GEOGRAPHIC ATROPHY DISEASE BURDEN- NEED FOR BETTER CHARACTERIZATION
Author(s)
Schmier J1, Rajput Y2, Patel SS3, Singh RP4, Nielsen JS5
1Exponent, Alexandria, VA, USA, 2Genentech, Inc., South San Francisco, CA, USA, 3West Texas Retina Consultants, Abilene, TX, USA, 4Cole Eye Institute, Cleveland, OH, USA, 5Wolfe Eye Clinic, Wolfe Surgery Center, West Des Moines, IA, USA
OBJECTIVES: To identify knowledge gaps around the burden of illness of geographic atrophy (GA), we conducted a literature review and used findings to guide interviews with GA patients, caregivers, and healthcare providers (HCPs) who treat GA patients. METHODS: Peer-reviewed publications describing the use of an instrument, survey, or other assessment tool to report the impact of GA were identified using PubMed (January 2000 to September 2015), a pearl-growing approach, and independent internet searches. Patients with symptomatic GA (n = 8), their caregivers (n = 6), and HCPs (n = 5) were interviewed using tailored guides to identify topics that would further help understand the burden of illness of GA. RESULTS: Only 1 out of 318 articles reviewed reported GA-specific findings; other articles reported data for advanced age-related macular degeneration (AMD) and did not differentiate between advanced AMD and GA. A single study described direct medical costs in GA, but there were no GA-specific data on indirect costs related to caregiving, transportation, or lost income. Studies on the mental health burden of GA were lacking. Patients reported that GA affected household chores, visiting restaurants, social outings, sports and outdoor hobbies, participating in religious activities, and long-distance travel. Patients also reported direct out-of-pocket expenses for low vision aids. Caregivers reported modifying schedules, providing transportation, and other assistance. HCPs identified mental health issues and variable compliance with low vision aids as relevant to GA patients. CONCLUSIONS: The literature review found very little published information on the impact of GA. There is no consensus on the dimensions of functioning relevant to GA patients or the instruments used to assess them. The interviews highlight the impact of GA on patients’ and caregivers’ social functioning, quality of life, mental health, indirect resource use, and out-of-pocket costs and provides guidance for designing future burden of GA studies.
Conference/Value in Health Info
2017-05, ISPOR 2017, Boston, MA, USA
Value in Health, Vol. 20, No. 5 (May 2017)
Code
PSS27
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Sensory System Disorders