Date of Award

January 2014

Document Type

Open Access Thesis

Degree Name

Medical Doctor (MD)

Department

Medicine

First Advisor

Ron A. Adelman

Subject Area(s)

Ophthalmology

Abstract

Barriers to obtaining medical care have been studied extensively across the health care realm. Within ophthalmology barriers to receiving care for cataracts and diabetic retinopathy (DR) have been considered. To the best of our knowledge, the barriers to receiving care for those suffering from age-related macular degeneration (AMD) in the United States have not been explicitly studied. AMD is a disease that disproportionally affects the elderly and when left untreated will often cause legal blindness. Early detection and treatment is essential to avert AMD progression. Studying the way in which patients receive their eye care and what barriers or enabling factors they may experience when receiving this care is crucial.

We hypothesize that barriers to care for patients with age-related macular degeneration are necessarily distinct from those barriers already identified affecting patients with diabetic retinopathy as the patient population is necessarily distinct. This study aims to: 1) to assess patient's understanding of age-related macular degeneration and its disease types, treatment options, and long-term sequelae; 2) to elicit patient's views on and concerns about their eye care; 3) to ascertain the most frequently perceived barriers and enabling factors to seeking care amongst patients with age-related macular degeneration at the Yale Eye Center; and 4) to develop a questionnaire using the information gained from aims 1-3 that can be self-administered by Yale Eye Center age-related macular degeneration and diabetic retinopathy patients.

To accomplish this goal a qualitative approach was taken consisting of semi-structured interviews conducted with Yale Eye Center (YEC) patients with AMD and DR. All interviews were transcribed and coded to identify emerging themes.

We found that patients with age-related macular degeneration have some similar and some unique barriers as compared to patients with diabetic retinopathy. Major deterrents include: 1) confusion and limited knowledge of AMD, 2) access to specialist care, 3) financial constraints, 4) difficulty buying and locating, and unsure of indications for taking, AREDS2, 5) frequency and length of clinic visits, and 6) fear of requiring an intravitreal injection. The key enabling factors that motivated patients to seek care are their positive attitudes about vision and eye care and confidence in their providers.

With the knowledge gained from these semi-structured interviews, physicians can direct their attention to these focal issues in order to provide the best and most effective patient care. A formal questionnaire was developed using the insight gained from these interviews and this will provide large-scale standardized data to make further generalizations in the field.

Comments

This is an Open Access Thesis.

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