Patient-Reported Outcomes on Quality of Life in Ophthalmology

The goal of every healthcare professional should be to improve the quality
of life (QoL) of his or her patients. Ophthalmic diseases are generally not lifethreatening, which makes ophthalmology an area in health that should perfectly suit QoL research. Integrating QoL into ophthalmic care is not as common as one might expect. The outcomes of interventions in ophthalmology are most often expressed in medical terms which focus on clinical visual and refractive outcomes or on the incidence of complications rather than on their meaning for QoL. In other words, the patient is not asked what he or she thinks about the outcome of treatment. This observation does not imply that medical outcomes should be devalued or replaced by QoL measures, but rather that the latter outcomes must be seen as additional to the more familiar medical outcomes. Nevertheless, for now, we can state that the assumption that all ophthalmologists are quality-of-life experts is incorrect, since some measurements undertaken have not met the aims claimed for them. This thesis focuses on the enhancement of QoL measurement in ophthalmology.
The most common ophthalmic diseases are age-related macular degeneration
(ARMD) and cataract. ARMD results in blurry vision as a result of leaking blood
vessels in the macula of the retina. The deterioration in vision is more or less
irrevocable, as photoreceptors are permanently damaged. In cataract the lens
is opacified, and treatment focuses on replacing the cloudy lens. In contrast to
ARMD with a lasting impact, cataract consequences are generally temporary, as
the patient’s visual function becomes fully restored. These two major diseases with opposite prognoses make it fascinating to perform QoL research in this area, and thus they are the subject of the research throughout the thesis.
There are several applications in which QoL measurements could be integrated
into ophthalmic care, and these measurements can be informative from several
stakeholder perspectives.
(i) The first application is in supporting the formulation of clinical guidelines. For
instance, in macular degeneration, treatment involves frequent multiple visits,
including injections, and there is a risk of complications with every injection. This
thesis presents a QoL assessment that helps to determine the optimal injection
frequency of macular degeneration treatment.
(ii) Another application is with respect to health policy in relation to reimbursement. When contemplating the level of reimbursement in macular degeneration, there is a challenge in evaluating how to incorporate improvements in the worse seeing eye (WSE). This eye is typically dominated by the other eye, so improvements in this eye have limited overall benefits. In this thesis, we shed light on this health economic issue.
(iii) The final stakeholders are doctors and patients. For example, measuring QoL can facilitate communication between doctors and patients in daily clinical
practice, so ophthalmologists can in this situation justifiably state that they are
QoL experts. Hence QoL measurement can be appreciated from both doctor and
patient perspectives.