CVI+ Outcomes Study V0.1
Research type
Research Study
Full title
Development of a core outcome set (COS) for children with cerebral visual impairment (CVI) plus profound and multiple learning disabilities.
IRAS ID
344043
Contact name
Louise Allen
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
2 years, 3 months, 30 days
Research summary
Cerebral visual impairment (CVI) is a term to describe visual problems usually caused by brain injury as a baby. 'CVI+' describes children who may be non-verbal, non-mobile, and have these brain-based visual problems. This affects 1 in 6 children who attend special schools: roughly 20,000 children in England. CVI varies considerably in how severely it affects each child. It is usual that children with multiple learning disabilities tend to be affected more severely (CVI+). Support for children with CVI+ is hampered by lack of evidence on what works best.
Health professionals and researchers measure 'outcomes' to look at the effects that treatments have on patients. Currently, different studies looking at treatment for CVI+ measure different outcomes. This means we cannot compare or combine their results. This research aims to develop a ‘core outcome set’ for CVI+; the main set of outcomes that has been agreed for this condition. Once developed, use of the 'CVI+ core outcome set' can help researchers find out what treatments for CVI+ work best.
Design and Methods used:
1.create a list of what is already considered important to measure by parents/carers/professionals using the scientific published literature,
2.explore parent/carer/professional views on, what is important to measure, through interviews, group meetings,
3.agree the final list of, what to measure, via an online survey and consensus meeting with parents/carers/professionals.
These methods will be used to reach consensus on the most important 'outcomes' for visual needs in CVI+. The importance of each outcome, feedback methods, and procedure for inclusion/exclusion of outcomes will be developed with the patient and public involvement group for this study.The parents/carers of children with CVI+ will be recruited via NHS Trusts and professionals will be recruited via NHS Trusts, professional representative bodies, and social media.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
25/NW/0111
Date of REC Opinion
22 May 2025
REC opinion
Further Information Favourable Opinion