Abstract
Purpose :
Optic Nerve Hypoplasia (ONH) is a non-surgical vision limiting illness associated with significant caregiver burden. The purpose of this study is to identify and characterize the psychological impact on caregivers using a modified version of the Congenital Glaucoma Caregiver Quality of Life Assessment (CarCGQoL), and depression rating using the Patient Health Questionnaire-9 (PHQ-9).
Methods :
A medical record search was performed using ICD10 diagnostic codes for ONH to determine eligible patients. Caregivers were contacted through e-mail to complete a survey with a total of 3 reminders sent over 1 month. Mean CarCGQoL and PHQ-9 scores were calculated to determine quality of life, and level of perceived caregiver stress.
Results :
Thirty five caregivers of patients with either unilateral (49%) or bilateral (51%) ONH completed the surveys. Mean caregiver age was 40.7 ± 11.3yrs with a majority of caregivers completing at least “some college” (77%) and belonging to a lower socioeconomic status (34%, <35,000 dollars/year). Of respondents, the majority of ONH caregivers identified as mothers (86%) with more than half of their children being diagnosed with bilateral disease and 33% with either ASD or unspecified intellectual disability. As for comorbidities, by caregiver report, only 34% were diagnosed with pituitary dysfunction, approximately 23% of children were diagnosed with an intellectual disability, and 11% diagnosed with autism spectrum disorder (ASD). Bilateral ocular disease had a higher incidence of comorbidities with 53% having pituitary dysfunction compared to 17% in unilateral disease. Patients with ONH were mostly female (57%) with an average age at diagnosis of 1.56 ± 1.92yrs. The mean CarCGQoL score amongst caregivers was 26.4 ± 9.22 and the average PHQ-9 score was 5.8 ± 5.1. Those caregivers who had children with bilateral (65%) versus unilateral disease (22%) rated a lower than average CarCGQoL score (65 vs 22%, p =0.05). On sub analysis, younger than average caregivers and those with income below $35,000 also reported increased stress on both the CarCGQoL (44%) and PHQ-9 surveys (37%).
Conclusions :
Caregivers of children with ONH scored within the mild depressive range for PHQ-9 testing and showed a lower quality of life measure through the modified CarCGQoL survey. Further study is warranted into the availability and effect of support systems for ONH patients and their caregivers.
This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.