Variable access to quality nutrition information regarding inflammatory bowel disease: a survey of patients and health professionals and objective examination of written information

Background: Patients with inflammatory bowel disease (IBD) report a range of nutritional and dietary problems and high-quality written information should be available on these. There is little research investigating the availability and quality of such information for patients with IBD.

Objective: This study assessed the type and quality of written information on nutrition and diet available to patients with IBD and the opinions of patients and health professionals.

Setting and participants: Seventy-two patients with IBD were recruited from a large gastroenterology outpatient centre in England. One hundred dietitians from across the United Kingdom were also recruited.

Methods: Face-to-face surveys were conducted with patients with IBD. Questions regarding the use, format and usefulness of dietary information received were probed. Dietitians were surveyed regarding written dietary information used in clinical practice. Samples of IBD-specific dietary information used across the UK were objectively assessed using two validated tools.

Main results: The majority of patients rated written information as 'good' or 'very good', with the most useful information relating to 'general diet and IBD'. Forty-nine (49%) dietitians reported gaps in written information available for patients with IBD. Fifty-three different samples of IBD-specific information sheets were returned, with widely variable objective quality ratings. Commercially produced written information scored greater than locally produced information (BMA tool, P < 0.05).

Conclusions: Patient access to high-quality, written, IBD-specific dietary information is variable. IBD-specific written nutrition information needs to be developed in accordance with validated tools to empower patients, encourage self-management and overcome nutritional implications of IBD.