Social and visual function in nystagmus

Aim: To investigate the influence of nystagmus on visual and social function and determine if parents are able to assess visual and social function in children with nystagmus. Method: A postal questionnaire comprising 14 questions related to visual function (VF-14) and questions pertaining to social function were sent to all 1013 members of the Nystagmus Network - a UK based organisation for nystagmus sufferers and their families. Visual and social function scores were compared by regression analysis. Results: 180 adult, 233 parent, and 124 child questionnaires were returned. Idiopathic nystagmus was the most common cause. In adults the mean VF-14 score indicated very low visual function, in the same range as patients assessed in low vision services. Children's visual function scored better than adults, between scores of patients with age related macular disease and corneal grafts. There was a strong correlation between perceived visual and social function for adults (p< 0.001) and parental assessment of their children ( p< 0.001), but not between child self assessment of visual and social function. There was strong correlation between parental and child assessment of visual and social function ( p< 0.001, p< 0.001). Conclusion: Questionnaires indicated that nystagmus is associated with very low visual function. There is a strong correlation between visual and social impairment. The authors have shown for the first time in an ophthalmic disease that parents are able to estimate the impact of nystagmus on their child both in terms of visual and social functioning, although they underestimate the impact of nystagmus on emotional aspects of wellbeing.