Doctors have long collected surveys to assess the effect of disease on their patients’ ability to achieve a good quality of life (QoL).  Until recently, eye researchers used questionnaires designed for all eye conditions: a keratoconus patient was asked the same questions that a glaucoma or retina patient would be asked.

In 2017, the Save Sight Registry, an Australian research center developed the Keratoconus Outcomes Research Questionnaire (KORQ) that asked about issues relevant to life with keratoconus.

Researchers at the LV Prasad Institute, a world-famous eye center in southern India invited patients attending in their keratoconus clinic to complete the KORQ.  574 patients participated in the study: the mean age was 24 years; most had been diagnosed with keratoconus for more than five years.  Based on their keratometry which measures cornea curvature, participants were assigned to 1 of 4 categories which roughly correspond to mild (<48 Diopters), moderate (48-53 D), advanced (54-55 D) or severe (>55 D) keratoconus.

The authors found that patients at every level of disease reported activity restrictions and symptoms related to their keratoconus.  Females reported a worse quality of life.  The authors suggest that women are more willing to seek help for their symptoms; men may be reluctant to assign limitations or difficulty performing certain tasks.

Although a majority (82%) of respondents held a college degree, 61% of survey participants were not working.  Those who held jobs outside the home complained of eye pain or symptoms that affected their QoL at a greater level than patients who were students or not employed.  One of the chief complaints was discomfort in certain environments.  The authors wrote, “it is possible that working participants were exposed to smoky and dry environments, thereby worsening their pre-existing keratoconus-related symptoms.”

While the patients with the worst cornea curvature (K-readings) tended to report greater trouble, the authors concluded the finding is not universal.  “(S)evere keratoconus may not indicate greater negative impact on the QoL… These patients may develop useful coping strategies.”

Dr. Barry Eiden OD, co-founder and president of the International Keratoconus Academy, who practices at North Suburban Vision Consultants in Chicago stresses communication between patients with KC and their doctors, “As eye care professionals, we typically have limited exposure time with patients.  We often fail to appreciate the impact that the disease has on their lives.”   Eiden added, “We do our best to provide our patients with the best vision possible through all available means, however KC challenges individuals in multiple ways.  It can impact work performance; it can result in chronic ocular discomfort; it can even have dramatic negative influences on social interactions and mental health.  It is imperative that we appreciate the degree that keratoconus influences our patient’s lives regardless of the severity of the disease.

What we learned:  Even mild KC can have a significant impact on Quality of Life.

Reference:  Factors affecting quality of life in keratoconus, Gothwal VK, Gujar R, et al, Ophthalmic Physiol Opt., 42:986-997, 2022.