In any practice, effective communication with patients and caregivers is essential — but not always prioritized. In pediatric-focused ophthalmology practices, this can mean double trouble. Young patients prescribed patches or occlusion lenses for conditions such as amblyopia or strabismus may have low tolerance for the devices. Parents, exhausted from the complaints and fiddling, may be tempted to give in and excuse noncompliance. Physicians must confront the reason their prescribed treatments are not being followed and ask themselves if they’re doing all they can to earn the satisfaction of their patients and caregivers.1 Consider the findings of a recent study.
“In pediatric ophthalmology practices, caregivers mostly report receiving verbal information from their clinicians,” explains research published in the Journal of the American Association for Pediatric Ophthalmology and Strabismus.2 “In one survey of pediatric eye care clinicians, 98% reported always providing a verbal explanation about amblyopia, and only 39% always gave written information. However, studies in other fields have demonstrated that patients immediately forget 40%-80% of what they hear, and those who receive written information recall better than those who do not.”
This research, combined with other complicating factors (such as low literacy in communities non-native to English) raises the question: Are ophthalmologists sufficiently explaining to parents the importance of treatments for amblyopia and strabismus?1,2
One thing is clear: patients and caregivers are more satisfied with physicians who offer access to take-home patient education materials (PEMs), whether they are in the form of printed materials or links to reliable sources on the internet.1 According to the American Medical Association (AMA) and National Institutes of Health (NIH), PEMs should be written between a third- and seventh-grade level so patients can easily understand them. 1 A 2015 study shows that popular PEMs on amblyopia and strabismus do not meet that criterium, based on evaluations with 10 validated readability scales.1 These amblyopia and strabismus PEMs often start at the high school reading level, according to the research.1 Without appropriate PEMs, young patients are less likely to adhere to occlusion therapy.2
However, there is hope. Time- and cost-effective methods of delivering medical information are working in pediatric ophthalmology, according to a 2022 publication.2
With this investigation’s findings, and advice from experts, any clinic can develop the skills to get patients and their families on the same team.
Parents Need Answers to the Right Questions
Julius Oatts, MD, an assistant professor and associate residency program director at the Department of Ophthalmology, University of California, San Francisco, says that in his experience, patients and their parents tend to present after a vision screening exam with a pediatrician. Parents may be surprised that the child needs to see an ophthalmologist and come unprepared. Other times, parents may over prepare and present believing their web searching gives them more answers than the clinician. In either case, Dr Oatts suggests avoiding answering any questions prematurely and waiting until you can conduct a complete exam yourself before presenting any diagnosis and recommendations.
Another recommendation from Dr Oatts is to avoid using colloquial terms, such as “lazy eye,” the definition of which can fluctuate between strabismus and amblyopia. Instead, when he describes amblyopia, he says that, generally, the structure is normal and the eye is working well, but the brain isn’t using that eye as much as the fellow eye. Strabismus, on the other hand, is the technical term for eye misalignment. For strabismus patients, parents may require an explanation of terms such as“intermittent,” “exotropia,” or “esotropia” to properly partner with the clinical team on treatment for their child.
Dr Oatts suggests confirming patients understand these definitions by asking them to repeat back to him what they do understand and to ask questions about what they don’t understand. He finds that sometimes he’s mistaken in his beliefs regarding what the parent understands. He also tries to ask parents and patients what other questions they have, not whether they have more questions.
“That kind of creates that culture or energy that you’re looking for them to ask questions,” Dr Oatts says.
He says some doctors also start conversations by telling parents how much time they have available and asking them to prioritize their concerns.
Parents often ask for reassurance that they did not cause their child’s condition, says Lauren Hennein, MD, an attending physician in pediatric ophthalmology and adult strabismus at the Department of Ophthalmology, Rady Children’s Hospital – San Diego, University of California.
Amblyopia can be covert when the child compensates with the strong eye. Parents may not even notice the condition. This presents a challenge to ophthalmologists by making it difficult to get “buy-in” from the parent regarding treatment, she explains. It may even lead to a delay in treatment. That is the worrying part. In fact, research shows that most patients fare better when parents understand the critical period, the importance of occlusion, and the potential negative consequences of not treating amblyopia.3
“Therapy, especially patching, can be cumbersome and frustrating for both the child and parent,” Dr Hennein says. “Patching, if prescribed, is indeed hard work!”
When Dr Hennein educates patients on the importance of therapy in the treatment of amblyopia, she focuses on the relationship between the brain and the eyes and the importance of treating during the critical period in which the brain learns how to use the eyes.
These explanations give parents the foundation they need to see what their child is up against. But take heed not to over promise on therapeutic success. When parents ask if the child will develop “normal vision,” Dr Hennein suggests pivoting to information about the available treatments and to use the conversation as an opportunity to emphasize treatment adherence to maximize visual prognosis.
When it Comes to Surgery, Parents Must Be on Your Timeline
Jamie B. Rosenberg, MD, pediatric ophthalmologist at Montefiore Medical Center and professor in the departments of ophthalmology and pediatrics at Albert Einstein College of Medicine in New York, says parents often ask whether surgery will improve vision in strabismus and whether a child who needs to wear glasses will ever be able to stop wearing them.
When researchers behind a 2022 study had families view an educational video before undergoing strabismus surgery, the anxiety levels decreased for both children and parents, and emergence agitation was lower compared with individuals who did not watch the video.2
Dr Oatts — who notes that strabismus surgeries are the most common procedures he performs — says it is essential for ophthalmologists to ensure they and parents are on the same page regarding indications for surgery. Some parents immediately seek surgery for strabismus. For these parents, Dr Oatts says it is vital to explain that strabismus surgery is typically only performed in 4 settings:
- Interference with visual development
- Double vision
- Psychosocial problems
- Abnormal head positioning
Sometimes the doctor’s understanding of the goal for surgery is divergent from the parents’ goal. Dr Oatts advises that surgeons and their teams be as precise as possible when explaining why surgery is appropriate for each patient. Establishing trust with patients and ensuring the parents understand the procedures, risks, benefits and alternatives may even provide you legal coverage, he explains.
Dr Oatts says he always seeks multiple meetings with each patient’s caretaker or caretakers before surgery so he can broadly describe the procedure and then provide the parents with information. He asks the parents to review and write down questions about the information, which they can address with him in a second meeting.
This way, “they don’t feel pressured to have all their questions come up at the same time,” he explains.
Written Materials Must Be Accessible
“Written information is a simple, inexpensive, easy to implement, yet effective method of improving parental understanding and subsequent concordance,” explains the researcher behind a study into the effect on parental nonconcordance with occlusion therapy.3
“Although we know there are limitations to the printed materials we have available, it can be helpful to give parents materials to look over, while instructing them to bring their questions to the next visit,” Dr Rosenberg says. Ophthalmologists must ensure the language in these materials is at a reading level that is accessible to all parents.
“It is very easy to use terms that we are used to but that don’t mean anything to parents,” Dr Rosenberg says.
Another consideration is, if the practice has a large population that speaks or reads a language other than English, materials should be available in those other languages. This is particularly important as a study shows being a non-native language speaker is linked with nonadherence to patching.2
It may also be helpful for the messaging to include visual aids or educational cartoons.2 The percentage of patients in lower-income areas of the Netherlands who never missed an appointment increased from 60.3% to 76% after researchers implemented a cartoon that explains, without words, why children with amblyopia should wear their eye patch.2
Most parents are not medical professionals — but that does not mean they cannot be allies in managing therapeutic compliance of your pediatric patients. To perform that role, they must have a strong rapport with a physician they trust. They must have an appreciation for the necessity of concordance with the clinician’s assigned regimen. They must have printed materials designed for them and access to the clinician’s office for clarifications on it. With these elements of patient education covered completely, you can rest assured that your youngest patients are being kept compliant and on their way to visual rehabilitation.
- John AM, John ES, Hansberry DR, et al. Analysis of online patient education materials in pediatric ophthalmology. J AAPOS. Published online October 1, 2015. doi:10.1016/j.jaapos.2015.07.286
- Frank T, Rosenberg S, Talsania S, et al. Patient education in pediatric ophthalmology: a systematic review. J AAPOS. 2022;26(6):287-293 doi:10.1016/j.jaapos.2022.09.009
- Newsham D. A randomised controlled trial of written information: the effect on parental non-concordance with occlusion therapy. Br J Ophthalmol. 2002;86(7):787-91. doi:10.1136/bjo.86.7.787