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 l Review statistics and definitions re literacy and 'health literacy' in US, especially public healthcare systems l Describe research that shows associations b/w health literacy and health outcomes, with diabetes self- management as exemplar l 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 iolence U ninsured L iteracy and Language N eglect E conomic hardship/food insecurity R ace/ethnic discordance, discrimination A ddiction B rain disorders, e.g. depression, dementia, personality disorder I mmigrant L egal status I solation/Informal caregiving burden T ransportation problems I llness Model E yes and Ears S helter Schillinger 2007

What is Health Literacy? l “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 l ?3 domains: oral (speaking, listening); written (reading, writing); numerical (quantitative). l Capacity/Preparedness  Demand Mismatch

1 st National Assessment of Health Literacy 1 st National Assessment of Health Literacy n=19,714 l Below Basic: Circle date on doctor’s appointment slip l Basic: Give 2 reasons a person with no symptoms should get tested for cancer based on a clearly written pamphlet l Intermediate: Determine what time to take Rx medicine based on label l Proficient: Calculate employee share of health insurance costs using table National Center for Educational Statistics, U.S. Department of Education, 2003

National Health Literacy Assessment Basic Below Basic Proficient 14% 12% 53% 22% National Assessment of Adult Literacy (NAAL): National Center for Educational Statistics, U.S. Department of Education, Intermediate Average Medicare Hispanic n=19,714 U.S. Adults

Literacy and health l 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 l In public hospital patients with diabetes, limited literacy associated with poor glycemic control/complications Sudore, Schillinger 2006 JGIM Schillinger et al JAMA

Limited literacy Adequate literacy P-value Hypertension62.7%54.7%<.0001 Diabetes25.2%14.6%<.0001 Obesity31.1%23.0%<.0001 Heart Disease21.5%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 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 Moderate High Low Moderate High Williams 1998

Literacy is Associated with Glycemic Control, N=408 (Tight Control: HbA1c  7.2%) (Poor Control: HbA1c>9.5%) Adjusted OR=0.57, p=0.05 Adjusted OR=2.03, p=0.02 Schillinger JAMA 2002

Complicationn ** AOR95% CI Retinopathy ( ) Nephropathy621.71( ) Lower Extremity Amputation272.48( ) Cerebrovascular Disease462.71( ) Ischemic Heart Disease931.73( ) 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 P for all<0.001 Sarkar, Adler, Schillinger, in review

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

How is Literacy Linked to Diabetes Outcomes? 4 hypotheses 1. Confounding Limited literacy  confounders  illness 2. Mediation at individual or community level Limited literacy  health mediators (behavior and exposure)  illness 3. Reverse Causation/cyclical Illness  limited literacy  worse health trajectory 4. Effect Modification at Health Care System Level Limited literacy  poor quality of care  illness and premature death/morbidity Schillinger IOM 2004

Could poor communication be a mechanism? l High self-management demands l Increasing reliance on technology l Large mismatch in training between health professionals and target populations (“health literacy”) l Counterbalance role of mass media in consumerist society l 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-patient concordance elicitation explanation Schillinger, AJ Bioethics 2007 Trust / therapeutic alliance

How Does Limited Literacy Affect (Verbal) Clinical Interactions? l Impedes understanding of technical information and explanations of self-care l Impairs shared decision-making l Speed of dialogue, extent of jargon, lack of interactivity determinants of effectiveness of communication l Impairs medication communication, jeopardizing patient safety (medication “discordance”) l Interaction between limited Eng proficiency and limited literacy Fang et al JGIM Schillinger et al Pt Ed and Counseling Castro et al, Am J Health Beh 2007 Schillinger et al Arch Int Med Schillinger et al AHRQ Advances in Patient Safety

Diabetes Patients with Limited Literacy Experience Poorer Quality Communication, N=408 (Often/Always) (Never/Rarely/ Sometimes) OR=3.2;p<0.01 OR=3.3;p=0.02 OR=2.4;p=0.02 OR=1.9;p= % 13% 26% 21% 33% 20% Schillinger 2004

Medical Jargon GLUCOMETER HEMOGLOBIN A1c DIALYSIS ANGINA RISK FACTORS CREATININE

Jargon Terms …unclarified l Glucometer l Immunizations l Weight is stable l Microvascular complication l System of nerves l HbA1c l EKG abnormalities l Dialysis l Wide Range l Risk factors l Kidney function l Interact …clarified l Angina l Microalbuminuria l Ophthalmology l Genetic l Creatinine l 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 Results 24% Provide Recommendations 37% Assess Symptoms 10% 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”

Unclarified / Own Visit Unclarified Jargon Clarified 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? l Among people with diabetes on insulin, better diabetes-related numeracy ---a subset of the larger construct of health literacy--- modestly associated with better HbA1c l 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 2008 Osborn CY Diab Care 2009 Wolff K. Diab Ed 2009

l Ensures info understood/integrated into memory;checks for lapses l Opens dialogue re health beliefs; reinforces and tailors health messages l Promotes a common understanding; elicits patient participation

Closing the Loop, aka “Teach-Back” l Physicians assessed recall or comprehension for 15/124 new concepts (12%) l When new concepts included patient assessment, patient provided incorrect response half the time (7/15=47%) l Visits using interactive communication loop not longer (20.3 min. vs min) l 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 l Patients with atrial fibrillation at high risk of stroke l Treatment with warfarin (blood-thinner) reduces risk of stroke by 70% l Requires close monitoring and frequent dose adjustments l Miscommunication/ inappropriate dosing can lead to poor outcomes (stroke or bleeding)

l Anticoagulant regimen concordance lower for patients with inadequate vs adequate literacy (42 % vs 64 %), l 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 Take 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 Personal Patients’ voices illustrate concrete, practical tips Patients suggest achievable goals Authentic photos help tell the story

Focus is on Doing ‘ 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 Story l Patients looked at pictures first l Particularly liked pictures of food comparisons Too muchRight size

Significant Improvement In Pre- and Post-tests* l Knowledge l Self-efficacy l Diabetes distress l Taking ownership of health care l Self-reported diabetes management * p<0.01 Dewalt, Schillinger et al 2008

Should We Screen for Limited HL? l RCT of screening and feedback of limited HL to primary care physicians

Individual Management Strategies p=.04* p=.05* p=.07 % of visits Seligman, Schillinger JGIM, 2005.

Physician Responses to HL Screening % of visits

What Do Physicians Say They Need? Diabetes Class Medication Adherence Tools Communication Training for Patients More Appropriate Educational Materials Increased Access to Allied Health Professionals Improved Labeling of Pill Bottles yesnon/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 Educator Pharmacist Cantonese- Speaking Groups English- Speaking Groups Spanish- Speaking Groups Monthly Group Medical Visits

Key Findings of IDEALL Program, N=339 Estimating Public Health “ Reach ” of Programs Composite reach product ATSM GMV  Overall  English  Chinese  Spanish  Adequate Literacy  Limited Literacy Schillinger, et al.Health Ed and Behavior 2007

Results, N=339 : Structure and Process Measures pre post *P<.05. Schillinger, Diab Care 2009

Results: Functional Outcomes pre post *P<.05 Rate ratio 0.5 vs UC, 0.35 vs GMV OR 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 l Mechanisms by which limited health literacy affect health outcomes likely multiple l Inadequate self-management skills may be one mediator l Communication characteristics of health care system contribute to impaired self-management l Re-structuring health care system (increasing interactivity, employing appropriate technology) can improve reach and effectiveness of health care, enhance quality, promote safety l Health Literacy Universal Precautions Toolkit has great resources:

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Designing Easy-to-Read Materials >Use large font written at 5 th 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’ l Health Literacy Universal Precautions Toolkit (Tool 11 and 12) has great resources:

Recommendations re Verbal Interactions l Select no more than 3 key points l Avoid Jargon/Use “living room language” l Use Teach – Back Method l Always reconcile medications l Health Literacy Universal Precautions Toolkit (esp Tool 11) has great resources:

Recommendations re Numerical Discussions l Relatively understudied l Present risk in terms of an easily understandable timeframe (e.g. 10 years) l Provide absolute risks, not relative risks (e.g. 2 out of 100 vs. 4 out of 100, not ‘a 50% reduction’) l Present risk frequencies (5 out of 100), not percentages. l Use both + and – framing: “Over 10 years, 30 out of 100 will get diabetes, but 70 out of 100 won’t.” l Consider Diabetes Numeracy Toolkit/Diabetes Numeracy test

Special considerations l 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