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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.

Keywords

Caregiver experience prematurity retinopathy of prematurity survey

Introduction

Retinopathy of prematurity (ROP) is a leading cause of permanent visual impairment in premature infants worldwide.^1,2 In the United States, ROP screening is recommended for all infants with a birth weight (BW) of equal to or less than 1500g, gestational age (GA) of 30 weeks or younger, or unstable clinical courses.^3,4 Although only about 10% of the infants who undergo inpatient ROP screening develop significant disease requiring treatment, it is important to follow screening criteria in order to not miss these cases.⁴ At the same time, parents may question the necessity of screening eye exams due to the stress infants experience during the exams and the effort required to bring the infants to their outpatient exams.⁵

There is limited data on the caregiver's experience and understanding of ROP screening and follow-up. The purpose of this study was to collect quantitative data on caregiver experience and understanding of preterm birth, inpatient ROP screening, and follow-up eye care after discharge.

Methods

This survey study was approved by the local Institutional Review Board. All study-related proceedings were performed in accordance with good clinical practice, the Declaration of Helsinki, and the Health Insurance Portability and Accountability Act. One caregiver per infant who underwent inpatient ROP screening at UCLA Medical Centers between 2011 and 2021 were eligible. Infants born at GA of ≤30 weeks, had a BW ≤1500g, or GA >30 weeks but with an unstable clinical course were screened and eligible for the study. Those who were screened for ROP but were deceased or did not have an active MyChart (patient portal) account (EPIC, Verona, WI) within the UCLA system at the time of this study were excluded. Surveys were sent through MyChart messaging at UCLA Medical Centers in December of 2022. Consent was obtained electronically prior to survey access. For multiple births, only one infant was included. Newborn characteristics, including BW, GA, ROP screening outcomes and other complications of premature birth, were collected from electronic medical record (EMR) review.

The survey starts with demographic questions for caregivers (Supplemental File 1). To assess impact on family, we included 5 of the 15 questions from the revised Impact on Family Scale (IOFS) survey⁶ to assess for family impact. Responses for a 5-point Likert scale were: strongly agree; agree; neutral; disagree; and strongly disagree. To assess experiences and understanding of ROP screening, caregivers were asked if they remembered their child being screened for ROP while in the hospital, and if so, the screening purpose and outcomes. Questions regarding current eye care and/or conditions were also included.

Categorical variables were described using frequencies and percentages. Continuous variables were described using means with standard errors. Relationships between categorical variables were assessed using Chi-Square test, while relationships between continuous variables were assessed using independent samples t-test and analysis of variance (ANOVA) for means. Analyses were performed using JMP^® Pro 14 software (SAS Institute).

Results

In this study, 396 eligible participants were sent messages through MyChart, and caregivers of 42 (11%) children completed the survey. After randomly excluding one response for each set of five twins, there were 37 survey responses included in the study.

Caregiver and child responses are reported in Table 1. Of all survey responses, 34 (92%) were by the biological mother. Of all caregivers, 36 (98%) remembered their child undergoing ROP screening and accurately recalled the purpose along with the outcome. Of the 37 children included in the study, 17 (46%) were screened and diagnosed with ROP. Of those diagnosed with ROP, 7 (41%) required treatment (4 injection only; 3 injection and laser). Average age of children at time of survey was 4.01 years old. At birth, infants with ROP had lower GA [25.6 (± 0.59) versus 29.3 (±0.53) weeks, p < .0001) and BW [1272 (± 63) versus 831 (± 81) grams, p = .0002) than those screened but not diagnosed with ROP. Infants with ROP also had higher rates of other complications of preterm birth [17 (100%) versus 17 (85%), p = .0478] compared to children without ROP.

Table 1.

Survey Responses by Category.

		All screened (n = 37)	Without ROP (n = 20)	With ROP (n = 17)	p-value
Caregiver demographics	Survey respondent relationship to patient (biological mother)	34 (92%)	18 (90%)	16 (94%)	.6440^a
	Biological mother age at birth (y, SE)	34.5 (±1.0)	36.4 (±1.1)	30.1 (±1.2)	.0003^b
	Biological father age at birth (y, SE)	35.8 (±1.4)	38.3 (±1.3)	32.5 (±1.4)	.0040^b
	Mother race/ethnicity				.1834^a
	Non-Hispanic Black	3 (8%)	1 (5%)	2 (12%)	-
	Hispanic	14 (38%)	5 (20%)	9 (53%)	-
	Non-Hispanic White	16 (43%)	11 (55%)	5 (29%)	-
	Other/unknown	4 (11%)	3 (15%)	1 (6%)	-
	Father race/ethnicity				.3385^a
	Non-Hispanic Black	2 (7%)	1 (5%)	1 (6%)	-
	Hispanic	6 (16%)	1 (5%)	5 (29%)	-
	Non-Hispanic White	21 (57%)	13 (76%)	8 (47%)	-
	Other/unknown	8 (22%)	5 (25%)	3 (18%)	-
	Primary language is English (Mother)	32 (86%)	17 (85%)	15 (88%)	.1967^a
	Primary language is English (Father)	27 (73%)	17 (85%)	10 (59%)	.2688^a
	Insurance (Medical/Medicaid)	7 (19%)	0 (0%)	7 (41%)	.0014^a
Caregiver recollection	Remembers newborn being screened for ROP	36 (98%)	20 (100%)	16 (97%)	.6043^a
	Remembers why newborn was screened for ROP	36 (98%)	20 (100%)	16 (97%)	.6043^a
	Correctly remembers outcome of ROP screen (observation vs treatment)	36 (98%)	20 (100%)	16 (97%)	.6043^a
Child characteristics	Age at time of survey (mean, SE)	4.01 (±0.51)	4.23 (±0.70)	3.75 (±0.76)	.6486^b
	Gender (female, %)	16 (43%)	9 (45%)	7 (41%)	.8149^a
	Gestational age at birth (mean, SE)	27.6 (±0.49)	29.3 (±0.53)	25.6 (±0.59)	<.0001^b
	Birth weight in grams (mean, SE)	1090 (±63)	1272 (±67)	831 (±81)	.0002^b
	Newborn is a twin (yes, %)	5 (14%)	4 (20%)	1 (6%)	.1944^a
	Other complications of preterm birth (yes, %)	34 (92%)	17 (85%)	17 (100%)	.0478^a
Current eye care	Receiving eye care currently	27 (73%)	14 (70%)	13 (76%)	.5244^a
	Followed by more than one type of eye subspecialist	12 (32%)	2 (10%)	10 (59%)	.0011^a
	Wears glasses	7 (19%)	0 (0%)	7 (41%)	.0014^a
	Diagnosed with one or more eye conditions	4 (11%)	0 (0%)	4 (24%)	.0091^a
	Amblyopia	1 (3%)	0 (0%)	1 (6%)	-
	Strabismus	3 (8%)	0 (0%)	3 (18%)	-
	Dacryostenosis	1 (3%)	0 (0%)	1 (6%)	-

Abbreviations: ROP, retinopathy of prematurity; SE, standard error.

student t-test between “Without ROP” and “With ROP” columns.

Chi-Square between “Without ROP and “With ROP” columns.

Responses to the revised IOF survey questions are reported in Figure 1. A greater proportion of caregivers of children with ROP compared to caregivers of children without ROP agreed with the statement “our family gives up things because my child was born premature” [10 (59%) versus 3 (15%); p = .0245]. In the ROP group, 5 (14%) caregivers agreed to the statement that “people in the neighborhood treat us differently because my child was born premature,” while no caregivers agreed in the group without ROP (p = .0183). A greater proportion of caregivers in the ROP group also agreed with the statement, “We see family and friends less because my child was born premature” [8 (47%) versus 1 (5%); p = .0275].

Figure 1.

Responses to questions from revised IOFS from parents of preterm infants with and without ROP. IOFS, impact on family scale; ROP, retinopathy of prematurity.

Most children who underwent ROP screening were continuing to receive eye care at the time of the survey [27 (73%)] in both groups (Table 1). A greater proportion of children in the ROP group followed with more than one eye subspecialist [10 (59%) versus 2 (10%); p = .0011], wore glasses [7 (41%) versus 0 (0%); p = .0014], and were diagnosed with additional eye conditions [4 (24%) versus 0; p = .0091], including amblyopia [1 (6%)] and strabismus [3 (18%)].

Discussion

In this study, we utilized a caregiver-reporting survey to collect quantitative data to further characterize the experience and understanding of caregivers with children who underwent screening for ROP. Most caregivers accurately remembered the reason and outcome of ROP screening. We also found that caregivers of children with ROP reported greater family impact in caring for their children and that children with ROP had higher rates of ophthalmic complications and saw more eye specialists.

Because ROP requires long-term outpatient follow up and care, it is critical for parents to understand the importance of screening and follow-up. All but one caregiver recalled their child being screened for ROP and accurately remembered the outcome of the screening, suggesting that the parental understanding in this cohort was adequate. In our NICU, early discussion and education regarding ROP and the screening exam is done in conjunction with the NICU nurses, neonatology team, and discharge planners to maximize parent understanding of the impact of preterm birth on visual outcomes. A statewide California study of 194 parents of infants who underwent ROP found that many of the parents were not well informed about ROP, particularly those with limited English proficiency and low health literacy.⁷

Premature birth alone has been previously shown to negatively impact caregivers and families.⁸ In a study of 196 parents of preterm infants <24 months, premature birth was found to be associated with greater social isolation, financial burdens, and unsafe home environments.⁸ Prior studies utilized the Children's Visual Function Questionnaire to study the effect of visual impairment on quality of life in children with ROP, with family impact reported to be one of the most affected domains.^9,10 This project adds to the literature by examining the family impact of both preterm birth and ROP diagnosis. Compared to caregivers of premature infants who were screened for but did not develop ROP, a greater proportion of caregivers of infants with ROP felt that they gave up things, saw family and friends less, and that neighbors treated them differently because their child was born premature. Almost half of both groups surveyed felt like they did not have time left over for other family members and had thought of not having any more children because their child had been born premature.

Children with ROP have a greater sequalae of nonocular and ocular complications that may require increased healthcare and caregiver needs.¹¹ In one nationwide epidemiological study of patients with ROP in Korea, those with ROP and treatment-requiring ROP had a 1.53- and 4.31-times higher risk, respectively, of ophthalmic complications—most commonly strabismus and amblyopia—compared to premature infants overall.¹² Similarly, our study had a greater proportion of children with ROP who saw more than one type of eye subspecialist, were myopic, and had additional eye diagnoses including amblyopia and strabismus.

Limitations

Limitations of this study include the small sample size leading to low statistical power along with potential reporting and sampling bias due to reliance on MyChart users which may limit its generalizability. Although not previously validated, developing our own survey tool allowed us to gather caregiver perspectives about multiple aspects of preterm birth and ROP diagnosis that could not have been obtained through retrospective chart review or a single validated survey tool. Race/ethnicity and insurance status of caregivers who filled out the survey were similar to larger studies of infants who underwent ROP screening at UCLA Medical Centers^13,14 and reflected the overall cohort eligible for the study. However, differences in socioeconomic status, cultural and regional influences, and demographics may reflect confounding factors that independently impact family burden.

Conclusions

This survey study demonstrates that ROP screening and outcomes are important to caregivers and is a reminder that the preterm experience has long-term impacts on the caregiver and family. It supports the importance of a multidisciplinary approach to inpatient ROP care (including robust discharge planning and community support groups) along with intentional, compassionate communication and education with caregivers.

Supplemental Material

sj-docx-1-jpx-10.1177_23743735251383261 - Supplemental material for Caregiver Impact and Understanding of Retinopathy of Prematurity Screening

Supplemental material, sj-docx-1-jpx-10.1177_23743735251383261 for Caregiver Impact and Understanding of Retinopathy of Prematurity Screening by Weilin Song, Maggie Hui, Monica Khitri, Alison Chu and Irena Tsui in Journal of Patient Experience

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Research to Prevent Blindness, National Eye Institute (grant number EY033794-02).

Ethical Considerations

This study was approved by the UCLA Institutional Review Board (IRB#20-001023). All study-related proceedings were performed in accordance with good clinical practice, the Declaration of Helsinki, and the Health Insurance Portability and Accountability Act (HIPAA).

Informed Consent

Written consent was obtained for all study participants.

ORCID iD

Weilin Song

Supplemental Material

Supplemental material for this article is available online.

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