Increasing Engagement of African American Patients with Glaucoma during Medical Encounters: Creation of a Pre-visit Video

Abstract

Significance.

The developed video can be accessed by African American patients with glaucoma from across the United States on YouTube to learn why it is important to ask eye care providers any questions they might have about glaucoma and/or its treatment.

Purpose.

Our objective was to develop an educational video for African Americans with glaucoma to watch before their ophthalmology office visits to help motivate them to be actively involved in their care.

Methods.

Social Cognitive Theory guided the development of the video. We conducted three focus groups with African American patients with glaucoma and three focus groups with providers who care for African American patients with glaucoma. The research team reviewed the transcripts of the focus groups and then developed a plan for video production.

Results.

The themes that both patients and providers felt should be covered in the video to motivate patient question-asking included: what is glaucoma?, glaucoma treatment, glaucoma testing, and treatment adherence. Based on focus group results, the resulting video had one male African American physician and four African American patients covering the themes that emerged.

Conclusions.

Ophthalmologists and African Americans with glaucoma gave us excellent insight into developing videos to increase patient involvement during their visits.

One of the goals of Healthy People 2020 is to reduce glaucoma-related visual impairment.¹ Between 9% and 12% of blindness in the United States is attributed to glaucoma and glaucoma is the leading cause of irreversible blindness in African Americans.^2–5 The prevalence of glaucoma and glaucoma-related blindness from it are higher in African Americans than Caucasians in the United States; African Americans are 5 times more likely to get glaucoma than Caucasians and are 6 times more likely to go blind from it.¹

Proper use of glaucoma medications lowers intraocular pressure and prevents or slows the progression of glaucoma.⁶ Our prior work found that African Americans were significantly less likely to be educated about glaucoma by their ophthalmologists and they were significantly less likely to be adherent to their glaucoma medications than Caucasians.^7–10 Other previous research also found that African Americans were less likely to be adherent to their glaucoma medications than Caucasians.^11–13 Prior work has found that African American patients report being nonadherent to glaucoma medications because of the eye drop schedule, side effects, forgetfulness, cost/affordability, eyedrop administration.^{13, 14} These findings are especially important given that African American eye care patients are more likely to be interested in learning about glaucoma than other races.¹⁵

Prior studies have demonstrated that educational interventions targeted to African Americans can have a positive effect on the utilization of eye care services and on the beliefs about the importance of annual eye exams.^16–21 However, these studies did not target glaucoma patients.^19–21 Interventions are needed to empower African American patients with glaucoma to ask more questions during their doctor visits so they can better understand their disease and how to best self-manage it. Improved understanding of the disease and its management should result in improved adherence to therapy and visits. This improved adherence should in turn lead to a decrease of disease progression and a resultant decrease in visual disability and blindness. Our prior work found that African American glaucoma patients had an average of four questions that they wanted to ask their eye care provider.²² The most common questions focused on what is the significance of intraocular pressure, what is my prognosis, what are the side effects and costs of the glaucoma medicines, and what is glaucoma.²²

Social Cognitive Theory is a theoretical framework that could be used to develop an intervention to improve patient involvement and engagement during medical visits.^{23, 24} Self-confidence or self-efficacy is a central component of Social Cognitive Theory. A video intervention has the potential to increase patient self-confidence or self-efficacy to ask their eye care provider questions about managing glaucoma because the video could build self-efficacy through vicarious learning from a demographically similar role model.

If the patients ask more questions this could lead to providers educating them more about their glaucoma and its treatment. This in turn could impact another component of Social Cognitive Theory-outcomes expectations, which is a patient’s beliefs on what could result from attending appointments or being adherent to treatment. An improvement in self-efficacy and outcome expectations could ultimately lead to improved clinical outcomes. Indeed prior work in the provider-communication area has found that patient engagement during visits can improve patient health outcomes.^25–27 Also, application of Social Cognitive Theory in pediatric asthma populations has shown that advice from providers is one external factor that can improve patient self-management self-efficacy.^{25, 26}

Therefore, our objective was to develop a video, based upon Social Cognitive Theory, for African Americans with glaucoma to watch before their visits to motivate patients to be more involved during their visits. Our research team is currently conducting a large randomized controlled trial to examine whether patients who watch the video before medical visits ask more questions during glaucoma visits and have improved outcomes.

METHODS

Initial Focus Groups on Video Development

The study was approved by the University of North Carolina at Chapel Hill Institutional Review Board. African American patients with glaucoma and providers were recruited from one ophthalmology practice in Maryland and two in North Carolina. Providers were eligible if they cared for adult African American patients with glaucoma. Sixty percent, 70%, and 32% of the glaucoma patients of the participating providers from the clinics are African American.

Patients were eligible if they were African American, were 18 years or older, and had glaucoma. Informed consent was obtained. The principal investigator conducted three focus groups with African American patients with glaucoma. We conducted them at lunch time and provided food. One African American patient could not attend the focus groups so a research assistant interviewed him one-on-one. All patient participants completed anonymous surveys where they were asked about their gender, age, years of schooling completed, how long they had glaucoma, and in which eye they had glaucoma.

We conducted three focus groups for providers who cared for African American patients with glaucoma. The principal investigator conducted the provider focus groups in the evening and provided food. All provider participants completed anonymous surveys where they were asked about their gender, race, type of provider they were, whether they were a glaucoma specialist, and how long they had been practicing in health care.

All focus group participants were asked open-ended questions. Providers were asked about: (a) what they thought about developing a pre-visit video for African American patients with glaucoma on the importance of being more involved during visits, (b) what are the greatest barriers to patients talking during glaucoma visits, (c) what could we tell patients in a video to help them feel more comfortable talking to their providers, (d) what we could tell patients in the video to get them to ask questions about what they do not understand about glaucoma and its treatment, and (e) what topics would they focus on in the video. Patients were asked: (a) what they thought about developing a video for African American patients with glaucoma on the importance of being more involved during visits, (b) what makes it hard to talk with their doctor during visits, (c) what could we tell patients to help them feel comfortable talking with their doctor more during visits, (d) what could we tell patients to motivate them to ask more questions during glaucoma visits, and (e) what topics would they focus on in the video.

Analysis of Focus Group Data for Video Development

All members of the research team independently analyzed the focus group transcripts. We used patient-centered participatory techniques (e.g. we focused on what themes the patient and provider focus groups thought were important to patients) to identify important focus group themes using Social Cognitive Theory as our theoretical framework. The team met and discussed: (a) what the video should emphasize to improve patient involvement during visits, (b) the consistent themes that emerged from the focus group transcripts, and (c) what type of format the video should be.

RESULTS

Demographics

Fifteen African American patients with glaucoma participated in the three focus groups that were held in North Carolina and Maryland and one patient was interviewed one-on-one because they could not attend the focus group. The patient focus groups had seven, two, and six participants each. Forty-four percent of the participants were female. Sixty-three percent were age 69 years or younger, whereas 37% were age 70 or older. Twenty-five percent of the participants had a high school education or less. Sixty-two percent of the patients had glaucoma for 5 years or more; 88% had glaucoma in both eyes.

Fifteen eye care providers participated in the three focus groups that were held in North Carolina and Baltimore. The provider focus groups had four, five, and six participants each. Forty percent of the participants were female. Fifty-three percent were White, 13% were African American, 27% were Asian American, and 7% selected “other” as their race. Sixty percent of the providers were ophthalmologists, 20% were ophthalmology fellows, 7% were ophthalmology residents, and 13% were optometrists. Sixty-seven percent were glaucoma specialists. Thirty-three percent were practicing for less than 5 years, 40% were practicing for 5–10 years, and 27% were practicing for more than 20 years.

Improving Patient Involvement during Visits

Patients and providers both strongly supported the idea of a video to encourage patients to be more involved during visits and talk more with their providers. When asked about barriers to communication during visits, both patients and providers said that patients often did not want to bother the doctor or take up too much of the doctor’s time. Providers also mentioned that sometimes they were too formal and needed to learn to use plain language; one said, “I find that when I’m more blatant, they take it more to heart.”

Providers also mentioned not understanding what the patient does or does not know about glaucoma; one said that one time “I just realized that I had completely disconnected from my patient because I have it in my head what’s going on, and the patients don’t have that, so I think a big barrier is our assumption that the patients may know as much as we do.” With regard to African American patients specifically, providers mentioned distrust of the medical establishment due to historical events such as the Tuskegee syphilis study.

Both providers and patients discussed emphasizing that successful glaucoma treatment is a team effort and the patient has to do their part by asking the questions they have. Providers emphasized that it is often hard to know each patient’s prior level of knowledge, but when the patient asks questions, then the provider can help fill in the gaps in the patient’s knowledge and address problems the patient may be having. Glaucoma patients agreed that they learned over time about how important it was to “remain engaged” and “understand your own case”. Patients mentioned that it would be helpful for the video to emphasize the importance of keeping regular appointments and also contacting the doctor if their vision changes.

Video Content Suggestions

The content that patients and providers thought should be included in the video included: (a) what is glaucoma? (b) glaucoma treatment, (c) glaucoma testing, and (d) treatment adherence. Themes related to the content that should be in the video are shown in Table 1 with example quotes. Each theme is discussed below.

Table 1.

Focus group participant suggestions on what topics/themes should be included in the video that African American patients watch before glaucoma visits.

THEME
What is Glaucoma?
“Do some general education things about how important of a disease glaucoma is; how many people have it in the US, worldwide; what are the risk factors; things like that because one of the questions that we always ask patients that they don’t necessarily know and sometimes aren’t prepared to answer is family history.” -Provider
“A lot of people confuse eye pressure and blood pressure.” -Provider
“People feel overwhelmed. The impact of the doctor (explaining and thinking) “Am I really going to go blind?”-Patient
Purpose of Glaucoma Treatment
“[My doctor] showed a painting, and it was very cloudy. It was blurred, and he was showing that what is an end-point for glaucoma. So, that’s what happens if you don’t do what you’re supposed to do.” -Patient
“So, one of my themes is my goal of treatment is to maintain the vision you have. I cannot restore the vision that you have lost.” -Provider
“The thing that we focus on is how you do things that prevent things negative from happening. ‘Here are the things that are going to make your life better and improve on your life or keep you still seeing as best you can during your lifetime.’” -Patient
“‘What is my intraocular pressure?’ depends on the person. 10 might be good, 11 might be good, 12 might be good. Usually your doctor tells you where he wants you to be.” -Patient
Glaucoma Testing
“Everybody hates the visual field, and I always tell them: ‘Don’t worry because everybody hates the visual field, but the machine knows you hate it, but it will still do its job, so just do the best you can.’ … I tell the patients that the machine is designed for you to fail 50% of the time, and then it puts patients at ease.” -Provider
“I would tell them that they should not have high anxiety about the (visual field) test because it certainly will not harm them. It’s designed to help them, and I would go, like, it’s just thin lights.”-Patient
“Incorporate the test as part of the video then that kind of explains why it’s important to do it even though we do not like it” -Patient
Treatment Adherence
“A suggestion for time because even though it may be difficult, you still are supposed to take it according to the prescription or you’ll go blind. I would suggest how people could take medication four times a day, like, the beginning time, the second time, third time, fourth time.” -Patient
“Do the right thing. You could show a gentlemen with a walking stick and then at the end he is walking without the stick because he did the right thing”. -Patient
“Is there any particular way that you had to put drops in your eyes?” -Patient
“Take your drops and come to the doctor; take your drops.” -Patient

What is Glaucoma?

One major theme that was emphasized in the focus groups was “What is glaucoma?” Patients and providers both recommended explaining the disease process and how glaucoma progresses when not successfully treated. One patient recalled how their doctor had shown a painting that was blurred to demonstrate what things look like when people develop late-stage glaucoma. Providers placed more emphasis on showing the importance of understanding glaucoma and risk factors for glaucoma, noting that patients sometimes do not know their family history of glaucoma.

Glaucoma Treatment

Another major theme was glaucoma treatment. Both providers and patients wanted to clarify the available treatment options and the purpose of glaucoma treatment. One provider noted that some patients who would be better off getting laser surgery were reluctant to consider surgery, so it should be explained as a possible option. The purpose of glaucoma treatment was widely mentioned as a difficult concept for new patients to grasp. Therefore, both patients and providers wanted to emphasize that treatment is meant to maintain the vision that a patient has and cannot restore the vision that someone has already lost. Patients particularly emphasized reassuring people that their glaucoma can be controlled with appropriate treatment. While they did discuss the idea of getting patients’ attention by dramatizing what it is like to become blind, they also wanted to be sure to end on a positive note so that patients would be less scared.

Glaucoma Testing

A third major theme was glaucoma testing and what to expect during the glaucoma evaluation. Both patients and providers felt that a video could be very helpful to alleviate the stress that patients commonly feel during the glaucoma evaluation, especially during the visual field test. A provider noted that “everybody hates the visual field,” but by explaining that “the machine is designed for you to fail 50% of the time, then it puts patients at ease.” Patients agreed that often they became stressed if they did not know exactly what they were supposed to do during the visual field test.

Treatment Adherence

Both patients and providers wanted the video to emphasize the importance of adherence to eye drops and return clinic visits. Both highlighted the importance for patients to understand why they need to take drops every day even if their condition seems to be under control. They also emphasized that patients should be honest about how they are taking their drops and to discuss that many patients miss their drops sometimes or forget them. Patients specifically mentioned including tips on how to remember to take drops, especially for cases where a medication must be taken many times per day. They also emphasized the importance of keeping follow-up appointments.

Setting and Style of the Video

Patients and providers gave many suggestions on a possible video format that patients could watch immediately before their visits. There was no consensus on using an animation versus having people in the video. Some patients suggested avoiding “a talking head” (e.g. someone standing and lecturing in a sterile environment) and instead having “Something more interactive in a natural environment; a realistic environment,” similar to a good television advertisement they had seen. They emphasized having patients with glaucoma telling their stories in a natural environment. They also emphasized having a provider telling patients why it is important to ask questions during visits. Other patients and providers liked the idea of animation. For example, one provider gave examples of effective animated videos they had watched while learning to do surgery. However, patients were more likely than providers to say that patients and a doctor should be shown in the video talking to patients rather than having animation. Interestingly, neither patients or providers suggested having example provider-patient visits in the video; they instead wanted patients and a provider to tell their stories and emphasize why it was important for patients to ask questions during visits.

Video Production

Based on the suggestions that patients and providers made, we decided to create the video with one African American male ophthalmologist and four African American patients (two male and two female). We decided to use people in the video rather than an animation because real people provide more emotional connection and motivation than animation. The research team came up with a set of questions for the ophthalmologist and the four patients who were from North Carolina and Maryland. The questions for the ophthalmologist and patients were created based on our focus group results, so that we could make sure the ophthalmologist and patients covered the main themes that the patients and providers had told us were important during the focus groups. The patients and provider who were in the video had also participated in the focus groups. The ophthalmologist was chosen because patients thought an African American provider should be in the video and the patients were chosen because we wanted a balance of women and men from North Carolina and Maryland and they expressed interest in being in the video.

The ophthalmologist was asked questions such as, “Why is it important for patients to ask you any questions they have about glaucoma?”, “What are some important questions that patients should ask about their glaucoma but often do not?”, “Why is it important to use the eye medicine every day?” and “Why is it important for patients to tell you if they haven’t been taking their glaucoma medication as prescribed?” The ophthalmologist was also asked to cover some important glaucoma facts when he was video-taped and he was asked to describe what a visual field test is and what the patient should expect.

The four patients were asked questions such as: “How old were you when you learned that you had glaucoma?”, “If you were to describe what glaucoma is for someone who doesn’t know what it is, how would you explain it?”, “What were you concerned about when you learned that you had glaucoma?”, “Why is it important that patients ask their doctor questions that they have about their glaucoma?”, “Are there questions you wish you had asked your doctor when you learned that you had glaucoma?”, “What advice did you receive from others who have glaucoma?”, “What are some strategies that you’ve used to remember to ask your questions during a doctor’s visit?”, “What advice would you give someone else who had glaucoma?” and “Why is it important to tell your doctor if you haven’t been taking your glaucoma medication as prescribed?”

The ophthalmologist and patients were all video-taped separately when answering the questions. The video was then edited. The final video was 11 minutes long. The ophthalmologist began by addressing the importance of African Americans being checked for glaucoma, as they tend to experience earlier vision loss symptoms than Caucasians. The ophthalmologist emphasized that “an informed patient is an empowered patient” and noted that patients would have “a better sense of what to expect” with glaucoma and its treatment when they ask more questions. After this, the remarks of the four patients in the video were presented after the video had been edited. The video can be accessed on the following YouTube Channel: https://youtu.be/rH35XwBnes0.

DISCUSSION

Through this research process, we identified several themes that providers and African American patients with glaucoma believed were important to helping patients feel empowered to ask more questions during visits. Through this theoretically-driven process, we solicited several themes that providers and patients felt were important: (a) what is glaucoma? (b) glaucoma treatment, (c) visual field testing, and (d) treatment adherence. These themes informed the development of the questions that the African American ophthalmologist and patients were asked when they were video-taped.

One key message that was emphasized was not being afraid to ask questions about what glaucoma is. Patients stated that sometimes they felt overwhelmed when they were being told they have glaucoma. Therefore, they emphasized the need for patients to ask if they are not clear whether they have glaucoma. Another key theme was intraocular pressure and the need for patients to ask what their goal pressure is, because each individual might have a different goal.

Another important theme was the visual field test. Patients emphasized how much they did not enjoy the visual field test and the need for providers to explain why it is important to glaucoma treatment and that the test is designed to have folks purposively miss some of the answers. They also emphasized the need to take the eye drops to maintain vision and the need to come to see their eye care provider regularly. These factors tie in with the outcome expectations component of Social Cognitive Theory.^{23, 24} Patients need to understand what outcomes (e.g. blurry vision, blindness) to expect if they decide not to take their medications or not to come regularly to the ophthalmologist.

Our video intervention seeks to help patients have more self-confidence or self-efficacy, a key part of Social Cognitive Theory, in asking their providers questions about glaucoma and its treatment. The providers and patients all felt that having patients watch a video before visits to motivate them to ask questions was an excellent idea. They stated that the video should emphasize that glaucoma is a team approach between patients and their eye care providers.

If African American patients are more actively involved during visits, this could lead to improved self-management which could lead to improved outcomes. Our research team is currently examining this by testing the impacts of patients watching the video before visits in a randomized controlled trial to see if the video leads to more patient involvement during the visits and improved outcomes. Once that trial is completed and if the efficacy results are encouraging, then we will disseminate the video through the Agency for Healthcare Research and Quality, at glaucoma and other eye conferences, and other mechanisms. We are limited in that the focus groups were conducted only in Maryland and North Carolina. The study is limited in that the patients were a convenience sample of patients who signed up to participate in the focus groups. Some might view the fact that we only focused on African American patients as a limitation. However, we view this as a strength because this work focused on improving the communication during visits and outcomes of African Americans and it is important to design interventions using their perspectives. Another limitation is that our work focused on two components of Social Cognitive Theory-self-efficacy and outcome expectations. There are other components of Social Cognitive Theory (e.g. reciprocal determinism) that may also be appropriate for intervention development, but our primary goal was to increase patient self-efficacy in asking questions during visits. Despite the limitations, the study described themes that providers and patients felt should be included when developing an important new video for African American patients with glaucoma to watch on YouTube that encourages them to feel empowered and to ask more questions during visits to better understand glaucoma and its treatment.