Keeping Pre-ERSD Patients Pre-ERSD: Using the Health Belief Model Nancy Roth, Ph.D. How I got into this: HIV, Jen No magic bullet, long term lifestyle changes

Chronic CKD Major public health problem Estimated 20 million Americans have CKD Early detection and management can prevent disease progression Disease progression is associated with morbidity, mortality, costs and decline in QoL

There is a disconnect between knowledge and behavior Preventing ESRD The biggest predictors of progression to ESRD are proteinuria, HTN and DM There are significant challenges to working with patients to change their behaviors to reduce the likelihood of experiencing these complications Several of these challenges are highlighted in the dimensions of the Health Belief Model There is a disconnect between knowledge and behavior The health belief model, first introduced in the ’50s and refined in the ‘70s, provides a wonderful framework for thinking about the types of behavior change necessary for patients who do not want to progress to ESRD.

Challenges defined in Health Belief Model: Perceived susceptibility—perception of personal vulnerability to a condition Perceived severity—evaluation of medical/clinical consequences (death, disability, pain) and social consequences (work, family life, social relations) Perceived benefits of action—perception of feasibility and efficacy of action Perceived barriers—perceptions of action as expensive, dangerous, unpleasant, inconvenient, time- consuming The Health Belief Model has 4 key dimensions: Susceptibility, severity, action and barriers.

The Health Belief Model INDIVIDUAL PERCEPTIONS MODIFYING FACTORS LIKELIHOOD OF ACTION Demographic Variables (age, sex, race, ethnicity, etc) Sociopsychological variables Perceived benefits of preventative action Minus Perceived barriers to preventative action Perceived susceptibility to Disease “X” Perceived Seriousness (Severity) of Disease “X” Perceived Threat of Disease “X” Likelihood of Taking Recommended Preventative Health Action Cues to Action Mass Media Campaigns Advice from others Reminder postcards from physician or dentist Illness of family member or friend Newspaper or magazine article Health Education Quarterly (Spring 1984)

Applying the Health Belief Model to ESRD Prevention By systematically looking at each dimension of the model, we can develop an approach to working with patients who are at risk for ESRD We will use as a case a CKD patient with HTN and DM and focus on normalizing blood pressure and controlling sugar to prevent ESRD I will describe a real patient who we will call Ms P or Gramma. I met her about 10 years ago when I decided to adopt an indigent family in North Philadelphia for Christmas. The family had 3 kids who were living with their grandmosther who is about 5 years older than I am. Gramma was your typical patient—morbidly obese, diabetic, hypertensive, arthritic, etc. Over the years, in addition to helping out with the kids, I have worked with Gramma to help her understand her health and to keep her relatively well.

Three Types of Patients YES NO MAYBE I will discuss Gramma as a case because we have learned over the years that while there are many types of patients, they tend to fit into 3 broad categories that I refer to as No, Maybe and Yes. The Yes category are patients who are interested in their health, seek out health information and often start to make behavior changes themselves or with a little encouragement from an HCP. The Maybes are those who might be motivated to make changes—if the barriers to change can be overcome. The Nos are those who are highly unlikely to change. In general, we want to reinforce and support the efforts of the yeses, work with the maybes to overcome the barriers to change, and unfortunately—the nos are highly unlikely to change no matter what we do—and probably are not a priority.

Susceptibility Patients vary in their perception of the extent to which they are personally vulnerable to disease Helping patients to understand that they have a realistic probability of progressing is key So, back to the health belief model. People don’t always have a realistic understanding of their likelihood of progressing to ESRD if they don’t change their behaviors. Gramma sure did not understand that dialysis, blindness, CHF were in her not-to-distant future if she didn’t take her medication, quit smoking, and change her diet. Often, people don’t believe they are likely to progress until they are having dialysis. So the challenge is, how do we helpf them understand, without making them so scared they are paralyzed?

Case: CKD Patient with HTN and DM How can we help patient to see the relationship between HTN, DM and ESRD? Since HTN is “symptomless” what can we point to that will help the patient understand the impact of HTN on his/her health? How can we help patients understand the severity of DM and its sequelae? With Ms P, I worked hard to help her see that the symptoms she was experiencing—like blurry vision—were related to her poor sugar control. It was harder to explain the effects of HTN because hers was symptomless. She tended to get more compliant with medication when her vision got blurry. What has worked for you?

Severity It is important for patients to understand that their disease has consequences that will affect their health and social life There is some research that seems to contradict this In some cases even when patients over-estimate their likelihood of progressing, they do not change their behaviors. Increasing fear is not effective in motivating patients to change We might conclude that it is necessary but not sufficient for patients to be aware of the impact on health and social life they face—and that the risks need to be presented in a way that raises awareness, but does not paralyze the patient I find that helping patients understand the severity of their illnesses is complicated if the disease is chronic rather than acute, if the behavior change is preventive rather than a “cure”, and if the disease is to date asymptomatic from the patient’s perspective.

Case: CKD Patient who needs to control HTN and DM What are the medical consequences of uncontrolled HTN and DM for a CKD patient? How can we help patient to understand them? What are the social consequences of uncontrolled HTN and DM for a CKD patient? How can we help patient to understand them? How can we do this in a way that motivates action rather than paralysis? Gramma had gotten so obese and ill from her diabetes that she was able to go on disability. She felt that getting herself healthy enough to work was an insurmountable task. She didn’t like to take the medication—the diruretic made her urinate all the time, the insulin made her feel woozy, the anti-inflammatory hurt her stomach. . . She could not see that the AEs from the drugs were far less threatening than the diseases themselves. And she felt as though weight gain and loss were entirely outside her control. I worked with her on a number of things: Moderation not unsustainable drastic change Do’s and don’t’s Cost Label reading Nutrition lifestyle change Walking Sugar, salt intake Even small changes were hard. She switched to lemon lime coolaid because she thought that because it was not sweet, it didn’t have sugar. We then had a discussion about reading labels.

Benefits To increase the likelihood of patients changing their behaviors, patients need to understand the benefits of action: efficacy and feasibility It is difficult to demonstrate the efficacy of action when it is abstract: blood pressure means something to us as HCPs—but for patients, it is often just an abstract number Decreasing that number is an abstract goal And, patients perceive a number of barriers to behavior change (diet and exercise—and medication compliance) that make many of our recommendations seem impossible to implement Gramma became interested in thinking about making some changes when she had a goal. She had adopted a really smart young girl and wanted her to go to Head Start. One of the requirements was Gramma helping out. In order to do that, she needed to get out of the house, walk, etc. And in order to do those things, she needed to get her diabetes under better control.

Case: CKD patient with HTN and DM What are the benefits of controlling HTN and DM for a CKD patient? How can we explain this to the patient? What would a patient need to do to control their HTN and DM? How can we help a patient to find it feasible to implement those changes? Many patients are looking for a magic pill to fix them. Sustained behavior change is a difficult concept. Partnering with patients to find ways to make the changes feasible is important. Helping them to figure out how medication fits into their daily routine can help. Working with them to plan healthy meals –and to figure out how and where to obtain the food is important. Gramma lives in a gang ridden, drug infested neighborhood without a supermarket in walking distance. How was she to obtain vegetables?

Barriers Patients perceive a number of barriers that make behavior change difficult. It is important to provide an atmosphere in which patients feel comfortable surfacing the issues and concerns about changing their behaviors Once the concerns are on the table, joint problem solving can occur Overcoming the barriers requires partnering to address the issues. The HCP and the patient become a team working to resolve issues. Together, we can figure out how to resolve, provide support, gain access, etc.

Case: CKD patient with HTN and DM What are some of the barriers to behavior change perceived by patients? What might joint problem solving look like in your setting? What would you need to do to make this feasible? Patients often have concerns about access, money, transportation, child care, time. In addition, family beliefs and routines can be a barrier. How do you change your diet when someone else is the cook? Gramma managed to make enough changes to be more functional in the world. She is still a large woman, but has lost 50 pounds. Shw not only made it to Head Start to do her volunteer hours, she is now a paid part time staff member. In order to make it to work regularly, she has to take her insulin. Her diet is not ideal, but she has switched to diet soda rather than sugared soda or coolaid.

The Adherence Continuum Non-compliant pill irregularly pill regularly pill + behavior change She is a great example of what I call the adherence continuum—which suggests that there may be milestones on the path to our goals with patients. For example, can we get a patient who is non-compliant with medication to take their medication sometimes. Can we get from sometimes to 80% compliance? Etc.

From Model to Practice The Health Belief Model provides a useful framework for understanding some of the factors that influence the extent to which a patient will make behavior changes that can prevent disease progression. We can use the model to help frame discussions with patients which lead to joint decision-making about how to work together to prevent disease progression. We’ve discussed each of the elements of the health belief model. I hope that it provides you with a useful framework for working with patients to prevent ESRD. It suggests that first patients need to understand that they are ill—severely ill. They need to understand that changing certain behaviors can keep them from getting even sicker. And we, as HCPs, need to understand that patients face considerable barriers to taking the actions we suggest to them. We can partner with them to help them find ways to overcome these barriers and prevent ESRD.