June 2022
Volume 63, Issue 7
Open Access
ARVO Annual Meeting Abstract  |   June 2022
Quality of Life Analysis in Patients with Inherited Macular Dystrophies
Author Affiliations & Notes
  • Joshua So
    University of Florida College of Medicine, Gainesville, Florida, United States
  • Sarah Madison Duff
    University of Florida Department of Ophthalmology, Gainesville, Florida, United States
  • Yiqing Song
    Department of Epidemiology, Indiana University, Indianapolis, Indiana, United States
  • Sandeep Grover
    University of Florida Department of Ophthalmology, Gainesville, Florida, United States
  • Jinghua Chen
    University of Florida Department of Ophthalmology, Gainesville, Florida, United States
  • Footnotes
    Commercial Relationships   Joshua So None; Sarah Duff None; Yiqing Song None; Sandeep Grover None; Jinghua Chen None
  • Footnotes
    Support  None
Investigative Ophthalmology & Visual Science June 2022, Vol.63, 3747 – F0168. doi:
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      Joshua So, Sarah Madison Duff, Yiqing Song, Sandeep Grover, Jinghua Chen; Quality of Life Analysis in Patients with Inherited Macular Dystrophies. Invest. Ophthalmol. Vis. Sci. 2022;63(7):3747 – F0168.

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      © ARVO (1962-2015); The Authors (2016-present)

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Abstract

Purpose : Inherited macular dystrophies are a subset of inherited retinal diseases (IRD) that affect central vision over time. Visual impairment can have significant socioeconomic implications. The purpose of our study is to assess the quality of life of patients with inherited macular dystrophy.

Methods : This questionnaire study included 34 patients who were diagnosed with inherited macular dystrophies. The sample population came from the University of Florida Department of Ophthalmology patient base. Each patient was called over the phone to participate 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 (13 males, 21 females) with a mean age of 49.9 +/- 18.3 years (range, 21-78 years) were assessed. 47% of our sample population started having visual difficulties under the age of 18. 12% of participants noticed visual impairments at 19-34 years of age. 21% of participants noticed visual impairments at 35-44 years of age and 17% reported visual losses starting at 45-54 years. At the time of data collection, one patient was still attending school. Of those who have finished school, 36% (12 of 33) only have a high school diploma and 64% (21 of 33) have completed college. 6 of the 12 patients who only finished high school education (50%) reported that it was due to visual difficulties. 30% (10 of 33) of those who were out of school were unemployed (6 females, 4 males). Of the patients who were no longer attending school and unemployed, 60% (6 of 10) stated that they did not have a job due to low vision. 33 out of the 34 patients were insured. Of those who were insured, 12% (4/33) were not fully satisfied with their insurance. In addition, 6% of these patients were reported to have financial or visual difficulties, or both reasons, obtaining vision aids and only 32% had disability insurance.

Conclusions : The results of our study show that inherited macular dystrophy may contribute to lower levels of education, employment rate, and limited access to medical care. Further studies and statistical analysis, such as obtaining vision and visual field data as well as comparing our results to normal population, are required to confirm the contributing factors of the quality of life of patients with inherited macular dystrophy.

This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.

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