Identifying Barriers and Improving Adherence to Follow-up of Childhood Glaucoma in South India.

Abstract

Aim: To understand predictors and barriers of adherence to follow-up and identify strategies to improve follow-up in childhood glaucoma.

Design: Cross-sectional study.

Subjects: Caregivers of children with glaucoma diagnosed between January 2014 and January 2019 residing within 200 km of the base hospital.

Methods: Home visits were conducted with consenting caregivers to collect information on socioeconomic status, education, occupation, activities, and quality of life. Caregivers were subsequently invited to bring their affected children to the base hospital for a comprehensive eye evaluation. Adherence was defined as returning within 6 months of the recommended follow-up visit. Logistic regression was used to identify factors associated with adherence.

Main outcome measures: Adherence to follow-up; association of adherence with socioeconomic status, caregiver education, prior glaucoma surgery, and travel-related barriers; perceived facilitators for improving follow-up.

Results: Out of 147 caregivers who were interviewed in their homes, 142 reported to the base hospital with the child and were included in the analysis. Of these, 79(56%) remained adherent to follow-up. Caregivers of adherent children were more likely to be better educated (68.3% vs. 42.9% having at least high school education, p=0.018); they were more frequently from urban areas (19% vs. 8%, p=0.084), and more caregivers belonged to upper middle class (17.7% vs. 6.3%, p=0.027). Multivariable logistic regression adjusting for these factors showed that children who had undergone glaucoma surgery were 3.02 times more likely (95%CI=1.21-7.54) to be adherent. Travel distance to the hospital was not associated with adherence. Caregivers reported that cost incentives towards travel and medical expenses would encourage follow-up.

Conclusion: Only half the children with childhood glaucoma remained adherent to follow-up. Lack of prior surgery followed by lower socioeconomic status were the key risk factors. Financial assistance may help improve long term follow-up.