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Nathalie Bax, Stanley Lambertus, L. Ye, PJM van den Wittenboer, B. Jeroen Klevering, CM Verhaak, Carel C B Hoyng; The burden of disease in Stargardt patients.. Invest. Ophthalmol. Vis. Sci. 2015;56(7 ):500.
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© ARVO (1962-2015); The Authors (2016-present)
We know little of the burden of disease in Stargardt patients and other forms of inherited retinal disorders. In other diseases, specific characteristics have been associated with quality of life. The availability of this type of information for retinal dystrophy patients is important in tailor made counseling aimed at optimizing quality of life. In the current study, we investigate the various aspects of the burden of Stargardt disease.
Almost one hundred Stargardt patients were willing to participate in this study. We used three questionnaires: the Rand-sf36 is a standardized questionnaire with norm scores for the general population that we used to assess the general burden of Stargardt disease. With the VFG-25 questionnaires we evaluated the disease specific quality of life. General information was extracted with a custom made patient questionnaire. The interviews were conducted by a trained researcher.
Over a period of 1.5 year, we interviewed 98 Stargardt patients. Besides the general information, we collected 95 VFQ-25 and 94 Rand-sf36 questionnaires. The age distribution was 17-76 years (mean: 45.2 years); the inclusion slightly favored women (59 - 60%). The age of onset of Stargardt disease ranged from 1-71 years (mean: 23 years). According to the Rand-sf36 Stargardt patients judged overall health no different than norm groups matched for age and sex. There was also no difference between the age of onset and the severity of the disease and overall quality of life. The VFQ-25 questionnaires are still under analysis; the result will be available at the ARVO and should provide more information on disease specific quality of life.<br />
Patients with Stargardt disease report the same general quality of life as matched control groups. Information on the disease specific quality of life will provide more information about the impairments they face in daily life.<br />
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