Assessing the impact of a web-based care package in adults with IBD
Research type
Research Study
Full title
Assessing the impact of a web-based care package in adults with inflammatory bowel disease(IBD):a continuation study
IRAS ID
166750
Contact name
John McLaughlin
Contact email
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
Inflammatory bowel disease (IBD) commonly causes symptoms of abdominal pain, diarrhoea and bleeding, with many patients requiring surgery in their lifetime. The condition can also affect other parts of the body and carries an increased risk of colorectal cancer. IBD affects teenagers and young adults, presenting at a crucial time in their lives, whilst establishing careers and raising families.
The condition varies considerably in extent and severity, but nearly all patients require long term continuous treatment. Most of the treatments prescribed suppress the immune system, requiring frequent blood monitoring. Medication doses need regular adjustment and numerous studies have demonstrated significant problems with adherence. Many of the problems faced by patients could be helped, if people were given the knowledge, skills and confidence to support managing their condition. At present there is no structured self-management programme in the UK to provide education and support.
We have developed a web-based system to help people with IBD learn more about their disease and take better care of their health. ‘My IBD Portal’ is a secure system linked to the hospital's electronic patient record (EPR) and shares with patients relevant parts of their health record. This includes clinic letters, test results, self-monitoring tools and a summary of their condition. Integrated within the site are accredited information resources, tailored to the user. The site has been designed with the direct involvement of future users, including the preferences of both patients and healthcare professionals.
A pilot study found positive results when looking at the usage, effectiveness and acceptability of the web-based system over a short 3 month period. The present study aims to assess the impact of ‘My IBD portal’ over a longer period of time (12 & 24 months), with the hope of adopting the system across the NHS in the coming years.
REC name
East of England - Cambridge South Research Ethics Committee
REC reference
14/EE/1298
Date of REC Opinion
16 Jan 2015
REC opinion
Further Information Favourable Opinion