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Uhr JH, Mishra K, Wei C, Wu AY. Awareness and Knowledge of Emergent Ophthalmic Disease Among Patients in an Internal Medicine Clinic. JAMA Ophthalmol. 2016;134(4):424–431. doi:10.1001/jamaophthalmol.2015.6212
Emergent ophthalmic disease can lead to permanent visual impairment or blindness if medical attention is delayed. Awareness and knowledge of emergent ophthalmic disease may be important for early medical presentation and maximization of visual prognosis in some cases.
To assess public awareness and knowledge of 4 emergent ophthalmic diseases.
Design, Setting, and Participants
This cross-sectional study was conducted from June 1 to July 30, 2015, in the waiting rooms of the outpatient internal medicine resident clinic at Mount Sinai Hospital. A written survey was administered to evaluate awareness and knowledge of retinal detachment, acute angle-closure glaucoma, giant cell arteritis, and central retinal artery occlusion. Awareness of each disease was assessed by whether participants knew what the diseases were (yes or no). Knowledge was evaluated by responses to 3 questions for each disease, including 1 question about basic pathophysiologic features, 1 question about basic symptoms, and 1 question about basic treatment options. All English-speaking patients who were physically and cognitively able to fill out the survey without assistance were considered eligible and offered the opportunity to participate during times of survey distribution; 237 completed the survey. Demographic information, including age, sex, race, income, and educational level, was collected. Data were assessed from August 1 to 7, 2015.
Main Outcomes and Measures
Awareness of each ophthalmic disease was determined by the proportion of respondents who answered yes, and knowledge was determined by the proportion of aware respondents who answered the knowledge questions correctly.
Two hundred thirty-seven patients (of 227 who gave complete demographic information, 76 men [33.5%], 151 women [66.5%], and mean [SD] age, 51.3 [16.8] years) completed the survey. Awareness of each of the diseases studied was low; 61 of 220 respondents (27.7%; 95% CI, 21.8%-33.6%) were aware of retinal detachment; 32 of 219 respondents (14.6%; 95% CI, 9.9%-19.3%), acute angle-closure glaucoma; 11 of 216 respondents (5.1%; 95% CI, 2.2%-8.0%), giant cell arteritis; and 10 of 218 respondents (4.6%; 95% CI, 1.8%-7.4%), central retinal artery occlusion. Respondents who were aware and knowledgeable ranged from 29 of 199 (14.6%) for the pathophysiologic features of retinal detachment, 1 of 208 (0.5%) for the symptoms and 2 of 203 (1.0%) for treatment of giant cell arteritis, and 1 of 193 (0.5%) for the pathophysiologic features of central retinal artery occlusion.
Conclusions and Relevance
Levels of awareness and knowledge of emergent ophthalmic diseases are low. These results indicate a need to educate the public about these acutely vision-threatening entities to ensure early medical presentation, to achieve the best possible visual prognosis, and to preserve quality of life.
The aim of this study was to assess awareness and knowledge of 4 emergent ophthalmic diseases—retinal detachment (RD), acute angle-closure glaucoma (AACG), giant cell arteritis (GCA), and central retinal artery occlusion (CRAO)—among patients presenting to an internal medicine clinic. Awareness and knowledge of these diseases is important for 3 reasons. First, similar research has focused on common causes of progressive visual loss, including diabetic retinopathy, glaucoma, age-related macular degeneration, and cataract. Studies have reported varying levels of awareness and consistently low levels of knowledge.1-8 Awareness and knowledge of emergent ophthalmic disease, however, remain undocumented.
Second, these emergent conditions, although rare, are clinically important. Patient failure to recognize symptoms quickly or to appreciate their severity can lead to delayed medical presentation and rapid and irreversible visual loss and blindness.9-12 However, many patients delay medical attention after onset of symptoms; long delays have been reported for each of the emergent diseases we studied.9,10,13-17 Moreover, low visual acuity and blindness substantially decrease patient quality of life and are associated with significant economic costs to the individual and society.18-24 Because the visual prognosis for these diseases depends on timely intervention and because increased awareness and knowledge of disease can lead patients to seek appropriate medical care,2 awareness and knowledge of these emergent ophthalmic diseases may help to preserve quality of life and achieve the best possible visual outcome for patients.
Third, if levels of awareness and knowledge are low, we could act on such a finding in a practical way. Interventions to educate the public about these emergent conditions can be modeled on successful awareness campaigns in other areas of medicine, such as stroke.
Given the importance of awareness and knowledge of emergent ophthalmic disease and the lack of research on this topic, we developed a survey to assess both issues based on surveys used in similar studies of more common ophthalmic diseases. Considering that these emergent conditions are rare, that health literacy in the United States is poor,25 and that levels of awareness and knowledge are low even for common eye diseases, we hypothesized that awareness and knowledge would be low in our study.
Question: Are patients aware of and knowledgeable about emergent ophthalmic disease?
Findings: In this cross-sectional study of 237 patients, awareness was 27.7% for retinal detachment, 14.6% for acute angle-closure glaucoma, 5.1% for giant cell arteritis, and 4.6% for central retinal artery occlusion. Awareness with knowledge was more limited, with only 14.6% of respondents demonstrating awareness and knowledge of retinal detachment and less than 10% demonstrating awareness and knowledge for each other disease.
Meaning: Efforts to educate the public about these diseases may be important for increasing awareness and knowledge, which may lead to earlier patient presentation and improved visual outcomes in some cases.
We distributed surveys (eMethods in the Supplement) assessing awareness of RD, AACG, GCA, and CRAO to 237 patients in the waiting rooms of the internal medicine resident clinic at Mount Sinai Hospital from June 1 to July 30, 2015. The internal medicine clinic was chosen in an effort to study a more representative sample of the public. Surveys were distributed and collected by the researchers (J.H.U., K.M., and C.W.), who remained nearby to answer questions about instructions. No additional assistance was provided. All English-speaking patients who were physically and cognitively able to complete the survey without assistance were considered eligible and were offered the opportunity to participate during times of survey distribution. Demographic information, including age, sex, race, income, and educational level, was collected. Ocular history and the time since the last dilated eye examination were collected. No identifying information was obtained. The institutional review board of Icahn School of Medicine at Mount Sinai approved this study. All participants provided oral informed consent.
Awareness of each disease was assessed by yes or no responses to questions as to whether participants knew what the diseases were. The questions were framed in this way because this method has been validated to assess awareness of glaucoma.8 Knowledge was evaluated by responses to 3 questions corresponding to each of the 4 diseases studied, including 1 question each about basic pathophysiologic features, symptoms, and treatment options. Each pathophysiologic knowledge question was multiple choice, with an option for “I don’t know” intended to deter guessing. Symptom and treatment knowledge questions were true or false with a third option for “I don’t know.” Patients were instructed not to guess.
Data were analyzed from August 1 to 7, 2015. Collected data were analyzed using χ2 tests. For education and income, χ2 tests for trend were performed. All other P values were derived from Pearson χ2 tests or Fisher exact tests where specified. Some subgroups of income, ocular history, and time since the last dilated examination (Table 1) were combined in analyses (Table 2) to increase statistical power. To assess whether knowledge questions were answered correctly via guessing, knowledge was analyzed by comparing correct answers and incorrect answers (including “I don’t know) among aware and unaware respondents. All statistical analyses were conducted using SPSS software (version 20; SPSS, Inc) except for the Fisher exact tests, which were conducted using SAS software (version 9.3; SAS Institute Inc). Respondents were asked to complete the entire survey. However, because not all participants answered every question, the number of participants who responded to each question is provided in our Tables, and the percentages calculated are based on the number of responses to individual questions.
Patient characteristics are described in Table 1. Of 227 survey respondents for whom these data were available, 151 (66.5%) were female. The mean (SD) age was 51.3 (16.8; range, 15-90) years. One hundred thirty-three of 227 respondents (58.6%) earned a high school diploma or a community college or 2-year associate’s degree. Our sample consisted largely of racial minorities, especially African American (107 of 231 [46.3%]) or Hispanic (87 of 231 [37.7%]) respondents. Almost 60% of respondents reported an income of less than $25 000 per year (128 of 214 [59.8%]), and more than 90% reported an income of less than $50 000 (193 of 214 [90.2%]). In 2014, the overall population of patients seen at this clinic was 41% Hispanic, 30% African American, 17% white, and 3% Asian. In the overall clinic population, more patients were 46 to 64 years of age (38%) than any other age range (35% were 21-45 years, 20% were 65-79 years, 5% were ≥80 years, and 1.5% were ≤20 years). Income data were unavailable, but 61% resided in Harlem and 21% in the Bronx, both economically disadvantaged areas. Educational level data for the overall clinic population were unavailable. The incidence of comorbid ophthalmic diseases among our respondents was low, with the most common being cataract (31 of 237 [13.0%]). Most respondents (146 of 227 [64.3%]) had a dilated eye examination within the past 2 years; 25 of 227 respondents (11.0%) never had one.
Table 2 summarizes awareness of the emergent ophthalmic diseases studied, which was universally low. Only 61 of 220 respondents (27.7%; 95% CI, 21.8%-33.6%) were aware of RD. This level of awareness was significantly higher than that of AACG (32 of 219 respondents [14.6%]; 95% CI, 9.9%-19.3%), GCA (11 of 216 respondents [5.1%]; 95% CI, 2.2%-8.0%), and CRAO (10 of 218 [4.6%]; 95% CI, 1.8%-7.4%). For RD, awareness increased with higher levels of education (P = .004). Respondents who reported never having had a dilated eye examination were less likely than those who had an examination to report awareness of RD (P = .005) or AACG (P = .03). We used multiple logistic regression to assess whether educational level and time of the last examination were independently associated with RD awareness. Neither variable had a significant association in these models (P = .23 for educational level and P = .71 for time of last examination), but these analyses are based on small numbers in some substrata, and effects were consistent with those of the unadjusted analyses. Table 3 demonstrates that awareness of one disease was significantly correlated with awareness of each other disease (P < .05) except for the pairing of RD and GCA, which was not significant (P = .06). No other patient characteristics were associated with awareness of any of the emergent diseases.
Knowledge levels were low for all emergent diseases (Table 4). Among all respondents, the proportion who were aware and knowledgeable ranged from 29 of 199 respondents (14.6%) aware of RD and knowledgeable about its pathophysiologic features, 1 of 208 (0.5%) aware of the symptoms and 2 of 203 (1.0%) of the treatment of giant cell arteritis, and 1 of 193 (0.5%) aware of CRAO and knowledgeable about its pathophysiologic features.
To assess whether aware respondents correctly answered knowledge questions at rates beyond that which could be attributed to guessing, answers to knowledge questions were compared between respondents who indicated awareness and unawareness (who presumably guessed on knowledge questions) (Table 4). Respondents who were aware of RD and AACG were significantly more likely to answer knowledge questions correctly for all knowledge categories than unaware respondents (P < .05 for all). Respondents who were aware of GCA were significantly more likely to identify the pathophysiologic features than unaware respondents, and those aware of CRAO were significantly more likely to demonstrate symptom knowledge than unaware respondents (both P < .001). These findings demonstrate that guessing did not account for the knowledge displayed by respondents aware of the diseases. We found no correlation between GCA awareness and knowledge of symptoms (P = .95) or treatment (P = .34) or between CRAO awareness and knowledge of pathophysiologic features (P = .34) or treatment (P = .85). We suspect that, because levels of awareness and knowledge of these diseases were so low, our study was underpowered to detect differences in these entities.
Levels of awareness and knowledge of emergent ophthalmic diseases were very low in our study. These findings are important given the severity of the consequences of delayed presentation of these diseases. One might assume that patients who experience a marked decreased in visual acuity, as in CRAO, would present emergently regardless of disease awareness or knowledge. Prior research does not show this to be true.9,10,13-17 Because increased awareness and knowledge of disease can lead patients to seek appropriate medical care,2 improving awareness and knowledge of these conditions would logically lead to a better visual prognoses for patients. Although further research must explore this possibility, our findings demonstrate the need for increased awareness and knowledge of emergent ophthalmic disease. We discuss each entity below.
Compared with the other diseases we studied, RD is relatively common, with an incidence of rhegmatogenous RD of 10.1 in 100 000 population per year26 and a prevalence 0.2% to 3.6% after cataract surgery.27 These statistics may explain why awareness of RD was higher than that of AACG, GCA, and CRAO.
Treatment of RD is time sensitive, especially if patients present while the fovea is still attached (fovea-on).9 Because RDs progress to foveal detachment (fovea-off) and because visual recovery is better after surgical treatment of fovea-on compared with fovea-off RDs, surgery before progression is important for a favorable visual prognosis.9 One study of 106 eyes with rhegmatogenous RD9 found that 46 patients (43.4%) had fovea-off RD by the time of presentation to an eye clinic. These patients waited a mean of 5.2 days after central visual loss before seeking care (vs 3.4 days for patients with fovea-on RD). Because visual recovery was diminished for those with fovea-off vs fovea-on RD—that is, in patients who delayed medical attention—the authors9 concluded that educating the public is critical to ensure the best possible visual outcome after onset of RD symptoms. Investigators in another study15 asked patients with RD to rate the importance of various causes of presentation delay on a Likert scale (range, 1-5), with 1 being unimportant and 5 being very important; 52% assigned a rating of 4 or 5 to the underestimation of disease severity.
We cannot discount the possibility that some of our respondents could not differentiate AACG from open-angle glaucoma. Such confusion only would have inflated awareness artificially. Therefore, awareness may be even lower than the already low levels we identified.
One study28 found that half of patients with AACG sought medical attention 3 days or longer after symptom onset. Another study16 reported that 31.7% of patients with a first attack presented to the physician 24 hours or longer after symptom onset. Almost 70% of patients reported that presentation more than 24 hours after onset of sudden blurring of vision was acceptable, and 35.2% found that presentation more than 24 hours after sudden onset of a painful eye was acceptable. However, delaying presentation is detrimental for visual prognosis. David et al10 found that patients treated for AACG within 24 hours of symptom onset had a favorable outcome compared with those with a delay of longer than 1 day. In addition, longer time to terminate the angle-closure attack resulted in a worse long-term visual prognosis.
Giant cell arteritis is the most common systemic vasculitis in western countries, with permanent visual loss being the most feared complication.11 Before corticosteroids were used, 35% to 60% of patients developed visual involvement.29 Visual loss is rare once corticosteroid therapy is initiated.30 Owing to the efficacy of corticosteroid treatment and the emergent nature of this condition, high-dose corticosteroids should be administered immediately to preserve vision once GCA is suspected.31,32 Despite the importance of timely treatment, Ezeonyeji et al17 found that, in 65 patients, the mean time from symptom onset to diagnosis was 35 days. In patients presenting with visual loss, mean time to diagnosis was 33 days.
Central retinal artery occlusion is a serious ischemic retinal disease that leads to time-dependent unrecoverable damage, with ischemic duration the most important factor in determining visual outcome.12,14,33 Hayreh et al34 demonstrated that after 97 minutes of retinal ischemia in rhesus monkeys, longer duration of occlusion resulted in more severe and irreversible retinal damage.
Clinical treatment of CRAO is controversial. The EAGLE (European Assessment Group for Lysis in the Eye) trial, which investigated the efficacy and safety of localized intra-arterial fibrinolysis (LIF) therapy, was discontinued after the efficacy of LIF was determined to be similar to that of conservative therapy and that rates of adverse effects were too high to justify the use of LIF.35
However, in their review of 31 patients with CRAO who presented to a participating EAGLE trial hospital, Rudkin et al13 found that the mean time from visual loss to presentation was 31 hours. Only 15 patients (48%) reached an in-hospital ophthalmologist capable of administering LIF within the 20-hour window of LIF eligibility. Although the eventual conclusion of the EAGLE trial was that LIF could not be recommended to treat CRAO35 and no clinical trials to date have proved the efficacy and safety of any treatment, the findings of the study by Rudkin et al13 reflect the challenge to success that any future therapy will face.
The aforementioned studies reveal that patients delay seeking medical attention after symptom onset in RD, AACG, GCA, and CRAO, possibly owing to lack of awareness and knowledge of these entities. They further show that quick intervention is critical to prevent permanent visual deficits. The present study adds to the existing literature by demonstrating that public awareness and knowledge of these conditions is limited. Improved awareness and knowledge may be important for early medical presentation, which may maximize visual prognosis in some cases.
Successful public awareness campaigns have been used for other medical conditions, such as stroke.36-44 The methods used in stroke awareness campaigns, including mass media, may be applicable to the vision-threatening diseases we studied. One direction for future research is to implement and evaluate the effect of such a campaign on awareness and knowledge of emergent ophthalmic disease.
Finally, although not the focus of our study, we should note that the onus of rapid recognition of ocular signs and symptoms does not belong entirely to the patient. Lack of awareness and knowledge among nonophthalmologist health care professionals is problematic. In one study,45 only 37% of general practitioners felt comfortable diagnosing RD. In another study,46 8% of optometrists were unfamiliar with the Shafer sign (vitreous pigment in the anterior vitreous) despite its high sensitivity and specificity for RD.47 In the same study,46 17% of optometrists who identified the Shafer sign reported not referring all of those patients to the hospital. Understanding the state of health care professionals’ knowledge of emergent ophthalmic disease could be instrumental in informing the development of an effective awareness campaign. Further research is necessary, but the literature thus far indicates that efforts to improve visual outcomes after these emergencies would be remiss not to include education of health care professionals. In stroke campaigns, programs have targeted medical students, nurses, and physicians.39
We recognize some limitations to our study. First, although seemingly intuitive, we cannot know that increasing knowledge and awareness will improve visual outcomes. Future research may study the effects of an awareness campaign on time to presentation and visual prognosis for these emergencies. Second, some respondents may have misunderstood our survey questions, in which case their answers might not be an accurate reflection of knowledge. We asked 1 question each about pathophysiologic features, symptoms, and treatment. Respondents may have been knowledgeable about other aspects of the diseases, but our survey precluded us from making this distinction. Although based on surveys used to assess knowledge for other ophthalmic diseases, our questions were not validated independently. In addition, because our questionnaire consisted of multiple-choice and true-false questions, the respondents may have arrived at correct answers through the process of elimination or guessing. However, the low levels of knowledge identified suggest that most respondents guess or eliminate choices. If elimination or guessing occurred, already-low levels of awareness and knowledge would be artificially elevated, and therefore falsely correct answers arrived at through the process of elimination or guessing do not detract from the meaningfulness of our findings.
Another limitation is that the number of patients in certain demographic categories analyzed was low. For example, only 9 white and 9 Asian patients were included, which is a function of the resident clinic population surveyed, and these numbers may have been too small to detect statistical differences in awareness by demographics. In a related matter, our respondents were predominantly racial minorities and of lower socioeconomic status, whereas the racial composition of the US population is 13% black and 17% Hispanic or Latino.48 The median US household income from 2009 to 2013 was approximately $53 000.48 This median is more than most of our respondents reported, but we asked about personal income, which is likely an underestimation of household income. Nonetheless, these demographic differences raise questions about generalizability. However, based on the uniformly low levels of awareness and knowledge in our study and on findings from similar studies on common ophthalmic disease,1-8 we suspect that awareness and knowledge of these ophthalmic diseases may be low in any studied population. Further research is necessary to confirm this possibility. Finally, our respondents were individuals who, by virtue of being surveyed in a medical setting, are presumably somewhat attuned to their health needs and have some degree of health literacy. Our sample may not be representative of a larger, less health-literate public. If true, our study would again only overestimate already low levels of awareness and knowledge.
We herein show that awareness and knowledge of RD, AACG, GCA, and CRAO are extremely low. Although these diseases are rare, delaying medical attention can lead to permanent visual deficits, including blindness, which diminishes patient quality of life and imposes substantial economic costs on individuals and society. Efforts to educate the public about these diseases and alarming ophthalmic symptoms are critical for increasing awareness and knowledge, which may lead to earlier patient presentation and improved visual outcomes in some cases.
Corresponding Author: Albert Y. Wu, MD, PhD, Department of Ophthalmology, Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Place, PO Box 1183, New York, NY 10029 (email@example.com).
Submitted for Publication: October 21, 2015; final revision received December 14, 2015; accepted December 21, 2015.
Published Online: February 18, 2016. doi:10.1001/jamaophthalmol.2015.6212.
Author Contributions: Mr Uhr and Dr Wu had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: Uhr, Mishra, Wu.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: All authors.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Uhr, Mishra, Wu.
Obtained funding: Wu.
Administrative, technical, or material support: Uhr, Wei, Wu.
Study supervision: Wu.
Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported.