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N001. Development of inflammatory bowel disease information service

S. Hope, K. Greenwell, J. Murphy, S. Corbett, R. Forster

Northumbria Healthcare NHS Foundation Trust, North Shields, United Kingdom

Background: In 2009 the UK Inflammatory Bowel Disease (IBD) standards group published Quality Care: Service Standards which emphasised the important role of patient education and support. People with IBD have a greater chance of achieving a better quality of life, by managing their illness more effectively, if they are well-informed about their illness. In May 2009 Northumbria Healthcare NHS Foundation Trust received a research grant to evaluate and develop an information service for people living with IBD (this includes patients and their family and friends).

Aims: To use an action research approach to develop, implement and evaluate systems to prescribe, dispense and record information for people living with IBD.

Materials and Methods:

  • A multidisciplinary IBD Working Group was set up comprising Gastroenterology Medical and Nursing Staff, a pharmacist and members of the research team.
  • Two patient consultation events were held to find patients' views about information.
  • Surveys and interviews were conducted with relevant health professionals to explore their views on current information provision and any barriers they perceived to providing information.
  • Data from the patient focus groups, health professional surveys and interviews were analysed using an interpretive action research method. Findings were feedback to the working groups to inform service design.

Results: Four main themes were identified:

  1. Patients did not know what to ask in the consultation and were concerned about wasting health professional time.
  2. Patients were confused about the different sources of information on the internet, especially early on during and following diagnosis.
  3. Medical staff relied heavily on the IBD Nurse Specialist to provide information to patients.
  4. Both medical and nursing staff felt there was a lack of availability of information resources, both on the wards and in clinic.

The development of the IBD information service provides systematic and auditable information provision to patients:

  • Current information resources were reviewed by the working group and submitted for inclusion on the Trusts' Patient Information System.
  • The full range of up-to-date ratified information is readily available and visible for patients and clinicians, through the information menu.
  • All health professionals are now equally responsible for the provision of information.
  • The presence of an Information Specialist in the clinical setting means there is more time for the health professional to spend on verbal explanations.
  • The development of the IBD Information Service has highlighted gaps in information provision which have been addressed.
  • IBD Information Prescriptions and the Information menu was developed to prescribe, dispense and record information utilising the results of this analysis in collaboration with the working group, and is currently being trialled.

Conclusion: Based on consultation with patients and Health Professionals, we have developed an Information Service tailored to the needs of this population. Next steps include piloting and carrying out a process and outcome evaluation of this service.