Abstract
Purpose :
Retinitis Pigmentosa (RP) is an inherited retinal disease (IRD) with progressive loss of night and peripheral vision. We conducted this survey study to assess the quality of life of patients with RP.
Methods :
A questionnaire study was performed on 34 RP patients from the University of Florida Department of Ophthalmology’s patient base. Each patient was called over the phone to take part in the survey. Data on education, employment, and medical care status were collected. Each of their responses were then analyzed collectively with other patients’ responses.
Results :
A total of 34 patients with RP (10 males, 24 females) with a mean age of 55.1 +/- 18.9 were assessed (range, 21-91 years) 76% of patients (26 of 34) noticed visual difficulties under the age of 18. At the time of data collection, one patient was still attending school. Of those who finished school, 33% of patients who graduated (11 of 33) only have a high school diploma, while 58% (19 of 33) have a college degree. Three patients only completed primary education. 11 of the 33 patients reported that they did not finish all the education they had intended to complete. Two of the 11 patients reported that they could not finish their education due to visual difficulties. 42% (14 of 33) of those who were no longer in school were unemployed (9 females, 5 males). Of the 42% who were unemployed, 57% of patients did not have a job due to vision. 33 out of 34 patients (97%) were insured. Of those who were insured, 18% (6 of 33) were not satisfied with their insurance. 29% of patients had financial and visual difficulties obtaining visual aids and only 53% have disability insurance.
Conclusions :
The results of our study show that RP may affect the levels of education, employment, and access to medical care. Further studies and statistical analysis, such as obtaining vision, visual field, and optical coherence topography (OCT) data as well as comparing our results to normal population, are required to identify and confirm the contributing factors of the quality of life of patients with RP.
This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.