Abstract
Abstract: :
Purpose: To determine if parents are able to assess both visual impairment and the effect it has on their child's social function in nystagmus. Studies to date concerning assessment of acute and terminal disease have found a mixed picture. Parents have been shown to better estimate physical than emotional or social functioning and often underestimate ability to perform tasks. Method: A postal questionnaire including 8 questions on social function was designed and sent together with the Visual Function 14 questionnaire (VF14) to 1013 members of the "Nystagmus Network" – a patient support group for nystgmus sufferes and their families in the UK. The lower the score, the worse the visual or social function. (range 0-100). Results of the VF14 and social score of children and parents were compared by regression analysis.Results: 120 parent and child responses were received. 56% male, 39% female (5% not stated) The mean age of children was 10 years (range 4-18). 83% of parent responders were mothers. The mean VF14 scores for parent and children were 69.15 and 69.96 respectively (range 16.67-100, 6.25-100). The mean social scores were 66.65 and 64.66 for parent and child respectively (ranges 9.38-100, 25-100). Regression analysis showed correlation between parent and child assessment of both visual and social function (p<0.000, p<0.000).Conclusions: Parents and children scores for visual and social function are comparable. Parents are therefore able to rate with reasonable accuracy the degree of visual and social impairment caused by nystagmus.
Keywords: clinical (human) or epidemiologic studies: out • nystagmus