Long-Term Outcomes in Children Born with Abdominal Wall Defects V1
Research type
Research Study
Full title
AIMES: Assessing the Long-term Impact of Early Surgical Care in Children Born with Abdominal Wall Defects
IRAS ID
155257
Contact name
Marian Knight
Contact email
Sponsor organisation
University of Oxford
Duration of Study in the UK
1 years, 8 months, 1 days
Research summary
The British Association of Paediatric Surgeons Congenital Anomalies Surveillance System, (BAPS-CASS) is an established scheme through which data has been collected on the outcomes in a number of conditions requiring early surgery. This system has been designed to inform evidence-based practice in a setting where recruitment to clinical trials has been challenging to date. By assessing outcomes of different management strategies up to one year of life, BAPS-CASS has published an evolving body of evidence to inform current practice. The effects of neonatal surgical management must last for a patients’ lifetime and provide the best quality of life for the individual at all stages of development. Evidence-based decision-making about the optimal management strategy in such conditions, therefore, requires robust assessment of how children fare in the longer-term.
Clinicians from all specialities are increasingly looking beyond clinical outcomes to try to obtain a more holistic picture of patient-reported, or in the case of young children, proxy-reported outcomes such as health related quality of life (HrQOL). Such measures provide a vital picture of a child’s well-being at the age at which they are assessed.
This project will investigate children born with abdominal wall defects assessing both school and patient/ parent-reported outcomes. Teachers, parents and children will be asked to complete a questionnaire about their/the child's general health and wellbeing.
The data generated from this study will relate outcomes to severity of disease in order to inform evidence-based practice and parental counselling.
The research will be conducted at the University of Oxford and is funded as part of a Professorship by the National Institute for Health Research.REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
14/LO/1949
Date of REC Opinion
23 Dec 2014
REC opinion
Further Information Favourable Opinion