Measuring the personal burden of eye disease and vision impairment.

PURPOSE: To describe research methods for assessing the personal burden of eye disease and vision impairment on health and functional well-being.
METHODS: Three methods are described, which are largely complementary of each other. (1) Questionnaires are patient-centered in that they provide the person's own self-reported perspective on difficulty in engaging in everyday activities, psychological well-being, and/or health status. Examples are generic and vision-targeted health-related quality of life instruments, domain-specific questionnaires, and instruments that screen for psychological comorbidities. (2) Direct assessment of actual behavior provides information about the functional competences the patient has. Examples are mobility performance and reading speed. (3) Administrative records maintained by government, healthcare, and other agencies provide information relevant to the existence of adverse or detrimental circumstances that engender decreased health and well-being. Examples are healthcare utilization, employment history, and motor vehicle collision involvement. DISCUSSION: Measures of eye disease severity should not be used in research as surrogates for the personal burden of eye disease and vision impairment. Individuals personally respond to and cope with the presence of eye disease and vision impairment in very wide ranging ways. There are several ways to measure the personal burden of eye disease and vision impairment that provide information about the person's own perspective on his/her health and well-being and functional competences.