A United Kingdom inflammatory bowel disease database: Making the effort worthwhile☆
Received 24 September 2009; received in revised form 17 December 2009; accepted 7 January 2010. published online 22 February 2010. Corrected Proof
Abstract
Background
Inflammatory bowel disease (IBD), a paradigm of chronic illness, requires for its safe clinical management ready access to complete information, not always possible using paper records.
Aim
To develop an IBD database (DB) for both individual patient management and collating information across centres.
Methods
Access® based, with a minimum dataset.
Results
Prospectively collected data for 11,432 patients from 21 centres.
Profile Diagnosis
Ulcerative colitis (UC) 56%, Crohn's disease (CD) 40%, indeterminate colitis 4%. M:F ratio: UC 1.08:1, CD 0.72:1. Median age at diagnosis: UC 39, CD 30years. Operated: UC 16%, CD 47%. Thiopurine use: UC 16%, CD 29%. IBD related mortality: 0.74%.
Discussion
A snapshot of this large IBD cohort shows the disease profile across the UK is similar to other large series. Unexpected gaps, sometimes large emerged (e.g. data on smoking and immunosuppression) highlighting the need for clear definition, consistency and completeness of data collection. Clinical management is made easier by the ‘at a glance’ summary, automated clinic letters, and facility for monitoring and audit, but the time required limited its ‘real-time’ use.
Conclusion
Our experience shows it is possible to collect data from centres across the country which truly reflects clinical practice. We have learned as much from the process itself as from the data, principally, information needs to be well defined, validated at entry, and updated at every visit, a time consuming sequence which we had underestimated. Our lessons learned may help inform the development of a national database, and support national IBD standards and audit.
ABSTRACT
years. Operated: UC 16%, CD 47%. Thiopurine use: UC 16%, CD 29%. IBD related mortality: 0.74%.