Understanding access barriers to care in diabetic eye disease for underserved patients in Alabama: An expert interview study

doi:10.21203/rs.3.rs-4668921/v1

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Understanding access barriers to care in diabetic eye disease for underserved patients in Alabama: An expert interview study

https://doi.org/10.21203/rs.3.rs-4668921/v1

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Background Underserved populations often have difficulty accessing care for diabetic eye disease, including screening, referral, and treatment. Although access barriers for diabetes care management have been well documented, less is understood of the access barriers for diabetic eye care specifically, and particularly among rural and underrepresented populations. This study aims to identify access barriers and opportunities to connect underserved patients in Alabama with diabetic eye screening and specialty care.

Methods We conducted 12 semistructured interviews with experts in ophthalmology, diabetes care management, and primary care in Alabama between November 2023 and January 2024. We used the Health Equity Implementation Framework to code interviews and identify key themes related to access barriers and other obstacles to care, as well as opportunities to improve access to diabetic eye screening and treatment.

Results Multiple factors associated with access barriers have been identified including aspects of the health care system in both inner and outer contexts, patient factors, and patient-provider interactions. We identified a mix of social, economic, and environmental barriers and opportunities at the patient and clinical encounter levels that influence access to eye care for underserved patients with diabetes in Alabama. Several innovative approaches were identified to improve patient access to eye care services at the health system level and during clinical engagement, including mobile clinics, expanded appointment times, one-stop shops, and improved information distribution before, during, and after the clinical encounter.

Conclusions Several innovative approaches have been suggested by the experts to improve access to care across several domains, including transportation and clinic mobility, teleophthalmology, and improved information dissemination to patients on diabetic eye disease. Further research is needed to establish an evidence base for additional innovations aimed at improving access to diabetic eye care and expanding their scope through quantitative research efforts, both in Alabama and nationwide.

Contributions to the literature

· Diabetes management is complex, and diabetic eye care may not be prioritized, particularly among underserved patients, and in health care settings with access barriers and other constraints.

· Identifying access barriers and opportunities to improve diabetic eye care among rural and underserved patients can improve overall care.

· Transportation and clinic mobility, teleopthalmology and improved information distribution to patients throughout their care can all help improve patient access for diabetic eye care.

Macular edema

Diabetic retinopathy

Socioeconomic factors

Rural population

Health disparity

minority and vulnerable populations

Health services accessibility

Diabetic retinopathy (DR) is the leading cause of newly developed blindness among American adults of 20–74 years of age [1]. The projected numbers for DR continue to increase, from 5.5 million people living with DR currently to 16 million by 2050 [1]. Screening guidelines aim to detect diabetic retinopathy early on, but the adherence to these guidelines is quite low [1]. Additionally, diabetic macular edema (DME) is a common manifestation of DR and is a leading cause of legal blindness in patients with type 2 diabetes [2]. Approximately 500,000 persons in the United States have clinically significant DME, with an annual incidence of 75,000 [3]; however, this number is projected to rise with the increasing prevalence of diabetes. Unlike proliferative diabetic retinopathy where photocoagulation remains the standard treatment to significantly reduce the risk of vision loss, DME may require alternative interventions such as anti-vascular endothelial growth factor, steroids, or focal/grid macular laser therapy to avoid vision loss [3]. However, the risk of vision loss can be further exacerbated by inadequate screening, especially among underserved non-White populations and those living in rural regions [3].

These findings are consistent with the National Vision and Eye Health Surveillance System (VEHSS) data launched in 2022, which was established to analyze data to estimate the prevalence of eye disorders and disabilities, utilization of eye health services, and disparities in visual health treatment and outcomes. VEHSS utilizes various data sources, both new and existing, to aid health professionals, researchers, policymakers, and patients in comprehending the extent of vision loss, eye disorders, and eye care services across the United States [4]. According to the VEHSS data, non-Hispanic Black and North American Native populations exhibit the highest prevalence of difficulty seeing and North American Native populations have the lowest screening claims compared with any other ethnic groups [5].

Although VEHSS data provide a comprehensive estimate of the prevalence of eye disorders and disabilities, utilization of eye health services, and disparities in visual health treatment and outcomes, a clear gap in evidence exists because of the absence of referral pathway data within VEHSS. Notably, Alabama, with a high prevalence of diabetes (13.9%) [6], exhibits a higher prevalence of DR than the national average with rates reaching 3.06% compared with 2.89%. When focusing on the vision-threatening stage of DR, Montana has the lowest prevalence reported at 0.70%, yet Alabama has a higher prevalence of 1.21%. Additionally, the utilization of annual eye examinations in Alabama is significantly lower, standing at 0.05% compared with the national average of 0.2%. A significant contrast exists between self-reported DR (0.88%) and examination-based DR (9.70%) based on VEHSS data [5]. This contrast suggests uncertainty regarding which provider is diagnosing the patient with DR and how many patients actually receive the eye examination after provider notification. Such disparity between the two prevalence rates underscores the importance of understanding the referral pathway to address the patient population falling through the gap in care. Furthermore, VEHSS data do not provide any data regarding DME, which represents a significant population requiring additional interventions compared to patients with DR [5].

This qualitative study sought to increase understanding about access to eye care screening, treatment for diabetic eye diseases in specialty care, barriers that underserved patients in Alabama experience in receiving care, and opportunities to connect those patients to care.

Study design and setting

This qualitative study consisted of 12 one-on-one, semistructured virtual interviews with experts in ophthalmology (e.g. ophthalmologist, retina specialist, optometrist, optometry student), diabetes care management, and primary care in Alabama between November 2023 and January 2024.

Health Equity Implementation Framework

To ground our approach through an equity and implementation science lens, we used the Health Equity Implementation Framework (HEIF) (Fig. 1), a conceptual framework that depicts multiple factors at the individual, organizational, community, and policy levels, which interact and influence health and health equity. The determinants that influence health equity at these levels include the social, political, economic, and environmental factors that influence health outcomes. The framework provides a structure for prospective and retrospective assessment of the ways in which evidence-based practices are incorporated into clinical settings to improve uptake of innovations. Furthermore, the HEIF framework helps researchers ensure that health care innovations and practices are adopted in a manner that addresses disparities in health care access, quality, and outcomes across different populations. Although this study did not test an innovation in care, we used HEIF to organize our data in a meaningful way that accounts for the multilevel factors that influence health disparities. We used the framework deductively to develop the codebook and analyze data [7].

Study participants

We used a combination of purposive and snowball sampling strategies to identify participants with insight into the context of the local Alabama eye care health system [8, 9]. Co-authors (SK, DT, and BW) developed a list of contacts with expertise and experience in screening and treatment for diabetic eye care in Alabama, with an emphasis on Birmingham and the surrounding area. Because we were interested in understanding care from a variety of provider perspectives, we recruited eye care specialists (ophthalmology and optometry), primary care providers, and others involved in care for patients with diabetes at risk for eye disease. During interviews, we asked participants to recommend additional contacts whom they believed were knowledgeable and could provide further insight on health care systems in the context of diabetic eye disease within the state of Alabama.

Interview protocol development and conducting interviews

As the purpose of the study was to explore access to care for patients at risk for or with diabetic eye disease, we developed a semistructured interview guide with questions to elicit information about this context. The interview protocol included open-ended questions about diabetic eye care screening and treatment focused on knowledge, awareness, strategies to improve awareness, and challenges and facilitators of access. The interview protocol also included questions about the participants’ professional background and experience with diabetic eye care in Alabama and the demographic characteristics of the patients they serve.

Before each interview began, researchers received verbal informed consent from each participant. Each interview lasted approximately 30 mins and was video- and audio-recorded via Zoom with permission from participants. Participants received a $75 gift card as an incentive to take part in interviews.

Interview codebook development and transcript analysis

We used deductive and inductive approaches to guide codebook development. First, a set of deductive codes was developed based on HEIF; then additional inductive codes were added throughout the coding process, as necessary.

A member of the research team (CN) transcribed the interviews before analysis. The analysis team consisted of a primary (VK) and a secondary coder (RL) with collective research expertise in qualitative interviewing and health disparities research. Two senior researchers provided oversight. As a consequence of the small sample size, all transcripts were double-coded to ensure consensus on coded data. Both coders reviewed and coded each transcript independently using NVivo 14 software (Lumivero. NVivo [Version 14]). After double-coding was complete, the coders reviewed data to come to agreement on the final set of codes. The research team discussed any disagreements until the team reached consensus about the final interview coding. The research team then reviewed the final set of coded transcripts for themes based on patterns and concepts that surfaced in the data. The frequency of codes was reviewed to determine which codes were used most often within and across interviews. Using a qualitative content analysis, commonalities across participants and relationships within the data were sought.

Our final sample included 12 participants practicing in Baldwin, Jefferson, Lee, Mobile, and Montgomery counties across Alabama: five eye care providers, two primary care providers, two certified diabetes educators, one dietician, one care manager, and one vision rehabilitation specialist. Of the eye care providers, one was ophthalmologist, one was retina specialist, two were optometrists, and one was an optometry student. An optometry student has 9 years of clinical experience with eye care in Alabama, and was included in our sample as a referral from one of the other interviewees. We present the main findings from the study, organized by barriers to access and opportunities to improve access. We include exemplar quotes from participants to illustrate key themes.

Barriers to access to screening and treatment

Table 1 summarizes the barriers and opportunities associated with HEIF described by interviewees. A number of themes emerged in the coded data related to barriers to access and treatment for diabetic eye disease. Themes were organized by factors within HEIF from outermost to innermost influences. Our data did not identify barriers for each factor within HEIF. We started at the level of societal influences—specifically, physical structures—and then moved to the context of care. Barriers related to the context of care included those at the local level. Next, we described the themes related to barriers that emerged based on patients’ social determinants and perceived knowledge. Finally, we addressed barriers at the level of the clinical encounter itself.

Table 1

Summary of barriers and opportunities associated with HEIF
HEIF Domain	Barriers	Opportunities
Physical structures	Access to available eye care services is a challenge for rural and underserved communities	Innovations to improve patient access to eye care services ● Mobile clinics ● One-stop shops
Local	Primary care clinics are not referring patients often enough to eye care specialists	Innovations to improve patient access to eye care services ● One-stop shops
Patient factors: Social determinants	Competing priorities, cost of service, and transportation challenges limit some patients’ abilities to schedule or attend eye care appointments	Innovations to improve patient access to eye care services ● Mobile clinics ● Expanded appointment times ● One-stop shops
Patient factors: Perceived patient knowledge	Patients have limited knowledge about diabetes and eye health or how to manage diabetes	Innovations within the clinical encounter ● Information distribution before, during, and after the clinical encounter Innovations within the organizational level of the health system ● Follow-up with patients before and after appointments
Clinical encounter	Patients are not receiving adequate information about diabetes, eye health, and diabetes management during the clinical encounter in primary care	Innovations within the clinical encounter ● Information sharing before, during, and after the clinical encounter
Clinical encounter	Underserved patients mistrust clinicians in Alabama	Innovations within the clinical encounter ● Building trust among Black patients
HEIF, Health Equity Implementation Framework

Physical structures

Access to available eye care services is an obstacle for rural and underserved communities in Alabama. Participants mentioned that there is a lack of eye care providers in rural and underserved communities, which makes it difficult for patients to access screening or treatment. One diabetes dietician said that rural patients often must travel to a more populated city to receive care. An ophthalmologist noted that eye care providers are not located in rural areas of Alabama.

“Because we have a bunch of rural areas where there aren’t hospitals and clinics that they can get to within 5 minutes, they normally have to drive to the nearest, more populated city in order to get that kind of care.” (Diabetes Dietician)

“Some of it has to do with social determinants of health and having assets in order to go to the doctor, but a lot of it is people are living in more rural areas where eye care providers aren’t located.” (Ophthalmologist)

Local

Primary care clinics are not referring patients often enough to eye care specialists. Interviewees mentioned that primary care clinics have challenges referring patients to eye care specialists. One retina specialist explained that primary care clinicians are aware that patients with diabetes need annual eye examinations but are not making the referrals. A diabetes educator said that patients are not receiving needed referrals to eye care specialists.

“I think the primary care doctors are aware of it and they’re aware that the patient should be getting an annual diabetic eye exam. But they’re unfortunately not getting it, and for whatever reason, they’re not being referred for an eye exam… And so, we’re still getting these diabetics too late when they’ve already lost a lot of their vision.” (Retina Specialist)

“[Patients are] not getting those referrals. [Patients are] not getting their education, and a lot of them aren’t even aware that it’s [an issue connected to] their diabetes.” (Diabetes Educator)

Patient factors: social determinants

Competing priorities, cost of service, and transportation challenges limit the ability of some patients to schedule or attend eye care appointments. Interviewees mentioned that patients have competing priorities, concerns about cost, and transportation challenges that may affect whether they receive necessary screening or specialty care treatment. One care manager mentioned that patients may have challenges scheduling appointments when they cannot schedule time off from work. A primary care provider and an optometrist stated that cost and transportation are the two limitations that they most often hear about when scheduling or following up with referrals for patient screening or specialty eye care.

“Whenever they’re trying to get an appointment, depending on their employment type they may have, they may not be able to take off in the middle of the day or during the day.” (Care Manager)

“I think there’s a number of factors, and we’ve actually done focus groups with African Americans in Alabama. Both [in] rural areas and urban areas, I think cost is one. People don’t always readily have insurance that covers it.” (Primary Care Provider)

“It could be maybe 2 hours away. And they don’t have a reliable car. So, it’s great to say, ‘Go to the doctor,’ but they’ve got to pay somebody and they don’t have the money. So those are some of your limitations in those areas.” (Optometrist)

Patient factors: perceived patient knowledge

Patients have limited knowledge about diabetes and eye health or how to manage diabetes. A primary care provider and a diabetes educator shared that patients are not knowledgeable about diabetes and eye health and that patients’ overall knowledge about diabetes is low. This lack of knowledge reduces the likelihood that patients will seek care when confronted with competing priorities or barriers to access because they are unlikely to recognize the importance of early diagnosis and treatment for diabetic eye disease to preserve their vision.

“I don’t think patients are knowledgeable at all. Not until they start coming on a regular basis.” (Primary Care Provider)

“And honestly, for a lot of them, I would say one of the biggest barriers is their overall knowledge of diabetes. For some of them, they think, ‘This is just what happens with diabetes,’ like there’s nothing that [they] can do about it. My grandma had diabetes, my mom had diabetes. This is just the route of how things go.” (Diabetes Educator)

Clinical encounter

Patients are not receiving adequate information about diabetes, eye health, and diabetes management during the clinical encounter in primary care. Interviewees mentioned that primary care clinicians need to share additional resources with patients about diabetes, eye health, and diabetes management. A vision therapist and a diabetes educator shared that people with DR lack knowledge about glucose and diabetes management. Competing demands, such as other important health topics, may overshadow the sharing of information about the risks of diabetes on eye health.

“I have learned or have experience with people with diabetic retinopathy. A lot of times there are things like talking glucose and monitors and things of that nature that the health care providers don’t inform them of, and then some people may have trouble with drawing their insulin, not being able to get the right amount of blood on their strips, and I haven’t experienced any health care providers that provide training to people that are blind or have low vision.” (Vision Therapist)

“They’re just trying to rush you in and out of that room so that they can move on to the next patient, and they’re not taking the time to fully explain to the patients exactly what is needed to be in control of diabetes, including eye care.” (Diabetes Educator)

“But in real time, if there are other things that come up, I think it’s easy to forget to go back over it… There’s a lot of competing demands on things that you want to go over in the list, particularly in primary care.” (Primary Care Provider)

Underserved patients lack rapport with clinicians in Alabama. Interviewees mentioned that patients have difficulty in trusting non-Black clinicians because of the racial discrimination and injustices that Black people have faced historically in Alabama. One primary care physician said that there are not many Black eye care providers in Alabama.

“I think the point is that [of] fear in Alabama, and this is from the trial that ended in 1977. We simply don’t trust. It’s not like we have a whole list of Black ophthalmologists that you can just go to. I don’t know any Black ophthalmologist in this town. We know Black optometrists. It’s okay she sent me to a White doctor, but there are a lot of trust issues.” (Primary Care Provider)

“Alabama as a state, you’ve heard of the Tuskegee syphilis study. There are issues with trust. And so, you have to build trust up as well. I think those are the big barriers for receiving routine eye care, particularly for patients with diabetes.” (Ophthalmologist)

Opportunities to improve access to care and treatment

After exploring barriers to screening and treatment within our coded data, we analyzed the data for opportunities to improve access to care. Next, these opportunities were discussed and organized from the outermost context to the clinical encounter. Similar to our study findings on barriers, our data did not contain opportunities at all levels and factors of HEIF. The opportunities that were identified pertained to innovations within the clinical encounter, organizational level of the health system, and patient access to eye care services.

Innovations to improve patient access to eye care services

Interviewees suggested several ways to improve eye care services for underserved patients in Alabama. One primary care provider shared that mobile vans are a strategy currently in use to improve access to eye care services in rural Alabama. They stated that mobile vans create an additional means of access outside of the traditional provider office, eliminating transportation or distance barriers. One care manager explained that expanding clinic hours outside of regular office hours may address challenges that patients experience in reaching the clinic during traditional working hours. Patients often have inflexible work schedules or cannot afford to take time off from work to attend a doctor’s appointment; expanded appointment times enable patients to access care at times that do not interfere with their workday. To reduce the challenges that patients experience when scheduling a follow-up visit for screening, a retina specialist suggested methods for screening patients in the primary care setting.

“I know that there are mobile units, mobile vans, that will go down to, like, the rural area of Alabama periodically and do screenings and check-ups.” (Primary Care Provider)

“Whenever they’re trying to get an appointment, depending on their employment type, they may not be able to take off in the middle of the day or during the day. So, if we were able to have after-hours eye screening, after traditional hours, or a Saturday eye screening, that could potentially be beneficial to have more availability for those patients.” (Care Manager)

“I started a company where we are basically putting cameras in the primary care office where we do the screening right where the patient is at so they don’t have to send them anywhere. They can take a picture of the retina. And then we can, from telemedicine, diagnose this patient if they have problems or not. So, we’re trying to solve it in a different way because that way they don’t have to be referred. We can make it easy on the patient, the primary care team.” (Retina Specialist)

Innovations within the organizational level of the health system

Interviewees mentioned that follow-up calls or text messages to patients who miss their appointments and following up with patients before appointments may help improve the process of connecting underserved patients to eye care services. A primary care provider and a diabetes educator emphasized the importance of these communications to ensuring that patients have the connections they need.

“And then the other thing we’re trying is follow-up phone calls with folks who’ve missed their visit to ophthalmology, to try and better understand the barriers to making it to those visits so that we can figure out whether or not there are system-level or patient-level interventions that we could try that would help those folks overcome those barriers and get them back into clinic.” (Primary Care Provider)

“I think it’s having that communication, especially when the referral process is happening on what that follow-up is going to look like. So, if I have a patient that’s coming in, and I know that they need to be referred to an ophthalmologist, some sort of recordkeeping as to whether or not that referral was handled or if that ophthalmologist did reach out to the patient to schedule appointments.” (Diabetes Educator)

Innovations within the clinical encounter

Interviewees shared that establishing trust with patients is a way to improve access to eye care for underserved populations in Alabama. One retina specialist said that more Black physicians are needed to garner trust from the community because of the distrust created by the racial discrimination and injustices that Black people historically have experienced. One primary care provider mentioned that being truthful, up front, and loving with patients about the status and prognosis of their disease is a strategy that can build trust with patients.

“A lot of the affected population is African American in Alabama. I think that there’s some history with the Tuskegee study. Trials, issues, and other things where we didn’t do the right thing. I’d love to see more African-American physicians be in this market because I think that’s [an] automatic trust. If you have other retina specialists that are African American and of the same minority I think that that would be helpful.” (Retina Specialist)

“So, this is how I approach it; it is very, very up front. A lot of that is going back to having that loving space with the patient and having a family approach and hoping what I am saying, she will trust it. Then, she’ll not only once see me as somebody doing no harm but that I want them to live a longer, healthier life.” (Primary Care Provider)

Interviewees also noted that ongoing information sharing on diabetes and diabetic eye disease management could occur before, during, and after a patient’s clinical encounter. Specifically, interviewees mentioned that clinics and primary care providers can take steps to share information about the effect that diabetes has on eye health and about diabetes management before, during, and after the clinical encounter. One primary care provider shared that clinics could make literature about diabetes and eye health available in their waiting rooms to help educate patients about their disease. The availability of information in waiting rooms also can help patients feel more comfortable having conversations about diabetes and eye health with their primary care provider. One vision therapist said that health care providers could help improve how patients manage their diabetes and eye health by sharing information about the health services available to patients while they are in the clinic. In addition, a retina specialist described how public awareness campaigns can help raise awareness about diabetes, eye health, and diabetes management.

“I think having literature in the [waiting] room helps. [Patients] can come in the room and they may have something already in their hand. Like, ‘Oh, I got this; I was reading about this.’ So, they have 20 topics in there with the pamphlets… so it opens up the room to have the conversation.” (Primary Care Provider)

“But I do know that most of the time they are not aware that the services that we provide are available to individuals with that disability to help them. What I have learned or have experience with people with diabetic retinopathy, a lot of times there are things like talking about glucose monitors and things of that nature that the health care providers don’t inform them of, and then some people may have trouble with drawing their insulin, not being able to get them the right amount of blood on their strips, and I haven’t experienced any health care providers that provide training to people that are blind or have low vision.” (Vision Therapist)

“Like the smoking commercials that are done where those are very impactful… I hate to be that dramatic, but something along those lines when somebody like that looks like you and your age group is saying, ‘I’m blind.’” (Retina Specialist)

We identified a mix of social, economic, and environmental barriers and opportunities at the patient and clinical encounter levels that influence access to eye care for underserved patients with diabetes in Alabama. Patients in Alabama experience access to care barriers due to the limited availability of providers in underserved communities along with the competing demands related to social determinants of health. There also continues to be mistrust of clinicians among underserved patients in Alabama, which results in underserved patients often delaying care.

Patients in Alabama experience access barriers to care because providers do not always make the necessary referrals to specialists. Knowledge gaps in diabetic eye care was another important access barrier identified, because patients do not have the information that they need to be fully informed about the connection between managing diabetes and their eye health. These patient knowledge gaps are also affected by providers who are not consistently sharing adequate information about eye health and diabetes management, particularly during primary care visits. The innovations we identified that are currently in use in Alabama seek to address these barriers to equitable access to diabetic eye care. We identified that those involved in caring for patients with diabetes in Alabama are implementing changes to the clinical encounter including by using mobile vans, offering expanded hours of care delivery, and adjusting the way information about diabetes and eye health is distributed to patients.

Overall, access barriers identified in Alabama are similar to health equity barriers documented in the literature in other therapeutic areas [10]. These factors include (1) patients, such as their lack of rapport with clinicians; (2) the clinical encounter, which includes the patient-provider interaction and all communication during that visit; and (3) the health care system, such as the lack of system to improve quality in the delivery of health care services [7]. Among the innovations discussed by Alabama experts to improve access to care, mobile clinics and teleophthalmology visits seem to be potentially effective strategies from other published literature. The use of mobile clinics has been shown to be a cost-effective approach to improve screening for diabetic eye disease and follow-up with specialty care visits with ophthalmologists [11]. Similarly, mobile vans have also been used as a teleophthalmology strategy to support remote screening and diagnosis of diabetic eye disease. This strategy has been shown to be a convenient option for patients and a way to help providers detect diabetic eye disease [12]. Access barriers to diabetic eye care are also being measured through public/private partnerships among patient advocacy groups and private organizations, which allow for quantifiable evidence to support interventions to improve access to care and clinical outcomes [13, 14]. These innovative approaches not only offer feasible solutions to current access challenges but also set the stage for broader efforts to improve diabetic eye care access across Alabama. It is crucial to build an evidence base for additional innovations aimed at improving access to diabetic eye care by leveraging this work and expanding its scope through quantitative research efforts [11].

Despite the valuable insights gained from our study, there are several limitations. First, the small sample size may limit the generalizability of our findings. However, it is important to note that our sample encompassed individuals from various facets of care delivery, including eye care providers, primary care providers, and those involved in diabetes care management, thus offering a diverse perspective on the topic. Similarly, the geographical concentration of our interviewees primarily in the Birmingham metropolitan area of Alabama could potentially introduce bias in our results, as health care dynamics may differ across other urban, suburban, and rural regions of the United States.

Our study identified a mixture of social, economic, and environmental factors influencing access to eye care for underserved patients with diabetes in Alabama. We have identified a multitude of barriers at both the patient and clinical encounter levels, ranging from limited provider availability in underserved communities to knowledge gaps regarding diabetic eye care among patients. Additionally, the persistent mistrust of clinicians among underserved populations further exacerbates these challenges, highlighting the need for targeted interventions, such as the ‘hub-and-spoke’ model, where retina specialists collaborate with primary care physicians in screening and treatment. Despite several barriers identified, our research also suggests promising innovations to address access disparities. Particularly, mobile clinics, teleophthalmology exams/assessments, and improved patient educational material seem feasible strategies, offering efficient and economical solutions to improve screening, diagnosis, and treatment of diabetic eye disease. These innovative approaches not only offer practical solutions to current access challenges but also lay the groundwork for broader efforts to enhance diabetic eye care access across the country. For future research, this highlights the importance of establishing an evidence base for additional innovations, thereby ensuring equitable access to eye care for all patients in the United States. Our study provides valuable insights into the barriers and opportunities in diabetic eye care access, laying a foundational work for future research and interventions aimed at improving health equity in Alabama and beyond.

Diabetic retinopathy

DME

Diabetic macular edema

CDC

Centers for Disease Control and Prevention

HEIF

Health Equity Implementation Framework

VEHSS

Vision and Eye Health Surveillance System

Ethics approval and consent to participate

All study activities were exempted by the American Institutes for Research Institutional Review Board (IRB00000436). Verbal informed consent was provided to researchers by each participant before the interview began.

Consent for publication

Not applicable.

Availability of data and materials

Not applicable.

Competing interests

S.K.: Employee – Genentech, Inc.

D.T.: Employee – Genentech, Inc.

M.K.: None

K.J.: Employee – Genentech, Inc.

V.K.: None

R.L.: None

S.M.: None

C.N.: None

B.W.: Employee – Genentech, Inc.

Funding

This work was supported by Genentech, Inc. South San Francisco, CA, which developed the study concept, as well as analysis review, decision to publish and manuscript preparation support.

Authors’ contributions

SK and DT designed and directed the project; VK and RL performed the interviews; VK and RL analyzed the interview transcripts; SK, DT, MK, SM, VK, RL, and CN wrote the article.

Acknowledgements

We thank the participants who shared their insights as part of the survey.

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Competing interest reported. S.K: Employee – Genentech, Inc. D.T: Employee – Genentech, Inc. M.K: None K.J: Employee – Genentech, Inc. V.K: None R.L: None S.M: None C.N: None B.W: Employee – Genentech, Inc.

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Understanding access barriers to care in diabetic eye disease for underserved patients in Alabama: An expert interview study

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Abstract

Figures

INTRODUCTION

METHODS

Study design and setting

Health Equity Implementation Framework

Study participants

Interview protocol development and conducting interviews

Interview codebook development and transcript analysis

RESULTS

Barriers to access to screening and treatment

Physical structures

Local

Patient factors: social determinants

Patient factors: perceived patient knowledge

Clinical encounter

Opportunities to improve access to care and treatment

Innovations to improve patient access to eye care services

Innovations within the organizational level of the health system

Innovations within the clinical encounter

DISCUSSION

CONCLUSIONS

Abbreviations

Declarations

References

Additional Declarations

Status:

Version 1