Colitis and their parents/caregivers were essential to the success of this project. Young people co-designed the look and content of the programme and came up with lots of interesting ideas to help other young people with Crohn’s or Colitis. The content is made up of short videos of young people sharing their experiences, podcasts of young people talking about ways to overcome challenges and interactive action plans and quizzes.

The research team also developed a parent/caregiver version of ASSIST-IBD. This supports parents to help their child develop self-management skills in preparation for adulthood.

Creating ASSIST-IBD is just the first step in this research. Next the researchers plan to develop ASSIST-IBD from a prototype into a web app. They’ll then carry out more research to test how effective ASSIST-IBD is in young people with Crohn’s or Colitis.

What the researchers think this could mean for people with Crohn's and Colitis

ASSIST-IBD will help young people with Crohn’s or Colitis develop the skills, motivation and confidence needed to follow their recommended treatment plans. This will support young people to become empowered lifelong managers of their condition. This has real potential to help young people with Crohn’s and Colitis live as normal a life as possible. Improving how Crohn’s or Colitis is managed in young people could lead to better condition control, improved psychological wellbeing, fewer stays in hospital, and reduced health service costs. 

Who is leading the research:  Dr Gemma Heath, Aston University/ Birmingham Children’s Hospital   
Award amount: £33,790  
Duration: 36 months   
Official title of the application: Improving treatment adherence in young people with IBD.