A United Kingdom inflammatory bowel disease database: making the effort worthwhile.
J Crohns Colitis
; 4(4): 405-12, 2010 Oct.
Article
in En
| MEDLINE
| ID: mdl-21122536
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%. MF ratio UC 1.081, CD 0.721. Median age at diagnosis UC 39, CD 30 years. 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.
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Inflammatory Bowel Diseases
/
Databases, Factual
Type of study:
Guideline
Limits:
Humans
Country/Region as subject:
Europa
Language:
En
Journal:
J Crohns Colitis
Journal subject:
GASTROENTEROLOGIA
Year:
2010
Document type:
Article
Affiliation country: