Premature infants, especially those less than 31 weeks gestation, have increased risk of acute and long term vision problems. Retinopathy of Prematurity (ROP) is the most common cause of long-term visual impairment in these infants, although even premature infants without ROP are at risk for long-term vision morbidity compared to full-term infants. The incidence and severity of visual morbidity and disability increase with shorter gestational age and with increasing severity of ROP. The American Academy of Pediatrics and the American Academy of Ophthalmology published guidelines for ROP screening criteria in premature infants and interval examination schedule for acute and short-term follow-up. In addition, the Early Treatment of Retinopathy of Prematurity (ETROP) study group has revised recommendations for earlier intervention in eyes at risk for progressive ROP. However, there is little consensus and no established guidelines regarding criteria, examination intervals, or types of assessments for long-term follow-up of premature infants with or without ROP. Long-term ophthalmic follow-up is particularly important for premature infants because ophthalmic findings and function change overtime and because early intervention is likely to improve long-term outcomes.
The specific aims of this project are: (1) Identify factors that influence the receipt of ophthalmic follow-up care by conducting focus groups with parents of VLBW children and interviewing key stakeholders, including ophthalmologists and insurers; (2) design and conduct a nation-wide survey of NICUs to understand their institutional policies for ophthalmologic follow-up of preterm infants; (3) develop quality indicators, based upon the UCLA/RAND modified-Delphi-Method, for long-term ophthalmologic follow-up care of premature infants by reviewing current evidence and the use of an expert panel process; (4) survey parents of VLBW infants in different regions to assess the prevalence of each of the barriers and facilitators identified in the focus groups and the extent to which these factors are associated with the receipt of follow-up ophthalmologic services; and (5) develop and test, based upon information derived from the focus groups, interviews, and expert panel, feasible and reproducible strategies that will enhance appropriate, evidence based, content-specific, long-term ophthalmic follow-up care in VLBW infants. As recently reported by the Institute of Medicine, the growing number of very premature infants is of national importance. Many of these infants have significant ophthalmologic morbidity, which impacts on their cognitive development and educational achievement. The findings will have important public health implications for tracking their health, development, and educational outcomes.
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