2013 - ISBTS 2013 Symposium
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Posters and Exhibition
15.27 - Eight year data from the British Intestinal Failure Survey (BIFS), a registry for patients receiving long term parenteral nutrition
Presenter: Henry, Gowen, , United Kingdom
Authors: Henry Gowen1, Carla Lloyd1, John WL Puntis2
Eight year data from the British Intestinal Failure Survey (BIFS), a registry for patients receiving long term parenteral nutrition
Henry Gowen1, Carla Lloyd1, John WL Puntis2
1Birmngham Children's Hospital, Birmingham, United Kingdom; 2The General Infirmary at Leeds, Leeds, United Kingdom
The BIFS began in 2005 with the aim of determining the incidence, prevalence and outcome of paediatric intestinal failure (IF; arbitrarily defined as parenteral nutrition dependence >28 days). The objective was to quantify the workload represented by caring for these patients, including the demand for small bowel transplantation (SBTx), in order to inform service planning.
Methods
Children with IF aged <18y at commencement of PN were eligible for inclusion. Written consent was a requirement of the study; progress of each registered patient was followed up every six months by contact with the relevant clinical team. A separate comprehensive point prevalence survey involving all participating centres was successfully conducted in November 2012. Barriers to complete IF case ascertainment were regularly discussed with clinicians at national meetings.
Results
Over 8 years 662 patients have been recruited:
|
Diagnosis
|
Short Bowel Syndrome
|
Disorder of Motility
|
Enteropathy
|
Other
|
|
n
(m:f)
|
413
(236:177)
|
75
(42:33)
|
61
(33:28)
|
113
(70:43)
|
|
Median age of first PN (range)
|
4 days
(0 days - 17 yr)
|
6 months
(1 days - 16 yr)
|
5 months
(0 days - 18 yr)
|
2.2 years
(0 days - 17 yr)
|
Follow up data is available for 583/662 subjects (88%), while 31 have not yet reached 6 months of PN. Comparison with the point prevalence survey suggests that only 30% of eligible children have actually been recruited. 53 patients have been assessed for SBTx and 24 transplanted. The main barrier to recruitment appears to have been time constraints for busy clinicians frustrating face to face meeting with parents to obtain consent.
Conclusions
The BIFS has been important in generating information regarding large numbers of children with IF and their clinical outcomes and in establishing a network of reporting centres. However, a change in methodology is essential if representative data is to be collected. Electronic reporting of anonymised data within the established context of the British Artificial Nutrition Survey is now being explored (paed e-BANS) as a joint project between the British Society of Paediatric Gastroenterology and Nutrition, and the British Association of Paediatric Surgeons.
British Society of Paediatric Gastroenterology, Hepatology and Nutrition and the British Association of Paediatric Surgeons
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