A prospective, national observational study to assess the incidence, presentation, current management strategies and outcomes of infants with surgical short bowel in the UK and Ireland
There is currently limited information about the incidence, aetiology, mode of presentation or management of surgical short bowel in the UK and Ireland
Variation in the management of these patients exists between and within paediatric surgical centres in the UK
Management strategies vary from palliative care to extensive reconstruction or intestinal transplantation
This study will provide will provide accurate data regarding the incidence of surgical short bowel in the UK and Ireland, the current non-surgical and surgical management of these patients and complications that occur, as well as specialist service utilization in the first year after diagnosis
October 2016 – September 2018
To identify cases of surgical short bowel using BAPS-CASS and estimate the national incidence of new cases
To describe the aetiology of surgical short bowel and identify remediable factors
To describe the current management (surgical, medical and decision to withdraw care) and outcomes of infants diagnosed with surgical short bowel in the UK and Ireland
To identify the incidence of immediate and short-term complications of treatment
To determine the outcome at 1 year after diagnosis and relate this to the early management
To use the information gained to inform plans for further research into the surgical management of this condition
To determine the number of infants diagnosed with surgical short bowel in the UK and Ireland, and describe the aetiology of this condition as well as their management and outcomes up to one-year from presentation.
The specific research questions are:
What length of bowel do professionals classify as short bowel?
What is the current incidence of surgical short bowel in the UK?
How are infants with surgical short bowel managed in the UK?
What are the outcomes following surgical management?
What are the outcomes following non-surgical management?
Any infant who, within the first year after birth, has at least 90 days of continuous parenteral nutrition or who is judged to have a length of bowel incompatible with a life without parenteral nutrition. Please include all patients irrespective of whether they lived or died. This will include patients in whom a decision is made to withdraw active treatment.
Exclusions: infants with motility disorders only† or other enteropathies affecting absorptive capacity.
†i.e. where resection or de-functioning has not affected bowel length
Prospective multicentre descriptive study using the established British Association of Paediatric Surgeons Congenital Anomaly Surveillance System (BAPS-CASS).
The study has been approved by the NRES Committee South Central-Oxford A (Ref: 12/SC/0416)
Antonino Morabito, Professor of Paediatric Surgery, University of Manchester
Anna-May Long, Clinical Research Fellow in Paediatric Surgery, NPEU
Riccardo Coletta, PhD Student, University of Manchester