Dealing with DiabetesDecember 14, 2018Carol Greenlee MD

What is Diabetes?• Not a “moral” disease (not a condition of “bad” people)

• much “judgement” surrounds diabetes (stigma) (blame)

• Diabetes is a metabolic disease• Diabetes is very complex in etiology & management

• Multiple different genetic influences• Fat distribution; effect of fat accumulation on cell function• Pancreas (Beta cell) capacity; risk for complications

• Multiple different environmental influences• Including the microbiome, sleep, type of food, activity, trauma

• There is significant Response Heterogeneity• Not everyone responds the same to same diet, exercise or

meds• Likely at least some genetic basis for differences in responses

A few things to think about with diabetes…

What does the A1c tell you?

Why do my patients with diabetes always seem to get worse over time?

How do I get my patients with diabetes to do what I tell them?

“The Memory Test”

“The Cheat Test”

1976 paper

Hemoglobin inside RBC The average RBC life span is 3 months

A1c correlates with & predicts complications

A good population metric

A 1% point reduction lowers the risk of serious complications by 40-50%

Some caveats for A1c for individual patients• Assay accuracy (how accurately reflects actual average glucose)

• Anything that lengthens or shortens the RBC lifespan or alters glycosylation rate or interferes with assay

• Interfering substances/conditions • blood loss – shorter RBC lifespan – lower A1c• iron deficiency – longer RBC lifespan – higher A1c

• Age and ethnic/race difference – A1c higher for average BG

• Assay Precision (how precise or reproducible is the result)

• Having a target range is probably better than a cut-point

• Glucose variability (daily ups & downs) not represented • Short-term change in glucose control not reflected

• Need for individualized targets• Based on benefits vs risk of tight control

Assay Precision

Glucose Variability

clinical equipoise in setting glycemic goalsNo single HbA1c level is

appropriate for all patients…

“we should abandon the notion that HbA1c levels ≤7% are well controlled and levels > 7% are uncontrolled.”

This arbitrary dichotomy does not adequately portray whether we are optimizing the benefits of treatment, quality of life, and value for individuals

Individualized glucose targets

Help from TechnologyTreatment has become better but more complex …. & harder (increased patient burden with capacity often exceeded)

• Should be treating diabetes to live not living to treat diabetes

• “Artificial Pancreas”• Continuous Subcutaneous Insulin Infusion (CSII)

• Insulin pumps • Continuous Glucose Monitoring (Sensor) (CGM)

• CGM for T2DM & T1DM• Example – Freestyle Libre

• “Flash” glucose monitoring

Can provide a more accurate & complete picture

Ambulatory Glucose Profile (AGP)• CGM data standardization consensus conference

– AGP one page summary• CGM metrics

– Data sufficiency (at least 70%)– Average glucose & GMI (glucose management index) (eA1c)*– Time in Range (TIR) ( “in-range” default 70-180)

» TIHypo (<70 & <54)» TIHyper (>180 & >250)

– Glucose Variability (GV)* (<36% low variability)

• An AGP model day visualization• A set of daily glucose profiles

AGP provides a truer reflection of glycemia than A1c*Studies show TIR (+/- GV) Development of complications

A few things to think about with diabetes…

Why do my patients with diabetes always seem to get worse over time?

How do I get my patients with diabetes to do what I tell them?

Natural History of Diabetes is to Progress (“get worse”)

Severity of Glucose Intolerance

Normal Blood Glucose

IGT Frank DiabetesNGT

Macrovascular Complications

Insulin Resistance

Years to Decades

Insulin Secretion

Postprandial Blood Glucose

Microvascular Complications

Progressive ß-cell Dysfunction

Typical Diagnosis of Diabetes

Fasting Blood Glucose

Type 1 Diabetes gets “worse” over Time

Black dx as adult - White dx as child

C-peptide Positivity (Insulin made by pancreas) years after Dx T1DM

Disease Progression is not “the Patient’s Fault”

Researchers looking for the “Holy Grail”…• To find something to halt the progressive

worsening of diabetes following diagnosis• Reduce loss of beta cells

• T1DM – immune modulators• T2DM- trials looking at treatment durability

• Metformin- Pioglitazone-GLP1RA

• The earlier the better – prevention

Current T2DM Care Paradigm

• 90% of patients with T2DM cared for in primary care setting• <25% referred to specialists

• Major reason for referral: initiation of /difficulty with Insulin therapy• PCP serves as primary provider of diabetes education

• Low use of Certified Diabetes Educator (CDE) resources• <25% of patients counseled by CDE annually

• 24% have no access to CDE in geographic region• Major obstacles to optimal diabetes care cited by PCPs

• Insufficient time /Insufficient staff & Patient adherence Endocrine Practice Dec 2011; Beaser et al

• Pressure to meet performance metrics (A1c <7%, <8%, >9%)

Diabetes Overwhelmus

BMI

Foot exams

Blood Pressure

Pills

Meters

A1cKetones

Lancets

Uma

Diabetes Overwhelmus

BMI

Foot exams

Blood Pressure

Pills

Meters

A1cKetones

Lancets

Uma

Non-adherence (not doing what the doctor wants you to do)

Obligation to be a “good” patient. Fear of being labeled a difficult patient

Threat of being expelled if fail to comply (“If you don’t ----, I can’t take care of you any more”)

Words Matter : Study shows importance of language choices in diabetes care

• Health care providers who use "negative terms," such as "nonadherent" or "noncompliant" may create a disconnect leading to negative health outcomes for diabetes patients

• Stereotypes or language choices that place blame can cause patients to disengage with health services and develop diabetes-related distress and sub-optimal diabetes self-management

• Carefully chosen language can have a positive effect• Researchers recommend using more appropriate

language in clinical settings to support patients' diabetes self-management and psychosocial well-being.

Ditch the “IC” wordExample:• Lonnie has diabetes. Lonnie has lived with diabetes

for ten years.Instead of• Lonnie is a diabetic. Lonnie has been a diabetic for

ten years.

“Focus on the person, not the diagnosis. You’ll treat both more effectively that way.”

Expectations …. StigmaFrom Heath Care professionals:• “I have no patience for people who cause themselves to

become ill, lose limbs, and disregard their medication/diet regimen.”

• “… many of those who have diabetes are noncompliant and don’t take care of themselves.”

Patients influenced by stigma (expectations impact behavior):

Guilt, shame, blame, embarrassment, isolation Higher BMI Higher A1C Self-reported blood glucose variability

Why doesn’t my patient follow the treatment plan/ take control?Points from the Behavioral Diabetes Institute

• Perceived Worthlessness• Pointlessness (what good does it do?)• Hopelessness

• Too Many Personal Obstacles• Depression/ Diabetes Distress• Medication Misperceptions/Fears• Lack of education and Self management skills • Environmental(Patient Context / “Needs & Circumstances”)

(LIFE)

• The Absence of Support & Resources• Diabetes slips to the background (serious but not urgent)• Infrequent supportive interaction with HCP (dialogue)

Diabetes Distress

BMI

Foot exams

Blood Pressure

Pills

Meters

A1c

Ketones

Lancets

Uma

Futility FEAR

DiabetesDistress

associated with

WorseEngagement

andOutcomes

for Patients

45% of patients Report DDOnly 24% report that their HC team asked them howDiabetes affected their lives

The 7 major sources of Diabetes Distress • 1. Powerlessness• Feeling that one’s blood sugar numbers have a life of their own; e.g., “feeling that no matter how

hard I try with my diabetes, it will never be good enough.” (Hopelessness- pointless)• 2. Negative Social Perceptions• Concerns about the possible negative judgments of others; e.g., “I have to hide my diabetes

from other people.”

• 3. Physician Distress• Disappointment with current health care professionals; e.g., “feeling that I don’t get help I

really need from my diabetes doctor.”

• 4. Friend/Family Distress• There is too much or too little attention paid to diabetes amongst loved one; e.g., “my family

and friends make a bigger deal out of diabetes than they should.”

• 5. Hypoglycemia Distress• Concerns about severe hypoglycemic events; e.g., “I can’t ever be safe from the possibility of a

serious hypoglycemic event.”

• 6. Management Distress• Disappointment with one’s own self-care efforts; e.g., “I don’t give my diabetes as much

attention as I probably should.”

• 7. Eating Distress• Concerns that one’s eating is out of control; e.g., “thoughts about food and eating control my

life.”

True or False

Diabetes is the leading cause of adult blindness, amputations and kidney failure.

FalsePoorly Controlled Diabetes is the leading cause of adult blindness, amputations and kidney failure.

Well Controlled Diabetes is the leading cause of… Nothing.

Need to Provide:• Evidence-Based HOPE WHP

• “With good care, odds are pretty good you can live a long and healthy life with diabetes”

Fear of Complications large contributor to Diabetes Distress

The Language of Diabetes Complications: Communication and Framing of Risk

• Messages in North American and Australasian Diabetes-Specific Media (from American Diabetes Association, Canadian Diabetes Association, etc.)

• Linda J. Beeney and Elizabeth J. Fynes-Clinton – Clinical Diabetes 2018

•Majority had loss-framing (e.g. “having diabetes is the leading cause of blindness”) with few if any risk reduction strategies offered hopelessness

vs• Gain-framing (“early diagnosis & treatment of diabetic

retinopathy can prevent up to 98% of severe vision loss”) plus strategies - “get annual eye exam” more effective (evidence based)

Need to Provide: (WHP)

• Evidence-Based HOPE• “With good care, odds are pretty good you can

live a long and healthy life with diabetes”

• Tangible Sense that their efforts make a difference

• Establish Treatment Efficacy• Discovery Learning (paired BG testing)

Need to Provide a Tangible sense that their efforts make a difference:

• Paired Glucose Testing• Before and After exercise

• “I just want you to test to see if it makes any difference”• Before and After various foods

• “See what happens when you eat it, maybe you can find an amount that works for you”

• Watch responses after medication changes• “I need you to check to see if the new medication is working or not”

(explain not every med works for every person) (teach them to use data)

Help them prove their case is not hopeless – care is not pointless – they are not powerless

In essence, need to develop patient activation

• Patient activation emphasizes patients’ willingness and ability to take independent actions to manage their health and care (includes mindset). It is understanding one’s role in the care process and having the knowledge, skill, and confidence to manage one’s health and health care.

• Activation differs from compliance, in which the emphasis is on getting patients to follow medical advice.

Able to do their part – to take on their role for their health ownership (vs buy-in)

Knowledge, skills & confidence - first line of defense against Diabetes Distress

• Start with focused diabetes education (DSME) for areas of concern –

• Show the evidence • Teach the strategies

• May be lacking in some educational materials • Ensure Self-management knowledge & skills –> Know-

How & confidence

• Refer to Behavioral Health if education efforts fail to improve the Diabetes Distress

Approach to Helping People withDiabetes Difficulties

• Identify patients with “poor control” - top 10 highest A1c • Set up a Planned Visit - just to focus on diabetes• Do Pre-visit Prep – get A1c at or before appt

• At OV: (start w PFE -Med Management)• Share the data (& look at SBGM data)

• Ability to Download glucose meters*• Share the “why” along with HOPE

• Getting your BG closer to normal will help you have more energy & help prevent---” vs “You are going to lose your feet & end up on dialysis”

• Don’t blame – Learn more about the patient (curiosity & compassion & cohesion – in it together) (may need to explain your newapproach)

• “ We need to figure out what is going on, not all meds work for every person…are you having any problems with your meds…”

• What is the most difficult for you; what concerns you most (worried about, afraid of), What are your goals (in life, not just “BG goal”)

Approach to Helping People with Diabetes Difficulties

• Identify patients with “poor control” - top 10 highest A1c • Set up a Planned Visit - just to focus on diabetes• Do Pre-visit Prep• At OV:

• start w PFE -Med Management ownership• Good medical review & exam (cause for high BG)• Set goals and plan

• Utilize Discovery & “ownership”: use SBGM: “looks like we need to do some detective work…”“check fasting BG x 2 days if >120, then see what happens if you increase insulin to XX units” or “start with supper, check before & 2 h after eating” “see what happens when you eat xx”

• or offer professional CGM as way to help find out if meds are working or to “see what your body needs”…not as way to “catch” the patient – share results with patient (with concern not scolding)

• Hawthorn Effect okay – capitalize on it!• Follow up with patient! (care manager, health coach, portal)

Conclusions• Focus on helping people live with diabetes

• Avoid stigmas – entire care team awareness • Encourage team to be curious - not furious• Don’t give up - give hope

• Diabetes is hard (for the team & the patient)• Automate what can be automated along with registries &

standing orders for team care• Utilize Planned visits for patients – especially when poor

control• Pre-visit prep is invaluable

• Get labs ahead of appointment (also decreases work)• Download glucose meters – LOOK at the data• Share the “why” with all team members & patients

• Provide Tools not Rules

What’s the Answer – Diabetes is Hard

What does the A1c tell you? – Not the whole story of glycemia

Why do my patients with diabetes always seem to get worse over time? – Don’t blame the patient - the diabetes gets worse over time -progressive loss of beta cells (insulin secretion) & not all meds, diets, exercise regimens work for all patients

How do I get my patients with diabetes to do what I tell them? –Don’t “tell them what to do” provide hope, ensure ability to do their part, promote participation & ownership – but also be in-it-together with them