Abstract
Purpose :
Retinitis Pigmentosa (RP) and inherited macular dystrophies (IMD) are two categories of inherited retinal diseases (IRD). RP causes progressive loss of night and peripheral vision and IMD affects central vision. We conducted this survey to study the quality of life of patients with RP and IMD.
Methods :
A questionnaire study was performed on 34 IMD patients and 34 RP patients from the University of Florida patient base. Each patient was called over the phone to take part in the survey. Data on education, employment, medical care status and mental health were collected. Statistical analysis to identify significance was conducted using chi-square tests.
Results :
A total of 34 patients with RP with a mean age of 55.1 +/- 18.9 (21-91 years) and 34 patients with IMD with a mean age of 49.9 +/- 18.3 (21-78 years) were assessed. At the time of data collection, one patient from each group was still attending school. Of those who finished school, 33% of RP patients and 36% of IMD patients only have a high school diploma (p > 0.05), while 58% of RP patients and 64% of IMD patients have a college degree (p > 0.05). 42% of RP patients and 30% of IMD patients were unemployed. Of the unemployed, 57% of RP patients and 60% of IMD patients did not have a job due to vision (p > 0.05). 97% of both groups were insured. 53% of RP patients and 32% of IMD patients have disability insurance. 48% of RP patients reported depressive symptoms compared to 62% of IMD patients (p > 0.05). The combined data of 68 patients with IRD showed taht 70% of patients with visual acuity of 20/200 or worse reported depressive symptoms, compared to just 43% of patients with visual acuity better than 20/200 (p = 0.028). 76% of patients with IRD who were unemployed reported depressive symptoms, compared to only 44% of patients who were employed or retired (p = 0.011).
Conclusions :
The results of our study show that the difference in education, employment, access to medical care and depression between patients with RP and patients with IMD is not statistically significant. However, overall patients with IRD are more likely to experience depressive symptoms and lower quality of life when their visual acuity is 20/200 or worse. Unemployment status of patients with IRD are more likely to have worse mental health.
This abstract was presented at the 2024 ARVO Annual Meeting, held in Seattle, WA, May 5-9, 2024.