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R. J. McLean, K. Windridge, I. Gottlob; Living With Nystagmus - A Qualitative Study. Invest. Ophthalmol. Vis. Sci. 2010;51(13):1995.
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Quality of life has, in recent years, has become an important outcome measure in health care. Many measures currently exist to measure vision specific quality of life, however, none of these measures are specific to nystagmus and the areas of life that may be affected by the condition. We aim to identify the content area, for a future questionnaire, designed to measure the aspects of life that are affected by the condition nystagmus.
Semi-structured interviews were conducted for participants with acquired and infantile nystagmus until theoretical saturation was reached. Qualitative analysis of the transcripts was carried out based upon grounded theory.
Participants described a range of symptoms and impact. Difficulty in achieving whilst in education was commonly described by participants and also feelings of low attainment at work. Daily activities such as reading and shopping were noted to cause stress. A loss of independence and reliance on other people was expressed by many. Exposure to leisure and social activities was felt to be greatly reduced by nystagmus and interaction with peers and building personal relationships was described as limited. By far the themes that caused the most impact were driving and cosmesis. Not being able to drive and the appearance of the nystagmus were reported to impact on many life domains, not just physical functioning but also on the social and psychological domains. It was generally felt that it was these two areas that create the biggest impact on quality of life for those who have nystagmus, leading to low self-esteem and feelings of worthlessness.
Using semi-structured interviews we were able to identify content areas and aspects of life that are affected by nystagmus that are not measured by standard visual acuity testing. Cosmesis, which for our participants was described as extremely important, is not covered in vision related quality of life questionnaires such as the NEI VF-25. It will now be possible to develop a tool with adequate content validity to assess the efficacy of treatments for nystagmus.
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