Health Literacy Is Fundamental To Diabetes Education & Counseling

1. Health Literacy Is Fundamental To Diabetes Education & Counseling Terry Davis, PhDProfessor of Medicine & PediatricsLSUHSC-SCollaborative Diabetes Education ConferenceJanuary 30, 2009

2. What’s The Problem? Patients’ Education, Literacy, Language Unnecessarily Complex Health Information

3. California drop out rate 30% Problems Are Not Going Away

4. Low Literacy Rates By County % Adults with Level 1 Literacy Skills 24% California Adults are Level 1 National Institute for Literacy 1998

5. “Public health emphasis is on getting information ‘out’ to people not whether it has been understood and used.” “Health care professionals do not recognize that patients do not understand the health information we are trying to communicate.” Dr. Richard Carmona, U.S. Surgeon General Mentioned health literacy in 200 of last 260 speeches

6. Health Education Needs To Be Improved • 90 million adults have trouble understanding and acting on health information ● Health information is unnecessarily complex Patient Education is often NOT: • Easy to read, understand, act on • Organized from patients’ perspective • Focused on behavior as well as knowledge

7. What is it Like? • These instructions simulates what a reader with low literacy sees on the printed page • Read instructions out loud. • You have 1 minute to read. • Hint: The words are written backwards and the first word is “cleaning”

8. GNINAELC – Ot erussa hgih ecnamrofrep, yllacidoirep naelc eht epat sdaeh dna natspac revenehw uoy eciton na noitalumucca fo tsud dna nworb-der edixo selcitrap. Esu a nottoc baws denetsiom htiw lyporposi lohocla. Eb erus on lohocla sehcuot eht rebbur strap, sa ti sdnet ot yrd dna yllautneve kcarc eht rebbur. Esu a pmad tholc ro egnops ot naelc eht tenibac. A dlim paos, ekil gnihsawhsid tnegreted, lliw pleh evomer esaerg ro lio.

9. Cleaning – to assure high performance, periodically clean the tape heads and capstan whenever you notice an accumulation of dust and brown-red oxide particles. Use a cotton swab moistened with isopropyl alcohol. Be sure no alcohol touches the rubber parts as it tends to dry and eventually crack the rubber. Use a damp cloth or sponge to clean the cabnet. A mild soap like dishwasher detergent will help remove grease or oil.

10. Low Literate Diabetic Patients Less Likely to Know Correct Management* Need to Know: symptoms of low blood sugar Need to Do: correct action for symptoms of low blood sugar Low Moderate High Low Moderate High Percent *Williams et al., Archive of Internal Medicine, 1998

11. Video • It’s hard to be a patient Health Literacy: An individuals ability to obtain, process and understand health information and services and make appropriate health care decisions and access and navigate the health care system.

12. 1st Health Literacy Assessment n=19,000 U.S. Adults 12% Proficient 13% Below Basic 53% Intermediate Hispanic Basic 22% Average National Assessment of Adult Literacy (NAAL): National Center for Educational Statistics, U.S. Department of Education, 2003. Medicare

13. Health Literacy Tasks • 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 *67% probability individual can perform task

14. Medication Error Most Common Medical Mistake Patient error (>500,000 adverse events, $1 Billion) 3 billion Rx written/year Elderly fill 27 Rx/year, see 8 physicians Pharmacists/physicians not adequately counseling Most labels and inserts are in English only. IOM 2006 Report: Poor patient comprehension and subsequent unintentional misuse is a root cause of medication error and worse health outcomes

15. Changing Times: Healthcare is Increasingly Complex Today’s patients need higher literacy

16. Video It’s easy to make a mistake.

17. “How would you take this medicine?” 395 primary care patients in 3 states • 46% did not understand instructions ≥ 1 labels • 38% with adequate literacy missed at least 1 label (Ann Intern Med. 19 Dec, 2006, Davis, Wolf, Bass, Parker)

18. John Smith Dr. Red Take two tablets by mouth twice daily. Humibid LA 600MG 1 refill “Show Me How Many Pills You Would Take in 1 Day” 71 35

19. Is Health Information Unnecessarily Complex? Patient Education is often NOT: Easy to read, understand, use Organized from patient’s perspective Focused on behavior as well as knowledge *IOM Report: A Prescription to End Confusion, 2004

20. Hidden Problems: Pamphlets and Videos Organized using medical model not patient-centered model (focus on need to know and do) Scientific rather than personal tone (“talking heads”) Often too long, written on too high a level Illustrations complex, confusing or “do not look like me” Lack of attention to ‘tone,’ patient emotions Lack of patient and provider input Who will give to patient, when? Teachable moment

21. Developing User-Friendly Materials • Is not rocket science • But harder and more tedious than it seems

22. Avoid a Common Mistake Most materials not organized from patients’ perspective: • Medical model • Description of problem • Statistics on incidence and prevalence (tables) • Treatment forms and efficacy • It is more helpful to use: • Newspaper model • Gives most important information first • Social Cognitive Model • Moves beyond knowledge to short term behavioral goals • Attends to motivation, self-efficacy, problem solving Doak, 1996; Seligman, 2007

23. Creating User Friendly Patient Education Materials • Check reading level (tools, spelling, options, readability) • Aim for <8th grade • Ask following 5 questions

24. Is The Layout User-Friendly?

25. Do Illustrations Convey The Message?

26. Is the Message Clear?

27. Is The Information Manageable?

28. Does Reader See This Is“Meant for Me”?

29. Self-Management Education Is NeededPriority Area For National ActionCurrent health care system is not doing the job* • Over 126 million Americans suffer from one or more chronic illnesses (healthcare costs > $1 trillion/year) • 90 million adults have trouble understanding and acting on health information • Majority of patients do not receive appropriate education or care • Patient safety may be compromised • Patients need support for self-management and systematic follow-up‡ *IOM; ‡Wagner, Chronic Disease Model 1998; Sarkar, 2008

30. Effective Self-Management Education • Must go beyond knowledge and focus on helping patient change behavior • Stress benefits and motivation for behavior change • Incorporate goal setting (best if goals are small, short term, easily achievable baby steps) • Assesses patient confidence • Offer support and follow-up Lorig 2003, 2006; Seligman, 2007; Bodenheimer, 2007

31. Improving Chronic Disease EducationLessons Learned • Develop with patients and providers (to help insure usefulness, clarity and comprehension) • Focus on “need to know & do” vs. “nice to know” • Emphasize benefits • Give to patients in a teachable moment • Accompany with brief counseling, support and follow-up Seligman, 2007

32. Purpose of the ACPF Project To develop novel strategies to support diabetes self-management among patients with limited health literacy. • Focus on: • Patient not disease • English and Spanish • Being user-friendly for • patients and staff

33. Why Focus On Diabetes? Diabetes is prevalent • 23 million Americans have diabetes • 1.6 million new adult cases each year • 7th leading cause of death in U. S. Substantial self-management is required • Many patients have difficulty carrying out recommended care • Knowledge alone does not improve outcomes

34. Project Team • National team of diabetes, health literacy and communication experts • Reviewed existing diabetes patient education materials • Conducted focus groups in 5 states in public and private sector • Over 100 patients • Over 100 providers (physicians, D.E. nurses, pharmacists, and dieticians)

35. Writing The Diabetes Guide • 800 photographs convey messages • >70 interviews with patients • Spanish version with culturally-appropriate photos “El desayuno le ayuda a su cuerpo a sentirse satisfecho y le da energía. También le ayuda a controlar su diabetes.”

36. Lessons Learned From Patients 18 focus groups • Want information focused on how to manage & not why • Want practical strategies for hunger, eating out, exercise • Patients rarely called doctor’s office for help - may not know the questions to ask • Patients wanted support • Patients often know more than they do – have difficulty with problem solving * Seligman, et al. Am J Health Behav 2007; 31 (Suppl 1): S69-S78

37. Lessons Learned: Physicians 9 focus groups Want to inform patients on: • severity of diabetes • associated health risks • meaning of A1c tests • importance of checking blood sugar regularly Patients and providers want different information - Important to consider needs of both. * Seligman, et al. Am J Health Behav 2007; 31 (Suppl 1): S69-S78

38. Lessons Learned: DM Educators 5 focus groups • Care is often not coordinated between DM educators & physician • Insurance may not pay for diabetes education • Patient materials often not concise

39. Hidden Problems • Physicians want to teach patients – but • Feel they lack time (reimbursement) • May give information that is not useful • May overwhelm patients with too much information or give too little • Young physicians often use scare tactics; older physicians may be fatalistic • Fear is not effective long term * Seligman, et al. Am J Health Behav 2007; 31 (Suppl 1): S69-S78

40. The Guide is Focused on Doing! • Eating* • Exercise* • Monitoring blood sugar • Keeping track of meds • Insulin * Most important to patients

41. Pictures Help Tell The Story Too much Right size

42. Photographs Speak to Patients Standard Guide Our Guide

43. Photographs are Preferred to Clip Art Standard Guide ACPF Guide

44. Guide Is Patient-Centered • Warm, conversational tone • People real, healthy looking • Example: • “Having diabetes is life-changing.” • “People with diabetes say they sometimes feel overwhelmed. Some people feel alone. You are not alone. Millions of people have diabetes.”

45. Tone Is Important Because food intake affects the body's need for insulin and insulin's ability to lower blood sugar, diet is the cornerstone of diabetes treatment. - FDA Diabetes Guide (12th grade level) Eating right is the most important way to control your blood sugar. Your blood sugar is affected by what you eat, when you eat, and how much you eat. - ACP-F Guide (5th grade level)

46. Our Guide is Practical and Personal • Patients’ voices illustrate concrete, practical tips • Patients suggest achievable goals • Real photos of people with diabetes help tell the story

47. 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

48. Evaluation Study225 patients, 3 sites, English and Spanish(76% minority; DM 9yrs; BMI 36; A1C 8.6) • Introduce the guide Ask : Is there anything you would like to do this week to improve your health? • Brief counseling bynon-medical staff to help patient set Action Plan • Follow-up call at 2 weeks and 4 weeks, visit at 12-16 weeks Wallace, Seligman, Davis, Schillinger, Arnold, DeWalt, et al. In press DeWalt, Davis, Schillinger, Seligman, Arnold, et al. In press.

49. What is an Action Plan? • Very specific, easy-to-achieve, short-term activity a patient choosesto do to reach a long-term goal • Long-term goal: lose weight • Action plan: I will walk around the block before I sit down to watch TV after dinner 3 times during the next 7 days. * Lorig, J Am B Fam Med, 2006.

50. Action Plans Can Be Powerful Created by the patient(Physician only acts as facilitator). Magic of a “Baby Step” It doesn’t matter what the step is Personally relevant and immediate Engages patient in self-care Increases self-efficacy Teaches problem-solving