Corneal collagen cross-linking (CXL) halts or slows the progression of keratoconus (KCN). This stabilizes the cornea and preserves patients’ vision and vision-correction options for the future. Thus, patients who required vision correction before CXL will still need such correction after the procedure, although the prescription or lens fit may change. This can streamline refractive correction, while creating patient satisfaction and loyalty to a practice. Despite these benefits, it is not uncommon for KCN patients to forgo CXL.

To change this, I make a concerted effort to both identify and break the barriers to CXL I see in my practice.

Here, I discuss these four barriers, along with their related solutions, which have increased the likelihood of CXL buy in.

BARRIER 1: SKEPTICISM THE DIAGNOSIS IS SERIOUS

I find that parents who bring their teens in for an annual exam expecting to get a new prescription and pick out some new frames, are, therefore, not in the mindset to hear their child has a sight-threatening disease.

Additionally, I have discovered that independent young adults can be even more challenging to convince of the diagnosis and urgency of treatment. Let’s face it: Degenerative health issues are certainly not top of mind for this age group who often view themselves as “invincible.”

According to one study, even among those patients who were specifically recommended to undergo corneal topography to rule out KCN, the majority (72%) did not follow through with this recommendation. The reasons cited were lack of time (12%), cost (28%), lack of availability (24%), and considering their symptoms minor (36%).¹

Something else to consider: The biggest reason newly diagnosed KCN patients hadn’t seen a doctor earlier about their vision changes was that 67% of them considered it to be a minor problem.¹

Solution. I am an advocate for doctor-to-patient education about the seriousness of the condition. I do just that by discussing with patients KCN’s expected course over time, and referring to the Collaborative Longitudinal Evaluation of Keratoconus Study, highlighting that people who have KCN report significantly impaired vision-related quality of life that continues to decline over time when left untreated.²

Additionally, I show parents of KCN patients and KCN patients themselves images that illustrate the difference between a KCN cornea and a normal one.

Also, I reveal KCN progression and resulting VA changes through quantifiable, diagnostic data from technologies, such as topographers, OCTs, and VA testing systems, respectively.

Further, I provide online resources, including LivingWithKeratoconus.com and NKCF.org .

BARRIER 2: PROCEDURE COST

I discovered that the perceived cost of CXL is another reason patients are reluctant to undergo the procedure.

Solution. To break this barrier, my staff and I educate parents of and KCN patients themselves on the fact that most commercial insurance companies now cover FDA-approved CXL when there is documented evidence of KCN progression.³

Additionally, we mention there is a co-pay assistance program from Glaukos available to patients that can help cover some out-of-pocket expenses. (See bit.ly/GlaukosPatientAssistanceCXL .)

BARRIER 3: FEAR

We know all too well that fear goes hand-in-hand with any procedure. When it comes to an ocular procedure, that fear may be elevated. After all, in addition to anxiety about any possible associated pain, complications, and procedure failure, the patient is afraid their vision could decline or be lost.

Solution. I effectively manage patients’ fear of CXL by providing statistics that illustrate its success, what the patient can expect both immediately before and after the procedure, and the risk of not undergoing CXL. I reassure patients that CXL has a proven track record. It is well understood by the ophthalmologic community, and it carries a very low complication rate — the benefits far outweigh the risks. Additionally, I emphasize that without CXL, KCN progression can happen rapidly in some patients, and that there is no way to predict who will or won’t need a corneal transplant. For this reason, I tell patients that if we wait to “see how bad it gets” before making a treatment decision — a natural inclination on the part of many patients — it may be too late to reverse any damage. I continue that, by intervening early, we can slow or halt disease progression to help prevent vision loss. With parents, I explain that academic performance and social development are known to be heavily influenced by visual dysfunction. Therefore, I tell parents that it’s imperative to manage progressive pathologies as early as possible during the developmental years.

BARRIER 4: SCHEDULING LOGISTICS

I find that another reason for putting CXL off is patient scheduling conflicts. The procedure itself is relatively quick, however, frequent follow-up appointments are necessary to monitor results.

Solution. Given that CXL is often indicated for young patients who may still be in school, I overcome this barrier by recommending the procedure be scheduled early in a break from studies, so it’s less disruptive. Having this time also allows for the aforementioned frequent follow-up appointments to monitor healing in the early post-operative period.

KEEPING THE DOOR OPEN

Sometimes, despite my best efforts, patients don’t follow through on referrals for treatment. The good news: There are some things I can do to keep the door open for a CXL procedure sooner rather than later. One is to schedule more frequent follow-up appointments for those in imminent danger of disease progression, specifically, every three to six months. Of interest: One study shows that patients diagnosed with progressive KCN before the COVID-19 pandemic and who experienced, on average, a six-month delay in care lost a line of vision and saw their keratometric indices worsen during that time.⁴ According to tomography-based algorithms, 70% of these patients’ KCN progressed. Other studies reveal KCN progression in a matter of months.^5,6 Such information can be used to create patient compliance to follow-up appointments. OM

References:

1. Lindstrom RL, Berdahl JP, Donnenfeld ED, et al. Corneal cross-linking versus conventional management for keratoconus: a lifetime economic model. J Med Econ 2021;24(1):410-20.
2. Kymes SM, Walline JJ, Zadnik K, et al., Collaborative Longitudinal Evaluation of Keratoconus (CLEK) Study Group. Changes in the quality of life of people with keratoconus. Am J Ophthalmol 2008;145(4):611-17.
3. Dudeja L, Chauhan T, Vohra S. Sequence of events leading to diagnosis of keratoconus and its impact on quality of life. Ind J Ophthalmol 2021;69(12):3478-81.
4. Shah H, Pagano L, Vakharia A, et al. Impact of COVID-19 on keratoconus patients waiting for corneal cross linking. Eur J Ophthalmol 2021;31(6):3490-3.
5. Goh YW, Gokul A, Yadegarfar ME, et al. Prospective clinical study of keratoconus progression in patients awaiting corneal cross-linking. Cornea 2020;39(10):1256-60. 
6. Romano V, Vinciguerra R, Arbabi EM, et al. Progression of keratoconus in patients while awaiting corneal cross-linking: a prospective clinical study. J Refract Surg. 2018;34(3):177-180.

DR. BRUNS is in practice at Summit Eye Care in Milwaukee, Wis. He is a consultant for Glaukos, RxSight, and Staar Surgical. Contact him at nbruns@summiteyecareclinic.com.