BLOG: 4 ways optometrists can help patients navigate keratoconus
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Patients with keratoconus are known to have higher rates of depression, anxiety and other psychiatric diagnoses compared with the general population.
As Dr. Katie Greiner explained in her recent blog post, this is due in part to the significant impact that keratoconus (KC) — a rare and sight-threatening disease — can have on vision-related quality of life.
Optometrists often feel ill-equipped to handle mental health aspects of corneal disease. Unfortunately, if mental health is not addressed, it can cripple patients’ ability to cope with other practical, financial and access-to-care hurdles they already face with KC.
From our perspective, there are four steps optometrists can take to help their KC patients succeed. The first is to normalize the idea that mental health impacts from a sight-threatening disease are to be expected. It doesn’t mean the patient is “crazy” or can’t cope with their problems.
There are many reasons these patients might need extra support to navigate KC. They may be dealing with functional deficits due to vision loss, social isolation and anxiety about a poorly understood disease and treatment course. Young KC patients often feel completely out of step with their peers who aren’t dealing with chronic health problems and are grieving a perceived loss of normalcy. It’s OK for them to ask for help.
Second, be clear and direct with patients that cross-linking is an excellent treatment to slow or stop KC progression, that specialty contact lenses can greatly improve vision, and that blindness from KC is extremely rare, although they may experience glare, halos and other visual compromises.
Fear of blindness profoundly affects people — even when a professional might not view them as being at particularly high risk. In fact, the fear of vision loss can drive noncompliant behaviors: Patients cancel appointments or take other counterintuitive steps to avoid feelings that arise from thinking about their disease.
Third, offer referrals to local mental health counselors. It can be hard for patients to say they are struggling with anxiety or depression, so asking a simple question about whether they would like to speak with someone and providing a printed referral sheet can make a big difference.
Take time to identify local resources, including support groups, mental health services, therapists and social workers, and keep a list of contact information for these local wellness resources on hand. KC patients may have the most success with a therapist who works with anxiety and has experience with other chronic diseases, such as diabetes. We recommend viewing this as simply helping the patient build their team of health care providers, just as with any other referral.
Finally, KC can be very isolating and confusing. Patients may be worried about cross-linking or corneal transplants and not know what questions to ask. They may not have ever heard of scleral lenses and need some handholding to be successful with this modality.
In these situations, social media and “Dr. Google” can be both a blessing and a curse — lessening the sense of isolation but also opening the door to misinformation and bad advice. You can help by directing patients to reputable online. Not only can these resources be a huge help to patients, but they can also limit the chair time you need to spend educating and coaching your patients along their KC journey.
Here are some suggestions:
- www.LivingWithKeratoconus.com: This Glaukos-sponsored site offers patient-friendly information about keratoconus, cross-linking and insurance coverage. It includes a “keratoconus journeys” section featuring the stories of dozens of real patients with keratoconus.
- www.NKCF.org: The National Keratoconus Foundation website offers reading material, webinars, podcasts and a helpline for patients at all stages of KC. The organization founded and supports World KC Day, which takes place annually on Nov. 10.
- www.DryEyeFoundation.org: This organization is not just for dry eye sufferers — it also offers education, patient advocacy and support for those with KC and particularly for scleral lens wearers. Find links to Zoom support groups for scleral lens wearers and a link to the “My Big Fat Scleral Lens” Facebook group, both of which are moderated by optometrists.
- www.DryEyeZone.com: Affiliated with the Dry Eye Foundation, this site offers blogs, articles and clinical trial news about corneal conditions, including KC.
- www.DryEyeShop.com: A commercial entity run by the executive director of the Dry Eye Foundation, this site is a good source for hard-to-find tools and supplies for scleral lens wearers. It also features helpful tutorials about scleral lenses and information on product recalls and backorders.
- Keratoconus Group: A patient-led Facebook and Reddit group with several thousand members. It is not moderated by ODs, but several are members and comment in the forum.
For more information:
Gloria B. Chiu, OD, FAAO, FSLS, is an associate professor of clinical ophthalmology at the University of Southern California Keck School of Medicine and Roski Eye Institute. Rebecca Petris is founder and executive director of the Dry Eye Foundation. Mary Prudden, MS, JD, is director of the National Keratoconus Foundation.
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