This month’s issue of Review of Cornea & Contact Lenses highlights the trials and tribulations of managing patients who have keratoconus or another corneal thinning disorder. This group of patients needs our support not only from a clinical perspective, but also in the area of patient advocacy. Though a simple concept in theory, to properly advocate for this group of patients, we need to understand the factors that affect their lives beyond what we see at the slit lamp.

Several quality-of-life studies have demonstrated just how severely these patients’ lives are impacted.1,2 Lower quality-of-life scores on the NEI tool in keratoconic patients correlated with binocular visual acuity worse than 20/40.1 Additionally, steep keratometric readings (greater than 52D) were associated with lower scores concerning mental health, ocular pain tolerance and driving ability.1 

Unsurprisingly, patient vision in the best eye is the most significant predictor of quality-of-life scores.2 Additional findings demonstrate that patients in this group also have between category three and category four age-related macular degeneration (AMD), and that overall ocular pain was worse than AMD scores. 

“Keratoconus is a disease of relatively low prevalence that rarely results in blindness,” one group concluded, “but because it affects young adults, the magnitude of its public health impact is disproportionate to its prevalence and clinical severity.”1 This decline in quality of life continues over time, with a plurality demonstrating a significant decline further on.3

Making a Difference
Where then, does advocacy fit in? Support groups for keratoconus patients include the National Keratoconus Foundation and Global Keratoconus Foundation. Both organizations provide resources such as written materials for eye care practitioners and information for patients.

Another resource, the International Keratoconus Academy—a recently-founded organization for eye care professionals—also offers an array of professional education and scientific development on this topic. According to Barry Eiden, OD, the organization’s cofounder and president: “Our mission is to promote and develop the knowledge of keratoconus and other forms of corneal ectasia, and further promote the awareness and understanding of the most appropriate and effective treatment strategies for the management of these diseases.” Those interested in further information can visit the organization’s website at 

Strength in Numbers
I’m constantly reminded that we play a personal and vital role in the management and support of every single patient we see daily. Having seen keratoconus and other ectasia patients in my practice for over 30 years, I can’t think of another group that would benefit more from our advocacy and support than this one. 

For instance, patients with thinning disorders may need counseling from a mental health professional, as comorbidity beyond mental health is not uncommon. I recently sent a patient with keratoconus and a common case of eyelash ptosis/floppy eyelid syndrome for polysomnography; results from the pulmonologist demonstrated the presence of severe sleep apnea. For patients who suffer from severe ocular allergy—a source of misery unto itself and also a potential contributor to keratoconus progression if excessive eye rubbing occurs—we can help manage their experience of atopy with appropriate referrals. 

Additionally, don’t forget the back of the eye—the retina must also receive special attention. A disproportionate number of our CLEK patients had one or more retinal breaks. Without a doubt, I can say I’ve seen more asymptomatic retinal breaks in this group of patients than any other. 

Whether you see a large number of keratoconic patients or just a handful, be prepared to address the totality of this group’s needs. They rely on you not only for exceptional eye care, but also as a resource to help them cope with the many non-ocular aspects of their life that are compromised by the disease. Why not start by enrolling in the International Keratoconus Academy and attempting to become a more effective advocate? See where it gets you—and them.  

1. Kymer SM, Walline JJ, Zadnik K. et al.: Quality of Life in Keratoconus. Am J Ophthalmol. 2004; Oct. 138(4):527-35.
2. Kurma SA, Altun A, Gencaga T, et al. Vision Related Quality of Life in Patients with Keratoconus. J of Ophthalmol. 2014.
3. Kymer SM, Walline JJ, Zadnik K, et al. Am J Ophthalmol. 2008; 145(4): 611-17.