P197 A snap-shot survey of IBD patients’ at a tertiary centre: a focus on knowledge and willingness to self-manage

L. DYALL1, N. Kamperidis1, R. Fofaria1, V. Fenech1, T. Tyrrell1, S. Barber2, J. Shah3, S. Randall4, C. Okpeh1, N. Arebi1

1St Mark’s Hospital, Gastroenterology, Harrow, UK, 2National Institute for Health Research, Applied Research Collaborations, Northwest London, UK, 3Crohns and Colitis UK, Publications and Information Manager, London, UK, 4Patient Information Forum, Head of Strategy and Partnership, London, UK


Good quality Care in inflammatory bowel disease (IBD) includes the provision of patient-relevant information.1 Data on the level of patient understanding is lacking. We studied patients’ understanding of their IBD condition.


The IBD team and patient representatives devised a 16-item questionnaire that collected data on baseline demographics and disease-specific characteristics. Answers denoting understanding were scored positively. A sum (Q-sum) of the individual question scores was expressed as median (range).


150 patients were surveyed (49% male). Thirty-nine per cent had ulcerative colitis, 51% Crohn’s Disease and 10% IBD-unclassified. There were: 39 aged <30, 94 aged 30–60, and 15≥60.

The median (range) Qsum was 9 (1–16). Twelve per cent of patients had a Qsum of ³13. The Qsum of patients < 60 years old was 10 (2–16) compared with 7 (1–13) of the ≥60 age group (p = 0.02). Sixty-two per cent of the younger and 60% of the older group perceived themselves as well informed (p = 0.9). The Qsum scores were 12 (2–14), 10 (2–16) and 8.5 (3–14) for patients with disease duration of ≤1 year, 2–15 and ≥15 years respectively (p < 0.05). There was no difference in scores according to disease and medication type.

96% of patients in the <60 age group were willing to access online information compared with 60% in the ≥60 age group (p < 0.01). Younger patients were more confident in recognising symptoms of a flare [86%] compared with those aged ≥60 [60%] (p = 0.01), and were also more likely to understand how their condition may progress compared with older patients (66% vs. 40%, p < 0.05).

Among patients <60 years only 14% of males and 26% of females (p = 0.08) reported having enough information on fertility. Sixty-six per cent of patients on biologic drugs and 53% on non-biologic drugs considered themselves well informed (p = 0.12). Forty-six per cent of the non-biologics cohort also reported low levels of knowledge on self-management of mild flares. Seventy-six per cent of the biologics group and 87% of the non-biologics group expressed willingness for information on self-management (p = 0.1).


Older patients are less well informed, less confident in recognising symptoms of a flare, and less likely to access on-line resources. The level of knowledge inversely correlated with disease duration. This may reflect the heightened recent awareness on the inclusion of patient education in clinical care and availability of resources. There is an interest in receiving information on self-management of mild flares. Education sessions should be personalised according to patient characteristics and objective measures such as PAM score (Insignia Health), implemented to show benefits.


Panés, J. et al. Improving quality of care in inflammatory bowel disease: What changes can be made today? J Crohns Colitis. 2014;8(9):919–26