Successfully managing glaucoma requires that patients closely adhere to complex medication regimens. However, nearly one-quarter of adults in the U.S. are illiterate, and 54 percent of adults can’t read at a 6th grade level.1 Do educational materials adequately communicate what patients need to do to manage their disease? Recent research says no.
Glaucomatous damage can be slowed or prevented with effective medical treatment. Fully understanding their health is particularly important for patients with glaucoma, since treatment hinges on the patient self-managing eye drop therapy. Poor readability of educational materials may lead to decreased patient understanding of their disease – and less engagement in managing it.2 Patients with poor literacy skills miss more scheduled appointments and are less likely to obtain their prescribed medications.2
Printed patient education materials are an important supplement to in-office education. However, recent research has found that in many cases, high complexity and low readability make these materials difficult for patients to read, understand and apply.2-4 Further, patients are increasingly searching online for health information, yet what they’re finding isn’t much better.
Combined, all these issues can lead to lower patient engagement, poorer clinical outcomes, and greater racial and ethnic disparities in glaucoma management.2 But, with a little expert advice from researchers and glaucoma subspecialists in practice, any clinical team can devise patient education materials that address everyone’s needs and works to keep patients and their vision healthy.
Few Patients Have Medical Literacy
Approximately half of all diagnosed glaucoma patients do not take their prescribed medications.3 And low health literacy is a prime suspect in this decreased adherence to treatment.2 Researchers also believe it is directly connected to increased difficulty administering eye drops.2 But medical literacy is not common, even among groups with strong higher education credentials.
“We’re all illiterate in some ways,” says Mildred M.G. Olivier, MD, BS, a St. Louis-based ophthalmologist and associate dean of Ponce Health Sciences University’s School of Medicine. “There’s a misconception that everyone who’s educated also has high health literacy. However, when it comes to complex conditions like glaucoma, education must be provided in the simplest terms to all patients.”
Frequently, health information published online uses long sentences, complex words, and medical jargon, making it difficult for the average American adult to comprehend.5 In fact, research shows that 69% of US adults consulted the internet first when searching for health information, yet only 38% of patients could understand the health information without frustration.2
The American Medical Association recommends that patient education be written at or below a 7th-grade reading level. However, a study published in the Journal of Glaucoma shows that online glaucoma content is typically written at a 10th– or 11th-grade reading level.2 In another study, researchers analyzed 13 websites and assigned 3 independent reviewers to assess each for suitability, readability, and accountability. That team reported “significant variation” in the content and quality of freely available online glaucoma education.5
The Clinical Impact of Poor Patient Education
Despite meaningful improvements in technology, therapeutic tools, and knowledge of the disease, patients can still go blind from glaucoma. Less compliant patients are at greater risk of developing vision loss.6 While missing a single dose of drops may seem insignificant to patients, skipping a once-daily, 24-hour medication once a week equates to 6 weeks of missed therapy for an entire year.6 Skipping 2 doses a week compounds to 12 weeks of missed therapy in the same timeframe.6
In response, researchers say ophthalmologists should provide appropriate patient education and ask patients to reiterate their understanding. The first step in connecting and communicating with patients is to ask each patient about his or her needs and goals, including their comfort level with the prescribed course of treatment, says ophthalmologist Ying Han, MD, PhD, director of the glaucoma clinic, professor of ophthalmology, and associate fellowship director at University of California, San Francisco.
“We’re treating people, not a number,” says Dr Han. “Some patients are only concerned about how glaucoma may affect their vision. They aren’t worried about eye pressure, so they may not see the importance of taking their medication. As doctors, we need to explain what the future may hold for each patient if interventions aren’t followed.”
Dr Han recommends a multi-pronged approach to patient education: verbal instructions, printed handouts with illustrations, and related videos or animations. Dr Olivier agrees, suggesting providers show patients’ their visual field, explaining areas of concern and the potential for future vision loss. This will help patients better understand the importance of medication compliance. It is also important to be prescriptive about how eye drops should be administered to avoid confusion and incomplete treatment. In fact, a study found that 12% of patients who thought they had no problem using their eye drops were not able to get drops into their eyes.3 Further, of those patients who thought they had no issues with eye drop administration, 54% had poor technique, touching the bottle tip to their eye or ocular adnexa.3
“I had told a patient to take the drops 2 times a day, once in the morning and again before she went to bed,” Dr Olivier explains. “During a follow-up visit, the patient reported that she often fell asleep before she could take the last dose. She was literally waiting until she went to sleep to administer the drops. Using the right words really does matter.”
Dr Olivier added that another patient had been putting drops in his mouth because no one had physically shown him the proper technique. Teaching eye drop administration by asking patients to demonstrate their technique is crucial to improving glaucoma self-management skills.3 And, says Dr Han, education about medication administration should be ongoing, not just for new patients. As patients become more comfortable with their diagnoses, it is important to reiterate how to use eye drops and the potential consequences of not using them regularly. In her clinic, the medical record includes a box that providers must check at every encounter to indicate that patient instruction was completed.
Impact on Underserved Populations
Coupled with higher glaucoma incidence rates for patients of Black and Hispanic heritage, it is not surprising that low health literacy among this population has been linked with decreased patient engagement.2 As such, poor quality education may contribute to an even worse burden of glaucoma among these groups.2
To mitigate these trends, Dr Olivier says it is imperative to build trust with racially and ethnically diverse patient populations, particularly patients who may have a deep-seated distrust of the medical community. She recommends practices offer patients culturally competent educational materials that visually reflect patient — and provider — diversity, and audiovisual materials that can help bridge language gaps. Further, providers can leverage technology to improve medication adherence by encouraging patients to set reminders on their smartphones or have staff set reminders for them.
“Even in low-resource areas, everyone has a phone,” she says. “Staff members at the discharge desk could simply say, ‘Let me put reminders in your phone right now.’” This may require physicians or members of their staff to maintain familiarity with the various smartphone technologies and their “calendar” and “reminder” functions.
Tips for Improving Printed Patient Education
When it comes to building or buying print resources, both providers agree that good educational materials already exist, and developing your own may be too heavy a lift. Instead, they say, providers can add their practice logo to evidence-based, patient-appropriate materials available through the American Academy of Ophthalmology (AAO), Glaucoma Research Foundation, American Glaucoma Society, Prevent Blindness America, or National Eye Institute. Many of these resources are available in multiple languages.
Specifically, the AAO says it develops patient education content that meets best-in-class readability and information design standards.7 This includes:
- Shorter sentences and expanded use of bullets.
- Emphasizing the action steps that promote healthier outcomes.
- A glossary of medical and technical terms.
- Using a font (APHont) designed for readers with low vision.
- Featuring key content in the beginning and again in a summary section at the end.
- Shorter explanations with vital details highlighted in text boxes, pull quotes and sidebars.
- Medical art and images that help explain key messages.
Dr Han suggests providers ask their peers which materials they have found effective. She uses a brochure from the Glaucoma Research Foundation for newly diagnosed patients in her clinic because it is easy to read and includes illustrations that patients can understand.
Even for those who develop customized patient education materials for their practice, experts say there is always room for improvement. Determined to improve patient education at their institution, physicians at Duke Eye Center surveyed their patients about what changes would make materials more useful. Patients said they preferred concrete language, practical information, a simple format, a positive tone, and a message that the provider is available to help.4 In some cases, they said an image of the eye or a graphic of how to install drops would improve comprehension. Patients also wanted to understand what to expect during their experience with glaucoma.
The team reworked their materials using guidelines for producing easy-to-understand materials, including shortening sentences to no more than 15 words, using 1- to 2-syllable words, and displaying information in bulleted lists instead of blocks of text.4 Through these changes, the average reading level decreased from a 10th-grade level to a 6th-grade level, and patient feedback was overwhelmingly positive.
“Our institution’s experience suggests that applying guidelines on writing easy-to-understand material can improve the readability and suitability of educational materials for patients with low health literacy,” the study explains.
“With time, you will learn what works best for your practice,” Dr Han says.
It Takes a Village to Educate Patients
Because physicians have limited time during clinical encounters, supplemental patient counseling and education can be delegated to support staff. Dr Han says the entire clinical team – attending physicians, residents, fellows, nurses, and support staff – should be committed to providing information to patients, reviewing discharge summaries with them, and answering their questions.
Training para-professional staff to provide high-quality education and counseling can improve patients’ self-management. For example, when a nurse showed a video about glaucoma, reviewed key points of the materials, and answered patients’ questions about glaucoma in the waiting room of an eye clinic for veterans, patients reported being “significantly more satisfied” with their clinic visit than the control group.3
One way to incorporate education and counseling into routine office visits is to take advantage of times when patients are waiting. Technicians or medical assistants could be trained to review a topic, such as barriers to successful self-management, general glaucoma information, or an overview of ancillary tests, during wait times. For example, a 10-minute waiting window during a patient visit could be used to explain eye drop administration.
“Look at your practice, your materials, your staff, how patients are treated and communicated to. Are there barriers that prevent your patients from getting everything they need to be compliant?” Dr Olivier suggests. “Everyone has to do a deep dive and find solutions. Once patients see that you care about managing their disease, they will care about it, too.”
1. Literacy statistics. ThinkImpact.com. https://www.thinkimpact.com/literacy-statistics/. Published November 18, 2021. Accessed April 10, 2022.
2. Cheng BT, Kim AB, Tanna AP. Readability of online patient education materials for glaucoma. J Glaucoma. Published online Mar 11, 2022. doi:10.1097/IJG.0000000000002012.
3. Newman-Casey PA, Musser JA, Niziol LM, et al. Integrating patient education into the glaucoma clinical encounter: a lean analysis. J Glaucoma. Published May 2019. doi:10.1097/IJG.0000000000001192.
4. Williams AM, Muir KW, Rosdahl JA. Readability of patient education materials in ophthalmology: a single-institution study and systematic review. BMC Ophthalmol. Published August 3, 2016. doi:10.1186/s12886-016-0315-0.
5. Martin CA, Khan S, Lee R, Do A, et al. Readability and suitability of online glaucoma patient education materials. Ophthalmol Glaucoma. Published online March 14, 2022. doi:10.1016/j.ogla.2022.03.004.
6. Ramesh PV, Parthasarathi S, John RK. An exploratory study of compliance to anti-glaucoma medications among literate primary glaucoma patients at an urban tertiary eye care center in South India. Indian J Ophthalmol. Published online May 21, 2021. doi:10.4103/ijo.IJO_2008_20.
7. American Academy of Ophthalmology. Eye drops brochure. Academy Store. https://store.aao.org/eye-drops-brochure.html. Accessed April 10, 2022.