June 2017
Volume 58, Issue 8
Open Access
ARVO Annual Meeting Abstract  |   June 2017
Patient-, caregiver-, and healthcare provider-reported burden of geographic atrophy
Author Affiliations & Notes
  • Sunil S Patel
    West Texas Retina Consultants, Abilene, Texas, United States
  • Rishi P Singh
    Cole Eye Institute, Cleveland Clinic, Cleveland, Ohio, United States
  • Jared S Nielsen
    Vitreoretinal Diseases and Surgery, Wolfe Eye Clinic, Wolfe Surgery Center, West Des Moines, Iowa, United States
  • Jordana Schmier
    Exponent, Alexandria, Virginia, United States
  • Yamina Rajput
    Genentech, Inc., South San Francisco, California, United States
  • Footnotes
    Commercial Relationships   Sunil Patel, Alcon (F), Allergan (C), Allergan (F), Genentech, Inc. (C), Genentech, Inc. (F), Ophthotech (F), Regeneron (F); Rishi Singh, Alcon (C), Alcon (F), Apelly (F), Genentech, Inc. (C), Genentech, Inc. (F), Neurotech (F), Regeneron (C), Regeneron (F), Shire (C); Jared Nielsen, Alcon (F), Allergan (F), Genentech, Inc. (C), Ophthotech (F), Regeneron (C), Regeneron (F); Jordana Schmier, Genentech, Inc. (F); Yamina Rajput, Genentech, Inc. (E)
  • Footnotes
    Support  Genentech, Inc., South San Francisco, CA, provided support for the study and participated in the study design and data interpretation.
Investigative Ophthalmology & Visual Science June 2017, Vol.58, 1523. doi:
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    • Get Citation

      Sunil S Patel, Rishi P Singh, Jared S Nielsen, Jordana Schmier, Yamina Rajput; Patient-, caregiver-, and healthcare provider-reported burden of geographic atrophy. Invest. Ophthalmol. Vis. Sci. 2017;58(8):1523.

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

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Abstract

Purpose : To understand the burden of illness of geographic atrophy (GA) from patient, caregiver, and healthcare provider (HCP) perspectives, and identify key factors that should be assessed in future studies of GA patients.

Methods : This cross-sectional qualitative study recruited patients with symptomatic GA, identified through a review of medical records, and their caregivers at 2 US clinics. HCPs who treat patients with GA were also interviewed. Interview guides were tailored for patients, caregivers, and HCPs to evaluate the understanding of the disease, costs and burden of illness, use of vision aids, and impact on emotional/psychological well-being and activities of daily living.

Results : Eight patients (6 male, 2 female), 6 caregivers (4 spouses, 1 friend, 1 paid caregiver), and 5 HCPs (3 ophthalmologists, 2 optometrists) were interviewed. Patients reported that GA affected driving, preparing food, visiting restaurants, pursuing sports and outdoor hobbies, participating in religious activities, and long-distance travel (Figure 1). Three of 8 patients reported making changes at work, such as reducing or adjusting hours, due to vision impairment. All 8 patients reported use of at least 1 vision aid; 7 out of 8 purchased the aids out-of-pocket. Caregivers reported modifying their schedules to provide assistance and expressed frustration over their inability to improve patients’ health and well-being. HCPs noted the emotional impact of vision loss, particularly feelings of isolation, as a major concern in GA patients and reported informal screening for psychological well-being. HCPs acknowledged difficulty in identifying accidents/injuries attributable to GA since age and comorbidities also contribute to gait and mobility issues.

Conclusions : This pilot study identified the impact of GA on patients’ and caregivers’ social functioning and quality of life, direct patient out-of-pocket costs for low vision aids, as well as indirect resource use, including caregiving needs (Figure 2). Identifying accidents and injuries directly attributable to GA-related loss of visual function, which may add to the cost and burden of illness, is an important and relevant topic for further investigation, as is the impact of GA on mental health. More research is needed to further quantify the burden of illness of GA on patients and their caregivers.

This is an abstract that was submitted for the 2017 ARVO Annual Meeting, held in Baltimore, MD, May 7-11, 2017.

 

What impact does GA have on patients?

What impact does GA have on patients?

 

Perspectives on the burden of illness of GA

Perspectives on the burden of illness of GA

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