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Caregiver Impact and Understanding of Retinopathy of Prematurity Screening
Weilin Song1, Maggie Hui2, Monica Khitri1,3
1Stein and Doheny Eye Institute, University of California Los Angeles, Los Angeles, USA.
Insights
Retinopathy of prematurity (ROP) screening impacts families, especially when infants have ROP. Caregivers of children with ROP reported greater family sacrifices and less social interaction due to their child's eye condition.
Area of Science:
- Ophthalmology
- Neonatology
- Public Health
Background:
- Retinopathy of prematurity (ROP) is a significant cause of visual impairment in premature infants.
- Early ROP screening and timely follow-up eye care are crucial for preventing vision loss.
- The family impact of managing ROP and its associated eye conditions is not fully understood.
Purpose of the Study:
- To quantitatively assess the impact of retinopathy of prematurity (ROP) screening and follow-up eye care on families.
- To compare the experiences of caregivers whose infants were diagnosed with ROP versus those who were screened but did not have ROP.
Main Methods:
- Quantitative data collection through caregiver surveys at UCLA Medical Centers.
- Inclusion of 37 survey responses from caregivers of infants screened for ROP between January 2011 and February 2021.
- Analysis of ROP diagnosis rates and reported family impact, including sacrifices and social changes.
Main Results:
- 17 (46%) of the 37 infants screened had ROP.
- Caregivers of infants with ROP reported significantly more family impact, including giving things up (59% vs 15%) and reduced social contact (47% vs 5%).
- Children with ROP were more likely to be followed by multiple eye specialists (59% vs 10%) and have additional eye diagnoses (24% vs 0%).
Conclusions:
- ROP screening identifies infants requiring specialized eye care.
- Children diagnosed with ROP place a greater long-term burden on their families compared to those screened without the condition.
- Findings highlight the substantial family-centered challenges associated with retinopathy of prematurity.
Abstract:
This research brief collected quantitative data on the impact of retinopathy of prematurity (ROP) screening, including follow-up eye care. In total, 37 survey responses from caregivers of infants who underwent ROP screening at UCLA Medical Centers between January 1, 2011 and February first, 2021 were included, and 17 (46%) of the infants had ROP. In total, 36 (98%) caregivers remembered their child undergoing ROP screening and accurately recalled why their child received the screening along with the outcome. More caregivers of children with ROP reported significant family impact from caring for their preterm child, including having to give things up [10 (59%) versus 3 (15%); p = .0245] and seeing family and friends less [8 (47%) versus 1 (5%); p = .0275]. Children with ROP were more likely to be followed by more than one eye specialist [10 (59%) versus 2 (10%); p = .0011] and diagnosed with additional eye conditions [4 (24%) versus 0; p = .0091]. Caregivers of children with ROP experienced increased long-term family impact compared to caregivers of children who were screened but did not have ROP.
