Journal of American Association for Pediatric Ophthalmology and Strabismus
Major ArticleEvaluation of vision-specific quality-of-life in albinism
Section snippets
Methods
Individuals with albinism who were at least 18 years of age were recruited at the 11th meeting of the National Organization of Albinism and Hypopigmentation in Minneapolis, Minnesota, July 2006, or from the ophthalmology practice at the University of Minnesota, Minneapolis. Participants provided written informed consent. The project was approved by the Institutional Review Board at the University of Minnesota and was conducted in compliance with the Health Insurance Portability and
Results
Forty-four adults participated in this study. Demographic information about this cohort is presented in Table 1. All but one had graduated from high school, 35 attended college, and 10 finished graduate school. At the time of participation, all were either in college, employed full-time, or retired from a full-time vocation. Forty-eight percent (21 of 44) were able to drive with their condition. Approximately 52% of participants were affected by a condition listed on the general health
Discussion
The authors of several studies have used the NEI-VFQ-25 to study quality of life in ophthalmic disorders. Although this means of evaluation was designed to evaluate health-related QOL in persons with common ocular pathology, it has also been shown to be effective in the assessment of patients with less common ophthalmic conditions.2, 5, 6 The vision-related subscale results reported here for individuals with albinism are similar to those reported for individuals with moderate-to-severe diabetic
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Cited by (17)
Changes in refractive errors in albinism: a longitudinal study over the first decade of life
2018, Journal of AAPOSCitation Excerpt :Worse mean best-corrected visual acuity and higher mean astigmatism (with standard deviation) at visit C were found for OCA1A (20/104, +4.08 ±1.34) compared to OCA1B (20/59, +2.30 ± 1.36; P <0.0001) and OCA2 (20/66, +2.53 ±1.21; P <0.0001). Reduced vision is the most debilitating problem faced by individuals with albinism.16 Routine eye examinations, accurate cycloplegic refractions, and updated glasses prescriptions are valuable interventions that eyecare providers can offer, because glasses wear has been shown to be effective in improving vision significantly despite reduced visual potential.7
Albinism and the Eye
2018, Albinism in Africa: Historical, Geographic, Medical, Genetic, and Psychosocial AspectsPsychosocial and Cultural Aspects of Albinism
2018, Albinism in Africa: Historical, Geographic, Medical, Genetic, and Psychosocial AspectsA cross-sectional examination of visual acuity by specific type of albinism
2016, Journal of AAPOSCitation Excerpt :Of all the findings in albinism, the most disabling is felt to be the reduction in distance BCVA. Families frequently ask about visual disability at the time of diagnosis.10,12,16 Counseling families about expectations for future visual acuity based on previous literature is flawed due to several factors: characterization of type of albinism based on phenotype despite the overlapping clinical features among the different genotypes4,23; small sample size; recording of monocular visual acuity, which is often degraded even when a fogging technique is used; use of nonstandard methods of visual acuity testing (eg, isolated symbols instead of a line of letters, nonlogarithmic acuity charts, testing without refractive correction), and reports not corrected for patient age.
Albinism
2016, Taylor and Hoyt's Pediatric Ophthalmology and Strabismus, Fifth Edition
Presented in part at the 33rd Annual Meeting of the American Association for Pediatric Ophthalmology and Strabismus, Seattle, Washington, April 12–15, 2007.
Supported by an unrestricted grant from Research to Prevent Blindness, Inc., New York, NY.