Non-compliance is a problem across the healthcare system, with an estimated $100 million to $300 billion lost each year as a result of disease progression,
labor burden to staff, hospitalizations, and wasted medications.
1When an eyecare provider realizes that a patient has not complied with prescribed directions, the provider has a choice to make. In this article, we’ll discuss how to make a choice that is in the
best interest of the patient’s well-being and how to best approach the situation amidst the patient’s values, background, and environment.
Defining non-compliance
Non-compliance is the failure to act or follow instructions, and in the eyecare world, this often translates to failure to take drops as prescribed, not wearing prescription glasses, or not showing up for follow-up appointments.
Common examples of non-compliance in eyecare include:
- Not taking glaucoma medications consistently or correctly
- Failing to follow a dry eye regimen
- Missing follow-up appointments for amblyopia treatment
- Incorrectly taking medications for red eye treatment
- Wearing unprescribed contact lenses
- Improper hygiene or disposal of contact lenses
- Missing follow-up appointments for retinal pathology
Patients may not always be forthcoming in their responses. While speaking with the patient, the provider may determine common themes of why a patient may not answer as readily or clearly about their motivations. Some patients may be unintentionally non-compliant, while others are deliberately non-compliant, and the provider will need to probe further before assuming the intention behind the non-compliance.
Defining the social determinants of health
Our desire to
keep on schedule may make us oblivious to the person behind the non-compliant behavior. While medical care is said to account for only 10 to 20% of a patient’s health outcomes, the social determinants of health are the other factors that determine a patient’s overall health outlook.
2Social determinants of health are defined by the Centers for Disease Control and Prevention (CDC) as the "conditions in which people are born, grow, live, work, and age. These circumstances are shaped by the distribution of money, power, and resources at global, national, and local levels."3
The social determinants of health include:
- Education access and quality
- Healthcare access and quality
- Neighborhood and built environment
- Social and community context
- Economic stability
The Vision Health Initiative (VHI) of the CDC reports that the categories of education, housing, income, and access to care are the social determinants of health that most affect visual outcomes.4 Lower income, having less than a high school education, low neighborhood safety, and difficulty with healthcare access have also been linked to vision disparities.4
The issue of social determinants of health and their impact on healthcare outcomes is a national healthcare concern. Social determinants of health are included in
ICD-10 coding; additionally, the level of complexity of a medical exam’s
CPT code now includes the consideration of social determinants of health that can affect medical decision-making.
The American Optometric Association (AOA) recently published a screening checklist for eyecare providers to use as a part of the intake process.5 This can be used as a pre-exam screening form to offer to patients as they check in at the reception desk.
Understanding the social determinants of health allows us to become more effective eyecare providers. A no-show is not just a no-show, and non-compliance with medication is not necessarily a simple situation of disregard for a doctor’s instructions by the patient.
Figure 1 illustrates the different categories of social determinants of health as defined by the CDC.
Figure 1, courtesy of Amy Moy, OD, FAAO, CPCO
1) Education access and quality
Situation:
A glaucoma patient does not take his latanoprost drop compliance seriously. He takes it when he remembers. You gave him a pamphlet to read when you diagnosed him with glaucoma, but he lost it. On further probing, it turns out that he does not read much and had little to no education before he immigrated to the US, and therefore reading about his condition is not as effective. He lives alone and is retired.
When a patient has been non-compliant, it is important to ask open-ended questions without sounding accusatory. An example of this would be asking: Is there anything you can think of that would make it easier for you to remember to put in your eye drop?
Additional strategies for addressing a patient's education needs include asking if there is a trusted person they would want to hear the diagnosis and instructions with and informing the pharmacy that instructions will need to be written in their native language (this may require connecting with an interpreter). Providing educational handouts in a patient's native language and communicating with their primary care physician (PCP) are also potential measures to reinforce compliance.
Resources for patient communication and co-management
After establishing the patient’s reasons for non-compliance, it is time to outline the possible consequences they are at risk of by not following directions. A possible script for a doctor in this situation is below.
Eyecare provider script:
I understand that it can be hard to remember your drops during the course of the day. I want to show you a picture of your eye to clarify why I am so concerned that you remember your eye drops. This is a picture of your optic nerve. [Show optic nerve photograph.]
Over time, your optic nerve tissue has been damaged, and I am seeing signs of that when you take your side vision test. This vision loss is called glaucoma, and it has no cure. Once you lose vision, it is gone permanently. What we can do is slow down the glaucoma progression by using eye drops to lower the pressure inside your eye. This will limit the damage to the tissue of your optic nerve, which connects your eyeball to your brain.
When you forget your drops, your eye pressure goes back up and does more damage to your vision. This is not something you can feel, but I can see it happening with my equipment. Once you notice your vision is affected, it will be a severe case of glaucoma.
I want to help you to preserve your vision. Can we work together to find a way for you to keep a schedule? Can you do it when you brush your teeth at night or right as you turn off the light to go to bed?
As another example, below is a sample letter to the PCP of a patient to co-manage drop compliance.
Letter template:
Dear Dr. PCP,
I am reaching out to you regarding our mutual patient Mr. A because I wanted to let you know that Mr. A has moderate primary open angle glaucoma in both eyes, for which I have been treating him with latanoprost drops, one drop in each eye at bedtime.
Mr. A has difficulty remembering to take his drops on a regular basis. This has serious implications for his vision, as the drops are meant to lower his eye pressure and thus slow down his glaucoma progression and potential risk for blindness.
I have had conversations with Mr. A about the importance of compliance and have spoken with his daughter, who will assist with reminders. I wanted to inform you of these issues so that we can work together to help him to preserve his vision.
If you have any questions, please do not hesitate to contact me.
Best Regards,
Dr. I. Exam
A resource for patient engagement
Patients should always be included in the process of their medical decision-making. The Institute for Healthcare Improvement developed a tool called “
Ask Me 3.” This resource focuses on helping patients to be active members of their own healthcare decisions and provides a platform for communication between patients, their families, and healthcare providers.
6 Ask Me 3 outlines three questions that should be explained by the provider and understood by the patient to prevent non-compliance; these questions are: what is my main problem, what do I need to do, and why is it important for me to do this?
Resources for patient handouts
Patients can not always take in all of the information conveyed in the exam room. A printable sheet or brochure is helpful for reinforcement if they can read, and if they can’t read, connecting with someone at home to read it for them. It is good practice to give written education materials to a patient when they receive a new diagnosis.
Free patient resources that are written in multiple languages:
2) Healthcare access and quality
Situation:
Your patient comes in with significant pain in their left eye. They felt that there might be something in their eye, and they had tried to wash out the eye with water for the last 2 days but finally came to your office because the pain was too much. Your exam reveals a significant metallic foreign body in their cornea.
You ask them why they waited so long to come for help. They shrug, and you shake your head internally, wondering why they would put off an exam when they are in so much pain. You later find out that they do not have health insurance.
According to the US Census, one in ten people in the United States does not have health insurance.
7 A lack of health insurance can prevent a patient from seeking healthcare until they are in serious condition. Talking about
finances is one of the more awkward parts of patient care when it is a barrier to treatment. Insurance coverage can interfere with a provider’s desire to prescribe an expensive medication and can factor into a patient’s missed appointments for follow-up care.
A patient may also lack a PCP, which sets them at a disadvantage in navigating the healthcare system. These patients are likely to use the emergency department for issues that may be easily addressed in a primary care setting. In addressing these issues, remember to treat all patients equally. Present all options to each patient so that they have the same opportunities. This may manifest in the following situations.
Prescription medications:
Explain to the patient that you would like to prescribe XYZ, but it can be very costly. Then present an alternative option, which may be cheaper and less effective, but worth trying if they would like to do so. Make sure to involve the patient in your decision-making to build a best-practice habit.
Glasses and contact lenses:
Treating all patients equally means presenting the “good, better, and best” options so that they know what is being offered to everyone who walks in the door. Avoid assuming that someone only wants to see the low-cost frames. The patient will signal what treatment they gravitate towards, and then you can concentrate on optimizing their order. Avoid assuming that someone just wants plastic or monthly lenses due to cost. Present all options in a concise, open manner and look to them for cues to point you toward the best match.
In some cases, the patient may need assistance in contacting the PCP so that the extent of the ocular or
systemic need is fully understood. Navigating the healthcare system can be stressful for a patient, especially if they do not speak English well. Keep in mind that psychosocial issues, such as dementia, may affect a patient’s ability to maintain steady healthcare and health regimens.
3) Neighborhood and built environment
Situation:
Your patient comes for a routine eye exam and expresses how anxious she has been since she moved to a new neighborhood. She is constantly scared and worried about her new surroundings in subsidized housing. She has just started an anti-depression medication and complains of gritty, red eyes. You start her on a dry eye treatment regimen, but she does not keep her follow-up appointment.
Some patients may live in neighborhoods with high rates of violence, unsafe air or drinking water, and other health and safety risks which can affect their health. In addition, they may be exposed to harmful elements at work, such as secondhand smoke, loud noises, or toxic substances. Our built environment, otherwise known as the places where we live and work, can have a significant impact on our well-being.
Make sure to note a patient's environmental factors:
As eyecare providers, we can be aware of these environmental factors and be a listening ear. In some cases, connecting the patient with a social worker may link them to resources of which they were unaware.
4) Social and community context
Situation:
Your very amblyopic 7-year-old patient has not been wearing their glasses. You ask the parent why the child has not been wearing their glasses, and they become quite defensive. In a caring tone, you ask if there might be any issues with the frame, cosmetic appearance, school or home life, or other reasons they can identify. The parent eventually reveals that one parent is incarcerated, and she has been working night shifts to keep her family afloat.
Incarceration is one of the elements of social and community context that affect health outcomes, even if the patient themselves are not the one incarcerated. Civic engagement, discrimination, the cohesiveness of the community, and workplace conditions are all factors in healthcare outcomes because they affect the well-being of the individual.
5) Economic stability
Situation:
Your patient does not purchase the medication you prescribed for their red eye but still comes for the follow-up. When asked why they did not get the drops, they reported that the drops were too expensive for them. They ask you for something less expensive to help their symptoms.
It has been reported that those who are more likely to suffer from visual impairment have Medicaid as their main health insurance coverage.3 It is important to remember that in many situations, non-compliance is merely a symptom of something deeper. Eyecare providers should respond compassionately and with understanding so that the patient feels that they are on the same team.
Each patient has a story, and involving the patient in their management plan will solidify a strong patient-doctor relationship. Expressing empathy while explaining a patient’s diagnosis, prognosis, and treatment goes a long way to establishing and maintaining trust between a doctor and patient.
Prescription drug assistance programs:
Many pharmaceutical companies have programs to assist those with financial instability in acquiring their medications. These programs need your time as a provider to fill out the necessary paperwork for the patient.
Figure 2 summarizes how the different social determinants of health can present and be addressed in an eyecare setting.
Figure 2, courtesy of Amy Moy, OD, FAAO, CPCO
Addressing non-compliance compassionately
Trust is the number one element that determines the level of patient compliance. If a patient does not trust their doctor, they are far less likely to follow directions. The provider must convey to the patient that they truly care about the patient’s ocular health and are invested in strong patient education. Some specific ocular conditions are known for their higher risk of patient non-compliance.
Figure 3 summarizes the strategies for understanding a patient’s motivations for non-compliance.
Figure 3, courtesy of Amy Moy, OD, FAAO, CPCO
Non-compliance in glaucoma treatment
Lack of compliance leads to
disease progression in glaucoma, which ultimately leads to blindness. It is key to identify the presence of early glaucomatous changes to prevent vision impairment by starting treatment. While medication adherence is key, many factors can act as barriers to a patient’s compliance with their glaucoma medication.
Guidelines for improving compliance with glaucoma treatment:
- Implementing standard protocols to hand patients a written summary of their treatment regimen and dosing instructions.
- Showing glaucomatous imaging and testing results to illustrate the progression to the patient (i.e., show fundus photos in the exam room, OCT imaging with retinal nerve fiber layer analysis, and review visual field results).
- Explaining the reason for follow-ups.
- Instructions should be translated into a patient’s preferred language.
- Ensuring the patient is able to get the drop in their eye. Wills Eye has published a helpful video and set of instructions on drop instillation.
If non-compliance persists or is not possible, there are still options. Alternatives should be considered if initial approaches to address non-compliance have failed. Examples of when a new treatment should be considered include a failure of
drop therapy (more than two agents have been tried with failure to lower IOP sufficiently), drop intolerance due to
ocular surface disease or allergies, and general non-compliance.
Non-drop options for glaucoma treatment:
While decisions about alternative treatments should be made by an appropriate specialist, it is important to be aware of available options, especially when co-managing the patient after surgery.
Figure 4 lays out the stages of glaucoma progression with increasing severity.
Figure 4, courtesy of Amy Moy, OD, FAAO, CPCO
Non-compliance in dry eye disease treatment
Dry eye treatment often involves trying one regimen and adjusting it at the next visit. The patient’s understanding of treatment goals and regimens is integral to the success and improvement of symptoms. Patient education is key, as well as the
provider’s understanding of the root cause(s) of their symptoms.
Guidelines for improving compliance with dry eye treatments:
- Implement standard protocols of handing patients a written summary of the treatment regimen and dosing instructions.
- Show diagrams of lid and lacrimal gland anatomy.
- Consider computer vision syndrome, autoimmune etiologies, or environmental factors that require an adjustment in treatment for the relief of symptoms.
- Engage the patient to collaboratively choose the most reasonable initial treatment option.
Non-compliance in amblyopia treatment
A
pediatric patient failing to keep their follow-up
amblyopia appointment is always concerning. It may indicate that a caregiver did not understand the visual impact at stake, or there may be social determinants of health affecting their ability to return for the appointment. It is common to hear that the child says, “I see fine without the glasses,” and the caregiver is not adequately certain about the diagnosis to help their child to remain compliant.
Guidelines for improving compliance with amblyopia treatments:
- Have an open conversation with the caregiver about amblyopia, the importance of treatment timing, and the potential impact on school performance.
- Print and hand out patient education fact sheets about amblyopia.
- Write a note to the school nurse or a teacher for reinforcement.
- Lead a collaborative discussion on strategies for the caregivers to use to encourage the child to wear their glasses.
A free, child-friendly social story about patching for amblyopia, along with additional stories about common optometric treatments that children might encounter, is available online for
download or flipbook viewing. These social stories are available in English and Spanish and include picture exchange communication systems (PECS) images for patients using assistive communication devices.
Non-compliance in red eye treatment
The red eye patient who does not take their medication as prescribed is a common theme in eyecare. Social determinants of health easily come into play when cost is an issue, or when the patient has difficulties navigating the pharmacy or insurance systems. Utilizing the strategies of open-ended, empathetic, and engaged conversation should uncover barriers for which the provider will need to take action or amend treatment.
Non-compliance in contact lens treatment
Contact lens patients who abuse their contact lens wear time,
disposal time, and hygiene need persistent and consistent
patient education. Having patients sign a detailed consent form before the first fitting is important for the protection of the provider. Printed materials and strong patient education from the time of scheduling to the end of the visit will help to avoid non-compliance.
Contact lens information sheets in the patient’s preferred language can be helpful to both the patient and the doctor in reinforcing contact lens compliance. The CDC provides handouts for contact lens use in
English and
Spanish.
Non-compliance in cardiovascular disease and retinal treatments
A
diabetic or hypertensive patient’s non-compliance with their diabetes treatment regimen is devastating not only for their eyes but for their whole body. The
development of retinopathy triggers the usual speech about overall health management and what is happening in the patient’s eyes.
Social determinants of health affect many facets of the patient’s prognosis, such as affordability of medication, stressors at home and work, their ability to navigate the healthcare system, insurance coverage, their relationship with the PCP, and their cultural and food background.
Below are resources for patient education on diabetes and retinopathy:
- Animated Diabetes Patient has a guide to patient education
- University of Michigan's Kellogg Eye Center has a handout about hypertensive retinopathy
- The National Institute of Diabetes and Digestive and Kidney Disease has a page on financial assistance for diabetic care
- The National Eye Institute has handouts about diabetic retinopathy in English and Spanish
When nothing has worked to change the non-compliance
There are some patients who, no matter how hard the provider tries, will continue to be non-compliant, despite dire visual consequences. In this situation, the provider should carefully record no-shows, attempts to reschedule, and attempts to educate the patient about the risk of vision loss.
Document, document, document
If a patient does not speak English, make sure to note that an interpreter was used. It is also wise to document the number of minutes spent in discussion with the patient. If the provider has tried everything with persistent non-compliance, it is vital not to take it personally.
Documenting the treatment process is critical when a patient refuses treatment, referrals, or any further action after dedicated patient education and documentation on the part of the eyecare provider. It is vital to document what information they have been given about their condition, the risks and consequences of refusing further treatment, and consider asking the patient to sign a refusal form to keep in their file.
If they have refused to listen to treatment recommendations, sending a certified letter detailing the reasons for insisting on a specific treatment or referral will also protect the provider in the case of litigation.
Conclusion
However, in the current healthcare landscape, with productivity and revenue as priorities for eyecare providers, a doctor who practices active listening and compassion will stand out. The choices we make to avoid making assumptions and to truly care about our patient’s overall well-being make us more
effective as doctors and as fellow human beings.
