BLOG: The cross-linking conversation
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Key takeaways:
- The decision to choose cross-linking should be shared by the physician and the patient.
- Fear, logistics, apathy/denial and cost are barriers that physicians may have to address with patients.
Given that the Gavin Herbert Eye Institute at UC Irvine is a referral center, most of the keratoconus patients we see have already been diagnosed elsewhere, or at least told they are suspected to have keratoconus.
We have made it a point to educate our referral network on every aspect of keratoconus management. Once a patient is referred to us, we confirm the diagnosis, determine whether the patient is progressing, and recommend corneal collagen cross-linking based on evidence of progression.
While I do want to convey that keratoconus is a serious condition, I don’t like to use high-pressure scare tactics. My goal is for the decision to move forward with cross-linking to be a shared decision between the doctor and patient (or parents). For those of us who are cornea specialists, the decision to undergo cross-linking would be an easy one, but there are a number of barriers patients may face, and it’s important that we know how to address each of these without coming across as judgmental or dismissive.
- Fear. Some patients have what may seem like an unreasonable amount of fear or anxiety about the procedure. Some people simply need more information about the risk of treatment vs. the risk of waiting. Recently, I treated a woman with severe keratoconus whose life had already been impacted by vision loss. However, she had put off cross-linking out of fear of not being able to sit through a long procedure. We discussed options for sedation and went over each step of the procedure with her, reassuring her that she would have opportunities to shift positions or close her eyes at intervals during the 90-minute procedure. It is important to discuss the potential for discomfort after treatment, given that the cornea has such a high concentration of nerves. But I tell patients that it is rare for discomfort to persist beyond the first 24 hours and that we can help them get through that early stage with oral pain relief.
- Logistics. Typically, I treat the worse eye first and then wait until that eye is stable and providing useful vision before cross-linking the fellow eye. However, that can mean the patient will have to schedule approximately a week off from school or work twice within a 3- to 12-month period. This can be a real burden for patients, as can arranging for a driver or other assistance if they are physically distant from a cross-linking provider. We try to work around scheduling and staging barriers with each patient on an individual basis. We do need to set realistic expectations about the time it will take for vision to stabilize and for new contact lenses (if needed) to be fit. Cross-linking is a long-term solution — not a quick fix.
- Apathy and denial. Some patients struggle to understand that they have a progressive disease, especially when they start out with good vision and no symptoms. Sometimes they tell us, “Oh, it’s not too bad. I’ll come back when it bothers me.” More commonly, however, they just don’t schedule surgery or return our calls. Ideally, these patients should be followed regularly — by us or by the referring doctor — even if they initially decline treatment. Here again, we have to find a balance in educating about the risks of keratoconus progressing without using scare tactics.
- Cost. Although more than 96% of the commercially insured population has access to the FDA-approved iLink cross-linking procedure (Glaukos) that we offer, cost can still be a barrier for uninsured/underinsured patients and those with state-funded insurance. We have tried to keep our costs low to preserve access to this important procedure that can help patients preserve vision and avoid the need for a future corneal transplant (which is even more costly). We encourage staff to help patients figure out their out-of-pocket contribution (which can vary considerably, especially for patients on high-deductible insurance plans) and offer financing options. In many cases, it can be financially better for the patient to schedule cross-linking of both eyes and fitting of medically necessary contact lenses within the same calendar year to avoid meeting a deductible twice. Providers should know that there are several programs to help patients with costs, including the iLink Copay Savings Program and the iPath360 program that provides reimbursement support to providers.
Cornea specialists who see patients referred in from elsewhere may only have one chance to impress upon patients the critical need for cross-linking to slow or halt progression of a sight-threatening disease. Having a team that can support the patient in fully understanding the procedure, its risks and benefits, costs and scheduling is essential to success. Additionally, we always follow up with notes to the referring doctor so that the cross-linking conversation can continue in their office, if necessary.
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