Literacy, Health Communication & Self-Management

Dean Schillinger, MD UCSF Professor of Medicine in Residence

Director, UCSF Center for Vulnerable Populations SF General Hospital

Chief, California Diabetes Program

CA Dept Public Health

Objectives

Review statistics and definitions re literacy and 'health literacy' in US, especially public healthcare systems

Describe research that shows associations b/w health literacy and health outcomes, with diabetes self-management as exemplar

Argue that health communication is partial mediator of this relationship, and share some practice-based research re health communication interventions

Vulnerabilities Cluster within Individuals and Neighborhoods

Assessing for Vulnerabilities V iolenceU ninsuredL iteracy and LanguageN eglectE conomic hardship/food insecurityR ace/ethnic discordance, discriminationA ddictionB rain disorders, e.g. depression, dementia, personality disorderI mmigrantL egal statusI solation/Informal caregiving burdenT ransportation problemsI llness ModelE yes and EarsS helter

Schillinger 2007

What is Health Literacy?

“The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make [informed] health decisions.”

-Institute of Medicine, 2004

?3 domains: oral (speaking, listening); written (reading, writing); numerical (quantitative).

Capacity/Preparedness Demand Mismatch

11stst National Assessment of Health National Assessment of Health LiteracyLiteracy n=19,714

Below Basic: Circle date on doctor’s appointment slip

Basic: Give 2 reasons a person with no symptoms should get tested for cancer based on a clearly written pamphlet

Intermediate: Determine what time to take Rx medicine based on label

Proficient: Calculate employee share of health insurance costs using table

National Center for Educational Statistics, U.S. Department of Education, 2003

National Health Literacy National Health Literacy AssessmentAssessment

Basic

Below Basic

Proficient

14%

12%

53%

22%

National Assessment of Adult Literacy (NAAL): National Center for Educational Statistics, U.S. Department of Education, 2003.

Intermediate

AverageMedicare

Hispanic

n=19,714 U.S. Adults

Literacy and health

In elderly population, limited literacy associated with » worse self-rated access to care, » lower self-rated health» higher rates of some chronic diseases, » Later presentation with cancer» higher adjusted mortality

In public hospital patients with diabetes, limited literacy associated with poor glycemic control/complications

Sudore, Schillinger 2006 JGIMSchillinger et al. 2002 JAMA

Limited literacy

Adequate literacy

P-value

Hypertension 62.7% 54.7% <.0001

Diabetes 25.2% 14.6% <.0001

Obesity 31.1% 23.0% <.0001

Heart Disease 21.5% 20.5% 0.6

Self-reported chronic conditions among an elderly cohort,

by literacy* (N=2, 512)

Sudore, Schillinger JGIM 2006

Patients with Diabetes and Low Literacy Less Likely to Know Correct Management

0 20 40 60 80 100

Percent

Need to Know: symptoms of low blood sugar (hypoglycemia)

Need to Do:

correct action for hypoglycemic symptoms

*Williams et al., Archive of Internal Medicine, 1998

Low

ModerateHigh

LowModerate

High

Williams 1998

0

10

20

30

40

50

1st Quartile 4th Quartile

% o

f p

ati

en

ts

Inadequate

Marginal

Adequate

Literacy is Associated with Glycemic Control, N=408

(Tight Control: HbA1c7.2%) (Poor Control: HbA1c>9.5%)

Adjusted OR=0.57, p=0.05

Adjusted OR=2.03, p=0.02

Schillinger JAMA 2002

Complication n** AOR 95% CI

Retinopathy 111 2.33 (1.19-4.57)

Nephropathy 62 1.71 (0.75-3.90)

Lower Extremity Amputation 27 2.48 (0.74-8.34)

Cerebrovascular Disease 46 2.71 (1.06-6.97)

Ischemic Heart Disease 93 1.73 (0.83-3.60)

Adjusted odds of self-reported diabetes complications, for patients with inadequate vs. adequate literacy (N=408)

Schillinger JAMA 2002

Limited Health Literacy Patients Experience more Hypoglycemia

N=16,000

0%

2%

4%

6%

8%

10%

12%

14%

16%

Problemslearning

Help reading Notconfident

with forms

Adequate

Limited

P for all<0.001

Sarkar, Adler, Schillinger, in review

Limited literacy associated with higher adjusted mortality (OR 2.03, AOR 1.75)

How is Literacy Linked to Diabetes Outcomes? 4

hypotheses

1. ConfoundingLimited literacy confounders illness

2. Mediation at individual or community level Limited literacy health mediators (behavior and exposure) illness

3. Reverse Causation/cyclicalIllnesslimited literacyworse health trajectory

4. Effect Modification at Health Care System LevelLimited literacy poor quality of care illness and premature death/morbidity

Schillinger IOM 2004

Could poor communication be a mechanism?

High self-management demands Increasing reliance on technology Large mismatch in training between health

professionals and target populations (“health literacy”)

Counterbalance role of mass media in consumerist society

Strong inverse relationship between educational attainment and chronic illness burden

Conceptual framework: 4 basic functions of communication in diabetes care

Communication Characteristics

1. Disease state Health outcomes

Treatment adherence

Clinical decision-making

4. Treatment plan

3.Diagnosis

2. Barriers

•Physician-patientconcordance

elicitation

explanation

Schillinger, AJ Bioethics 2007

Trust / therapeutic alliance

How Does Limited Literacy Affect (Verbal) Clinical Interactions?

Impedes understanding of technical information and explanations of self-care

Impairs shared decision-making Speed of dialogue, extent of jargon, lack of interactivity

determinants of effectiveness of communication Impairs medication communication, jeopardizing patient

safety (medication “discordance”) Interaction between limited Eng proficiency and limited

literacyFang et al. 2006 JGIMSchillinger et al. 2004 Pt Ed and CounselingCastro et al, Am J Health Beh 2007Schillinger et al. 2003 Arch Int MedSchillinger et al 2004. AHRQ Advances in Patient Safety

Diabetes Patients with Limited Literacy Experience Poorer Quality Communication,

N=408

0

10

20

30

40

50

%

Doctor Use Words Not Understood

Give You Test Resultsw/o Explanation

Confused AboutMedical Care

Doctor UnderstandProblems Doing Rx

Inadequate FHL

Adequate FHL

(Often/Always) (Often/Always) (Often/Always) (Never/Rarely/ Sometimes)

OR=3.2;p<0.01OR=3.3;p=0.02

OR=2.4;p=0.02

OR=1.9;p=0.04

32%

13% 13% 13%

26%21%

33%

20%

Schillinger 2004

Medical Jargon

GLUCOMETER

HEMOGLOBIN A1c

DIALYSIS

ANGINA

RISK FACTORS

CREATININE

Jargon Terms …unclarified Glucometer Glucometer ImmunizationsImmunizations Weight is stableWeight is stable Microvascular complication System of nervesSystem of nerves HbA1cHbA1c EKG abnormalitiesEKG abnormalities DialysisDialysis Wide Range Risk factorsRisk factors Kidney function Interact

…clarified Angina Microalbuminuria Ophthalmology Genetic Creatinine Symptoms

…from Patient’s own visit:• benign• blood drawn• blood count

• CAT scan• blood count• correlate• stool was negative• stool• baseline• respiratory tract• polyp

•washed out of your system•receptors•short course•renal clinic•blood cells•increase your R•screening•vaccine

Provide Health Education

29%

Deliver Test Results24%

Provide Recommendations

37%

Assess Symptoms10%

n = 60

Function of Jargon

Castro, Schillinger AJHB 2007

jpm=0.4

Would you please tell me in your own words what dialysis means?

In your own words, what do you think the doctor was trying to tell the patient?

“Check something every day.” 1 “Sugar is too high.” 1

“What? Is that about you toes?” 1 “I can't say it.” 1

“It means that your diabetes is going worse that you have to exercise to make diabetes.”

1“Means that more people are getting diabetes.”

1

“You got to get on machine to pump.. redo blood to come up to par.”

4 “That the sugar was not…hmm.” 1

“…regarding kidney.” 2 “Diabetes is one cause of kidney problems.” 3

“That is a warning…about the kidney…my doctor told me about those side effects of the diabetes.”

3

“About dialysis, because they are warning us, they are telling me about the complications…that if I'm having problems in my kidney, I'm going to have dialysis.”

4

“It’s a way to clean blood get off toxins out the blood.”

4“That you need to be on dialysis to cleanse blood or gonna die.”

4

Dialysis Dialysis “Do you know what the number one cause for people in this country being on dialysis is? Diabetes”

0

5

10

15

20

25

30

35

40

Self- Report / No Con Investigator- assessed / No Con Self- Report / Con Investigator- assessed / Con

Unclarified / Own Visit

Unclarified JargonClarified Jargon

Patient Comprehension of Jargon (% Some /Total Understanding)

Literacy and the Digital Divide in Diabetes*N= 14,102

Sarkar, Karter, Schillinger J Health Comm 2010

*For difference between those with and without limited health literacy, p for all<0.01

Numeracy and Diabetes: A Special Case?

Among people with diabetes on insulin, better diabetes-related numeracy ---a subset of the larger construct of health literacy--- modestly associated with better HbA1c

The Diabetes Literacy and Numeracy Education Toolkit (DLNET) of Vanderbilt University: » materials to facilitate diabetes education and management

in patients with low literacy and numeracy

Cavanaugh. Ann Int Med 2008Osborn CY Diab Care 2009 Wolff K. Diab Ed 2009

Ensures info understood/integrated into memory;checks for lapses Opens dialogue re health beliefs; reinforces and tailors health

messages Promotes a common understanding; elicits patient participation

Closing the Loop: Interactive Communication

to Enhance Recall & Comprehension

Re-AssessPatient Recall &Comprehension

Adherence

New Concept:Health Information,

Advice, or Change in Management

Provider Explains New Concept

Patient Recalls and Comprehends

AssessPatient Recall & Comprehension

Clarify & Tailor Explanation

Closing the Loop, aka “Teach-Back”

Physicians assessed recall or comprehension for 15/124 new concepts (12%)

When new concepts included patient assessment, patient provided incorrect response half the time (7/15=47%)

Visits using interactive communication loop not longer (20.3 min. vs. 22.1 min)

Application of loop associated with better HbA1c (AOR 9.0, p=.02)

Schillinger Arch Int Med 2003

“I’m sorry, but I can’t carry on an intelligent conversation. I’m visual.”

Provider-Patient Concordance in Medication Regimen

Patients with atrial fibrillation at high risk of stroke Treatment with warfarin (blood-thinner) reduces

risk of stroke by 70% Requires close monitoring and frequent dose

adjustments Miscommunication/ inappropriate dosing can lead

to poor outcomes (stroke or bleeding)

Anticoagulant regimen concordance lower for patients with inadequate vs adequate literacy (42 % vs 64 %),

Anticoagulant discordance associated with being out of therapeutic range:» under-anticoagulation» over-anticoagulation

Literacy, Discordance and Safety

Schillinger J Health Comm 2006

Computerized Visual Medication Schedule

Machtinger, Schillinger 2007 J Comm J Qual Safety

Overall Results:Time To Therapeutic Range (N=142)

A Diabetes Guide That Helps Patients A Diabetes Guide That Helps Patients

Take Charge and Make ChangesTake Charge and Make Changes

Terry Davis, PhD

LSUHSC

Darren DeWalt, MD

UNC

Dean Schillinger, MD

Hilary Seligman, MD

UCSF

____________

© American College of Physicians Foundation

ACPF Guide is Practical and PersonalACPF Guide is Practical and Personal

• Patients’ voices illustrate concrete, practical tips

• Patients suggest achievable goals

• Authentic photos help tell the story

Focus is on Focus is on DoingDoing• ‘You Can Do It’ checklist at end of each chapter

• Concrete examples of successful action plans

• Emphasis on small steps and patient choice

Pictures Help Tell the StoryPictures Help Tell the Story Patients looked at pictures first Particularly liked pictures of food comparisons

Too much Right size

Significant ImprovementIn Pre- and Post-tests*

Knowledge

Self-efficacy

Diabetes distress

Taking ownership of health care

Self-reported diabetes management

*p<0.01 Dewalt, Schillinger et al 2008

Should We Screen for Limited HL?

RCT of screening and feedback of limited HL to primary care physicians

Individual Management Strategies

0 25 50 75 100

Family Members

Nutritionist

Pictures/Diagrams

DM Educator

Review meds

Teaching

InterventionControl

p=.04*

p=.05*

p=.07

% of visitsSeligman, Schillinger JGIM, 2005.

Physician Responses to HL Screening

0

25

50

75

100

Management-Intensive

Satisfied withVisit

Self-RatedEffectiveness

Intervention

Control

p=.01

p<.001

p=.10

% o

f vi

sits

What Do Physicians Say They Need?

0% 20% 40% 60% 80% 100%

Diabetes Class

Medication Adherence ToolsCommunication Training for Patients

More Appropriate Educational Materials

Increased Access to Allied Health Professionals

Improved Labeling of Pill Bottles

yes no n/r

IDEALL Project:

Improving Diabetes Efforts Across Language and Literacy

• Community Health Network of SF/DPH

• AHRQ• CMWF, TCE, CHCF

Schillinger Diab Care 2009

Automated Telephone Diabetes Self-Management Support (ATSM)

Interactive health technology, touch tone response Weekly surveillance & health education (39 weeks=9 mos) In patients’ preferred language (English, Spanish or Cantonese) Generates weekly reports of out of range responses Live phone follow-up through a bilingual nurse ->behavioral action

plans

Nurse Diabetes Care manager

Primary Care Physician

ATSM: Weekly Monitoring and

Health Education

Patient

Group Medical Visits (GMVs)

6-10 patients in monthly group meetings (9 months) In patients preferred language ( English, Spanish, or Cantonese) Facilitated by a bilingual health educator and a primary care provider A pharmacist present at end of each group visit Encourage patients to become active in self-care through participatory

learning and peer education ->behavioral action plans

Primary Care Provider Health EducatorPharmacist

Cantonese-Speaking Groups

English-Speaking Groups

Spanish-Speaking Groups

Monthly Group Medical Visits

Key Findings of IDEALL Program , N=339Estimating Public Health “Reach” of

Programs

Composite reach product

ATSM GMV Overall 22.1 4.8

English 20.0 6.4 Chinese 22.0 2.7 Spanish 24.3 4.0

Adequate Literacy 15.6 7.6 Limited Literacy 28.0 3.6

Schillinger, et al.Health Ed and Behavior 2007

Results, N=339 :Structure and Process

Measures

4136.8 39.3

48.2

58.9 60.2

20

30

40

50

60

70

UC ATSM GMV

PACIC

* *

62.959.2

63.465.4

72.968.9

50

55

60

65

70

75

UC ATSM GMV

Communication

* ≠

73.571.7

73.371.7

77.2 77.2

60

65

70

75

80

UC ATSM GMV

Self-Efficacy

* *

3.93.7

3.9

4.44.1

3.8

3

4

5

UC ATSM GMV

Self-Management Behavior

**

≠

pre

post

*P<.05.

Schillinger, Diab Care 2009

Results: Functional Outcomes

58.857.2

61.764.2

67

63

50

55

60

65

70

UC ATSM GMV

SF12 - Mental Health

≠

13 14

18

6

1717

0

5

10

15

20

UC ATSM GMV

Diabetes Interference

*

pre

post

50 51.3 50.9

56.760.2

57.1

45

50

55

60

65

UC ATSM GMV

SF12 - Physical Health

3.9 3.8 3.63.1

1.4

3.6

012345

UC ATSM GMV

Bed Days

*≠

*P<.05

Rate ratio 0.5 vs UC, 0.35 vs GMVOR 0.37 vs UC

Clinician Survey, N= 87 physicians

–Compared to UC, ATSM patients ATSM more likely to be activated to create and achieve goals for chronic care (standardized effect size, ATSM vs. UC, +0.41, p=0.05).

–Over half of physicians reported that ATSM helped overcome 4 of 5 common barriers to diabetes care

–Rated quality of care as higher in ATSM compared to usual care (OR 3.6, p=0.003), and GMV (OR 2.2, p=0.06)

–Majority (88%) felt ATSM should be expanded to more patients with diabetes and other conditions

Bhandari, Handley Schillinger SGIM 2008

Health Literacy &Self-Management: Conclusions

Mechanisms by which limited health literacy affect health outcomes likely multiple

Inadequate self-management skills may be one mediator Communication characteristics of health care system

contribute to impaired self-management Re-structuring health care system (increasing

interactivity, employing appropriate technology) can improve reach and effectiveness of health care, enhance quality, promote safety

Health Literacy Universal Precautions Toolkit has great resources: http://www.nchealthliteracy.org/toolkit/

END OF TALK

Designing Easy-to-Read Materials

>Use large font written at 5th grade level>Pictures that help explain text>Clear headings and layout>PRIORITIZE the info—Does it REALLY need to be included?>Use suitability assessment>Involve the target populations from the beginning!>Focus on ‘Need to Know’; ‘Need to Do’ Health Literacy Universal Precautions Toolkit (Tool 11 and 12)

has great resources:http://www.nchealthliteracy.org/toolkit/

Recommendations re Verbal Interactions

Select no more than 3 key points Avoid Jargon/Use “living room language” Use Teach – Back Method Always reconcile medications Health Literacy Universal Precautions Toolkit

(esp Tool 11) has great resources:

http://www.nchealthliteracy.org/toolkit/

Recommendations re Numerical Discussions

Relatively understudied Present risk in terms of an easily understandable timeframe (e.g.

10 years) Provide absolute risks, not relative risks (e.g. 2 out of 100 vs. 4

out of 100, not ‘a 50% reduction’) Present risk frequencies (5 out of 100), not percentages. Use both + and – framing: “Over 10 years, 30 out of 100 will get

diabetes, but 70 out of 100 won’t.” Consider Diabetes Numeracy Toolkit/Diabetes Numeracy test

Special considerations

Taking a holistic view on health literacy and health communication for the elderly

Factors that Affect the Health Literacy of Elders

US. Department of Health and Human Services, 2007

Number of

medications

Chronic Disease

Burden

Caregiver

Burden

Hearing

Impairment Visual

Impairment

Cognitive

Impairment

Health

Literacy