Parents' Knowledge and Education of Retinopathy of Prematurity in Four California Neonatal Intensive Care Units

Abstract

Purpose: Retinopathy of prematurity (ROP) may cause visual impairment in infants with very low birth weight. Lack of parent knowledge may contribute to gaps in screening and treatment. We studied parents' knowledge and education of ROP.

Design: Cross-sectional study.

Methods: Setting: Four high-acuity neonatal intensive care units in California (40-84 beds).

Participants: Total of 194 English- and Spanish-speaking parents of very low birth weight (<1500 grams) infants recruited from September 2013 to April 2015.

Main outcome measures: We asked parents what they knew about ROP, how they were educated about ROP, and their experiences obtaining outpatient eye care. We used multivariate analysis to assess whether parent knowledge was associated with level of English proficiency and literacy, education modality (verbal, written, online, video), and hospital transfer status.

Results: Of the 194 participants, 131 (68%) completed surveys: 18% had both limited English proficiency and low literacy while overall 26% had limited English proficiency and 37% had low literacy; 17% did not know that ROP is an eye disease, and 38% did not know that very low birth weight and prematurity are both risk factors for ROP. Parents reported receiving verbal (62%) or written (56%) information; few used online resources (12%) or videos (3%). Half reported receiving information about infants' retinopathy status at discharge. No education modality was associated with higher knowledge. Limited English proficiency and low literacy were associated with lower knowledge (vs English-proficient, literate).

Conclusions: Parents of infants with very low birth weight, particularly those with limited English proficiency and low health literacy, lack knowledge about ROP.