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

Area of Science:

• Ophthalmology
• Genetics
• Pediatrics

Background:

• Inherited retinal diseases (IRDs) represent a significant group of pediatric genetic disorders.
• Understanding the knowledge, attitudes, and practices (KAP) of guardians is vital for effective management and support.
• Limited data exists on parental KAP regarding IRDs in children within specific healthcare settings.

Purpose of the Study:

• To investigate the knowledge, attitudes, and practices (KAP) of guardians concerning inherited retinal diseases (IRDs) in children.
• To analyze the relationships between knowledge, attitudes, and practices among these guardians.
• To identify areas for targeted educational interventions to improve care for children with IRDs.

Main Methods:

• A multicenter cross-sectional study involving 459 guardians of children diagnosed with IRDs.
• Data collected via questionnaires from June 2024 to February 2025.
• Path analysis used to examine the interrelationships among KAP.

Main Results:

• Guardians demonstrated limited knowledge (score: 8.32 ± 1.61) and relatively negative attitudes (score: 33.25 ± 3.51) towards IRDs.
• Practices were comparatively positive (score: 36.93 ± 3.76).
• Knowledge significantly influenced attitudes (β=0.22, P=0.023), and attitudes significantly influenced practices (β=0.66, P<0.001). An indirect effect of knowledge on practices was found via attitudes (β=0.15, P=0.024).

Conclusions:

• Guardians of children with IRDs possess suboptimal knowledge and attitudes but exhibit positive practices.
• Enhanced disease-specific education, particularly on clinical variability, is essential.
• Interventions should aim to improve parental knowledge, foster positive attitudes, and encourage proactive health management for children with IRDs.