BLOG: Effective keratoconus management can improve quality of life
Click Here to Manage Email Alerts
Decades of research has revealed that people with keratoconus experience significantly impaired vision-related quality of life, similar to that of patients with severe age-related macular degeneration.
A 7-year follow-up of the Collaborative Longitudinal Evaluation of Keratoconus (CLEK) Study cohort further demonstrated that vision-related quality of life (V-QoL) continues to decline over time, with the largest declines associated with a 10-letter loss of visual acuity and/or a 3.0 D increase in corneal curvature (Kymes, et al). Worsening keratoconus (KC) severity is associated with significant declines in reading, mobility and emotional well-being quality of life scores (Tan, et al).
A complex relationship
While it is not surprising that poor visual acuity would have a negative impact on quality of life, the relationship is more complex than that. The quality-of-life impact can be out of proportion to the degree of vision loss, with substantial reductions even when the better-seeing eye has normal or near-normal vision (Kandel, et al).
We often hear about a “KC personality,” to the point that there is some stigma associated with the disease. It has been documented that KC patients are more likely to have struggled with aggression, sadness and suicidal thoughts than their non-KC peers and are significantly more likely to have psychiatric disorders (35% vs. 22% of controls, P = 0.042). Similar findings were reported last year by Yildiz and colleagues, who found that the rate of depression, anxiety and other psychiatric diagnoses in KC patients (37.2%) was much higher than the overall population. The cascade of problems associated with KC-related mental health problems was dramatic: reduced physical and social functioning, lower emotional well-being, role limitation due to emotional problems, lower energy and more pain (Signorelli, et al). Of note, the mean age of patients in this study was 23.9 years.
The age of onset of KC is likely at the root of why these patients are struggling as much as they are, with or without advanced vision loss. Remember, their V-QoL is similar to that of advanced AMD, a condition we see in older patients. But KC patients are experiencing that same level of vision loss — and anxiety about the future impact of their disease — at an age when their peers are finishing school, launching careers and starting families, so it has the potential to have a much greater impact on the trajectory of their lives.
I recall a 27-year-old KC patient of mine who felt like he had missed out on many milestones in his teen and early adult years. After he was treated and fit with contact lenses, he was able to get a driver’s license for the first time, which had a huge impact not only on him but also on his wife, who had been driving him to work every day.
A valuable lifeline for KC patients
The good news is that effective management of KC can improve patients’ quality of life. Several reports have shown lower levels of anxiety and better vision- and health-related quality of life after cross-linking treatment (Cingu, et al; Pinto, et al). Modeling demonstrates that cross-linking with the FDA-approved iLink system (Glaukos) could result in 28 fewer years spent in the advanced stages of KC, significant patient and societal cost savings, and gains in quality-adjusted life years (Lindstrom, et al).
Early detection is critical to preserve vision and long-term quality of life. While cross-linking might not itself improve the patient’s vision, it can stabilize the condition and give the patient hope of avoiding further progression and a future transplant. Successful fitting in scleral lenses can also improve visual acuity and lead to significant improvements in visual functioning and socioemotional well-being (P < 0.0001) (Kreps, et al).
This hope can be a valuable lifeline for KC patients. In our next blog post, we’ll identify resources to help empower your patients with information and connections to others who are experiencing KC.
References:
- Cingu AK, et al. Eye Contact Lens. 2015;doi:10.1097/ICL.0000000000000129.
- Kandel H, et al. Clin Exp Ophthalmol. 2022;doi:10.1111/ceo.14050.
- Keratoconus patients are more likely to have psychiatric disorders, study shows. https://www.healio.com/news/ophthalmology/20120331/keratoconus-patients-are-more-likely-to-have-psychiatric-disorders-study-shows. Published May 3, 2007.
- Kreps EO, et al. Cornea. 2021;doi:10.1097/ICO.0000000000002518.
- Kymes SM, et al. Am J Ophthalmol. 2004;doi:10.1016/j.ajo.2004.04.031.
- Kymes SM, et al. Am J Ophthalmol. 2008;doi:10.1016/j.ajo.2007.11.017.
- Lindstrom RL, et al. J Med Econ. 2021;doi:10.1080/13696998.2020.1851556.
- Pinto RDP, et al. Sci Rep. 2021;doi:10.1038/s41598-021-92346-1.
- Tan JCK, et al. Cornea. 2019;doi:10.1097/ICO.0000000000001899.
- Yildiz M, et al. J Psychosom Res. 2021;doi:10.1016/j.jpsychores.2021.110384.
For more information:
Katie Greiner, OD, MS, MBA, FAAO, is a practicing optometrist and CEO at Northeast Ohio Eye Surgeons, with locations in Stow, Kent, Akron, Medina and Wadsworth.
Collapse