The information needs and preferences of persons with longstanding inflammatory bowel disease

Canadian Journal of Gastroenterology, 08/17/2012

Approximately 10 years after diagnosis, only a small percentage of persons with inflammatory bowel disease (IBD) believed they received the correct amount of information about the issues they regarded as most important to have discussed at diagnosis.

Methods

  • The population-based Manitoba IBD Cohort (n=271, mean disease duration 11 years) was surveyed to assess its information needs across 23 issues, both retrospectively at the time of diagnosis and currently.

Results

  • Most participants (64%) were initially diagnosed by a gastroenterologist, or otherwise by a family physician (19%) or surgeon (12%).
  • Recalling time of diagnosis, at least 80% rated as very important information about common symptoms of IBD, possible complications, long-term prognosis, medication side effects, self management of symptoms and when to involve the doctor, yet only 10% to 36% believed they received the right amount of information about these issues.
  • Dietary guidance was also regarded as important by 80% to 89%, yet only 8% to 16% received the correct amount of information.
  • Regarding current needs, a large proportion believed it would be very helpful to have more information about long-term prognosis (66%) and diet considerations (60% to 68%).
  • The following information sources were regarded as very acceptable: medical specialist (81%); brochure (79%); family doctor (64%); and website (64%), with 51% ranking the medical specialist as the first choice.
  • In a comparison of the responses of this cohort to those of a recently diagnosed sample, there was remarkable consistency in the information needs and most desired sources of information.

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