Introduction Despite an unprecedented explosion in information and technology and improved understanding of the aetiopathogenesis of Inflammatory bowel diseases (IBD) it remains unclear whether this has translated into a meaningful improvement in patients understanding of their disease. Less is known about South Asian patients with IBD. Our aim was to assess the understanding amongst South Asian patient’s using the validated CCKNOW questionnaire1.
Methods We conducted a prospective questionnaire-based study of 108 South Asian IBD patients at our institution. Patient demographics, first language, country of origin, educational level and disease duration were recorded. A previously validated 24-item Crohn’s and Colitis Knowledge (CCKNOW) questionnaire was used to assess IBD-specific knowledge relating to disease1.
Results Forty-three of 108 surveys sent out were returned (39.8%).
Twenty-three of the 43 patients surveyed were male (53.5%). Fifteen were born in the UK (34.8%). English was recorded as the first language in 15 (34.9%). The highest education level was high school comprehensive in 19 (44.1%), sixth-form/technical college in 5 (11.6%), university in 14 (32.6%), and postgraduate in 3 (6.98%). Fifty one percent of patients described their health to be average or below average, as opposed to good.
Both the mean and median CCKNOW score were 6.74 (Range 0–20). Mean scores related to anatomy were 1.21 (n = 5; 24.1%), aetiology 0.77 (n = 2; 38.35%), symptoms 1.55 (n = 3; 38.7%), diagnosis 0.19 (n = 1; 18.6%), treatment and related complications 1.91 (n = 7; 23.6%), surgery 0.07 (n = 1, 7%), complications 0.93 (n = 4; 23.2%), and pregnancy and fertility related questions 0.12 (n = 1; 11.6%)
Conclusion The knowledge base of South Asian IBD patients was thus deemed poor. More concerning were specific areas of deficient knowledge such as pregnancy and fertility, cancer and treatment related complications with the potential for serious consequences.
Patient education is a key determinant of clinician –patient relationship and an important outcome modifier in chronic disease. IBD teams must guide information needs of specific patient groups through well designed material to enhance knowledge and understanding of disease ultimately impacting on quality of life, treatment adherence and reduction in the use of healthcare resources
Disclosure of Interest None Declared.
Eaden JA, Abrams K, Mayberry JF. The Crohn’s and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease. Am J Gastroenterol. 1999 Dec; 94(12):3560–6.
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