Each month, more scientific articles are published about medical outcomes of cross-linking (CXL). There has been much less written about patient satisfaction with the procedure.
The Cornea Research Foundation of America conducted a patient satisfaction surgery of patients who had CXL at the Price Vision Group from February 2008 to March 2016 when the procedure was approved by the FDA. The Price Vision Group is an ophthalmology practice located in Indianapolis, Indiana. Dr. Francis Price is a leader in KC treatment and has been a participant in several CXL clinical trials.
448 study subjects (349 keratoconus and 99 treated for post-refractive surgical ectasia) completed an electronic survey. This is an 80% response rate of the total number of treated patients (n=552). There was an average of 3.5 years between procedure and the completion of the survey. While there may be limitations due to self-reported outcomes, the responses are worth reviewing.
We’ve long thought it was important to catch and treat KC at an early stage because CXL can prevent further progression, but it does not reliably reverse the corneal changes that have already occurred. The survey results confirm the importance of early intervention – patients treated at a younger age and an earlier stage of KC were more satisfied and more likely to report visual improvement.”
– Dr. Marianne Price, PhD, lead author of the article
The results of the survey showed that the majority (92%) of those with mild KC reported that their vision had improved or not changed, and only 7% reported that their vision continued to worsen after treatment. In the group of patients who had moderate to severe KC, the percentage who believed their vision had declined was 20%, while 80% reported that their vision had improved or not changed.
Patients who were under the age of 20 when they were treated were also happier with the results. In that group, 95% believed the treatment was effective. In the age group 21 – 40, a slightly lower percentage (89%) reported the treatment was effective, and in the population over 40 years of age, the positive response was 82%.
When asked whether they would recommend CXL to a friend, the mean response from KC patients was 8.8 1.7 (SD) on a scale ranging from 1 (would not recommend) to 10 (definitely would recommend). The survey considered those who responded with a 9 or 10 as strongly satisfied. The strongly satisfied proportion was highest (68%) among those with mild KC and slightly less (61%) among those with moderate to severe KC.
One important take away point from this survey is that CXL does not result in 100% patient satisfaction. A minority may find that the treatment does not stop progression of their symptoms. An very encouraging finding is that most patients, especially those who are younger and whose KC is mild when they undergo treatment, are highly satisfied, report that their vision stabilizes and in some cases improves, and would recommend the treatment to others.
Price MO, Feng MT and Price FW, Patient satisfaction with epithelium-off corneal crosslinking, J Cataract Refract Surg 44:323-326, 2018