Parents of children with ocular genetic diseases such as inherited retinal
diseases generally have good experiences with healthcare
but lack information, especially regarding prognosis and resources for support,
according to results published in Ophthalmic Genetics. Kathryn Haider, MD, and colleagues
surveyed parents of pediatric patients to investigate factors that prompt families to receive
genetic testing, topics they hope to cover with clinicians, and gauge satisfaction with current
healthcare. Parents were mainly motivated to learn about their child’s prognosis, formal diagnosis,
and potential therapeutic options, and they were especially interested in discussing prognosis,
adjustments for vision loss, and testing. While parents were satisfied with current care, less than
half were very satisfied with their understanding of prognosis and the supportive resources
available. “As the field of ocular genetics continues to grow, it is important we improve these
offerings and optimize care for this patient population,” Dr. Haider and colleagues wrote.
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