Ophthalmologic Follow-up Care for Children Born Very-Low-Birth-Weight

描述（由申请人提供）：早产儿，特别是那些小于31周的妊娠，有急性和长期视力问题的风险增加。早产儿视网膜病变（ROP）是这些婴儿长期视力障碍的最常见原因，尽管与足月婴儿相比，即使是没有ROP的早产儿也有长期视力发病的风险。随着胎龄的缩短和ROP严重程度的增加，视力发病率和视力残疾的严重程度也随之增加。美国儿科学会和美国眼科学会发布了早产儿ROP筛查标准指南以及急性和短期随访的间隔检查时间表。此外，早产儿视网膜病变早期治疗（ETROP）研究小组已经修订了对有进行性ROP风险的眼睛进行早期干预的建议。然而，对于有或没有ROP的早产儿的长期随访的标准、检查间隔或评估类型，几乎没有共识，也没有既定的指南。长期眼科随访对早产儿尤为重要，因为眼科检查结果和功能随时间变化，而且早期干预可能改善长期结局。 该项目的具体目标是：（1）通过与极低出生体重儿童的父母进行焦点小组讨论，并采访包括眼科医生和保险公司在内的关键利益相关者，确定影响接受眼科随访护理的因素;（2）设计并进行全国范围的NICU调查，以了解他们对早产儿眼科随访的机构政策;（3）根据UCLA/兰德改良德尔菲法，通过回顾现有证据和使用专家小组程序，制定早产儿长期眼科随访护理的质量指标;（四）对不同地区极低出生体重婴儿的父母进行调查，以评估焦点小组中确定的每种障碍和促进因素的患病率，以及这些因素与后续眼科服务的接受有关;（5）根据来自焦点小组、访谈和专家小组的信息，开发和测试可行的和可重复的策略，这些策略将增强VLBW婴儿的适当的、基于证据的、内容特定的、长期的眼科后续护理。正如医学研究所最近报告的那样，极早产儿数量的增加具有国家重要性。这些婴儿中的许多人具有显著的眼科发病率，这影响了他们的认知发育和教育成就。这些发现将对跟踪他们的健康，发展和教育成果具有重要的公共卫生意义。

DESCRIPTION (provided by applicant): 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.