Health Literacy: A Critical Success Factor for Quality Health Care. Laura Noonan, MD. March 17, 2014

Transcription

1 Health Literacy: A Critical Success Factor for Quality Health Care Laura Noonan, MD Pediatric Specialty Care Division Director, Center for Advancing Pediatric Excellence Carolinas HealthCare System s Levine Children s Hospital March 17, 2014 Southeast Region Hemophilia Network 2014 Technical Assistance and Training Meeting

2 Session Objectives What is Health Literacy? Relationship between Health Literacy and Health Outcomes Strategies that Work: The AHRQ Universal Precautions Health Literacy Toolkit

3 Patient Engagement "actions individuals must take to obtain the greatest benefit from the health care services available to them Center for Advancing Health, 2010

4 Health Literacy The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Healthy People 2010 Other definitions include the ability to access and navigate the healthcare system

5 Mismatched Communication Provider Process: Giving information Patient Process: Understanding, remembering, and acting on information

6 How well do we read and write?

7 National Assessment of Adult Literacy (NAAL) Most up to date portrait of literacy in U.S. (n = 19,714) Scored on 4 levels Lowest 2 levels cannot: Use a bus schedule Explain the difference in 2 types of employee benefits Write a simple letter explaining a billing error According to the 2003 report, 93 million adults have basic or below basic literacy skills. This includes 52% of high school grads 61% of adults over age 65 National Center for Education Statistics, U.S. Dept of Education

8 2003 National Assessment of Adult Literacy Proficient 13% 44% Intermediate Below Basic 14% Basic or Below Basic Basic 52% of H.S. Grads 61% of Adults 65 29% 93 Million Adults have Basic or Below Basic Literacy

9 Not Much Improvement in 10 Years Kutner et al. National Assessment of Adult Literacy. 2005

10 Inadequate Literacy Increases with Age Marginal Inadequate >=85 Slide by Terry Davis, PhD

11

12 Health Literacy Health care professionals do not recognize that patients do not understand the health information we are trying to communicate. We must close the gap between what health care professionals know and what the rest of America understands. Dr. Richard Carmona, Former U.S. Surgeon General mentioned health literacy in 200 of 260 speeches

13 Health Literacy In a medical situation, anyone can have difficulty: Unfamiliar subject matter and vocabulary Patients are often stressed or anxious, reducing ability to understand

14 Expectations of Patients Are Increasing Prevention (eating, exercise, sunscreen, dental) Immunization Self Assessment of Health Status Peak flow meter Glucose testing Self-treatment Insulin adjustments Health Care Use When to go to clinic / ER Referrals and follow-up Insurance / Medicare

15 And the Process is Becoming More Complex Checkout Schedule f/u, referrals, insurance, billing Pre-visit Scheduling the appointment Pre-visit Visit reason, obtain records, directions Checkout New tests, samples, instructions Patient s continuum of confusion In office, PP Registration, new forms, insurance See Educator Pamphlets, charts, videos In office, PP Problem, health status, history Health Literacy and Patient Safety: AMA Foundation, 2007 With Provider Adjust/Add med, new Tests or referrals See Provider Med list, sources of care PP Prior to seeing physician ED Emergency Department F/U Follow up HCP Health care professional

16 Video It s hard to be a patient

17

18 Relationship Between Literacy and Health Outcomes Failure to clearly communicate medical care information leads to serious patient safety issues such as: readmissions overdose missed doses improper usage

19 Health Literacy Only 50% of all patients take their medications as directed, leading to possible negative health outcomes. Adults with low health literacy average six percent more hospital visits and remain in the hospital nearly two days longer than adults with higher health literacy and have earlier mortality. Annual healthcare costs for those with low literacy skills are four times higher than for those with higher literacy skills.

20 Outcomes Associated with Literacy Health Outcomes/Health Services General health status Hospitalization Prostate cancer stage Depression Asthma Diabetes control HIV control Mammography Pap smear Pneumococcal immunization Influenza immunization STD screening Cost Behaviors Only Substance abuse Breastfeeding Behavioral problems Adherence to medication Smoking Knowledge Only Birth control knowledge Cervical cancer screening Emergency department instructions Asthma knowledge Hypertension knowledge DeWalt, et al. JGIM 2004;19:

21 Literacy and Spanish Language 11 million US residents do not speak English well or at all 8 million of these speak Spanish Test of Functional Health Literacy in Adults at Two Public Hospitals Language Percent Low Literacy (in preferred language) English 35% Spanish 62% Williams et al. JAMA 1995

22 Can Patients Comprehend Rx Drug Warning Labels? Davis et al. JGIM 2006; 21:

23 Simple Familiar Wording Understood by Most Patients 84% (1 st grade)

24 More Complex Message Limited Comprehension 59% (4 th grade)

25 Unfamiliar Multi-step Instructions Rarely Understood 8% (12 th -13 th grade)

26 Comprehension Increased with Patient Literacy Level <6 7-8 >9 79% 86% 88% 35% 66% 78% * 8% 64% 82% * 8% 18% 23% * 0% 6% 15% * * p<.0001, p<.05 In multivariate analysis only literacy and age predicted comprehension. Patients with low literacy (< 6th gd.) 3x more likely to incorrectly interpret warning labels. Davis, et al. JGIM 2006.

27 What does this picture mean? Someone swallowed a nickel Indigestion Bladder Looks like a ghost - Casper

28 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

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

30 Correct (%) Rates of Correct Understanding vs. Demonstration Take Two Tablets by Mouth Twice Daily Understanding Demonstration 20 0 Low Marginal Adequate Patient Literacy Level

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

32 Literacy Level and Glycemic Control Copyright restrictions may apply. Schillinger, D. et al. JAMA 2002;288:

33 Asthma Patients with Low Literacy have Poorer Metered Dose Inhaler (MDI) Skills 4 3 Mean MDI Score rd 4th-6th 7th-8th 9th Williams et al. Chest 1998, 114(4):

34 Literacy and Mortality Health, Aging, and Body Composition Study Sudore et al. JGIM 2006; 21:

35 Video It s easy to make a mistake.

36

37 Patient Rights It is neither just, nor fair, to expect a patient to make appropriate health decisions and safely manage his/her care without first understanding the information needed to do so. Reducing the Risk by Designing a Safer, Shame-Free Health Care Environment. AMA, 2007

38 The Right to Understand Patients have the right to understand healthcare information that is necessary for them to safely care for themselves, and to choose among available alternatives. Healthcare providers have a duty to provide information in simple, clear, and plain language and to check that patients have understood the information before ending the conversation. The 2005 White House Conference on Aging; Mini-Conference on Health Literacy and Health Disparities.

39 Red Flags for Low Literacy Frequently missed appointments Incomplete registration forms Non-compliance with medication Unable to name medications, explain purpose or dosing Identifies pills by looking at them, not reading label Unable to give coherent, sequential history Ask fewer questions Lack of follow-through on tests or referrals

40 Lessons Learned From Patients Tell me what s wrong (briefly) What do I need to DO & why Emphasize benefits (for me) If meds, break it down for me: 1. What it is 2. How to take (concretely) 3. Why (benefit) 4. What to expect Remember: what s clear to you is clear to you!

41 Improve Skills and Reduce Complexity Skills/Ability Demands/Complexity

42 Burden and Capacity Burden of informational complexity placed on patients by health care providers and systems Capacity of patients to understand providers and navigate systems

43 Burden and Capacity Reducing burden Non-interactive Interactive Increasing capacity Directly Indirectly Changing systems of care

44 Create a Shame Free Environment Shame could result from nonadherence, financial barriers, and low literacy. Be aware that patients having difficulty may feel exposed. Reduce anxiety by being open, non-judgmental, and acknowledging that self-care and medication management is difficult. Be aware that someone else may be involved in the patient s daily care. Ask if someone helps the patient with his/her medications. If the patient is willing, include that person in your discussion.

45 Patients only retain about 50% of all instructions The main problem with communication is the assumption that it has occurred. - George Bernard Shaw

46 Talking with Patients & Families Always: Use plain language. Slow down. Break it down into short statements. Be specific and concrete, not general. Focus on 2 to 5 key points. Demonstrate, draw pictures, use models. Repeat or summarize. Check for understanding using Teach Back. Be positive, hopeful, and empowering.

47 Visual Aids and Pictures Improve comprehension Improve recall Improve adherence Pictures needn t be fancy, and should be concrete May be more beneficial for people with low literacy Houts et al. Patient Ed Coun. 61: ; 2006.

48 Visual Aids and Pictures Don t Stand Alone What does this mean? Caution: May make you shaky Caution: May make you glow in the dark Caution: May make you shrink

49 Move from Short-term to Long-term Must help patients move information into long-term memory Associate with what they already know Engage them in the interaction Repeat and reinforce messages Doak, Doak, Root, 1996

50 Open Ended Questions So you re still taking medication x and medication y, right? Alternatives: What are you doing at home? What s your daily routine with your medications? Just so I get it right, what are you taking and how much?

51 Teach Back Method

52 Teach Back Why do I use it? What is it? How do I use it? When do I use it?

53 Teach Back is Asking patients to repeat in their own words what they need to know or do, in a non-shaming way. NOT a test of the patient, but of how well the doctor explained a concept. A chance to check for understanding and, if necessary, re-teach the information.

54 Teach Back Creates an opportunity for dialogue in which the providers gives information, then asks the patient to respond and confirm understanding before adding any new information.

55 Teach Back Using it Well: Elements of Competence Responsibility is on the provider. Use a caring tone of voice & attitude. Use Plain Language. Ask patient to explain using their own words (not yes/no). Use for all important patient education, specific to the condition. Document use of & response to teach-back.

56 Teach Back is Supported by Research Asking that patients recall and restate what they have been told is one of 11 top patient safety practices based on the strength of scientific evidence. AHRQ, 2001 Report, Making Health Care Safer Physicians application of interactive communication to assess recall or comprehension was associated with better glycemic control for diabetic patients. Schillinger, Arch Intern Med/Vol 163, Jan 13, 2003, Closing the Loop

57 Explain Assess Clarify Understanding

58 IHS Ankeny Clinic Physician Experience In the absence of teach-back, the only indicator of misunderstanding may be a medication mistake or patient error, which could be harmful. There were surprising misconceptions of patients understanding of instructions. Nonverbal cues do not seem reliable. Dr. Fred Marsh, 2004

59 Teach Back for Patients with Diabetes Audio taped visits 74 patients, 38 physicians Patients recalled < 50% of new concepts Physicians assessed recall 13% of time When physicians used teach back the patient had 9x the odds of having HbA1c levels below the mean Visits that assessed recall were not longer Schilinger, D. Arch Int Med, 2003 Slide by Terry Davis, PhD

60 Our biggest problem. Does the patient really understand? Do you understand? is one of the most common questions in the patient-care setting Doak, Doak, Root, 1996

61 Ask Me 3 1. What is my main problem? 2. What do I need to do? 3. Why is it important for me to do this? 61

62 Improving Written Health Information Most materials written well above the average literacy of the population Guidelines available for better clear written health information We know better materials can improve knowledge and help start behavior change Readable signage, forms, medication information Improving reading level Reducing density and length of forms Medication labels are difficult to understand Use graphics

63 Developing User-Friendly Materials Is not rocket science But harder and more tedious than it seems Slide by Terry Davis

64 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

65 Information Recommended by General topics Explanation of heart failure Expected symptoms vs. symptoms of worsening heart failure Psychological responses Self-monitoring with daily weights Action plan in case of increased symptoms Prognosis Advanced directives Dietary recommendations Sodium restriction Fluid restriction Guidelines Alcohol restriction Compliance strategies Activity and exercise Work and leisure activities Exercise program Sexual activity Compliance strategies Medications Nature of each drug and dosing and side effects Coping with a complicated regimen Compliance strategies Cost issues Grady et al. Circulation. 2000;102(19):

66 Information We Included Explanation of heart failure Expected symptoms vs. symptoms of worsening heart failure Self-monitoring with daily weights Action plan in case of increased symptoms Sodium restriction Compliance strategies DeWalt et al. Patient Ed Coun. 2004;55(1):78-86.

67 Changing Systems of Care Redesign how care is provided Planned visit Structure care as if everyone may have low health literacy Simplify care tasks Make care seamless and organized Integrate a well-trained work force

68 Planned Care Intensive Self-care Education compared to Usual Care DeWalt et al. BMC Health Services Research. 6:30; Rothman et al. Am J Med 2005; 118:

69 Intervention 1-hour individualized education session Education booklet <6th grade level Digital bathroom scale Scheduled follow-up phone calls Facilitated access

70 Heart Failure 47% reduction in hospitalization for those who had planned care visits DeWalt et. al. BMC Health Services Research. 6:30, 2006

71 A1C (%) Diabetes Improvement in A1C ** Control 8 Intervention Time (mos) * Repeated Anova p<0.05 Rothman et al. Am J Med 2005; 118:

72 A1c (%) Diabetes Control: Results for Patients with Literacy Above 6th Grade Level Control High 11 Intervention High Time (mos) * Difference (Adjusted) -0.6, 95% CI (-1.2, 0.1) Rothman et al. JAMA 2004, 292(14):

73 A1c % Diabetes Control: Results for Patients with Literacy at or Below 6 th Grade Level 11 Control Low 10 Intervention Low 9 * Time (mos) * Difference (Adjusted) -1.2, 95% CI (-1.9, -0.6) Rothman et al. JAMA 2004, 292(14):

74 Would you please tell me in your own words what dialysis means? Avoid Jargon! Do you know what the number one cause for people in this country being on dialysis is? Diabetes In your own words, what do you think the doctor was trying to tell the patient? Check something every day. What? Is that about your toes? It means that your diabetes is going worse that you have to exercise to make diabetes. You got to get on machine to pump.. redo blood to come up to par. It s a way to clean blood get off toxins out the blood. Sugar is too high. I can't say it. Means that more people are getting diabetes. That the sugar was not hmm. That you need to be on dialysis to cleanse blood or gonna die.

75 Increasing Capacity Direct Improving patients ability to understand and navigate Indirect Accommodating patients limited ability to understand and navigate

76 Directly Increasing Capacity Coaching Post-discharge support (nurse care manager) Chronic illness self-management (health educators) Pre-visit prep (clinic staff) Peer mentors Cheat sheets or orientation cards Inpatient day-at-a-glance Disease-specific glossaries

77 Indirectly Increasing Capacity Patient navigators Human Professionals Peers / patients Electronic (e.g., kiosks) Community health workers

78 78

79 AHRQ Health Literacy Universal Precautions Toolkit The Agency for Healthcare Research and Quality tasked The University of North Carolina at Chapel Hill to develop a stepby-step guide to help providers partner with patients of all literacy levels. The toolkit includes 4 categories: Improve Spoken Communication Improve Written Communication Improve Self-Management and Empowerment Improve Supportive Systems

80 Why Health Literacy Universal Precautions? You can t tell by looking Even people with higher literacy skills have trouble understanding medical care No screening instrument can tell you if people will understand what they need to do Most interventions for people with low literacy help those with higher literacy 80

81 Path to Improvement 1. Watch a health literacy video 2. Form your team 3. Assess your practice 4. Choose tools 5. Raise staff awareness about health literacy 6. Plan your changes 81

82 Summary Patients cannot engage if they don t understand Key drivers for health literacy universal precautions Improve written health information Improve spoken communication Improve self-management and empowerment Improve supportive systems Implementing changes in a practice requires effort and an implementation strategy We need to remember that health literacy affects several facets of high quality health care Using the AHRQ HL toolkit can support patient engagement 82

83 Resources U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality (AHRQ), Questions Are the Answer U.S. Department of Health and Human Services, Health Resources and Services Administration (HERSA) National Patient Safety Foundation, Ask Me 3 NC Program on Health Literacy (AHRQ Universal Precautions Toolkit)

84 Acknowledgements Thanks to: Somnath Saha, MD, MPH Ashley Hink, BS Iowa Health System Health Literacy Teams Mary Ann Abrams, MD, MPH Bob Dickerson, MSHSA, RRT Barb Earles, RN, MHA, CPHRM Gail A. Nielsen, BSHCA, IHI Fellow Barb Savage, MT (ASCP)

85 Special thanks to University of North Carolina at Chapel Hill, Darren DeWalt, MD, MPH & Robb Malone, PharmD, CDE for content from the North Carolina Program on Health Literacy, Overview of Health Literacy and Integrating Strategies into Clinical Practice: The Teach Back Method, January 22, 2010 Faculty Development Program in Health Literacy and Aging (Supported in part by a grant from the Bureau of Health Professions, Health Resources and Services Administration, US Department of Health and Human Services, Grant #1D31HP08833)