A recent survey of parents of patients at the Indiana University Ocular Genetics Clinic and participants registered in the Foundation Fighting Blindness MyRetinaTracker database explored the factors motivating families to undergo genetic testing, the topics they were interested in discussing, and their satisfaction with the current care received.
The results of the survey highlighted several significant insights. Parents indicated that their primary motivation for pursuing genetic testing was the opportunity to gain insights into their child’s prognosis, obtain a formal diagnosis, and explore possible treatment options. Among the topics they were most interested in discussing were the prognosis, adaptations for vision loss, and logistical aspects of testing.
Overall, parents reported satisfaction with the care provided to their children but less than half of the respondents expressed being very satisfied with their understanding of the prognosis and the support resources available to them.
The authors concluded that there is a need for improvements in certain aspects of care for this patient population. While parents generally appreciate the care received from ocular genetics teams, their desires are not fully met, particularly in terms of receiving comprehensive information about prognosis and having access to adequate support resources.
Reference
Gage H, Wetherill L, Anderson K, et al. Motivations and expectations of parents seeking genetic testing for their children with ocular genetic disease. Ophthalmic Genet. 2023;1-8. doi: 10.1080/13816810.2023.2209170. Epub ahead of print. PMID: 37170870.
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