B775 - Functional Vision in children with disabilities or learning difficulties - 29/01/2009

B number: 
B775
Principal applicant name: 
Miss Cathy E M Williams (University of Bristol, UK)
Co-applicants: 
Dr Kate Northstone (University of Bristol, UK), Dr Carol Joinson (University of Bristol, UK)
Title of project: 
Functional Vision in children with disabilities or learning difficulties.
Proposal summary: 

his project is a fellowship application for CW. Two similar applications -one for a "new blood" CSL post, and one for an NIHR Career Development Fellowship are proposed. The programme for each is identical, and includes some work on ALSPAC data - see Study 2 below

Functional vision and disability in childhood

Functional vision (how well a person's vision equips them for the tasks they need to carry out) includes both "eye" and "brain" capabilities and is recognised by the International Council for Ophthalmology (ICO) as a key outcome for rehabilitation and support strategies. This fits into the broader context of the global World Health Organisation (WHO) emphasis on Functioning, Disability and Health as important measures of people's health and well-being. There is increasing evidence that "cerebral visual impairment" (CVI) is a cause of functional vision problems in children. Although many professional bodies in the UK and the National Service Framework for children advocate a review of visual function as part of the assessment of a child with disabilities, recommendations for registration of sight impairment (which aids access to support services) include only visual acuity and visual field deficits and do mention include CVI. However services that carry out functional vision assessments, including CVI, as part of a team approach to managing disability have been set up and commended in a government report. However, there are few data available on effectiveness of these services.

Estimates of the proportion of children with disabilities who have functional vision problems vary from 8% to 80%, depending on the definition used. Forty-four percent of children on the UK cerebral palsy (CP) register have associated visual impairment. In a small pilot study of 7-yr old children (not in ALSPAC) conducted by myself and colleagues - 5/11 children with a statement of educational special needs (SEN) had a previously unknown problem that might be expected to affect their functional vision (field loss, eye movement inaccuracies, failure of accommodation, 3+ yrs delay in visuo-perceptual abilities) whilst none of the 8 age-matched controls did. This study was hampered by very low recruitment but the results support the possibility that there may be "unmet need" in terms of visual morbidity amongst children with statements of SEN (results in preparation).

Testing and supporting functional vision in children with disabilities - a "complex intervention".

A key problem in designing, funding and running services in this area of healthcare provision for children with functional vision impairments is the lack of evidence on effectiveness, acceptability and cost-effectiveness, of interventions. The new MRC Guidance on Complex Interventions provides a useful conceptual framework to evaluate existing and guide new research. In line with this advice, I propose a 5-year programme of work designed to develop a complex intervention that will include assessing a child's "functional vision" and individualising their support accordingly. I will review existing evidence, carry out qualitative and physical assessments to characterise the deficits in more detail, and estimate the effectiveness of intervention strategies in pilot studies. I will then design a complex intervention and a study in which it can be evaluated.

PROPOSED RESEARCH IN THIS 5 YEAR PROGRAMME relevant section to ALSPAC:

Study 2. I will continue analysis of existing observational data within the Avon Longitudinal Study of Parents and Children (ALSPAC). These analyses will include:*

(a) contribution of CVI symptoms (elicited in a specific set of targeted questions) and other visual deficits (eg reduced acuity or contrast sensitivity) to educational, motor and social outcomes in children with ICD-10 diagnosed difficulties (ie prevalence of CVI as a co-pathology)

(b) self-esteem using a 12-item shortened form of Harter's Self Perception Profile for Children asked at age 8 (Harter, 1985) and peer relations (Questions from the Cambridge Hormones and Moods project Friendship questionnaire at 11y and 13y) for children with CVI compared to those without

(c )psychological well-being for mothers and mothers' partners, of children with CVI and other visual deficits, as compared to that of mothers and their partners where the children do not have CVI symptoms. without (using the anxiety subscale of the Crown Crisp Experiential Index (Crown & Crisp, 1979) and the Edinburgh Postnatal Depression scale (Cox, Holden, & Sagovsky, 1987),when child was 11y).

(d) contribution of any genetic factors that may contribute to CVI in children eg such as the deletion on chromosome 7q11.23, already identified as causing "Williams syndrome", in which functional vision is impaired because of impaired processing of visual input by the brain.

Funding-The only extra resource needed is a pro rata contribution to the time for a statistician to prepare specific files and help analyze and write up the data. Funds for this will be applied for as needed.

Further studies (1 and 3 - 5) in accompanying proposal will be conducted, with new data collection, not involving ALSPAC.

Date proposal received: 
Thursday, 29 January, 2009
Date proposal approved: 
Thursday, 29 January, 2009
Keywords: 
Learning Disability, Vision
Primary keyword: