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J.E. Keeffe, J. Barton, L.L. Harris, L.M. Weih; Dimensions of Quality of Life of People with Vision Impairment . Invest. Ophthalmol. Vis. Sci. 2003;44(13):1274.
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© ARVO (1962-2015); The Authors (2016-present)
Purpose: To determine the content for a vision-specific quality of life utility measure to be used to evaluate the outcome of eye care and rehabilitation programs. Methods: Three focus group discussions were conducted. The causes of vision loss among the participants included macular degeneration, glaucoma, retinitis pigmentosa, diabetic retinopathy and genetic and congenital causes. A semi-structured approach was used to conduct the groups. Grounded theory techniques were used to analyse transcripts and observer notes from the discussions. Results: A total of 27 participants ranged in age from 34 to 90 years; 70% were female. All participants had low vision, with the majority severely visually impaired (VA<6/60). Across the three focus groups, both intrinsic and mediating factors were revealed that facilitate participation and enhance quality of life. Intrinsic factors were defined as issues concerning the self, such as independence, social well-being, emotional well-being, physical well-being, and self-actualisation. Mediating factors, such as planning, organization and strategic development, were defined as facilitating quality of life and participation but were not an internal process or state of well-being. In addition, when presented with a time trade-off scenario, younger participants seemed to be less willing to trade time, particularly when family and dependent children were influencing willingness to trade. Conclusion: Six areas were identified from the focus groups that were specific to vision impairment and not covered in generic quality of life instruments. The range and number of content areas justified the use of a multi-attribute vision-specific utility instrument. The questionnaire now under development will be used in cost utility analysis to calculate cost per QALY of eye care and rehabilitation interventions.
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