An exploration of the follow-up up needs of patients with inflammatory bowel disease

J Crohns Colitis. 2013 Oct;7(9):e386-95. doi: 10.1016/j.crohns.2013.03.001. Epub 2013 Mar 27.


Background and aims: The rising incidence of inflammatory bowel disease (IBD) in adults and children has implications for the lifelong burden of disease and the provision of specialist services. Patients with IBD should have access to specialist care which is delivered according to their values and needs. Few studies have examined patients' views of follow-up care. The aim of this qualitative study was to explore patients' needs, preferences and views of follow-up care.

Methods: IBD patients were selected from a gastroenterology clinic in a UK Hospital and invited to participate in interviews which focused on needs, preferences and role of follow-up, their experience of follow-up, service delivery, and other models of follow-up care.

Results: 24 patients were recruited, 18 patients had Crohn's Disease, and 6 ulcerative colitis. Median age was 48.5 years (range was 27-72 years) and median disease duration 11.5 years (range 2-40 years). Four main themes emerged: (1) experiences of current follow-up care; (2) attitudes to new models of care, including self-management, role of general practitioner, patient-initiated consultations and 'virtual' follow-up; (3) the personal value of follow-up care; and (4) the 'ideal' consultation.

Conclusion: The main finding was that patients prefer a more flexible follow-up care system. 'Virtual' care as an adjunct to patient-initiated consultations and self-management, was identified as optimal approaches to meet the patients' needs of follow-up care. New models of follow-up care could improve the patients' experience of care, offer potential cost savings with reduction in face-to-face consultations and allow targeted care to those who need it.

Keywords: Follow-up care; Framework analysis; Inflammatory bowel disease; Interviews; Qualitative.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Attitude to Health
  • Colitis, Ulcerative / psychology
  • Colitis, Ulcerative / therapy*
  • Crohn Disease / psychology
  • Crohn Disease / therapy*
  • General Practice
  • Health Services Needs and Demand*
  • Humans
  • Interviews as Topic
  • Middle Aged
  • Patient Preference* / psychology
  • Qualitative Research
  • Telemedicine