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.

Nutritional problems in inflammatory bowel disease: the patient perspective.

BACKGROUND AND AIMS: Crohn's Disease (CD) and ulcerative colitis (UC) are inflammatory bowel diseases (IBD), which may result in nutrition problems that impact on patient health, nutritional status and quality of life. Subjective reports of how IBD patients experience these problems as part of their disease process, including comparisons between patient groups, or the need for tailored nutrition advice as perceived by these patients, have not been widely studied. This survey aimed to identify and explore nutritional problems that are important to CD and UC patients and to investigate their views on the IBD health services provided to help them with these. METHODS: Eighty-seven IBD patients were invited to take part in a nutrition survey using face-to-face questionnaire interviews. The survey asked about food and nutrition problems that patients have experienced, identifying which were most significant and the extent to which they had been addressed by the clinical service. RESULTS: Seventy-two IBD patients completed the evaluation (47 CD, 25 UC). Of these, 45 (62.5%) felt that food and nutrition were either 'important' or 'extremely important' in their experience of IBD, and 59 (82%) reported problems with food and nutrition. Patients with CD and UC reported similar frequencies of most nutritional problems. However, 44 (94%) CD vs. 16 (64%) UC patients reported problems with weight (p=0.002). Less than half of patients had seen a dietitian for tailored nutritional advice to address these problems. CONCLUSIONS: Nutritional problems experienced and reported by IBD patients are numerous and varied. They are considered important by patients with CD and UC, both of whom would generally value specific dietary counselling, highlighting a need for further research in this area and adequate and equal provision of services for both groups.