How To Facilitate Adherence In High-Risk Patients

Poorly managed diabetes can have devastating consequences and there are challenges in getting patients to do their part in following treatment regimens. With these things in mind, this author offers key insights into the psychology of non-adherent behavior and how to get patients back on the right path.

   It is estimated that over 23 million people in the United States are living with diabetes.1 In recent decades, our knowledge about the importance of early and aggressive treatment of diabetes, and the availability of effective treatments has increased dramatically. Yet the number of people who are managing their diabetes well remains a very small minority and the outcomes of poorly managed diabetes continue to be devastating.

   Those of us who work with people with diabetes have likely had patients who are engaging in behaviors that are endangering their life and limbs. Efforts to help these patients change their behavior can often be frustrating, disappointing and unrewarding. As a result of these discouraging experiences, healthcare professionals may develop beliefs about these high-risk patients and have responses to them that actually contribute to the problem.

   It is commonly believed that non-adherent patients are unmotivated, lack adequate willpower, are not scared enough and are perhaps incapable of making necessary change. These assumptions about these patients, though understandable, are incorrect. As a result, we may try to motivate them by using tactics that simply do not work for most people. These tactics may include urging more willpower, offering unwanted advice and threatening them with the scary outcomes of continued non-adherence.

   Unfortunately, these tactics can cause these high-risk patients to become even more frustrated and disengaged, immobilized with fear, and hopeless about their ability ever to manage diabetes well.

   People do not follow through with recommended changes when their perceptions of the obstacles outweigh the understood benefits. In order to employ more effective strategies to facilitate adherence, it may be necessary first to consider a new framework for understanding non-adherent behaviors. Denial, willpower and ability are not the factors that explain why a patient is not following through with self-care recommendations.

   The person’s non-adherent behavior will often make sense when you understand the barriers behind it. To do this, it is important to look at how the individual patient views his or her own situation. One can evaluate the benefit versus the cost by answering two important questions. Does the patient think the self-care recommendation is worthwhile? Does the patient view it as achievable?

Does The Patient View Self-Care Recommendations As Worthwhile?

   With every new behavior, patients must decide for themselves, “Is this worth it?” There are three major factors that can negatively affect whether the patient sees a particular recommendation as worthwhile. These factors include: the presence of depression; the belief that there are no real benefits; and the perception that the costs are too high (i.e. unpleasant side effects, too expensive, embarrassment).

   Depression can make a person feel like nothing is worthwhile, including self-care. The prevalence of a significant problem with depression is about twice as likely in people with diabetes (like other chronic illnesses) and has a powerfully negative effect on self-care. It can disable the energy, concentration and interest required to follow through with the many important self-care behaviors necessary to manage diabetes well. Therefore, these patients perceive an increased “cost” of the recommendation, which reduces their confidence in achievement.

   Often, patients do not understand why their physician is recommending a particular therapy. They may not understand what the recommendation is supposed to accomplish and why it is important for them. Adding to the problem, there are common problematic beliefs about diabetes that can diminish the patient’s perception of the value of the self-care recommendation.

   Especially harmful are the beliefs that diabetes is a death sentence (“Diabetes means I am doomed no matter what I do”), diabetes is no big deal (“Diabetes does not really affect me right now so I don’t need to do anything about it”), and skepticism about the effectiveness of diabetes treatment (“Nothing seems to help. My blood sugars are always high”). Holding to these beliefs can prevent a person from appreciating the importance of getting effective treatment in preventing complications and from seeing the recommended change as being “worth it.”

   In making the decision to adopt a certain recommendation, the patient will weigh its costs to decide if it is worth it. These “costs” can be financial, physical, emotional and social. For example, a common reason why people do not fill prescriptions is because they cannot afford them. Financial barriers are an important consideration in these times of economic hardship.

   However, physicians must also consider other important costs that may not be so obvious. Many people report that the physical pain of checking their blood glucose is a major deterrent. Some patients may decide not to wear their offloading boot because they feel embarrassed to be seen in it. Other patients may be very reluctant to start on insulin because they feel this is evidence that they have failed at lifestyle changes and worry about criticism from family members.

Does The Patient Perceive Self-Care Recommendations As Achievable?

   Even if the patient decides that the self-care recommendation is worthwhile, the patient also needs to view it as something he or she can actually do. The common obstacles to whether the patient sees something as achievable are: a lack of knowledge/skill, no clear plan for action and common environmental barriers (i.e. financial concerns, insufficient time or lack of access to care).

   A key ingredient to self-efficacy, the belief that one can do something, is having the necessary knowledge and skill required to achieve a goal. For example, it is going to be difficult for a newly diagnosed person to do appropriate diabetes-friendly meal planning if he or she has not yet learned the definition of a carbohydrate. Many diabetes self-care activities require complex knowledge and skill.

   Many people have the intention to make a change and the knowledge they need, but get stuck because they do not have a clear plan for action. Instead, they have goals that are too vague (“I need to lose weight”) or unrealistic (“I need to lose 30 pounds by our next visit”).

   An adequate plan for action starts with a realistic goal that the patient can accomplish in a short period of time. The patient knows exactly what, when and how he or she is going to do it, and why he or she is bothering. These patients have considered potential obstacles and determined what they can do about them.

   Some self-care recommendations seem unachievable because of the potentially numerous environmental barriers that patients must overcome. These include factors such as not having enough time, poor access to care, inadequate insurance, transportation problems and inclement weather. Addressing these issues should be part of the plan.

Case Study: When A Patient Presents With A Small DFU And A Long History Of Diabetes

   Let us consider the case of Mr. Smith, a 61-year-old, semi-retired plumber who has had type 2 diabetes for over 20 years. He is a pleasant man who makes jokes about being a “bad diabetic.” This gives the impression that he does not seem to take his diabetes seriously even though he is losing his eyesight, has severe neuropathy and presents for treatment with a small diabetic foot ulcer.

   He has been prescribed long-acting insulin at bedtime and short-acting insulin at meals. The patient also takes oral medications for blood pressure, cholesterol and pain. His last A1c result was 9% but his blood pressure and cholesterol are in target range. He acknowledges difficulty following through with taking his insulin and offloading.

   In a conversation about his diabetes, Mr. Smith admitted that he has been struggling with depression for most of his adulthood but has never gotten treatment. He reports a significant problem with a lack of interest in his own self-care and extreme difficulty with energy, concentration and sleep. When asked how insulin treatment has been going, Mr. Smith described some very scary episodes of hypoglycemia. He notes that as his vision has declined, it has become very hard to see the insulin in the syringe. Accordingly, he is not confident in his ability to draw up the correct dosage and often “guesses.” He also reports frequently “forgetting” his nighttime insulin, noting that he often falls asleep before he takes it.

   When discussing his diabetic foot ulcer, Mr. Smith stated that his mother lost both of her legs to diabetes. He does not believe there is anything he can do to prevent that same outcome and is actually very fearful. He reports that he is having difficulty with offloading because he is self-employed and is concerned about financial problems. Mr. Smith also notes that when he has attempted to stay off his foot completely, his wife got angry with him for “lying around all day.”

Is The Patient Depressed?

   Strategies for facilitating adherence behaviors involve helping patients increase their perception that what you are recommending is both worthwhile and achievable.

   1) Address underlying depression. Know the cardinal symptoms of depression. For a diagnosis of depression the person must have one or both of the two cardinal symptoms: 1) a sad, down or hopeless mood and/or 2) a lack of interest or pleasure in doing things. Consider using a depression screener (such as the PHQ-9). Reassure patients that depression is treatable and provide referrals for treatment. Remember treating depression is necessary but not sufficient for improving health behaviors.

   Mr. Smith was given the PHQ-9 and scored at a level indicative of a severe level of major depressive disorder. He was referred to psychiatry. Subsequently, the patient began taking an antidepressant medication (which also helped with sleep and neuropathy pain), and received weekly individual counseling to help him learn new coping behaviors. Over the course of treatment, Mr. Smith’s depressive symptoms improved significantly. He became more interested in his self-care and was able to take on more responsibility with his diabetes.

Strengthen The Perceived Benefits Of Self-Care

   2) Strengthen interest in the recommended self-care behavior by helping the patient increase the perceived benefits and decrease the perceived costs. Educate the patient about why you are recommending a change, ask about what barriers he or she might anticipate, and help the patient think through possible solutions.

   To increase the perceived benefit of treatment, the treating physician explained to Mr. Smith that there was actually a lot he could do to help his foot heal properly. Physicians emphasized the importance of maintaining healthier blood glucose levels. They also explained that staying off his foot as much as possible would significantly help new cells to form a healthy scab on his foot and reduce the risk of infection. These physicians also conveyed that this important healing process requires several weeks of treatment and how they would be working together with the patient to help ensure that his foot heals well.

   To address Mr. Smith’s perceived “costs” of adherence (taking insulin = fear of hypoglycemia due to guessing with dosage; offloading = financial concerns, conflict with spouse), physicians discussed the following measures to facilitate adherence to the treatment plan.

   • Ask the patient’s endocrinologist if Mr. Smith could be prescribed insulin pens instead of syringes in order to eliminate visual guessing with dosage.
   • Explore the possibility of a short-term disability leave from work.
   • Ask Mr. Smith to bring his wife to the next appointment so she could be educated about offloading and be involved in the treatment plan.

Identify And Dispel Misconceptions About The Disease

   3) Assess common problematic beliefs about diabetes and address them. Identify these perceptions by asking Mr. Smith, “What do you think about diabetes?” Help patients see that having diabetes is an important immediate concern, is not a death sentence and treatments actually accomplish something. Focus on the benefits of self-care versus scary outcomes.

   Mr. Smith described a fatalistic view of diabetes and stated that he had a hard time believing that his outcome could be different from his mother’s outcome. To address this belief, the treating physician told Mr. Smith it is common for people to develop scary beliefs about diabetes when they have witnessed family members experience terrible outcomes such as his mother did. However, the physician explained that we now have the knowledge and tools available to help prevent those same outcomes. The physician reassured the patient that his efforts to improve his blood glucose and have proper foot care could facilitate healing.

Collaborate With The Patient In Crafting A Specific Game Plan

   4) Help prioritize goals and make a clear, reasonable, specific plan for action. Collaborate with the patient on setting a goal (selecting one or two things to focus on) and making a plan. Help the patient think through potential obstacles (“What might get in your way?”) and ask him or her to state out loud exactly what he or she is going to do.

   The treating physician explained to Mr. Smith that the most important priorities in achieving his goal of healing his foot were to improve blood glucose levels and to increase his offloading. In a conversation about some of the different self-care behaviors that could help achieve these goals, the physician and Mr. Smith decided that he would: 1) increase the number of nights he took his long-acting insulin and 2) wear an offloading boot and elevate his foot as much as possible.

   In crafting a specific plan with action steps, it was clear that when Mr. Smith left the office, he would pick up his new prescription for insulin pens and have the pharmacist demonstrate how to use them. He would set an alarm for 9 p.m. as a reminder to take his long-acting insulin. He would keep his glucometer and glucose tablets with him so he could treat hypoglycemia if necessary. He agreed to put on his offloading boot as soon as he got home that day.

   Mr. Smith would also discuss the plan for a short disability leave from work with his wife. He would also explain to her the importance of offloading over the next several weeks and ask for her support and encouragement in getting off his foot at home. He would also ask her to join him at his next appointment. Mr. Smith confidently restated this plan, which was written down. He left the office feeling empowered and supported in his effort to heal.

Underscoring The Importance Of Follow-Up And Feedback

   5) Be sure to follow up, provide feedback for the steps the patient takes, recognize previously unidentified barriers and adjust the plan as needed. At the following week’s appointment, Mr. Smith reported that he had taken his long-acting insulin nearly every night (one night he forgot to set his alarm) with no hypoglycemic episodes. He commented on how much he liked the new insulin pens after he got used to them. His wife joined him at the appointment and seemed much more supportive of his efforts. Mr. Smith indicated that he was wearing his offloading boot and that his foot was feeling much less painful. Unfortunately, this made it harder for him to prioritize staying off his foot.

   First, the treating physician commended Mr. Smith on his efforts and the progress he had made in his healing. The physician reminded the patient that his continued efforts on blood glucose management and offloading would continue to be very important in upcoming weeks for his foot to heal properly, even if he started to feel better. Mrs. Smith offered to help remind him about his nighttime insulin and encourage him to stay off his foot as much as possible. Mr. Smith agreed and stated that he would continue to wear his boot, stay off his foot as much as possible, and continue with the efforts to remember his insulin.

In Conclusion

   Hopefully, the outlined strategies will be helpful in giving interested practitioners some new tools for approaching their own challenging cases. It is difficult for healthcare professionals, as it is for patients, to make adjustments in how they do things for the possibility of getting better results.

   Do the obstacles you foresee to these suggestions outweigh the understood benefits or do you view these suggested strategies as worthwhile and achievable? There may be many barriers to making these changes in your practice. These barriers may include time pressures, different priorities and limited staff to name a few. Finding small ways to incorporate some of these changes and involving other office staff members in these efforts may improve your effectiveness with these high-risk patients, and provide a more rewarding experience for all involved.

Dr. Guzman is a clinical psychologist specializing in diabetes. She is the Co-Founder and Director of Clinical Services at the Behavioral Diabetes Institute, a non-profit organization devoted to addressing the emotional and behavioral side of diabetes.

References:

1. Centers For Disease Control And Prevention (CDC). National Diabetes Fact Sheet, 2007. https://www.cdc.gov/diabetes/pubs/pdf/ndfs_2007.pdf 2. Anderson BJ, Rubin RR. Practical psychology for diabetes clinicians, 2nd ed. American Diabetes Association, Alexandria, Va., 2002. 3. Ciechanowski PS, et al. Depression and diabetes: Impact of depressive symptoms on adherence, function, and costs. Arch Intern Med 2000; 160(21):3278-3285. 4. Kroenke K, Spitzer RL & Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Int Med, 2001 Sep; 16(9):606-13. 5. Lustman PJ, et al. Treatment of major depression in adults with diabetes: a primary care perspective. Clinical Diabetes 2000; 23(7):934-942. 6. Ong KL, et al. Prevalence, treatment, and control of diagnosed diabetes in the U.S. National Health and Nutrition Examination Survey. Ann Epidemiol 2008; 18(3):222-229. 7. Polonsky WH. Diabetes burnout: what to do when you can’t take it anymore, American Diabetes Association, Washington, D.C., 1999. 8. Rollnick S, et al. Motivational Interviewing in Health Care. Guilford Press, New York, 2008.