Access to Eye Care Before and After Vision Loss: A Qualitative Study Investigating Eye Care Among Persons Who Have Become Blind.

Navigating access to eye care requires that patients recognize the need for screening and care, employ limited financial and social resources, manage complex health insurance policies, and access specialty clinical care. We investigated the experience of patients through the progression of vision loss to blindness, utilizing qualitative methods. We conducted structured telephone interviews with 28 persons with blindness throughout Oregon. Utilizing closed and open-ended questions, we explored patient experience on the events preceding avoidable blindness. Coding for emergent themes was conducted independently by two researchers using a constant comparative method. Participants described important barriers to accessing eye care: at the systems level, lack of access to providers and treatment; at the community level, available social support and services; and at the individual level, readiness to act and trust in providers. These findings suggest that important barriers to accessing preventive eye care, early diagnosis and treatment, vocational rehabilitation, and social services often occur at multiple levels. Access to eye care should be prioritized in efforts to reduce preventable visual impairment.

Using registry data to characterize the incidence and causes of blindness in Oregon.

In the United States, there is no reliable data to describe the prevalence of eye diseases leading to visual impairment and little active surveillance to address this knowledge gap. Data that is readily available from many state blind registries may provide helpful information on trends and causes of blindness. We analyzed new registrations with the Oregon Commission for the Blind (OCB) and Oregon State Department of Administrative Services (DAS) from 1961 to 2016 for causes of and trends in blindness. Persons with blindness self-refer into the OCB registry and the Oregon State Department of Administrative Services (DAS) includes those receiving social security disability financial support and other state services. Data for 9,273 blind persons registered were analyzed. The most frequent causes of blindness were age related macular degeneration (AMD) 3,308 (38%), followed by diabetic retinopathy (DR) 729 (8%), congenital conditions 697 (8%), optic nerve atrophy 611 (7%), glaucoma 549 (6%), retinitis pigmentosa 546 (6%), retinopathy of prematurity192 (2%), cataract 180 (2%), and trauma 174 (2%). The mean age of onset of blindness was younger for Blacks (31 years) and Hispanics (33 years) than for Whites (44 years). Analysis of state-based registries can provide useful and locally relevant vision and eye health data where little information is otherwise available.

Let's Get Healthy! Health awareness through public participation in an education and research exhibit.

BACKGROUND: Health information technology (HIT) offers a resource for public empowerment through tailored information. OBJECTIVE: Use interactive community health events to improve awareness of chronic disease risk factors while collecting data to improve health. METHODS: Let's Get Healthy! is an education and research program in which participants visit interactive research stations to learn about their own health (diet, body composition, blood chemistry). HIT enables computerized data collection that presents participants with immediate results and tailored educational feedback. An anonymous wristband number links collected data in a population database. RESULTS AND LESSONS LEARNED: Communities tailor events to meet community health needs with volunteers trained to conduct research. Participants experience being a research participant and contribute to an anonymous population database for both traditional research purposes and open-source community use. CONCLUSIONS: By integrating HIT with community involvement, health fairs become an interactive method for engaging communities in research and raising health awareness.