Overcoming Cultural and Communication Disconnects, Part of the Focused Sight Initiative: Quality Improvement Interventions in Retinal Disease

In addition, she strongly noted that she really believes in folk healing or that this could get healed on its own, and she did not like the idea of having needles in the eye and had this distrust of, hey, these injections probably would hurt, potentially lead to more issues, especially growing up as a child, she was always told never stick a needle or put anything into the eye.

So based on these barriers and these hesitations she already had built in innately, you can understand where this patient, similar to many of our other patients, may not want to proceed with treatment, tagging on to the fact again that she had low understanding of how diabetes or her uncontrolled sugar could lead to eye complications and why she was having difficulty with reading and sewing, which is something she loved to do. 

She also mentioned that she's had fear of prior exposure to seeing a medical doctor where cost was an issue, where she couldn't continue treatment or medication because she couldn't afford it, and as such, she had no regular primary care follow-up.

So let's take a further dive in what was then recommended. So when I first saw her, my initial treatment plan was rejected. What I recommended, which I believe many of us would do, would recommend intravitreal anti-VEGF therapy in this patient and wanted her to focus on controlling her sugars or glycemic optimization as well as possible and refer to primary care to kind of closely monitor and guide how her diabetes can not only affect her eyes but her kidneys, her actually legs, in terms of leading to neuropathy, and wanting to kind of start that conversation and start a connection for her to be able to get that under better control.

But quickly we were faced with a response, “No, Doctor, my cousin said the shots make you blind, and I'd rather use té de nopal,” which is a tea, natural tea, “and prayer. God will heal me.” 

So the outcome of this challenging situation. Unfortunately, Maria declined treatment, and she did not follow up as we wanted and tried. At this point, when she said, “No injections,” the idea was to say, “All right, let me at least follow you. Would you mind coming back? Let's take a look, see how things are progressing.” And the hope was she would realize as I showed her pictures, and maybe as her vision started to get worse, we could build trust, and potentially one of my staff members who speaks Spanish could be able to explain things a little bit better.

But what we did is sit there and take a look back at how we could improve. What are some things we could do to intervene and build trust and communication in this patient? And so what we did was make sure we do have staff at other offices. Specifically, I have a care coordinator, her name is Lucia, that can be present at her follow-up or visit and would be able to be assigned that day to assist in Spanish-speaking medical consultation, describing the case and procedure and what we would be looking to do moving forward.

In addition, I was able to find Spanish pamphlets illustrating her disease and diabetes and how injections were similar to insulin for the eyes, to be able to help control how insulin is used to control sugars in the body, and how these injections in the eye would therefore be tailored towards treating the problem and therefore improving vision and sight, which is the main purpose of the eyes. So again, culturally tailored education.

We also wanted to reach out and see if there's someone in the community that could be able to form a strong connection outside of the office clinic. And we were able to find that in a community health worker who works actually at the church that she attended. And Maria was able to connect with this individual to provide assistance in transportation and also explanation, deeper dive, in explaining how best she can control her diabetes.

It was also very important that we get family involvement. Her daughter, who thankfully was more bilingual, was able to then come to additional appointments after reaching out and saying, “Please, it's very important for your mother to come in and for me to be able to explain what's going on with Mrs. Gonzalez.” 

And then taking the time for empathetic listening. If we validate the beliefs that completely understand teas, these are actual diet, exercise, natural remedies, completely can be a benefit and an aid, and there's no problems in kind of going along with that. And it's validating their belief that we respect their faith and their treatment but also believing in my options to be able to work alongside and partner to be able to get good outcomes and improvement.

Now, I’ve got to be honest. The patient did not come from me calling and making these changes. There was a key turning point in her care where Maria actually returned after realizing her vision worsened while driving, and she says, “Hey, Doc, you know, I almost hit a child. I'm scared. Will you help me, even if I don't understand everything?” Now, at this time point, I was able to bring in Lucia. I was able to provide the pamphlets and educational material. I was able to have her daughter present to make sure that any concerns and fears were addressed and also provide that empathetic listening, saying, “Hey, continue doing what you're doing and working with your promotora at your church and working with taking your teas, but also continuing treatment in my office and care.”

So with this modified approach, we were able to perform her first injection with her daughter present. As I mentioned, my technician, Lucia, translated step by step what we were going to do and enlisted a post-injection call, also in Spanish, within 24 hours to address any concerns that she may have.

Transportation, she was reporting that this would be a problem moving forward and that it was hard for her daughter to come every time. But this was again arranged through a church van who provides services, because we're not far from the church, to be able to get her into the office to get treatment.

We can see her on follow-up after her first injection. Her right eye vision improved to 20/70 and left eye to 20/80, an improvement in the central thickness to 410 microns in the right eye and 435 microns in the left eye.

Long-term follow-up, thankfully, with these implementations and building confidence, we were able to continue treatment. Six months out, we can see here she had continued improvement with her vision to 20/50 and 20/60. Her central subfoveal thickness was 320 and 340. She continued with injection. She continues to drink tea, specifically tea manzanilla, which is apple tea, to help to calm her nerves, which she said again—after she had the first experience, noted the improvement and noted that, hey, there was no complications. She's continuing to do well and improve with her vision. This helped to build the confidence to continue with treatment.

Following out 12 months, she improved to 20/40, 20/50 in the left, continued resolution in terms of the CST, 295 microns, 310 microns. We were able to space the injections where she's not coming as often. She joined a diabetes support group to kind of help to continue that battle in maintaining control of her diabetes.

It was nice to see at our 18-month follow-up, she had 20/30 in the right eye, 20/40, 270 microns in the right eye, 285 microns in the left eye, and her A1c improved now to 7.4%. Not only that, she now refers her sister for screening, showing that she believes in the confidence in what we're doing in her care.

Two years out, she's 20/25 and 20/30. Good, maintained resolution of CST at 255 in the right eye, and 265 microns in the left eye, with full resolution of her macular edema. And she's getting injections roughly every 12 weeks.

So we can see the final outcome. Following up, her visual acuity is 20/25 in the right, 20/30 in the left. There's no edema on these OCTs. The retinal architecture remains stable and completely resolved. And what we'd want to see in all our patients with diabetes. 

The patient testimony was in Spanish but translated. She said, “You know, at first I was afraid of the doctor and the needle, but Lucia spoke to me like family. She explained everything with pictures, and my daughter helped. Now I can see my grandchildren's faces clearly. I tell everyone at church, ‘Don't wait like I did.’” 

So to summarize, I think things we need to kind of review is there are some key success factors. And it was very important for us to implement language-concordant care, whether that be in pamphlets, whether that be in staff members that could be able to communicate more clearly and allay any fears and concerns, and made that connection that is so important between a patient and their care provider.

Also having cultural humility and validation of the patient's beliefs by displaying empathy, analyzing and saying, “Hey, some of these things that you're doing will probably work, but not only that. We need assistance from us to be able to get you where we want in the end. And this partnership between us would be able to get you to be able to read, continue sewing, and achieve success in terms of your activities of daily living.”

We also enlisted the community partnership with her church and her promotora, which not only helped with her eye care but also her overall diabetic care. And you can see from the results with her A1c being a lot lower.

So implementing some of these factors can make a big difference in a patient, as in our case: family engagement, bringing the daughter in, making sure that they're also understanding, to be another listening ear, and also kind of reinforcing some of the things that we've said. Some things can be missed at the office visit, but the family being present can also help to reinforce and repeat and clarify any issues and/or concerns.

Being persistent and having follow-up, and this was also enabled in that follow-up phone call and showing true care and passion for the patient, making sure the patient understands we do understand the concerns, fears, and wanting to take the step to meet you halfway to get you to the results that we need for you to be able to be seeing better.

So just some clinical pearls. We do know that diabetic macular edema treatment adherence improves >70% when there are bilingual navigators. We also know that validating cultural practices have been shown to reduce no-show rates, similar in this patient, as well as long-term trust; you’ll sustain glycemic and visual gains. 

Again, there's nothing better than being able to develop a bond with the patient, developing confidence and trust to be able to obtain better outcomes for our patients. And this was a nice case example which demonstrated how communication and understanding can help to allay some of these barriers that we and many of our patients are faced with on a day-to-day basis.

Thank you so much for your time. 

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