By Monica Lefton, Communications Manager.
Maintaining proper eye health may not be top of mind for individuals in their daily routine, but if left unmonitored and untreated, certain eye diseases can become intrusive, painful, and debilitating; affecting physical and mental health and overall quality of life. Vision impairment affects more than 12 million Americans aged 40 and older and is among the most common causes of disability in the United States.
Although vision disorders and diseases can have an impact regardless of gender, women are disproportionately affected by some of the most common eye diseases, such as glaucoma, cataracts, age-related macular degeneration (AMD), thyroid eye disease (TED), and diabetic retinopathy.
To discuss the health, social, and economic impacts of these eye diseases on women’s health, on December 2, 2021, SWHR convened a diverse and interdisciplinary working group of clinical researchers, health care providers, patients and patient advocates, and policy leaders for a one-day roundtable meeting. The roundtable participants highlighted knowledge gaps and unmet needs in clinical care, education, and policy that could be addressed in order to improve eye health outcomes among women.
A Renewed Focus on Eye Research and Treatment in Women
There are a myriad of eye research and treatment opportunities that could enhance eye care provided to women and their families. One of the greatest challenges, according to working group members, is the lack of consensus among specialties (e.g., ophthalmologists, optometrists, endocrinologists, and radiologists) when it comes to research-based, clinical approaches for women’s eye health, particularly for complex eye diseases and comorbid conditions. For example, the clinical assessment for thyroid eye disease (TED) can be scored in a manner of ways [Werner’s NOSPECS, EUGOGO scale, Clinical Activity Score (CAS), and VISA], depending on a physician’s preference for grading patients with TED, shared Erin Shriver, MD, FACS, Clinical Professor of Ophthalmology and Visual Sciences at University of Iowa Carver College of Medicine. The different scoring mechanisms create inconsistencies at both the clinical and insurance levels. Creating national standards for women’s eye health care including standardized guidance on maintenance schedules—would help level the clinical and related research fields in women’s eye health. Additionally, integrating and elevating women’s eye care within the existing health care ecosystem, including in the relationships between patients and their primary health care providers and OBGYNs to ensure these clinicians are monitoring women’s eye health and making proper referrals, is key to advancing women’s eye care, working group members agreed.
Panelists also noted that improving patient care must rely on fostering a positive patient experience inside, as well as outside, the doctor’s office. “For glaucoma, there is a huge amount of work lost for patients due to the time it takes to complete regular testing and pressure check visits, so we, as providers, must be able to reach patients where they are,” said Elyse J. McGlumphy, MD, Assistant Professor of Ophthalmology at the Wilmer Eye Institute at Johns Hopkins School of Medicine. Remote visual field testing through virtual reality, tools for home eye care (e.g., home tonometers), expansion of rural testing sites, and improved telehealth resources could help patients more easily and frequently assess their eye health, ideally promoting better lifelong eye care habits.
Physicians should also be equipped to communicate effectively with proper sensitivities patients facing vision impairment, considering connects to mental health support as part of the disease management journey. “I was terrified by my glaucoma diagnosis, and all I could think about in those first weeks was what I was going to lose. This type of diagnosis can easily lead to depression,” said Trinh Green, MD, a primary care physician and glaucoma patient. At the time Dr. Green did not know that glaucoma is generally a slow progressing disease; therefore, she recommended that providers emphasize the risks and symptoms of a disease, and together with the patient’s caregivers, work to keep patient fears in check. Patients should be encouraged to have a vigilant collaboration with their doctor to help preserve sight.
Finally, participants mentioned the need to start studying the impacts of the COVID-19 pandemic restrictions on eye health. Trends such as extended screen time are likely to affect conditions like dry eye, but research must be conducted to articulate the short- and long-term outcomes.
Creating Clarity in Eye Health Education
Roundtable participants repeatedly called for improved educational resources for all touch points in the eye care journey in order to close literacy gaps for patients, caregivers, providers, and policymakers. This may begin with improved education for primary care providers (PCP) about eye health, including common symptoms to look out for in women, as PCPs are often the first line of care for many women and their families. Associations and patient advocacy organizations can also invest in public awareness campaigns that educate the general public on eye disease symptoms and preventive practices (for general audiences and those specific to women) as well as treatment options. When creating materials, the working group agreed on the need for frequent and thoughtful inclusion of the affected patient populations in the creation process. This work may include fostering an understanding of cultural nuances, addressing language barriers, and considering socioeconomic factors when working with diverse patient populations. “As more groups include the target population in the development of health information, hopefully we will start to see a shift in the health literacy gap, as people get the vision information that fits their needs and population,” said Kira Baldonado, MPH, Vice President of Public Health and Policy at Prevent Blindness.
Early education interventions for eye health care and prevention in children are also necessary. Starting eye health education early can have profound and positive effects on long-term eye health. “Schools often screen children just for visual acuity, and they don’t screen them for other possible issues, such as dry eyes or related eye issues. If additional eye health screening and education began in schools, we may be able to catch things earlier,” said Layla Lohmann, DDS, a dentist and TED patient. The school setting could be used to increase awareness about the importance of eye health, proper eye care, and common vision issues for school-age kids (such as strabismus ocular disease), in addition to connecting parents with resources and eye care professionals.
The Vision for Policy and Advocacy
Fundamental to the advancement of women’s eye health education and care will be the ongoing integration of women’s eye health conversations into mainstream health care and new policy, participants concluded. Vision problems cost the United States $172 billion in 2020 and are expected to increase to $717 billion by 2050 without effective interventions in place.
Roundtable participants agreed that additional research funding is needed to address certain knowledge gaps in women’s eye health. There is also a pressing need for updated insurance coverage and policies that are based on scientific evidence and clinical guidelines, improved access to eye care and providers in rural settings, and reduced cost barriers to preferred medication and treatment options, as well as assistive and adaptive low vision devices. New, evidence-based policies may also help address the common cost-control method called step therapy (also referred to as “fail first”) in eye health patients. Step therapy is a policy sometimes implemented by insurance companies requiring a patient to try and “fail” with lower-cost treatment options before receiving the treatment that a clinician originally prescribed or recommended; this method may delay necessary treatment, resulting in further disease progression.
A case-in-point of cost barriers raised during the meeting were glaucoma eye drop medications, which can cost hundreds of dollars, making every drop extremely expensive for patients. For these individuals who have low vision, and are often older and prone to miss their eyes when administering eyedrops, wasting their medication places an even greater financial burden on their eye care. One unfortunate solution that is practiced to mitigate cost concerns is that physicians sometimes prescribe less expensive eye drops to save on cost, instead of a superior product that might be a more effective treatment for their patient. Furthermore, many eye diseases require lifelong management after diagnosis; therefore, classifying eye diseases as the chronic conditions that many of them are could substantially improve coverage and care.
The success of these policy changes will, in part, rest on opportunities to share and elevate patient experiences of women living with eye diseases in policy forums, educational, and advocacy spaces, or elsewhere. Continuing to center women’s stories in the work of improving eye health will enhance the effectiveness of culturally appropriate and inclusive legislation and materials.
Looking Ahead
Eye health is a component of individual wellness that can no longer be overlooked, roundtable participants agreed. “There is such a disconnect between the value of vision and how little patients actually think of their vision, to the point where they are not getting their regular vision checks,” said James Jorkasky, MBA, Executive Director at National Alliance for Eye and Vision Research. It will take collaborating between specialties (e.g., primary care, optometry, ophthalmology, endocrinology, rheumatology, obstetrics and gynecology, dentistry) as well as between physicians and patients to remove barriers and improve eye health outcomes for women.
SWHR will continue searching for opportunities to build awareness, advance science-based policies that expand access to coverage, and advocate for improved health equity and outcomes for women’s eye health.
SWHR’s Eye Health Program published the SWHR Patient Toolkit: A Guide to Women’s Eye Health in January 2022 to empower individuals to navigate their eye health and eye care as they age.
SWHR’s Eye Health roundtable is supported by educational sponsorship from Horizon Therapeutics. SWHR maintains editorial control and independence over educational content.