Long-Term Outcomes for UK Children with CIPO: a multi centre study
Research type
Research Study
Full title
Clinical and Patient Reported Long-Term Outcomes in Children with Chronic Intestinal Pseudo Obstruction: a UK Multi-Centre Study.
IRAS ID
241657
Contact name
Joanne Brind
Contact email
Sponsor organisation
UCL GOSH Institute of Child Health
Clinicaltrials.gov Identifier
ICA-CDRF-2017-03-084, NIHR reference
Duration of Study in the UK
1 years, 7 months, 0 days
Research summary
Chronic Intestinal Pseudo Obstruction (CIPO) is a rare disease of the nerves or muscles in the gut. It represents one of the main causes of intestinal failure in children and 50% of children/young people awaiting bowel transplantation in the UK today have CIPO. Some children with CIPO will not survive and for those who do survive quality of life (QoL) is often significantly impaired.
In 2012 NHS England commissioned a National CIPO Diagnostic Service, with the aim of providing early and accurate diagnosis in order to change the current poor prognosis. There is emerging evidence that some operations and diet may help and as a consequence of improved diagnosis and management survival rates are improving.
As more children are being diagnosed and surviving, it is important that QoL is also explored. However, we do not know what outcomes are most important to children and their families. Little is known about what it is like to live with CIPO nor do we know how treatment impacts QoL.
The aim of the first phase of this multi-centre study involving hospitals across the UK is to explore, from the perspective of both children and young people (age 4 to 18) with CIPO and their parents, the outcomes that matter to them. In phase two we aim to identify questionnaires that reflect the outcomes identified in phase one, for use in later stages of the project .
Individual interviews will be held with 10-15 children/young people and their parents at home or hospital. Creative methods will be used to enable younger children and those with learning disabilities to participate. Interviews will be analysed to identify important themes and these will inform the choice of questionnaires for subsequent use. A steering group including patient and parent representatives will be involved in questionnaire selection.REC name
London - Central Research Ethics Committee
REC reference
19/LO/0636
Date of REC Opinion
10 May 2019
REC opinion
Favourable Opinion