Barriers to and Facilitators of Diabetic Retinopathy Screening Utilization in a High-risk Population

Abstract

Background:

Diabetic retinopathy (DR) is among the leading causes of vision loss in the US, yet an estimated 50% of patients with diabetes do not receive recommended annual screening eye exams. Patients with diabetes and low socioeconomic status or who are racial/ethnic minorities are at increased risk for vision loss.

Methods:

Qualitative interviews were conducted with 24 patients with diabetes at a federally qualified community health center in an urban area regarding factors influencing their use of screening. The interviews were recorded, transcribed, and analyzed line by line to identify themes. The themes were organized in a theoretical framework of factors influencing receipt of screening.

Results:

The median age of participants was 57.5 (range 44 −73). Ten participants identified as female and 14 as male. Participants identified as Black (14), White (4), Hispanic (3), and Other/no answer (3). Twenty-three had health insurance. Twenty-three had received an eye exam within in the past year and 17 reported that they receive eye exams at least yearly. 415 comments were analyzed, 22 concepts were identified under 7 broader themes and two overarching categories of individual and structural factors. Themes included vision status, competing concerns, emotional context, resource availability, in-clinic experience, cues to action, and knowledge about diabetes.

Conclusions:

The factors that influence diabetic retinopathy screening utilization are complex. Visual symptoms and the need for glasses are important facilitators of screening. Many patients lack knowledge about diabetic retinopathy and the utility of preventative eye care. New strategies for engaging high-risk populations are necessary.

Background

Diabetes and its complications are a growing epidemic with 30.3 million people in the United States currently living with diabetes [1]. Diabetic retinopathy (DR) is among the leading causes of vision impairment and blindness in the United States, affecting more than 7.7 million Americans and projected to rise to 16 million people by 2050 [2]. Diabetic retinopathy is asymptomatic in its early stages; therefore, routine dilated eye examinations are essential to early detection, treatment, and prevention of major vision loss [3]. Early treatment of DR can reduce severe vision loss by up to 94%, making blindness largely preventable [4]. Yet, one in ten people with diabetes will develop a vision-threatening form of DR [5]. In particular, racial and ethnic minorities are at increased risk of developing DR and vision-threatening forms of DR [1,6–8]. Guidelines recommend that patients with type 2 diabetes be screened annually for DR by a comprehensive dilated eye examination [9]. Despite the importance of annual screening for DR and the effectiveness of early intervention, an estimated 50% of patients with diabetes do not receive necessary screening [10]. In particular, racial/ethnic minority status and low socioeconomic status have consistently been shown to be associated with decreased utilization of eye examinations and decreased access to eye care [10–14]. In short, the patient populations with greater disease burden are also less likely to get necessary eye examinations.

Understanding the factors that influence receipt of eye care by high-risk patients with diabetes is essential for the design of effective interventions that increase screening utilization and decrease the burden of DR. Previous studies have used focus groups to investigate the receipt of eye care more generally and have shown that patients’ perceived barriers to eye care include cost, insurance status, transportation, lack of communication with the physician, lack of trust, burden of systemic disease, absence of symptoms, and no perceived need for examination [8,15,16]. Research that solicits the experiences of high-risk patients with diabetes specifically is necessary to understand how this unique population engages with diabetic eye care. Qualitative methods offer a way to explore the diverse experiences of patients, particularly from at-risk communities [17]. We present the findings from individual qualitative interviews with high-risk patients with diabetes from a federally qualified community health center about their use of DR screening, and we propose a theoretical framework to characterize the factors that influence receipt of diabetic eye care in this population.

Methods

The institutional review board of Yale University approved the study protocol. Discussion with leaders of local community health organizations through the Yale Center for Research and Engagement informed the study design. Semi-structured, qualitative interviews were conducted with patients with diabetes at a federally qualified community health center (FQHC) and its satellite clinics in New Haven, Connecticut between July and August 2017. The FQHC serves a patient population that is 69% Black or Latino and 64% of patients have income below the poverty line [18]. The interview settings included a primary care clinic, a wellness education center, and an on-site eye clinic. A convenience sample of patients with diabetes was recruited by approaching patients before or after their appointments. All participants gave written informed consent and consent to be audio-recorded. No compensation was given. Self-reported participant demographic information was collected, including age, gender, race, insurance status, and time since diagnosis with diabetes. All participants reported having diabetes for at least one year.

Semi-structured qualitative interviews were conducted in English with participants by author E.F. in a one-on-one setting. Based on the principles of grounded theory, the purpose of these interviews was to generate hypotheses from the data rather than to test a predetermined hypothesis [17,19,20]. Participants were asked open-ended questions about their experiences with eye exams, what factors influenced their decision to pursue or not to pursue an eye exam, and any barriers they might have faced to accessing eye care (Table 1). Follow-up questions were used to encourage participants to elaborate as necessary. The interview guide was periodically re-evaluated and rephrased using a reflection checklist as necessary to ensure clarity and internal validity [19]. The average length of the interviews was 10 minutes.

Table 1.

Interview guide.

Interview Guide
When was the last time you had an eye exam? How often do you get eye exams?
Can you tell me about your experience the last time you had an eye exam?
What made you decide to get an eye exam? What motivated you to go?
At the time that you were diagnosed with diabetes, what, if anything, were you told about eye care?
Have you ever been told by a healthcare provider that diabetes can affect your eyes? How did you learn that diabetes can affect your eyes?
Has anything ever prevented you from having an eye exam? Have you ever cancelled or not shown up to an eye exam appointment? If so, why?

The interviews were recorded using a H4next Handy Recorder (ZOOM corporation), transcribed verbatim with Trint online transcription service (Trint Ltd.), and analyzed with NVivo software, version 11 (QSR International.) The transcripts were analyzed according to the concepts of grounded theory and the constant comparative method [20]: the transcripts were reviewed line by line and codes were created to define concepts inductively from the data. Coded text was reviewed to identify overarching themes and codes were refined as appropriate until a final comprehensive coding framework was reached. This coding framework became the basis of our theoretical model. The broader themes of the coding framework were organized in a socio-ecological model, which situates health behaviors in the context of individual (e.g. attitudes, behaviors), social (e.g. social networks, social support), and structural (e.g. access to care) factors [21,22].

Results

A total of 24 people participated in the study. The median age of participants was 57.5 (range 44 −73). Ten participants identified as female and 14 as male. Participants identified as Black (14), White (4), Hispanic (3), and other/no answer (3). Twenty-three participants had health insurance. Twenty-three participants had reportedly received an eye exam within in the past year and 17 reported that they receive eye exams at least yearly. The demographic information is summarized in Table 2.

Table 2.

Participant demographic information.

Demographic Information	N = 24
Age, median (range)	57.7 (44-73)
Gender, No. (%)
Female	10 (42)
Male	14 (58)
Race/ethnicity, No. (%)
Black	14 (58)
White	4 (17)
Hispanic/Latino	3 (12.5)
Other/no answer	3 (12.5)
Insurance Status, No. (%)
Insured	23 (96)
Uninsured	1 (4)
Most Recent Eye Exam, No. (%)
Within previous 12 Months	23 (96)
Not within previous 12 months	1 (4)
Eye Exam frequency, No. (%)
Annually or more frequently	17 (71)
Biennially or less frequently	7 (29)
Duration of diabetes, No. (%)
5 years or less	8 (33)
10 years or less	6 (25)
More than 10 years	10 (42)

415 interview comments were coded at 22 nodes under 7 broader themes. These themes were further classified into either individual factors or institutional and structural factors based on a socio-ecological model. Individual factors included the themes of vision status, competing concerns, and emotional context. Institutional and structural factors included the themes of resource availability, in-clinic experience, cues to action [23,24], and knowledge-creating experiences. This coding framework became our theoretical model of the factors affecting utilization of eye examinations in our patient population (Figure 1).

Figure 1:

Theoretical framework of factors affecting utilization of eye exams in patients with diabetes, and representative quotes from participants.

Individual factors included vision status, competing concerns, and emotional context.

Vision status:

Participants indicated that changes in their vision was the primary factor that prompted them to seek an eye examination. In the absence of any visual symptoms, some participants saw no reason to obtain an eye exam. One participant with diabetic retinopathy recalled not seeking an eye exam until his vision was affected by a retinal hemorrhage: “[The doctors] started saying ‘You gotta see an eye doctor.’ …[I] blew off the first appointment, and then I was half-blind, so I saw the doctor properly.” Many participants stated that updating their glasses each year was a motivating factor to get exams regardless of their diabetes. One participant recalled: “I was struggling to get here [to the eye clinic]. I wasn’t gonna come. I was going to call because of my foot, because I can’t put pressure on my foot …I just-I made it here, I struggled. Again, because I want some new glasses.”

Competing concerns:

Participants expressed that competing concerns such as other health problems, childcare responsibilities, struggles with addiction, and employment scheduling influenced their ability to get regular eye exams. One participant recalled that her previous job schedule kept her from making health appointments: “I canceled a few appointments over the last three months because I had a new job. So now I’m going to work on getting all those appointments rescheduled and done because I’m not working now.”

Emotional context:

Some participants expressed fear or hesitation about receiving eye exams because they were concerned that they would receive bad news about their health or because they wanted to avoid painful procedures. One participant stated: “I didn’t think I needed [an eye exam]. And a lot of times when I go to the doctor all of the sudden I need stuff And I didn’t want that to happen, I wanted to think that my eyes were going to be OK.” In contrast, others indicated that a desire to be informed about their health motivated them to seek exams. Some participants mentioned having a major health event, such as a hospitalization, that was a “wake up call” that motivated them to be proactive about accessing healthcare.

Institutional and structural factors that influenced receipt of eye care included resource availability, in-clinic experience, cues to action, and knowledge-creating experiences.

Resource availability:

Insurance status and the cost of an eye exam were important factors for participants. Some participants reported being uninsured as a barrier to receiving eye care in the past. Several participants commented that they received eye exams every two years as allowed by their insurance. However, medically necessary eye exams for patients with diabetes are typically covered annually by most insurance plans. Access to transportation to the eye clinic was another important factor, though most participants reported that they had no issues with finding adequate transportation. Additionally, some participants reported that experiencing homelessness or being incarcerated prevented them from seeking eye exams. One participant described not having access to eye care while incarcerated: “I was in prison, so they didn’t- they don’t do all that [eye care]. So when I came home I got everything done.”

In-clinic experience:

Participants reported that communication with their healthcare providers influenced their use of eye care either positively or negatively. One patient with a positive experience said, “The diabetes has not affected me so far from what [the doctor] tells me when she sees me in here [at the eye clinic.]…I think the process works. They are on top of it every year when they go in they are doing the full work up on me and letting me know that nothing’s happening so far.” Another participant spoke about conflicting information from her providers:

“I’m still having these blurred visions as of today, and- but they’re saying that my eye vision is OK… I don’t really know what to think of it because this [doctor] saying that and this one is saying that, but I still have the blurry vision from time to time. So that’s something that bothers me from time to time but what can I do about it? And this one’s saying it’s OK, this one’s saying I have a trace of cataract but don’t worry about it.”

Other participants described instances of clear miscommunication: one participant who needed surgery on his retina mistakenly believed that the doctors would remove his eye to perform the surgery. Some participants reported that feeling respected by their eye doctor and having good interactions with clinic staff were also factors that influenced their experience with eye care.

Cues to action:

Participants reported that being prompted by a primary care provider to receive an eye examination played a large role in their decision to seek an eye exam. For example, one participant said: “If the doctor would suggest me have an eye exam, regardless of whether I had diabetes or not I would have followed out the instructions. If I was on my own I don’t think I would have.” Another participant felt that eye care was not emphasized by his primary care provider, which delayed his seeking an eye exam:

“I should have been scared into going [to the eye doctor] a little bit, or at least, you know, given some kind of explanation as to what [diabetic retinopathy] was. It seemed to be at the bottom of the list. I have a lot of side effects from diabetes like neuropathy and, you know. But my eyes for some reason seemed to be at the bottom of the list of the importance layer when I talked to doctors.”

Participants also reported that following an annual exam schedule and getting appointment reminders were useful prompts to seek eye exams.

Knowledge-creating experiences:

Several participants reported experiences that informed them about diabetes’ effects on the eye that motivated them to obtain eye examinations. Some participants learned about diabetic eye disease from their provider, others learned from family and friends with diabetes, and some participants reported knowing people who had gone blind from diabetic eye disease. In contrast, some participants appeared to be unaware or misinformed about diabetic retinopathy: one participant believed that cataract surgery protected him from diabetic eye disease: “The diabetes haven’t--it won’t affect me because I’ve got it - I got lenses in my eyes. So it don’t, you blow, it don’t really affect my vision like it do some people…They said I could go get an eye exam. But what am I getting the eye exam for? I already see long distance, you blow, so.’ Some participants stated that they had never been told by their doctor that diabetes could affect their eyes or that they needed an eye examination.

Discussion

Diabetes is a burdensome disease that places patients, especially racial/ethnic minorities and people with low socio-economic status, at risk of developing diabetic retinopathy and vision loss [10–14]. Many patients at high risk of developing DR are not receiving the annual screening examinations necessary to identify DR and intervene before preventable vision loss occurs [4,8,10]. We have proposed a theoretical framework of factors that influence receipt of DR screening based on qualitative interviews with high-risk patients with diabetes. These factors are complex and the results of this qualitative study add depth and detail to our understanding. The participants in this study spoke about the emotional context behind their disease, their satisfaction or frustration with their providers’ communication, and their experiences balancing the demands of their lives with their health issues and available resources.

The results of our interviews indicate a gap in many patients’ understanding of DR and the utility of preventative eye care. Although DR is asymptomatic in its early stages, many participants did not seek eye care unless they noticed changes in their vision or they did not perceive a need for annual eye exams if they felt their vision was good. Many participants stated that their need for glasses or contacts was a main motivating factor to pursue a yearly eye exam. It is unclear whether these participants would still be receiving eye exams to screen for DR if they did not already visit the eye doctor for corrective lenses. Participants exhibited a range of knowledge about DR, with some participants understanding that blindness can result from DR and others only expressing that they knew vision could be affected in some way. Our results also show that insurance continues to be an important factor influencing patients’ receipt of eye care, and that the overlapping benefits of vision insurance and medical insurance are a source of confusion for some patients that may negatively impact screening adherence [25,26].

Many of the factors influencing the receipt of DR screening identified by this study, such as insurance status, communication with physicians, burden of systemic disease, absence of visual symptoms, and no perceived need for examination, align with barriers identified by previous literature about receipt of eye care more generally [8,15,16]. In contrast to these previous studies, transportation was not identified as a major barrier by participants in this study, nor was a lack of trust in eye care providers. This may be due to the study’s urban location or differences in patient population.

New, innovative approaches are necessary to increase awareness about DR, expand access to screening, and increase screening utilization. Telemedicine provides one such approach, in which digital retinal photographs are taken and sent to reading centers for interpretation. Telemedicine can provide high diagnostic accuracy, increase rates of DR screening, and can be an important tool in settings that serve minority patient populations [27–30]. In addition, electronic health records are a tool that can generate screening reminders and improve communication and coordination between primary care providers, eye care providers, and patients to facilitate screening [31]. Finally, federally qualified community health centers (FQHCs) are well-positioned to address the eye care disparities in high risk patient populations, but further integration of eye care services is necessary [32,33]. The FQHC in this study had an on-site comprehensive eye clinic, making it among the only 29% of FQHCs that provide on-site dilated eye examinations for patients with diabetes [32,34].

Further research is essential to furthering our understanding of underutilization of care, barriers to care, and factors that facilitate access. More data is needed from those with diabetes who have not been screened within the past 12 months. The findings reported here combined with more interviews with patients with diabetes not screened may provide the basis for a decision-model for DR screening in a high-risk population. Improving the utilization of DR screening by high risk populations is a critical imperative given the disproportionate burden of DR and preventable diabetes-related blindness faced by these populations.