Will my child drive? what to tell parents of children with albinism

Introduction
Visual acuity in patients with albinism ranges from normal to legally blind. Parents of newly diagnosed children wonder whether vision will be adequate to drive, work, and learn, but the wide range makes prognosis challenging. We surveyed adults with albinism about driving, ocular conditions, and psychosocial responses to albinism.
Methods
People with albinism 18 years and older were invited by letter and on albinism organization websites to complete an IRB approved 120 question Qualtrics survey online. Descriptive statistics were used to summarize the data sets. Binomial tests were used to compare prevalence of ocular conditions to the general population.
Results
117 surveys were completed. Visual acuity ranged from better than 20/40 to worse than 20/400. Visual acuity was worse than 20/100 in 59%; 33% reported driving. Cataracts were more prevalent in our survey population than the general population at 40-49 years (P = 0.0265) and 50-54 years (P = 0.0040). Three patients reported cataract onset before age 40. Psychosocial questions revealed good self-esteem (Rosenberg 23.6 ± 2.8) and resilience (BRS 3.5; normal, 3-4.3), but moderate fear of negative appraisal based on physical appearance (FNAES 13.7 ± 5.9).
Conclusion/Relevance
A majority of respondents may qualify for at least daytime driving, yet only 33% drive. Requirements vary by state, so pediatric ophthalmologists should be familiar with their state's requirements and educate patients and parents, as well as refer for low vision driving evaluations. Pediatric ophthalmologists should recommend continued eyecare throughout life, since cataracts may develop earlier than the general population. Support for concerns about physical appearance should be offered.