Purpose
To evaluate the impact of traditional counseling and patient-centered counseling, either alone or with recorded audio counseling reinforcement, on glaucoma knowledge and clinical follow-up.
Design
Prospective randomized controlled trial.
Methods
Newly diagnosed adult glaucoma patients were randomized to 1 of 3 categories of glaucoma counseling: traditional counseling, patient-centered counseling, or patient-centered counseling with audio counseling reinforcement. Demographic and clinical information from each subject was ascertained, and all subjects completed the Glaucoma Knowledge Assessment before and after counseling sessions at the time of diagnosis and at 1-month follow-up. Patients were instructed to return to clinic for routine follow-up at 1, 3, 6, 9, and 12 months after enrollment. A multivariate logistic regression model was used to determine factors associated with appropriate clinical follow-up.
Results
Overall, only 13.5% of subjects had appropriate clinical follow-up at 1 year, defined as attending at least 3 follow-up visits during that interval, and there was no significant difference between counseling groups. The mean glaucoma knowledge assessment score (GKAS) improved by 77.6% with the initial counseling intervention ( P < .0001), decreased by 17.4% within a 1-month period following initial counseling, and improved by 22.8% ( P < .001) after the second counseling intervention. Monthly household income over 2500 rupees, GKAS greater than 5 after initial counseling, and undergoing any ocular surgical procedure were all independent predictors of appropriate follow-up.
Conclusion
While all 3 counseling methods resulted in transient improvement of patient knowledge regarding glaucomatous disease, follow-up rates were poor for all groups. Poor retention of glaucoma knowledge may impact the likelihood of patient follow-up, and reinforcement with repeated counseling may be beneficial with regard to both disease knowledge and follow-up.
Glaucoma is the second-leading cause of avoidable blindness in southern India and is responsible for 10% of cases of blindness detected in the population. Although glaucoma screening and diagnosis remain significant challenges, a major factor contributing to the rise of glaucoma-related blindness may be the problem of poor clinical follow-up once a diagnosis has been made. Regular patient follow-up allows for longitudinal monitoring of glaucomatous changes and adjustment of therapies when needed. Visual trajectories in patients with glaucoma are often determined shortly after diagnosis, and outcomes are largely based on severity of disease at the time of diagnosis as well as rate of subsequent progression. Regular clinical follow-up allows the physician to track glaucomatous changes over time, assess factors associated with progression, prescribe and modify appropriate interventions, and, it is hoped, prevent progression of glaucoma-related vision loss. Unfortunately, while much has been written on the subject of nonadherence to glaucoma medication regimens, there is scant literature quantifying the extent of poor clinical follow-up in developing countries such as India.
Poor follow-up or loss to follow-up during this time period can lead to progressive disease and otherwise preventable blindness. In a study by Ung and associates, glaucoma patients who were less adherent to recommended follow-up regimens tended to have more severe glaucomatous disease, suggesting that poor follow-up may lead to disease progression. Patient compliance in attending follow-up as advised may thus be at least as important as adherence to glaucoma medication regimens.
Various studies have sought to understand the barriers that contribute to poor follow-up among glaucoma patients, and poor understanding about glaucoma and its management can be hypothesized to be an important predictive factor. Investigators at the Aravind Eye Care System in South India found that one of the most important patient-reported barriers to attending glaucoma follow-up was the perception that there was no problem with their own eyes. The study further found that poor follow-up was associated with false notions about the need for follow-up, such as the belief that follow-up is less important as long as one takes glaucoma medications and does not notice visual changes. Another case-control study of patients who underwent glaucoma surgery in India found that those who were lost to follow-up for over a year had poorer understanding about glaucoma and were more likely to believe that surgery had cured their glaucoma, as compared to patients who persisted with appropriate clinical follow-up. Based on the findings of these studies, one hypothesis would be that improved patient education and counseling could improve patient understanding about glaucoma and therefore increase clinical follow-up.
No prospective studies have assessed glaucoma knowledge improvement and retention as it relates to longitudinal follow-up in newly diagnosed glaucoma patients. This study randomized glaucoma patients to various types of counseling interventions to determine their relative efficacy in improving glaucoma knowledge, glaucoma knowledge retention over time, and adherence to clinical follow-up in the year following diagnosis.
Methods
This prospective randomized controlled trial enrolled 399 newly diagnosed glaucoma patients at the Aravind Eye Hospital Glaucoma Clinic in Madurai, India from 1 st June 2011 to 31 st December, 2012. The study protocol was approved by the institutional review boards at Stanford University Medical Center and the Research Committee at Aravind Eye Care System and was conducted in accordance with the principles of the Declaration of Helsinki. Aravind Eye Hospital is a multispecialty tertiary care ophthalmology facility that has a largely rural catchment area of approximately 27 million residents of South India and performs nearly 1 million outpatient visits and over 142 000 surgeries annually. In this high-volume clinical system, ophthalmologists examine, diagnose, and treat patients. Meanwhile, trained health care workers help physicians counsel, educate, and review recommended treatment and follow-up with patients.
“Traditional counseling” consists of a standardized, largely unidirectional transmission of information from counselor to patient, with minimal interactive discussion or asking of questions by the patient, as is common in rural South Indian culture. Counselors use audiovisual aids to discuss basic concepts about glaucoma as a disease, provide counseling in the various dialects spoken by patients, and educate the patients and any family members accompanying the patient. In spite of this well-established counseling system, it remains unclear to what degree patients comprehend and retain the imparted information.
This study developed a new “patient-centered counseling” method to determine whether or not alternative methods of counseling might be more effective in improving knowledge about glaucoma, retention of this knowledge, and long-term clinical follow-up. Glaucoma patients completed a short 8-question glaucoma knowledge assessment questionnaire that was developed and validated for this study. The questionnaire was administered both before and after counseling at the initial visit and at the 1-month follow-up visit. Counseling sessions were tailored to address individual patients’ knowledge gaps based on questionnaire answers, and counselors were instructed to make discussions interactive, to encourage questions, and to check for patient understanding. Counselors were trained to teach patients basic information about glaucoma, discuss why medication use and regular clinical follow-up are important, and clarify any misconceptions.
Another educational tool was developed for this study in the form of recorded “audio counseling.” The study team physicians and counselors collectively developed a script written in simple lay terms discussing fundamental information about glaucoma as a disease, its treatment options, the differences between glaucoma and cataract, and the importance of long-term medication adherence and follow-up. The script ( Appendix A , Supplemental Material available at AJO.com ) was developed so as to be easily understandable for all patients, including those who were not literate. A 5-minute narrated version of the script was produced, and the audio counseling was played for newly diagnosed glaucoma patients after seeing the ophthalmologist and prior to meeting with the glaucoma counselors to aid in repetition of educational content.
Subjects included in the study were newly diagnosed patients with primary open-angle glaucoma, primary angle closure glaucoma, or pseudoexfoliation glaucoma at Aravind Eye Hospital Glaucoma Clinic in Madurai (for demographics see, Table 1 ). To be included in the study, subjects had to be 30 years of age or older, speak Tamil fluently, live within approximately 60 km of the hospital so that follow-up would not pose a significant problem, and anticipate attending all follow-up glaucoma visits at the Aravind Eye Hospital, Madurai. Patients excluded from the study were those who had previously been diagnosed or treated for glaucoma at an outside facility, had secondary or pediatric glaucoma, or were “nonpaying” patients who received complimentary charity care based on financial need.
| Variable | Traditional Counseling (n = 133) | Patient-Centered Counseling (n = 133) | Patient-Centered + Audio Counseling (n = 133) | P Value |
|---|---|---|---|---|
| Age (y) | ||||
| Mean (SD) | 60.9 (10.3) | 60.4 (10.6) | 60.3 (9.5) | |
| Min-Max | 30–85 | 31–85 | 35–80 | .896 |
| Sex, n (%) | ||||
| Male | 67 (50.4) | 80 (60.2) | 79 (59.4) | |
| Female | 66 (49.6) | 53 (39.9) | 54 (40.6) | .201 |
| Literate, n (%) | ||||
| Yes | 80 (60.2) | 73 (54.9) | 73 (54.9) | |
| No | 53 (39.8) | 60 (45.1) | 60 (45.1) | .606 |
| REALM-R test score, n (%) | – | |||
| ≤3 rd grade | 7 (8.5) | 7 (9.5) | 8 (11.0) | |
| 4 th –6 th grade | 3 (3.7) | 3 (4.0) | 7 (9.6) | |
| 7 th –8 th grade | 24 (29.3) | 16 (21.6) | 20 (27.4) | |
| ≥9 th grade | 48 (58.5) | 48 (64.9) | 38 (52.0) | |
| Education, n (%) | – | |||
| Primary/no formal education | 20 (25.0) | 14 (21.9) | 20 (27.4) | |
| Middle | 24 (30.0) | 22 (30.1) | 15 (20.6) | |
| High school | 29 (36.2) | 28 (38.4) | 25 (34.3) | |
| Graduate/postgraduate | 7 (8.7) | 7 (9.6) | 13 (17.8) | |
| Occupation, n (%) | – | |||
| Office worker | 6 (4.6) | 10 (7.5) | 7 (5.3) | |
| Skilled worker | 13 (9.8) | 14 (10.5) | 15 (11.3) | |
| Unskilled worker | 36 (27.1) | 42 (31.6) | 39 (29.3) | |
| Retired/housewife | 63 (47.4) | 49 (36.9) | 54 (40.6) | |
| Unemployed | 15 (11.3) | 18 (13.5) | 18 (13.5) | |
| Occupation status, n (%) | ||||
| Working | 55 (41.4) | 66 (49.6) | 61 (45.9) | .399 |
| Not working or retired | 78 (58.7) | 67 (50.4) | 72 (54.1) | |
| Monthly household income (rupees) | – | |||
| ≤1000 | 31 (23.3) | 14 (10.5) | 30 (22.6) | |
| 1001–2000 | 33 (24.8) | 44 (33.1) | 31 (23.3) | |
| 2001–3000 | 15 (11.3) | 19 (14.3) | 26 (19.6) | |
| 3001–4000 | 11 (8.3) | 14 (10.5) | 4 (3.0) | |
| 4001–5000 | 10 (7.5) | 16 (12.0) | 6 (4.5) | |
| >5000 | 33 (24.8) | 26 (19.6) | 36 (27.1) | |
| Require escort to clinic, n (%) | ||||
| Yes | 107 (80.5) | 108 (81.2) | 104 (78.2) | |
| No | 26 (19.6) | 25 (18.8) | 29 (21.8) | .816 |
| Diagnosis, n (%) | ||||
| Primary open angle glaucoma | 96 (72.2) | 101 (75.9) | 104 (78.2) | |
| Primary angle closure glaucoma | 7 (5.3) | 3 (2.3) | 3 (2.3) | .542 |
| Pseudoexfoliation glaucoma | 30 (22.6) | 29 (21.8) | 26 (19.6) | |
| Median logMAR VA | ||||
| Presenting OD | 20/80 | 20/80 | 20/80 | .978 |
| Presenting OS | 20/80 | 20/80 | 20/80 | .453 |
| BCVA OD | 20/30 | 20/30 | 20/30 | .534 |
| BCVA OS | 20/30 | 20/30 | 20/30 | .751 |
| Presenting better VA | 20/60 | 20/60 | 20/60 | .845 |
| Best-corrected VA | 20/60 | 20/60 | 20/60 | .620 |
| Mean (SD) of IOP | ||||
| Right eye | 21.51 (7.43) | 23.96 (9.21) | 22.69 (8.56) | .062 |
| Left eye | 21.53 (7.84) | 22.75 (8.73) | 22.96 (8.72) | .330 |
We enrolled 399 consecutive subjects and randomized them equally to 1 of 3 different counseling interventions using a random number generator at their first visit ( Table 2 ). Group 1 received traditional counseling; Group 2 received patient-centered counseling; and Group 3 received audio counseling along with patient-centered counseling. After oral informed consent was obtained, a trained member of the study team administered a questionnaire to collect demographic information including age, sex, household income, literacy, education level, and occupation. We gathered the following clinical information: diagnosis, disease severity, intraocular pressure, and visual acuity. Disease severity (mild, moderate, or severe) was evaluated by consultant glaucoma specialists according to the American Academy of Ophthalmology preferred practice patterns guidelines and based on visual field testing, cup-to-disc ratios, and a comprehensive ophthalmic evaluation. We also evaluated subjects’ “health literacy” using the validated Rapid Estimate of Adult Literacy in Medicine – Revised (REALM-R) word recognition test. This test takes less than 2 minutes to perform and helps health care providers understand a patient’s level of comprehension when using terms and discussing concepts regarding health care. All subjects received the REALM-R, and counselors administering patient-centered counseling were asked to tailor counseling to patients’ REALM-R scores.
| Time | Type of Counseling | Total Number (%) of Patients | P Value | ||
|---|---|---|---|---|---|
| Traditional, Number (%) of Patients | Patient-Centered, Number (%) of Patients | Patient-Centered + Audio, Number (%) of Patients | |||
| Baseline | 133 (100) | 133 (100) | 133 (100) | 399 (100.0) | |
| 1 month | 84 (63.2) | 86 (64.7) | 93 (69.9) | 263 (65.9) | .528 |
| 3 months | 51 (38.3) | 58 (43.6) | 54 (40.6) | 163 (40.9) | .875 |
| 6 months | 39 (29.3) | 36 (27.1) | 42 (31.5) | 117 (29.3) | .830 |
| 9 months | 26 (19.5) | 25 (18.8) | 29 (21.8) | 80 (25.1) | .502 |
| 12 months | 17 (12.8) | 15 (11.3) | 22 (16.5) | 54 (13.5) | .350 |
After being evaluated by the ophthalmologist, all subjects completed an 8-question glaucoma knowledge assessment questionnaire developed by the study team containing true or false questions ( Table 3 , Appendix B , Supplemental Material available at AJO.com ). Only subjects randomized to Group 3 received audio counseling with headphones. Subjects in all groups then underwent glaucoma education by counselors rigorously trained on the counseling protocols and were asked to complete the glaucoma knowledge assessment questionnaire to determine knowledge improvement.
| Question | Traditional Counseling | Patient-Centered Counseling | Patient-Centered + Audio Counseling | |||
|---|---|---|---|---|---|---|
| Before | After | Before | After | Before | After | |
| Knowledge about glaucoma | ||||||
| 1. Glaucoma is due to pressure in the eye that causes damage to the nerve at the back of the eye. | ||||||
| True a | 61 (45.9) | 121 (91.0) | 46 (34.6) | 121 (91.0) | 47 (35.3) | 121 (91.0) |
| False | 1 (0.8) | – | – | – | – | – |
| Not sure | 71 (53.4) | 12 (9.0) | 87 (65.4) | 12 (9.0) | 86 (64.7) | 12 (9.0) |
| 2. Early signs of glaucoma can be loss of side vision. | ||||||
| True a | 32 (24.1) | 115 (86.5) | 36 (27.1) | 104 (78.2) | 28 (21.0) | 117 (88.0) |
| False | – | 1 (0.8) | 1 (0.8) | – | – | |
| Not sure | 101 (75.9) | 18 (13.5) | 96 (72.2) | 28 (21.0) | 105 (79.0) | 16 (12.0) |
| 3. If you have glaucoma, your siblings and children are at increased risk of having glaucoma and should be screened for glaucoma by an eye doctor. | ||||||
| True a | 70 (52.6) | 119 (89.5) | 55 (41.4) | 113 (85.0) | 62 (46.6) | 118 (88.7) |
| False | – | – | 2 (1.5) | 1 (0.8) | 1 (0.8) | – |
| Not sure | 63 (47.4) | 14 (10.5) | 76 (57.1) | 19 (14.3) | 70 (52.6) | 15 (11.3) |
| 4. If glaucoma is not controlled properly, it can sometimes lead to permanent blindness. | ||||||
| True a | 41 (30.8) | 101 (75.9) | 29 (21.8) | 93 (69.9) | 35 (26.3) | 101 (75.9) |
| False | – | – | – | – | – | – |
| Not sure | 92 (69.2) | 32 (24.1) | 104 (78.2) | 40 (30.1) | 98 (73.7) | 32 (24.1) |
| 5. Glaucoma is a disease that usually requires lifelong treatment and follow-up examinations every few months. | ||||||
| True a | 112 (84.2) | 129 (97.0) | 114 (85.7) | 128 (96.2) | 114 (85.7) | 130 (97.7) |
| False | – | 1 (0.8) | 1 (0.8) | – | – | – |
| Not sure | 21 (15.8) | 3 (2.3) | 18 (13.5) | 5 (3.8) | 19 (14.3) | 3 (2.3) |
| Understanding reasons for follow-up | ||||||
| 6. If your doctor says you need a follow-up visit in several months but your eyes feel okay, it is somewhat less important that you attend that follow-up visit at the given time. | ||||||
| True | 7 (5.3) | 4 (3.0) | 1 (0.8) | 1 (0.8) | – | – |
| False a | 126 (94.7) | 128 (96.2) | 131 (98.5) | 131 (98.5) | 133 (100.0) | 133 (100.0) |
| Not sure | – | 1 (0.8) | 1 (0.8) | 1 (0.8) | – | – |
| 7. The purpose of follow-up visits is to assess whether glaucoma is well controlled or if there is glaucoma progression based on examination and visual field testing. | ||||||
| True | 61 (45.9) | 122 (91.7) | 49 (36.8) | 112 (84.2) | 48 (36.1) | 116 (87.2) |
| False | 1 (0.8) | – | – | 1 (0.8) | 1 (0.8) | – |
| Not sure | 71 (53.4) | 11 (8.3) | 84 (63.2) | 20 (15.0) | 84 (63.2) | 17 (12.8) |
| 8. It is important to follow up as advised by your doctor to make sure any eye drops are working and to check whether you need different medications, laser procedures, or surgery to prevent vision loss. | ||||||
| True a | 52 (39.1) | 120 (90.2) | 63 (47.4) | 121 (91.0) | 57 (42.9) | 128 (96.2) |
| False | – | – | – | 2 (1.5) | 1 (0.8) | – |
| Not sure | 81 (60.9) | 13 (9.8) | 70 (52.6) | 10 (7.5) | 75 (56.4) | 5 (3.8) |
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