Employment, Education, Medical Care and Marital Status in Patients with Inherited Retinal Diseases in Florida

Faculty Mentor’s Name: Dr. Jinghua Chen
Email: jinghuachen@ufl.edu
Phone Number: (857) 389-2728
Project Category: Data Collection
International Component or Travel: No

Research Project Description:
Background: Inherited retinal diseases (IRDs) are important causes of blindness that are characterized by progressive dysfunction and death of rod and cone photoreceptor cells leading to vision loss. Together, they have an estimated incidence of 1:2000 and thereby are the one of the leading causes of vision loss between 1 and 45 years of age. Visual impairment in these patients causes difficulty in obtaining education, employment, performing daily activities, getting married and having children. Patients with inherited retinal diseases may also have problems in access of medical care and disability benefit. Hypothesis: We expect visual impairment is correlated with low level of education, low employment rate, low income and negatively affects family life. Their access to medical care, low vision aids and disability benefit maybe limited due to transportation, costs and paperwork requirement. By analyzing these data we would like to obtain useful information to help these patients to improve their quality of life. Methods: This is a questionnaire study. Ophthalmology Department has about 200 patients (by coding search) who were diagnosed with inherited retinal diseases from 2012 to 2020. We will identify these patients in our system and analyze visual acuity and visual field testing to analyze their visual function. We will perform a telephone or in office interview or send out questionnaire by mail. The results will be analyzed by t-tests or z-tests. Role of medical student: to help design the questionnaire, perform the interview, collect and analyze the data.