Introduction Crohn's and Ulcerative Colitis (UC) are chronic diseases, often requiring lifelong treatment. They can be variable therefore accurate and useful patient information is vital. With an increasing number of sources this can be a cause of confusion for patients. As part of a service evaluation this study examined the information given to patients by doctors, other sources used, how they chose their information and their accuracy.
Methods 100/113 patients agreed to answer a short survey. Topics were: Sources of information, internet usage, checks made on information and reasons for choices. Separately an internet search was performed with three major search engines using five search terms (IBD, UC, Crohn's, Ulcerative colitis and inflammatory bowel disease). From the top 10 hits on each 22 websites that were relevant to the search term were then checked against 5 criteria for accreditation of information.
Results Of 100 patients (43 male, 57 female) with an average age of 44 (18–81). There were 47 Crohn's and 53 UC patients. 65% had suffered for over 5 years. 48% wanted more information than given in clinic and 91% had sought further information. Of those who sought further information 90% used the internet, 55% patient leaflets and 25% used books. Sources used varied with age, 78% of over 65s didn't use the internet while only 6% of under 30s doing research didn't. Leaflet use in the under 30s was 48% while being 78% in the over 65s. Using the search terms in Google, Yahoo and bing an average of 1, 1.5 and 2 sponsored advertising links were highest ranked respectively. 67% of those using the internet picked websites on their search engine ranking with 20% picking on recommendation. 40% made no checks on the information they found whereas 23% said they “read around”. Of the 22 relevant websites 7 filled 5 accreditation criteria and 6 scored 2 or less. Crohn's and Colitis UK (NACC) website scored highly for accreditation and 45% of patients used it 62% of whom had been recommended it by their doctor. However its mean search engine ranking was 7th and it only appeared in the top ten in 9/12 searches. In the free text section a number of patients commented on concerns about inaccurate information.
Conclusion The results show patient information is mainly sourced from the internet and patient leaflets. Internet information is of varying quality and search engine rankings are influenced by sponsored links directed at IBD patients as opposed to accredited sites. Data on use of the NACC website with and without recommendation show simple measures such as a health care professional taking time to advise a patient may direct them to towards better information and away from lower quality potentially misleading sites. Many patients commented that websites with unsubstantiated information caused them significant concern.
Competing interests None declared.
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