CVI+ outcomes study

The CVI+ outcomes study is exploring outcomes for children with cerebral visual impairment plus profound and multiple learning disabilities (CVI+).

Cerebral visual impairment (CVI) is the most common childhood visual impairment. It affects 1 in 30 children that attend mainstream school and 1 in 6 children that attend special school.

This research study will focus on what outcomes are important to children who have cerebral visual impairment PLUS profound and multiple learning disabilities (CVI+).

CVI+ describes children who may be non-verbal, non-mobile, and have brain-based visual problems.

Outcomes and ‘Core Outcome Sets’

To help patients, doctors and other health professionals make decisions about treatments, we need evidence about what works best. Treatments are developed and tested by researchers to make sure they work and are safe. To do this, researchers need to look at the effects those treatments have on patients. Researchers do this by measuring an ‘outcome’. An example of an outcome for CVI+ would be ‘level of vision’ but we don’t know if this outcome is the most important to measure. Currently, different studies looking at treatment for CVI+ measure different outcomes. This means we cannot compare or combine their results. If all studies for CVI+ used the same outcomes, they could be compared and combined. This would make best use of all the research. When a set of main outcomes has been agreed for a health condition, it’s called a ‘core outcome set’.

Our research

The CVI+ study is looking for parents/carers and professionals to help develop the ‘core outcome set’ that should be measured in research about children with CVI+. Deciding which outcomes should be core requires a great deal of discussion. Core outcomes must be relevant to patients, carers and health professionals. We will make sure that expertise - from patients, carers and professionals – is used to agree on the core outcomes. To do this we will use ‘consensus methods’.

View information about the importance of core outcome sets for healthcare research.

Take part

During recruitment, we are looking for parents/carers of children with CVI+. We are also seeking professionals (vision-related & paediatric health professionals, and vision support teachers) who have worked with children who have CVI+.

What's involved

Participants can take part in all or some of the research:

• July 2025 Onward - Interviews with parents/carers and focus groups with professionals
• April-August 2026 – Online survey
• November 2026 – Consensus meeting

Who to contact

Please contact the lead researcher for participant information sheets if you feel you are eligible to take part or wish to know more about the study.

Public research partners

Public research partners that are involved in the design and management of this research study:

• Carolyn Voisey
• Joy Constable
• Cathy Chan
• Inez Sheldon
• Haleh Rigby
• Farah Rehman
• Shahim Akhtor

Acknowledgements

This research is funded by an NIHR Fellowship Award, the results of the study will form part of a PhD thesis.

The F-words framework will be used alongside the COMET taxonomy to map outcomes to areas/domains.

Rosenbaum P, Gorter JW. The 'F-words' in childhood disability: I swear this is how we should think! Child Care Health Dev. 2012 Jul;38(4):457-63. doi: 10.1111/j.1365-2214.2011.01338.x. Epub 2011 Nov 1. PMID: 22040377.

CanChild. F-Words in Childhood Disability, https://canchild.ca/en/research-in-practice/f-words-in-childhood-disability accessed 6/1/25