Acceptance of a Pre-visit Intervention to Engage African American Glaucoma Patients during Visits : Optometry and Vision Science

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FEATURE ARTICLE - PUBLIC ACCESS

Acceptance of a Pre-visit Intervention to Engage African American Glaucoma Patients during Visits

Sleath, Betsy PhD1,2∗; Carpenter, Delesha M. PhD, MSPH1; Davis, Scott A. PhD1; Budenz, Donald L. MD, MPH3; Muir, Kelly W. MD4,5; Romero, Maria S. MD6; Lee, Charles MD7; Tudor, Gail PhD8; Garcia, Nacire MS1; Adjei, Abena A. BS1; Robin, Alan L. MD9,10

Author Information
Optometry and Vision Science 99(12):p 838-843, December 2022. | DOI: 10.1097/OPX.0000000000001959

Abstract

FU1

Glaucoma is the leading cause of irreversible blindness in African American patients.1–44 Proper use of glaucoma medications can lower intraocular pressure and reduce the likelihood of progression of glaucoma.5 Our prior work, which videotaped visits, found that African American patients were significantly less likely to be educated about glaucoma by their ophthalmologists and were significantly less likely to take 80% or more of their prescribed glaucoma medication doses during the 60-day period after their visits than Whites.6–99 The National Eye Institute, Office of Women's Health at the National Institutes of Health, and Glaucoma Research Foundation all emphasize the importance of improving African American patients' understanding of both glaucoma and its treatment to minimize disparities in outcomes.3,10,11

One potential way to improve African American patient understanding of glaucoma and its treatment is to motivate them to be more engaged and to ask questions during clinic visits. One potential way to increase active patient participation is using “question prompt lists.” A “question prompt list” is a list of common questions that a patient might want to ask his or her doctor about his or her condition and its treatment. Cancer researchers have found that giving cancer patients question prompt lists before their visits increased the number of questions that they asked their doctors, improved patient recall of information, and prompted doctors to give patients more information.12–15 Importantly, cancer specialists believed that implementation of the prompt lists into routine practice was both feasible and did not strain resources.16

The Agency for Healthcare Research and Quality encourages the use of patient question prompt lists to increase patient involvement during visits.17 In our formative work, we developed the “glaucoma question prompt list” intervention with the input of glaucoma patients.18,19 In addition to the question prompt list, we also developed a short educational video (approximately 11 minutes) that stresses the importance of patient involvement during glaucoma visits.20

Our intervention was developed using social cognitive theory with a focus on increasing patient self-efficacy and outcome expectations.21,22 Our hypothesis was that watching the video and completing the glaucoma question prompt list would increase a patient's confidence or self-efficacy in asking questions during visits and lead to more positive patient outcome expectations for actions such as taking their medications. This could also improve quality of life or intraocular pressure. Prior work in the provider-communication area found that patient involvement during visits can improve satisfaction, adherence to recommendations, and patient health outcomes.23–3131

As part of an ongoing randomized controlled trial of the intervention with 189 African American patients with glaucoma, which is following them for 12 months to assess the intervention's impact on their outcomes, we interviewed the intervention group patients (N = 93) for their feedback on the glaucoma question prompt list/video. This intervention was designed to facilitate African American patient engagement during visits and examine which patient demographics were associated with patient acceptance of the intervention.

METHODS

Procedure

This research was reviewed by the institutional review boards at the University of North Carolina at Chapel Hill and the Durham VA and conforms to the principles and applicable guidelines for the protection of human subjects in biomedical research. The clinical trial is registered and publicly available at ClinicalTrials.gov identifier: NCT03657147.

Initial Development of the Glaucoma Question Prompt List

Initially, we developed our glaucoma question prompt list (e.g., the one-page list of questions patients might want to ask their provider) using the transcripts of actual videotaped glaucoma visits from a National Eye Institute Study that included patients from six ophthalmology clinics.18 Next, we showed the 1-page 18-item question prompt list to 49 African American patients with glaucoma who were recruited at a private ophthalmology clinic to examine the number and types of questions patients had checked to see which questions were checked most often.19

Focus Groups with Glaucoma Patients and Providers about Video Development and the Question Prompt List

We conducted three focus groups with African American glaucoma patients and three groups with providers because our randomized controlled trial was to be conducted at three different sites. Our team also needed diverse views before finalizing the glaucoma question prompt list and developing an educational video that would help improve patient involvement during medical visits.20 One clinic was in Baltimore, Maryland, one was a Veteran Affairs ophthalmology clinic, and one was in suburban North Carolina. Our published article on the development of the video explains the methods used for the focus groups, who participated in the focus groups, and the video focus group results.20 The themes that both patients and providers felt should be covered in the video to motivate patients to ask questions included the following topics: what glaucoma is, glaucoma treatment, glaucoma testing, and treatment adherence.20 Therefore, the 11-minute video has four African American patients with glaucoma and one African American ophthalmologist covering these themes and emphasizing the importance of asking eye care providers questions to better understand these areas. In our randomized controlled trial, patients watch the video and then check the questions on the glaucoma question prompt list that they want to ask their providers for use during their clinic visits.

The team met and came to consensus to determine what questions to remove, edit, and add to the glaucoma question prompt list based on the transcripts of the focus groups. Based on the focus group findings, we removed the questions “What is my prognosis with glaucoma?” “How long will it take my glaucoma medications to start working?” “How long will a bottle of my glaucoma medication last?” and “How much will my glaucoma medications cost?” We added the questions “How likely is it that I will go blind?” “Why do I have to take these visual fields?” “Is it possible for me to get cheaper versions of my medicines?” “What can I do if I am not sure I got a drop in my eye?” “How many drops do I take at once?” and “What time(s) of day should I take my drops?” We changed the question “Is it okay for me to take my glaucoma medications with other medications?” to “Are there any other medicines or products I should not be using with my glaucoma medicines?” We reworded “What is my goal intraocular pressure?” to “What is my ideal intraocular pressure?” We split “What is glaucoma and what causes it?” into two questions. We changed the word medications to medicines throughout the prompt list. The resulting 1-page question prompt list had 22 questions (9 about glaucoma, 13 about glaucoma medicines, and an area where the patient could write in questions that they had). Appendix 1, available at https://links.lww.com/OPX/A581, contains the resulting glaucoma question prompt list that was used in the randomized controlled trial.

Intervention Patient Feedback on the Randomized Controlled Trial of the Glaucoma Question Prompt List/Video Intervention

Providers across three glaucoma practices (two academic and one private) in North Carolina and Maryland agreed to participate in the study. Providers were eligible to participate if they cared for African American patients with glaucoma. Patients were recruited between September 2018 and the end of July 2021. Enrollment was paused because of COVID-19 from March 2020 through mid-July 2020.

Clinic staff referred potentially eligible patients who were interested in learning more about the study to a research assistant. All research assistants were trained for an average of 1 week by a project manager using a detailed study protocol and received at least one opportunity to shadow the project manager for training and practice; they could contact the project manager anytime with questions. The project manager regularly reviewed clinic data and gave feedback to the research assistants. The research assistant explained the study, obtained patient informed consent, and administered an eligibility screener. Patient inclusion criteria included the following: self-identified as Black or African American, 18 years or older, had a glaucoma diagnosis in their medical record, were able to speak and read English, and were on one or more glaucoma medications.

Additional inclusion criteria included two methods for being classified nonadherent. Patients could qualify as nonadherent via either method. The first method was the patient self-reporting being less than 90% adherent (score of <9) on a visual analog scale.32–37 A visual analog scale asks patients to put a line on a 10-cm scale indicating how much of the time they use all of their glaucoma medications exactly as directed (range is 0 [none of the time] to 10 [all of the time]).32–37 The visual analog scale has strong validity and reliability and has been validated against prescription drug refill records.32–37

The second method to determine if the patient was nonadherent to glaucoma medications was having them answer two questions: “How confident are you that you always remember to take your glaucoma medications?” (not at all, somewhat confident, very confident) and “In the past 4 weeks, did you ever forget to take your glaucoma medicine?” (yes, no, no but I sometimes take it late).38 If a patient answered they were very confident in remembering to take their medication but they forgot to take it sometimes during the past 4 weeks or they sometimes took it late, then they were eligible to participate. If the patient answered that they were not at all confident or somewhat confident in always remembering to take their glaucoma medications, then they were eligible to participate.

Exclusion criteria included being legally blind (were less than 20/400 in their better seeing eye) or making at least five errors on the 10-item Mental Status Questionnaire, which assesses patients' competence to participate in the research.39 Eligible patients were randomized to the intervention or control group. Patients in the intervention group watched the video on an iPad (Apple, Cupertino, CA) at the clinic right before their visits. Depending on the clinic, they watched it either in a private area or in the waiting area (with earphones) before the visit. The intervention patients then received the one-page paper glaucoma question prompt list to complete before their visits, which were audiotape recorded. The visits were audiotape recorded, transcribed, and coded so that provider-patient communication can be examined in the larger trial. Control patients received care as usual with no intervention; their visits were also audiotape recorded. All patients were interviewed after their medical visits by a research assistant, and intervention group patients were asked for their feedback on the question prompt list and video.

Measurement in the Randomized Controlled Trial

Patient age and years of education were measured as continuous variables. Patient sex was measured as a dichotomous variable. The number of glaucoma medications that a patient was on was measured using the following categories: one, two, three, four, or more. If a patient was on a fixed combination product, it counted as one medication. The eye(s) the patient had glaucoma was categorized as right, left, and both. How long the patient has been on glaucoma medications was recorded using the following categories: less than 6 months, 6 months to less than 1 year, 1 to 2 years, more than 2 years but less than 5 years, and 5 or more. The severity of glaucoma for the worse eye was extracted from the patient's medical chart and classified using the mean deviation in the eye, in decibels (dB), from the last reliable visual field and recoded as mild (≥−6 dB), moderate (between −12 and −6 dB), and severe (≤−12 dB) according to the Hodapp-Parrish-Anderson criteria.40

Table 1 presents the questions that intervention patients were asked on the glaucoma question prompt list and video that encouraged them to ask questions so that they could better understand their glaucoma.

TABLE 1 - Patient feedback on the educational video and question prompt list (n = 93)
Percent (n)
Patient recommends that other patients should watch the video before glaucoma visits
 Yes 87.1 (81)
 No 3.2 (3)
 Missing 9.7 (9)
In what ways did the video help you talk more with your provider about your glaucoma?*
 It helped me feel more knowledgeable about my glaucoma. 58.1 (54)
 It made me feel more confident to talk to my provider. 58.1 (54)
 It didn't help me. 7.5 (7)
How useful was the video to encourage you to talk more with your provider about glaucoma?
 Not at all 7.5 (7)
 A little useful 16.1 (15)
 Fairly useful 8.6 (8)
 Very useful 58.1 (54)
 Missing 9.7 (9)
Patient recommends that other patients should use the question prompt list in glaucoma visits
 Yes 89.2 (83)
 No 4.3 (4)
 Missing 6.5 (6)
In what ways did the question prompt list help you talk more with your provider about your glaucoma?*
 It helped me think of questions to ask. 49.5 (46)
 It helped me remember to ask questions. 41.9 (39)
 It made me feel more confident to talk to my provider. 36.6 (34)
 It didn't help me. 6.5 (6)
How useful was the question prompt list to encourage you to talk more with your provider about glaucoma?
 Not at all 3.2 (3)
 A little useful 7.5 (7)
 Fairly useful 17.2 (16)
 Very useful 64.5 (60)
 Missing 7.5 (7)
*Patients could choose multiple responses.

Data Analysis

First, we calculated descriptive statistics. How long the patient has been on glaucoma medications was recoded as 2 years or less or more than 2 years. How many glaucoma medications the patient was on was recoded as one versus two or more. Next, we examined the bivariate relationships between the sociodemographic variables (age, sex, years of education, glaucoma severity, how long the patient has had glaucoma, number of glaucoma medications, visual analog scale adherence score), and (a) whether patients recommended that other patients use the video and question prompt lists before visits and (b) how useful the patients thought the question prompt list and video were, using Pearson correlation coefficients, χ2 statistics, or t tests.

RESULTS

Twenty-six providers agreed to participate and one refused (96% response rate). Fifteen of the providers had patients who were enrolled. Nine were White, two were African American, two were Hispanic, and two classified themselves as “other” race. Providers ranged in age from 27 to 62 years (mean age, 39.4 years; standard deviation, 10.3 years). Seven of the providers were female. Three providers were optometrists, and the rest were ophthalmologists. Six hundred twelve patients approached the research assistant to learn about the study; 68 declined to participate, and 355 did not meet the inclusion criteria. One hundred eighty-nine patients were enrolled into the randomized controlled trial.

Ninety-three were randomized to the intervention group. Table 2 presents the demographic characteristics of the patients in the intervention group. Eighty-one percent of patients had glaucoma in both eyes. Sixty-eight percent had been on glaucoma medications for more than 2 years. Fifty-eight percent of patients were on two or more glaucoma medications.

TABLE 2 - Demographics of glaucoma patients in intervention group (n = 93)
Percent (n)
Patient sex
 Female 46.2 (43)
 Male 53.8 (5)
Which eye(s) have glaucoma
 Right 11.8 (11)
 Left 7.5 (7)
 Both 80.6 (75)
Glaucoma severity
 Mild 36.6 (34)
 Moderate 12.9 (12)
 Severe 50.5 (47)
How long been on glaucoma medications
 Less than 6 mo 16.1 (15)
 6 mo to less than 1 y 2.2 (2)
 1 to 2 y 14.0 (13)
 More than 2 y but less than 5 y 23.7 (22)
 More than 5 y 44.1 (41)
No. glaucoma medications
 One 41.9 (39)
 Two 35.5 (33)
 Three 12.9 (12)
 Four or more 9.7 (9)
Patient age 67.7 y (9.8); 42–90 y
Years of education 14.3 y (3.0); 7–25 y
Visual analog scale score 7.4 (2.0); 1.9–10

Table 1 presents patient feedback on the video. Eighty-seven percent of patients recommended that other patients should watch the educational video before their visits. Fifty-eight percent stated that the video helped them feel more knowledgeable about their glaucoma, and 58% said it made them feel more confident to talk to their provider. Fifty-eight percent of patients found that the video was very useful to encourage them to talk to their providers about glaucoma. As years of age increased, patients were significantly less likely to believe that other patients should watch the video before their glaucoma visits (t = −3.7, P = .04). The average age of patients who thought others should watch the video was 67.0 years (standard deviation, 9.7 years), whereas the average age of patients who thought others should not watch the video before visits was 76.7 years (standard deviation, 4.2 years). Patients with fewer years of education were significantly more likely to believe that the video was more useful than more educated patients (Pearson correlation, −0.27; P = .01). Patients who reported being less adherent on the visual analog scale reported that the video was more useful than patients who reported being more adherent (Pearson correlation, −0.23; P = .03). None of the other demographic variables were significantly associated with whether patients believed that other patients should watch the video before glaucoma visits or the usefulness of the video.

Table 1 also presents patient feedback on the question prompt list. Eighty-nine percent said that other patients should complete the question prompt lists before their visits. Fifty percent stated that it helped them think of questions to ask, 42% said it helped them to remember to ask questions, and 37% stated it made them feel more confident to ask questions. Sixty-five percent found the question prompt list very useful to encourage them to talk to their providers about glaucoma. None of the demographic characteristics were significantly associated with whether patients thought other patients should complete glaucoma question prompt lists for use during visits or how useful they felt the question prompt list was. Patients who thought the glaucoma question prompt list was useful were also significantly more likely to think that the video was useful (Pearson correlation, 0.49; P < .001).

DISCUSSION

The majority of patients in the randomized controlled trial who were in the intervention group believed that other patients with glaucoma should use the question prompt list and watch the educational video before visits. African American patients could have viewed the intervention positively because it was codeveloped with African American patients. Also, the intervention used social cognitive theory as a theoretical framework, and our primary goal in the larger trial is to increase patient self-efficacy or confidence in being involved during glaucoma visits and outcome expectations.21,22 Therefore, by focusing on increasing patient confidence to be engaged during visits, this approach might have contributed to why patients rated the intervention as being useful.19 In our larger ongoing randomized controlled trial where we are following patients for 1 year, we will be able to investigate if the intervention increases self-efficacy and outcome expectations.

Fifty-eight percent of patients felt as though the educational video made them feel more confident to talk with their provider, and 58% stated that the video helped them feel more knowledgeable about their glaucoma. Patients with fewer years of education rated the video as being more useful than patients with more years of education. Clear health communication is important for all patients, and therefore, the video should be disseminated to all patients and especially to those with fewer years of education. A video is a good way to deliver important health messages to patients with less education or lower health literacy. Some practices have televisions or computer screens in their waiting rooms where the educational video could run. Alternatively, practices could send patients the web link to the video to watch before their visits.

Another interesting finding is that patients with lower adherence on the visual analog scale also rated the video as being more useful than patients with higher adherence. Hopefully, we will find in our ongoing trial that the pre-visit intervention improves patient adherence to glaucoma medications over the 12-month period after first receiving the intervention. The video is available on YouTube (https://youtu.be/rH35XwBnes0).

Eighty-nine percent of patients believed that other African American patients with glaucoma should complete and use the question prompt list during visits. Patients believed that the prompt list helped them think of questions to ask, feel more confident to ask questions, and remember to ask questions. Practices could easily disseminate the one-page glaucoma question prompt list for patients to complete in the waiting area for use during visits. It could be disseminated electronically, or patients could be given a paper copy. Future research should investigate the optimal way to disseminate the glaucoma question prompt list.

The results may not be generalizable beyond the three practices in North Carolina and Maryland from which the patients were recruited or for other races. Future research should be conducted in other parts of the United States. We did not use an attention placebo, which might have influenced the behavior. We did not record the type of glaucoma the patient had or whether they had a family history of glaucoma. However, because this is part of a larger randomized trial, these variables should be evenly distributed across the intervention and control groups. Another limitation is the possibility of social desirability bias, where patients could have told the research assistants that they liked the intervention because they did not want to disappoint the study staff. Our research focused on African American patients with glaucoma and was conducted in English. Future research should be conducted with patients from other racial and ethnic backgrounds and in other languages such as Spanish or other Asian languages. Future work could examine the impact of sending patients a link to the video and the question prompt list before they come to their visit versus showing it to them right before their visits. In addition, future trial designs could examine the impact of the question prompt list alone on patient outcomes versus showing the patient the video alone rather than combining them into one intervention.

The majority of African American patients exposed to the video and glaucoma question prompt list accepted both parts of the intervention. Younger and patients with fewer years of education were significantly more likely to find the video useful.

Practice Implications

Practices could consider having patients complete the question prompt lists during pre-visit wait time. Clinics caring for African American patients with glaucoma could also consider having patients watch the educational video in the waiting area before visits. Once our larger randomized controlled trial is completed, our team can report on whether the intervention impacts 12-month patient outcomes.

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