Engaging the Disengaged: Promoting Successful Self-Management in Patients with Chronic Medical Illnesses William H. Polonsky, PhD, CDE January 9, 2017 whp@behavioraldiabetes.org

Three Operating Principles Living well with a chronic medical illness can be tough 1.

Three Operating Principles Living well with a chronic medical illness can be tough 1. The typical reasons why we think it’s tough are wrong 2.

HCP Attributions Regarding Problem Patients HCP top 5 complaints about patients with diabetes: Patients say they want to change, but are not willing to make the necessary changes Not honest/Only tells me what they think I want to hear Don’t listen to my advice Diabetes not a priority/Uninterested in their condition/ ”In denial”/Don’t care/Unmotivated They do not take responsibility for self-management Edelman et al, 2012

Three Operating Principles Living well with a chronic medical illness can be tough 1. The typical reasons why we think it’s tough are wrong 2. No one is unmotivated to live a long and healthy life 3.

Percentage of Patients Achieving ADA Treatment Targets % reaching ADA target 24.9% Wong et al., 2013

Re-Thinking Motivation If no one is unmotivated, then what’s the problem? Obstacles to self-care outweigh possible benefits The benefit conundrum And there are typically a TON of obstacles! The underlying theme to most obstacles is a lack of “worthwhileness”

Lack of Worthwhileness

1. Emotional Distress in CHD Carney and Freedland, 2016

1. Emotional Distress in Diabetes Emotional distress makes it harder to make healthy behavior changes Poor self-management1 Poor BG control2 More hospitalizations3 3x higher incidence of CAD and retinopathy4,5 2x higher risk of mortality6 1. Ciechanowski et al, 2003; 2. Lustman et al., 2000; 3. Rosenthal et al., 1998; 4. Carney et al., 2002; 5. Kovacs et al., 1995; 6. Katon et al., 2005

Diabetes Distress …diabetes is taking up too much of my mental and physical energy every day …I am often failing with my diabetes regimen …diabetes controls my life …friends or family are not supportive enough of my self-care efforts …I will end up with serious long-term complications, no matter what I do Polonsky et al, 1995; Polonsky et al, 2005

Diabetes Distress Prevalence Type 1 diabetes (n = 390): 39% Type 2 diabetes (n = 503): 35% Fisher et al, 2010; Fisher et al, 2015

2. No Perceived Benefits What’s the difference? This disease is going to get me no matter what I do. I’ve been taking these blood pressure meds like I’m supposed to, but I don’t feel any better. Why bother bringing my BG logbook to my doc? I’m just going to get chewed out.

SMBG Beliefs and SMBG Use Polonsky et al, 2013

3. Perceived Costs Are Too High 24 hours a day, 7 days a week. I can’t go 10 minutes without thinking about this damned disease. There’s never a break. I am sick of it! Taking all of these pills can’t be good for me

Patient Medication Beliefs Perceived Costs Adverse effects Concerns about long-term adverse effects Represents “sickness” Perceived Benefits Rarely apparent HCP may state that long-term risks are reduced

Meet Bobbie 62 years old, recently diagnosed with T2D. Has refused to start metformin as directed by her physician. “I heard on TV that any of these medications can cause heart failure and other problems. And I saw a program about controlling diabetes, or even reversing it, with supplements instead of these dangerous medications.”

Patients and HCPs Have Very Different Medication Beliefs HCPs see regimen intensification as expected in response to inevitable beta-cell decline. Patients highlighted the negative response they felt toward intensification, emphasizing the goal of reducing therapy if possible. THEREFORE: HCPs and patients tend to have opposing goals (regimen intensification vs. regimen reduction). Grant et al, 2010

4. Vague/Unrealistic Expectations I did everything I was supposed to, and my blood sugars are still all over the place. I must take care of my diabetes perfectly, or I am a failure.

5. Environmental Pressures I have more important things to worry about, like making sure that I don’t lose my job. So I don’t have time for exercise and stuff like that.

Lack of Worthwhileness

So What To Do?

Lack of Worthwhileness Emotional distress Perceived benefits are nil Perceived costs are too high Unrealistic (or too vague) expectations Environmental pressures

When Perceived Benefits are Nil: Addressing the Problem Provide hope Promote urgency Provide personalized evidence that positive actions can make a positive difference

Facts and Fictions Q. Diabetes is the leading cause of adult blindness, amputation, and kidney failure. True or false? A. False. To a large extent, it is poorly controlled diabetes that is the leading cause of adult blindness, amputation and kidney failure. 34 Well-controlled diabetes is the leading cause of… NOTHING!

Fact Check This doesn’t mean good care will guarantee that you will not develop complications. This does mean: with good care, odds are good you can live a long, healthy life with diabetes.

Joslin 50 Year Medalists

T1D Complications After 30+ Years

T1D Complications After 30+ Years

Conclusions: “This study shows a normal life expectancy in a cohort of subjects with type 2 diabetes patients in primary care when compared to the general population.”

A “New” Perspective on Chronic Medical Illness “To live a long and healthy life, develop a chronic disease and take care of it.” - Sir William Osler

Promoting Urgency An uncontrolled chronic medical illness can hurt you, even if you feel okay Treatment should not be delayed

Back on Track Feedback Name: Molly B. FID #: x Tests Usual Goals Your Results FID #: Your score should be SAFE: At or better than goal NOT SAFE: Not yet at goal A1C 7.0% or less 8.7% x Blood Pressure 130/80 125/75 LDL 100 or less 116

Personalized A1C Feedback Reference Type Number of subjects A1C Difference Chapin et al, 2003 Chart in medical record, conversation presumed 127 T2D adults 0.7%* Levetan et al, 2002 Laminated poster, then call from educator 150 T1D/ T2D adults 0.5%* O’Connor et al, 2009 Periodic mailed brochures, no discussion 3703 T1D/T2D adults 0.0% Sherifali et al, 2011 465 T2D adults 0.1%

Communication and Refill Adherence Ratanawongsa, et al, 2013

When Perceived Benefits are Nil: Addressing the Problem Provide hope Promote urgency Provide personalized evidence that positive actions can make a positive difference

Perceived Treatment Efficacy Help people to see that their actions can make a positive difference The wise use of personalized feedback Polonsky and Skinner, 2010

Effectiveness of the feedback message Frequency of Feedback Personal meaningfulness Clarity Guidance and support Patient characteristics Patient engagement and behavior change Polonsky and Fisher, 2015

Paired Testing: Sam’s Story Age 42, married, school teacher T2D 6 yrs, BMI 33, last A1C 7.9% Steady weight gain since dx Used to be very active, but quit sports 5 years due to injury No longer checks BGs due to “consistently high readings” Takes glargine, 80 units QD Was encouraged to begin walking, but refuses (“won’t help”).

Sam’s Exercise Experiment Day Pre- Exercise Post- BG Change 1 2 3 4 5 6 7 129 mg/dL 101 mg/dL -28 mg/dL 194 mg/dL 153 mg/dL -41 mg/dL 157 mg/dL 94 mg/dL -63 mg/dL 141 mg/dL 108 mg/dL -33 mg/dL 152 mg/dL 127 mg/dL -25 mg/dL 130 mg/dL 98 mg/dL -32 mg/dL 124 mg/dL 102 mg/dL -22 mg/dL Daily walk (45 minutes) 7 consecutive days: Measure BG right before and after walk Average BG change: -35 mg/dL

“I wonder how breakfast affects me “I wonder how breakfast affects me.” “I wonder why I’m often so tired in the evening.” “I wonder which type of beer would raise my BG’s the least.” .

Lack of Worthwhileness Emotional distress Perceived benefits are nil Perceived costs are too high Unrealistic (or too vague) expectations Environmental pressures

Five Medication “Secrets” Big bang. Taking your meds is one of the most powerful things you can do to improve your health Working silently. Your meds are working even if you can’t feel it Balancing the claims. There are always pro’s and con’s; the con’s are probably not as big as you think. No blame. Needing more meds isn’t your fault Not a health metric. More meds don’t mean you’re sicker, fewer meds don’t mean you’re healthier

A Diabetes Quiz ROY takes 2 different diabetes pills and insulin, and his last A1C is 6.8%. SAM hasn’t been prescribed any diabetes pills, and his last A1C was 9.1%. Both patients have had diabetes for the same length of time. Who is doing better with his diabetes? ________________________________________ ROY. How healthy you are, and your risk of complications, is not determined by the type of treatment or how many pills you take. It is your metabolic results that matter. Even if you are not taking pills or insulin, high blood sugars will likely lead to future problems. 57

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