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Nathalie Duponsel, Walter Wittich, Olga Overbury; People with Retinitis Pigmentosa: Are They Really that Different?. Invest. Ophthalmol. Vis. Sci. 2011;52(14):383.
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Among ocular disorders that cause significant vision loss, retinitis pigmentosa (RP) is relatively unique in that it occurs earlier in life and over a prolonged period of time. Clinical experience and some research suggests that, because of the unique nature of RP, individuals with this disorder adapt differently than those with other visual disorders. This study investigated participation rates at vision rehabilitation centres (VRCs) by individuals with various ocular disorders to determine if those with RP have different rates of participation.
Cross-sectional data for individuals with RP (N=618) and participants of the Montreal Barriers to Vision Rehabilitation Study (N=512) were used in this analysis. Participation rates at VRCs and visual function information were used to compare individuals with RP and those with age-related macular degeneration (AMD; N=265), diabetic retinopathy (DR; N=74), glaucoma (N=99) and other retinal disorders (N=49).
Only 36% of individuals with RP received services at a VRC. However, this rate does not differ significantly from those with DR (42%), glaucoma (45%) or other retinal disorders (43%). This does differ significantly from participation rates of people with AMD (62%; X2=15.37, p=.004). Furthermore, while the majority of those with RP (61%), DR (59%), and glaucoma (54.2%), were already legally blind when they sought rehabilitation, only 43% of those with AMD were legally blind (57% had only mild or moderate impairment).
Although common beliefs suggest that those with RP adapt differently, and thus may seek vision rehabilitation differently than people with other vision disorders, these results point more to central versus peripheral loss as a determining factor. While DR can lead to central vision loss, for many, changes occur in the periphery which is where loss occurs in both glaucoma and RP. AMD, however, invariably leads to central vision loss which is typically perceived as more detrimental. Although peripheral loss can significantly hinder an individual’s ability to perform daily activities, these results suggest that people with central vision loss seek rehabilitation more frequently and earlier than those with peripheral loss.
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