Measuring Quality of Life in Macular Degeneration
Patient-reported outcomes are increasingly used in research and clinical practice in ophthalmology as in other medical specialties. Measures of health status , psychological well-being, functional status , and visual function are frequently referred to
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Age-Related Macular Degeneration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2634
2 2.1 2.2 2.3 2.4 2.5
Measuring Quality of Life and Other Patient Reported Outcomes . . . . . . . . . . . . . . 2636 Psychological Well-Being Instruments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2637 Health Status (HS) Measures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2637 Functional Status (FS) Measures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2638 Vision-Specific Functional Status (VF) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2638 Vision-Specific Individualized Quality of Life Measures . . . . . . . . . . . . . . . . . . . . . . . . . . . 2639
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The Value of PROs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2639
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MD-Specific Patient Satisfaction Measures Related to Quality of Life . . . . . . . . . . 2640
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Validation of Questionnaires . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2641
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QALYs and Other Manipulations of PROs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2642
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The Use of PROs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2645 Summary Points . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2645
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Springer Science+Business Media LLC 2010 (USA)
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Measuring Quality of Life in Macular Degeneration
Abstract: > Patient-reported outcomes are increasingly used in research and clinical practice in ophthalmology as in other medical specialties. > Measures of health status, psychological well-being, > functional status, and visual function are frequently referred to as quality of life (QOL) measures and have been used as such in research into macular degeneration (MD). However, such patient-reported outcomes do not measure QOL, although the constructs may be related to or influence QOL. When inappropriate or insensitive measures are used as QOL measures, the findings can be misleading and may lead to incorrect management of patients. Care is needed in the selection of patient reported outcomes (PROs) for use in research and clinical practice to ensure that they are appropriate for the intended purpose. In addition, PROs should be psychometrically validated, demonstrating qualities including face, content and construct validity, internal consistency and test-retest reliability and responsiveness. > Utility values obtained using methods such as > time trade-off and > standard gamble are used to calculate > quality adjusted life years and are frequently referred to as QOL measures.
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