Knowledge, attitudes, and practices among guardians toward inherited retinal diseases: a structural equation modeling analysis

Abstract

Abstract This study aimed to investigate the knowledge, attitudes, and practices (KAP) among guardians toward inherited retinal diseases (IRDs) in children. This multicenter cross-sectional study, conducted from June 23, 2024, to February 23, 2025, invited guardians of children diagnosed with IRDs at the outpatient or inpatient departments of Tongren City People’s Hospital and its affiliated hospitals to complete a questionnaire. Path analysis was employed to examine the relationships among KAP. This study included 459 participants (51.2% male; mean age 51.44 ± 8.12 years). The KAP scores for KAP were 8.32 ± 1.61 (range: 0–17), 33.25 ± 3.51 (range: 10–50), and 36.93 ± 3.76 (range: 10–50), respectively. Path analysis revealed that knowledge had a significant direct effect on attitudes (β = 0.22, P  = 0.023), and attitudes had a significant direct effect on practices (β = 0.66, P  < 0.001). Although the direct effect of knowledge on practices was not significant, an indirect effect was observed through attitudes (β = 0.15, P  = 0.024). Guardians of children with IRDs have limited knowledge and relatively negative attitudes, yet their practices are comparatively positive. These findings highlight the need for enhanced disease-related education on clinical variability to improve parental knowledge, foster more positive attitudes, and promote proactive health practice.