Contextual Factors Influencing Screening for Diabetic Eye Disease in Alabama: Provider Perspectives

Abstract

Introduction/Objectives: Comprehensive eye exams are recommended at least every 2 years for people with diabetes for early identification and treatment of diabetic eye disease, but screening rates remain suboptimal. Our objective was to qualitatively assess barriers and facilitators to completing recommended eye exam screening for patients with diabetes among providers and practice staff. Methods: As part of a larger initiative, we conducted discussion groups with healthcare providers and practice staff to evaluate factors related to referral and screening for diabetic eye disease at 2 sites, a safety-net healthcare system and a specialty clinic. Discussions were audio-recorded and transcribed. Combined inductive, deductive thematic content analysis was conducted, applying the Practical Robust Implementation and Sustainability Model to organize themes and subthemes. Results: Two discussion groups with 28 participants were conducted in August 2023. Themes included existing processes for referrals, scheduling, and tracking; patient-level determinants including transportation and financial barriers and other competing demands to receiving recommended eye screening; clinic or system-related factors, and considerations for process improvement for eye exam referrals and appointments. Conclusions: These findings can be applied to determine the most effective strategies to improve the rates of recommended eye exam referral and screening rates in people with diabetes.

Introduction

Diabetic retinopathy is the most common microvascular complication of diabetes and the leading cause of new cases of blindness among working age adults in the United States. ¹ In 2021, an estimated 9.6 million people with diabetes in the United States had diabetic retinopathy with 1.84 million people living with vision-threatening diabetic retinopathy.^2,3 Given the high prevalence of type 2 diabetes in Alabama, the state has a significant burden of diabetic retinopathy with an estimated 3.06% of the population, approximately 150 000 people, affected.^4,5 As with diabetes prevalence, racial and ethnic minorities are more likely to be affected; non-Hispanic Black and Hispanic individuals have higher prevalence of diabetic retinopathy than non-Hispanic White individuals. ²

Early identification and treatment of diabetic retinopathy can reduce the risk of progression to severe vision loss by over 90%. ¹ The American Diabetes Association (ADA) Standards of Care recommend dilated and comprehensive eye exams by an ophthalmologist or optometrist for people with type 2 diabetes at the time of diagnosis and then at least every 1 to 2 years. ⁶ Although these evidence-based guidelines for screening exist, implementation is suboptimal and a large proportion of people with type 2 diabetes do not receive recommended comprehensive eye exams annually or biennially. ⁷ In 1 study of Medicare beneficiaries with diabetes, 54% of people with diabetes nationally had an annual eye exam contrasted to only 47% in Alabama and only 43% of Black adults in Alabama. ⁸ Many factors contribute to the research-to-practice gap, including educational deficiencies, time constraints for providers, lack of feedback mechanisms and decision support, limited access to specialty care, as well as cultural factors and organizational climate. Improved processes, tools, and resources for providers and patients are needed to increase rates of screening for diabetic eye disease.

Understanding contextual factors from the very beginning is necessary to tailor an intervention or implementation strategies to a specific setting. ⁹ In this study, our objective was to qualitatively assess barriers to documentation, screening, and referral to recommended eye screening for patients with diabetes among providers and practice staff through guided discussions in 2 clinical settings in Alabama.

Methods

Setting

We conducted this qualitative study at 2 sites in a densely populated county in Alabama, with a resident population exceeding 670 000. One site is a safety-net healthcare system offering a range of ambulatory care services such as primary care, a multi-disciplinary diabetes clinic, and ophthalmology. The second site is a specialty endocrinology clinic integrated within a large academic medical center. This qualitative study was part of a larger quality improvement initiative; we conducted discussion groups at each site.

Participants

We employed purposeful sampling to select participants for this study, targeting a diverse group of healthcare providers including residents, physicians, advanced practice providers, nurses, and administrators. Invitations were extended via email to the relevant providers and administrators involved in primary care and specialty care for patients with diabetes (eg, endocrinology, ophthalmology) at each site. Participants were offered a complimentary lunch as a token of appreciation for their involvement. Additionally, each participant received a gift card for their time and contribution. This study was approved by the Institutional Review Board, and all participants provided informed consent prior to the discussion.

Data Collection

To identify facilitators and barriers to diabetic eye exam referrals, appointment scheduling, and documentation and tracking, we developed a discussion guide with questions related to each of these processes. The guide also included questions about past or current quality improvement initiatives related to diabetic eye health and communication about risk of diabetic eye disease. The facilitator’s guide is provided in Table 1. Both discussion groups were conducted in August 2023. The discussion groups were conducted in-person, taking place in designated conference rooms at both study sites. Each session spanned a duration of 1 h. Facilitation of the discussion groups was carried out by program directors holding an MPH and PhD qualifications in clinical psychology, respectively. Their extensive experience in qualitative research provided valuable expertise in guiding the discussions. All discussion groups were audio-recorded, subsequently transcribed, and validated for data quality and accuracy. In addition to the recordings, detailed notes were taken during the sessions to supplement the transcript data.

Table 1.

Focus Group Discussion Guide.

Questions and prompts
Can you walk me through the process you use to refer a patient with diabetes for a dilated, comprehensive eye exam? Prompts: Where are patients referred for eye exams (internally or externally)? What challenges have you faced in referring patients for eye exams?
What do use as a reminder or tracking system for eye exams for your patients with diabetes? Prompt: Clinical reminders/alerts, staff intake or screening, other?
For patients who complete their referral, how do you access the results from their eye exam? Prompts: And how are those results integrated into the electronic health record (EHR), if at all? Please describe how your organization integrates patients eye health results into their care plan.
How do you talk to your patients with diabetes about their risk for diabetes retinopathy or other diabetes-related eye conditions? Prompts: What advice do you have to encourage your patients with diabetes to prioritize their eye health and have their eye exam annually? What have you seen that works well or does not work?
Could you please share any current or past quality improvement (QI) work focused on improving eye care screening and referrals within your institution(s)? Prompt: How is this QI work that you’ve described communicated to health care providers across your institution/system?
Have there been times when you did not refer your patients with diabetes for eye care services? Prompts: What were the reasons/obstacles behind this decision? What systems/processes are in place to address the reasons/obstacles?
For your patients with diabetic retinopathy, what is their experience like with seeing an ophthalmologist regularly? Prompts: Are your patients with diabetes able to access eye care if urgent needs arise? How might we improve their experience with their eye health professionals?
Is there anything else you would like to share with us today?

Data Analysis

Transcripts from the discussion groups were coded by 2 members of the research team; a program manager with an MSPH and extensive training in conducting qualitative research, and a primary care physician-researcher with proficiency in qualitative research. A combined inductive and deductive approach was applied to perform qualitative content analysis. Each reviewer read both transcripts to gain an overarching understanding of the group discussions. Reviewers developed initial codes from facilitator’s guide as part of the deductive analysis. Reviewers identified meaningful units in the transcript text; codes were then created and assigned to each meaningful unit. Emerging codes were developed during the coding process. Reviewers discussed the codes to reach consensus about codebook. Reviewers independently applied the codebook to each transcript, then subsequently reviewed the codes together to ensure consensus. Overall, 68 comments were captured, organized into 20 subthemes and 6 overarching themes. The number of discussion groups was based on the number of sites enrolled in the overall quality improvement initiative. To reach saturation of themes, it would have been necessary to enroll additional sites, which was beyond the scope of the pre-implementation phase of this initiative.

Additionally, the Practical Robust Implementation and Sustainability Model (PRISM) was integrated into our thematic analysis to help us organize the major themes and subthemes.^9,10 PRISM outlines multi-level contextual domains that interact with an evidence-based intervention program, including perspectives from patients and organizations, characteristics of patients and organizations, implementation and sustainability infrastructure, and the external environment. PRISM can be applied in pre-implementation or planning stages for a future intervention. In this study, we chose to apply PRISM because its domains were aligned with the themes and subthemes developed from the discussion groups.

The software application NVivo (version 12 Plus) was utilized for data management, coding, and organization. Preliminary findings from the thematic content analysis were presented to participants for member checking, enhancing the validity and trustworthiness of our results.

Results

Discussion Group Participant Characteristics

Table 2 summarizes the characteristics of the participants in the 2 discussion groups (N = 28). Physicians and faculty were the predominant group within the sessions (42.9%) followed by clinical managers and administrators (25%). Time within current roles ranged from less than 1 year to 27 years, with fellows and administrators, on average, spending less time in their current role as compared to providers and clinical managers/supervisors.

Table 2.

Characteristics of Discussion Group Participants.

	N (%)	Time in role, range in years
Safety-net healthcare system, N = 16
Physician (primary care, urgent care, ophthalmology)	5 (37.5)	5 to 8
Advanced practice provider (primary care)	2 (12.5)	9
Clinical managers or supervisors	7 (43.8)	<1 to 27
Administrators	2 (12.5)	<1 to 4
Specialty clinic, N = 12
Faculty	7 (58.3)	3 to 25
Fellow	4 (33.3)	1 to 2
Student	1 (8.3)	N/A

Qualitative Themes and Subthemes

We organized our themes into 4 domains using the PRISM framework as a guide: organizational characteristics (eg, existing processes for referrals and scheduling for diabetic eye exams), patient characteristics (eg, competing demands, knowledge and beliefs), organizational perspectives (eg, determinants, capacity), and implementation and sustainability infrastructure (eg, information technology and support, policies, personnel, skills or training).^9,10 We present themes, subthemes, and illustrative quotes from the 2 discussion groups in Table 3 and briefly summarize these below.

Table 3.

Summary of Major Themes and Subthemes by PRISM Domain and Site.

PRISM domains	Themes	Subthemes and illustrative quotes by site
		Safety-net	Specialty
Organizational characteristics	Existing processes for referrals, scheduling, and tracking	Placing referrals for diabetic eye exams “So typically, we put in a referral to ophthalmology, and you can put in the reason for referral with a diabetes evaluation.” “If they have insurance and they can go to [Eye Hospital] or whatever, that's fine. We are putting in a referral to see an ophthalmologist to have the eye exam.” “The only people I do not refer in-house are those who say specifically I see an outside provider.” Scheduling appointments for eye exams “We send it to referral management, and they are the ones who will schedule it.” Documenting or tracking completed eye exams “Usually, they’re already engaged. And so they say, ‘I see them. This is the date I saw them’. I record that in my notes and trust that they are doing that.”	Placing referrals for diabetic eye exams “Most of the time, I don’t refer . . . So it would be the minority where you are placing an order to refer. Most of the time, if it doesn’t happen at [Eye Hospital], I don’t place any orders . . . But either they know where to go, or they would figure it out, in a way.” “For the most part, our patients are probably established with some sort of eye doctor, somebody that they’re already seeing for glasses or something like that. And so whenever it comes to them getting their dilated eye exam, then they’re like, ‘Oh, I know where I’m going to go’. And so it’s just a matter of them going back to that person.” Scheduling appointments for eye exams “. . . And I leave it up to either our staff or the [Eye Hospital] staff to call and get it scheduled. It’s definitely not a 100% hit rate, even if I put a referral in, whether they actually will see them or not.” Documenting or tracking completed eye exams “My note. I just go to when their last eye exam was. And in my note, it says there’s any eye exam since then. And if it’s no, then I tell them, ‘Okay, you are due on this day’, or whenever they are supposed to. Some patients, it’s once a year. Some it’s more frequent. So if I know I tell them, otherwise, it’s just up to the patient to know that.”
Patient characteristics	Patient-level determinants	Barriers to attending an additional appointment “And it’s an extra physical appointment. So even if they know, they still have to come back a different day that they’re not with their PCP. It’s not like we’re sending them up to get a retinal scan and then differentiating, do you need to see an ophthalmologist or not? . . . Our patients already have barriers with transportation and all kinds of things that make that hard even if they know about it.” Communicating with patients about risk for diabetic eye disease “I think in my experience, I don’t think patients are very resistant to [eye exams]. And when I talk to them about diabetes, I actually frame it within other potential complications of diabetes . . . And so we talk in the systematic way . . . So I don’t see much resistance from the patient’s standpoint in that.” Missed appointments for eye exams “My barrier is my patients don’t go. I refer them. And they do not go, and they miss eye exam after eye exam after eye exam, and I cannot get them to get their eye exam.” Limited motivation for eye exam if no vision symptoms “I think if you don’t feel like you have an eye problem, you know you should go be checked because you have diabetes, but you feel like your vision is okay you’re less motivated, probably, to go to the appointment.”	Financial barriers to eye exams “There are some financial barriers for some patients where I'll say, ‘You’ve got to get this eye exam going’. And I know they have eye disease. It’s like, ‘Oh, well, I can’t really afford it right now’. They have insurance, but it’s not great insurance, or it’s a huge co-pay or something. Or they can’t get there, it’s just too far, the gas. So for those patients, it’s not much I can do.” Communicating with patients about risk for diabetic eye disease “I usually start by saying that this is the number one cause of vision loss in the country, when I start talking about the complications. And then, ‘do they have an eye doctor? When was the last time they saw them? Do they know if they have any complications in their eyes from diabetes?’ So you can start there.”
Organizational perspective	Clinic or system-related determinants	Difficulty obtaining outside records for eye exams “Outside records are a big issue here in general. If it’s for just a routine retinopathy scan, I usually don’t require them [patients] to give me records. I trust that they said, Yes, I did that.” Challenges scheduling appointment, notifying patients “. . . A new appointment that has to go through referral management, and then they have to communicate with the patient. And I don’t know that they actually verbally talk to them. It might just be a letter that gets lost. So oftentimes, they [patients] don’t show up not because they didn’t think it was important because they actually just didn’t know they had that appointment.” Competing demands in primary care “I think one of the barriers is requiring a referral because then it requires everyone to always remember to put that in when they’re managing a whole bunch of other things. This doesn’t require my level of expertise to say that this patient requires this, right?” Limited utility of clinical reminder functions “And its [clinical reminder function] supposed to pull in from the diabetes-specific evaluation exam which is why probably some of your data is not going to be a 100% accurate because sometimes the health tools will say my patient needs an eye exam. Well, they just saw eye clinic three months ago.” Limited follow up with patients after missed appointments “The problem with these referrals is if someone no-shows or doesn’t get scheduled, you don’t know that until their next visit. No one’s calling that patient to say, ‘Why did you no-show for that appointment? Did you not have transportation? Did you not know about it?’ It just gets dropped until their next visit . . . So unless someone’s looking, you don’t know that they didn’t go.”	Difficulty obtaining outside records for eye exams “If my patients live out of town, most of the time they don’t want to drive back for an eye exam. So they request to schedule their own appointment. Then it’s hands off. And it’s very questionable whether I get a report. It’s more patient says it was done, tells me that it was fine, and that’s all I know.” Challenges scheduling appointment, notifying patients “And it’s also hard to schedule the appointment because, I can’t confirm this 100%, but if the patient walks out the door, and a lot of times I don’t have the actual appointment to the eye doctor at that time, they’re going to, ‘call’.” Challenges determining the appropriate place of care for a patient “And then if we do refer them, it’s almost invariably [Eye Hospital]. Although if they’re in [County Name], sometimes they’re at [safety-net]. And then we are still referring to [Eye Hospital], but then they can’t be seen at [Eye Hospital], and then it gets lost. Because they’re really supposed to have been referred to [safety-net] and then they don’t get to the [safety-net] clinic. Or the [Free Eye Clinic] if they don’t have insurance, which I don’t even know how to get them into [Free Eye Clinic], but I know it’s covered for indigent care and it’s a thing.”
Implementation and sustainability infrastructure	Considerations for process improvement for eye exam referrals and appointments	Improved processes for scheduling diabetic eye exams “It works a lot easier when they are in the clinic and it should be so easy just to pick up a phone, get an appointment for them and give it to them when they’re leaving with the discharge instructions.” Initiatives to improve referral access and completion “With our team-based care pilot, this [missed referral appointments] is one of the most frequent things we’ve identified, and [patient encounter specialist] will just keep rescheduling them until they go to their eye appointment. We’re doing this team-based pilot where we have all of these people involved, and we identify what has this patient not done that we ordered. And then we proactively make sure it happens . . . it has been very effective.” “I do think we have had opportunities with administration to kind of look at just referrals in general and how to improve them. And we’ve implemented some changes that I do think have made a difference with the help of administration . . . And that’s been changed to allow us when we identify that someone has missed a service that they need, including ophthalmology, that we can intervene and have our [patient encounter specialists] go ahead and schedule the appointment while the patient is there so that they know when the appointment is . . . They can be an active member in creating this appointment because I think sometimes patients feel kind of left out of that process, right?” Ambiguity re: ownership of placing and tracking referrals “Ideally, I would love if there was a process where we identify a patient has diabetes, we identify when their last eye exam was. And then someone just goes ahead and schedules them . . . you take it out of a provider having to put in a referral.”	Availability of ophthalmology on-site “If we had them [ophthalmology] embedded in our clinic, it would be a lot better if they were down the hall. In our system, it’s a little unique because they’re in another building and on another electronic medical record.” Use of retinal cameras “We also had a retinal camera in clinic, and we could do retina screens ourselves. But it’s just knowledge about how to use, and what to do with that information.” Previous QI initiatives related to diabetic eye exams “I can’t remember what the metric was from, where we had to have those HEDIS guidelines, where we had to have it in there. And we had a system in the clinic of [tracking]. We met with the [Eye Hospital]. We gave them the fax number. We had somebody scanning them into the charts and all that kind of stuff. And it was kind of weak.” Lack of common electronic medical record (EMR) “If we shared the same EMR, my CMAs would be able to message an admin or coordinator for that eye scheduling, or access for eye scheduling, and get the appointments done. But if we do not share the same EMR, there is no way that my team will be able to reach out to [Eye Hospital]. So that’s the biggest barrier, I think.” Ambiguity re: ownership of placing and tracking referrals And just to add on the ownership thing, I think also who’s in charge of doing the referral. Because some of this stuff is like, “Oh, we’ll defer it to their primary care,” especially if they’re out of town. Or are we in charge of it?

Organizational Characteristics

Participants described the existing processes for placing referrals for diabetic eye exams, scheduling eye exam appointments, and documenting or tracking completed eye exams. Individual providers described tracking whether a patient had an eye exam through chart review or documenting outside eye exam in their note during a clinic visit; standardized review or tracking processes were lacking at both sites. Providers placed a referral, which was then acted upon by referral management or administrative clinic staff to schedule the appointments or submit referral paperwork for eye exams, including contacting patients with details about appointment date and time. In terms of where patients were referred, most safety-net primary care providers described referring their patients to ophthalmology on-site, whereas the specialty clinic providers reported that most of their patients follow up with an eye health provider outside of their system.

Patient Characteristics

Providers at both sites described multiple patient-level determinants of completing diabetic eye exams including patient difficulty in attending an additional appointment, frequent missed appointments for eye exams, financial barriers to attending eye exam appointment, and limited motivation to attend eye exam appointment if the patient is not having vision symptoms. Providers reported regularly communicating with their patients about the risk of eye disease and importance of eye screening.

Organizational Perspectives

Clinical or system-related determinants identified included competing demands during patient appointments, difficulty obtaining outside records for documentation of eye exams, limited utility of clinical reminder functions in the electronic medical record (EMR), and limited mechanisms for follow up with patients for missed appointments. Additionally, providers identified a challenge of patients being unaware of referral appointment information because these were scheduled after their primary care or specialty appointment and patients often reported not receiving appointment information for their eye exam referral. Providers also described challenges related to the use of different EMRs by different sites of care, including specialty eye hospital, as well as difficulties in knowing the appropriate place of care for a patient experiencing visual symptoms.

Implementation and Sustainability Infrastructure

Our findings from the discussion groups provided information about the available implementation and sustainability infrastructure at each site. Providers outlined potential improved processes for scheduling diabetic eye exams and initiatives to increase referral access and completion, including providing patients the appointment date and time for their eye exam when they are present for their clinic visit and tracking of status of referrals with follow-up when needed. Additionally, providers described previous quality improvement initiatives related to diabetic eye exams, need for provider education and training in the use of retinal cameras for screening, and importance of relationships between referring providers and ophthalmologists. A commonly identified barrier to implementation and sustainability was the lack of common or interoperable EMR between sites and the specialty eye hospital. At both sites, providers described ambiguity regarding ownership of the task of referrals for eye exams. Specialists noted often deferring eye exam referrals or screening to the patient’s primary care provider, while primary care providers suggested that other members of the healthcare team would be better positioned to track and coordinate screening and referrals.

Discussion

In this study, we determined organizational characteristics and perspectives, patient characteristics, and implementation and sustainability infrastructure relevant to completion of guideline-recommended eye exams in patients with diabetes. Common themes emerged related to existing processes for referrals, scheduling, and tracking including lack of standardizing processes for referrals; patient-level determinants to receiving recommended eye screening; clinic or system-related factors, and considerations for process improvement for eye exam referrals and appointments.

Our findings include clinic and system-level determinants of diabetic eye screening including challenges in service delivery and resource availability. A systematic review of qualitative studies related to eye screening in diabetes involving patients and providers demonstrated common barriers including cost and competing demands, limited knowledge, and challenges in service delivery. ¹¹ Similar to another study in primary care, providers reported challenges identifying who was due for eye screening, relying on individualized practices to determine if a patient was up to date rather than standardized review processes. ¹² The clinic and system-level determinants identified in this study point towards the need for more robust processes for connecting patients to needed eye care. Models that have been successful in achieving this include team-based care, which has been shown to improve receipt of recommended preventive care for patients with diabetes. ¹³ Additionally, care coordination with outreach to patients with diabetes increased referrals and rates of completed appointments for diabetic eye screening. ¹⁴

In our discussions, providers described patient-reported barriers to attending eye appointments including financial, transportation, and scheduling related to work or childcare. Our findings are consistent with prior studies that demonstrate patient-level barriers to access including costs and competing demands or concerns.^11,15 A recent study found the adults with an unmet social need, such as housing or food insecurity, were less likely to have had an eye appointment within the previous year. ¹⁶ These findings support the efforts to consider a patient’s social determinants of health as part of their care. ¹⁷

Tele-ophthalmology, including digital retinal imaging, is a potential avenue to expand access to screening for diabetic eye disease and increase screening rates. ¹⁸ Successful implementation of teleophthalmology programs has been demonstrated; for example, England deployed a nationwide program and achieved annual screening rates of greater than 80% of people with diabetes. ¹⁹ Coordinating appropriate follow-up specialty care for patients who have an abnormal screen is a key part of successful teleophthalmology programs. A prior study in a safety-net healthcare system demonstrated low levels of adherence to recommended follow-up care after tele-retinal screening with less than one-third of patients completing recommended appointments. ²⁰ This underscores the importance of ensuring adequate systems are in place to track and connect patients to specialty eye care when needed. Additionally, artificial intelligence-driven methodologies are being developed and tested in diabetic retinopathy across the spectrum of care from diagnosis and screening to predicting disease progression.^21,22 These technologies have the potential improve access to screening, and it will be important to understand how the relevant context is influencing implementation across different treatment settings.

This study does have the following limitations. Our study design captures provider and practice staff experiences at 1 point in time. Although these findings represent provider experiences in both a safety-net healthcare system and specialty clinic within a large academic medical center, they may not be applicable to other settings such as privately owned practices and community clinics. Our findings were generated from a small sample size of 2 discussion groups, representing the 2 sites of the QI initiative. Although we sought out patient perspectives in another aspect of the QI project, this paper lacks the direct patient perspective.

Conclusion

In this study, providers and practice staff provided valuable insight into the contextual factors influencing diabetic eye screening in the pre-implementation phase of a larger quality improvement initiative. We plan to apply these findings to inform the strategies deployed to improve rates of recommended routine, comprehensive eye exams for patients living with type 2 diabetes. Additional work is needed to close the research-to-practice gap to determine the most effective strategies to improve the health system infrastructure to increase eye exam referral and screening rates for people with diabetes.