Health care stakeholder perceptions of vision loss

Abstract

Perceptions of the quality of life (QOL) associated with vision loss vary widely. Herein, we consider the perceptions of patients with vision loss as the criterion for QOL quantification associated with vision loss. With the QOL instrument, time tradeoff utility analysis, the upper anchor of 1.00 is associated with permanent normal vision, whereas the lower anchor of 0.00 is associated with death. A time tradeoff utility of 0.26 is associated with no light perception bilaterally. Patients with legal blindness in the US (≤20/200 vision bilaterally) have a mean time tradeoff utility of 0.47. The general public, however, associates legal blindness with a time tradeoff utility of 0.86. Thus, legally blind patients consider their QOL loss from blindness to be 279% (1.00-0.47/1.00-0.86) worse than does the American public. Public estimates of the QOL loss from blindness (utility = 0.86) suggest it is less debilitating than patient QOL estimates for migraine headaches (utility = 0.83). The mean medical student blindness utility estimate is 0.86, whereas that for non-ophthalmic physicians is 0.82. Ophthalmologists underestimated the QOL associated with vision loss in macular degeneration patients by 96%-750%. Underestimating the QOL loss from blindness likely diminishes the perceived benefit of blindness interventions. Minimization of interventional benefit by underestimating patient impairment from vision loss could lead to adverse consequences for patients with vision loss, for vision research, for and those who treat vision loss.