Health Literacy ~ Can Your Patient Correctly Follow the Instructions?

1. “The bottle says ‘take three pills a day’. I don’t want to forget, so I take them all at bedtime.”…George Doe Health Literacy ~ Can Your Patient Correctly Follow the Instructions? Improving Patient Safety and Care Joan Somes PhD, RN-BC, CEN, CPEN, FAEN, NRP

2. FYI ~ no conflicts or disclosures • I have no financial relationships or other conflict of interests to disclose, and will not discuss off label and/or investigational use during presentation • Research grants: OTS older driver safety grant • Owner: Emergency Care Instructing – provides AHA courses • Consultant: Minnesota Department of Health on stroke

3. Compliance Issues • Is the patient non-compliant? Or is the patient unable to read and follow the instructions?

4. Is the patient generally literate, but “medically” illiterate?Most of us with a new medical diagnosis are not “literate” about that specific issue.

5. Health Literacy Ability to: • Read • Understand • Acton health information

6. 48% of the population has medical literacy problems. Even medically literate people will be challenged by language that is not part of their “specialty”!

7. Need some statistics? • 21% cannot read newspaper • 26% can’t figure out next appointment • 42% don’t know how to take meds • 48% can’t follow bus schedule • 86% don’t understand rights and responsibilities of Medicaid application

8. Many patients read at 8th grade reading level • Information often higher • 1/5 functionally illiterate • Disconnect: confused helpless frustrated

9. Risks due to poor literacy • Misunderstanding of healthcare instructions, prescriptions, & appointment slips • Poor health outcomes • Increased healthcare costs • Medication/instruction errors

10. Low literacy patients • Use more services $106 to $238 billion/year • Increased use of ER • More serious symptoms • More frequent admissions • Longer hospital stays $ (In 2005 this number was $50 – 73 billion) Health literacy LLM https://nnlm.gov/professional-development/topics/health-literacy accessed 6/17 Health Literacy Interve ntions and Outcomes: an Updated of the Literacy and Health Outcomes Systematic Review of the Literature https://www.ahrq.gov/downloads/pub/evidence/pdf/literacy/literacyup.pdf accessed 6/17

11. One study showed average annual healthcare cost for Medicaid enrollees was $3,000 each*Cost for low literacy patients was $13,000 each!* *2005 numbers - calculates closer to $30,000 now

12. Other Costs? • Disability/scars • Lawsuits • Death • Personal loss

13. Dealing with health literacy“This is all interesting, but MY patients read just fine!” Attitude is a big part of this issue!

14. Testing My Patients At what level do our patients read? At what level are our instructions written? How well do these two levels match?

15. Patients were approached to participate in a study. All medically stable, English- speaking patients were eligible to participate. Those presenting with unstable medical conditions or psych issues were excluded.

16. One of my concerns:Would the patients be able to“read” and understand the consent?

17. All though warned that people would probably not want to participate, most patients were enthusiastic, willing, and often commented – “Duh! What a great idea!”Rarely, a patient would initially agree to participate and then back down!

18. REALM Reading Test on St. Joe’s ER pts. in 2002 pelvic fat diabetes bowel osteoporosis nausea

19. 390 asked30 had language barrier5 dropped out15 refused – reasons (7 good, 8 hostile)5 could not read8 @ 1-3 grade18 @ 4-6 grade98 @ 7-8th grade.174/385 tested able to “maybe” read at 7 to 8th grade reading level Not included in the 390 number 211 9+ Gr. 98 7-8 Gr. 18 4-6 Gr. 8 1-3 Gr. 5 could not read

20. Who was a poor reader?

21. Completing a grade, or graduating from high school did not predict ability to read words or understand medical information.

22. Inability to read crossed gender, race, age, financial status, and appearance!Patients and families “hid” this inability well!

23. 33-48% of the population has medical literacy problems. Even medically literate people may have literacy issues in areas that are not their “specialty”!

24. So what did findings suggest? Instructions need to be: • written at a more patient friendly reading level! • spoken at a more patient friendly language level! • delivered in a serious, but friendly tone that matches body language

25. And we need to: • Make others aware of the problem • Teach others signs/risks of low health literacy

26. In reality – We have two problems! • Reading • Language General Medical English Medicalese

27. Think about some of our day to day words.. • Hypertension • Aortic stenosis • Pancreatitis • Duodenal ulcer caused by Helicobacter Pylori • Epilepsy • Intra-coronary stent • Speculum How easy are these words to read?

28. Pretend you are a patient and we just gave you this sheet with information on it!

29. The electrical conduction of your cardiac system has defaulted to an alternative route via the Wolfe-Parkinson-White accessory pathway resulting in a cyclic circus movement of the electrical impulses. You also have a conduction delay defect in the ventricular electrical system leading to aberrant conduction impulses through the Perkinje fibers. Thus, you are experiencing an aberrantly conducted supra- ventricular tachycardia with the ultimate consequence of vertigo and near syncope

30. What did it say?

31. What did it say? • Your heart is going too fast. • You are not pumping enough blood to your head. • That makes you dizzy and lightheaded.

32. Some examples during my study • “once’ ” over dose • Diabetic – 2nd grade • Glad bone “fractured” and “not broken!” • Mother/son visit (mom @ 0, son @ 3rd) • College grad – dyslexic • Grandmother – family hid it • Staff member’s grandfather couldn’t dial phone – didn’t know numbers

33. Con’t • A-noxion for heart tribulation • Depositories for nausea • Incubated to breathe • The child was an “Immaculate Deception” and she has “Immaculate Degeneration” • “Fuzzy” baby • Lapendectomy

34. Con’t • Hyper-thermulate • Calamity & herbies • Ipi-itis • Post mortem depression • RSVP virus • Sink – able episode • Reiken virus

35. Genetic pills Nitrogen Halogen Syrup of epileptic Bursta-cardia Stereo-oids Di-oxin Finnegan’s expectorant Monastery 7 Procaine senior TNT pills Tick-led Evervil Rotisserie Latex Duracell Pregasone Percaludes Some of the meds

36. Literacy & Language are only part of Communication Barriers! Health care provider Perceptual Informational Temporal Emotional Linguistic Message Message Patient

37. Frontal lobe Personality, behavior, emotions Judgment, planning, problem solving Speech: speaking and writing (Broca’s area) Body movement (motor strip) Intelligence, concentration, self awareness Parietal lobe Interprets language, words Sense of touch, pain, temperature (sensory strip) Interprets signals from vision, hearing, motor, sensory and memory Spatial and visual perception Occipital lobe Interprets vision (color, light, movement) Temporal lobe Understanding language (Wernicke’s area) Memory Hearing Sequencing and organization (1, 2) Reading and ‘injury’ to the brain 1. Mayfield Brain and Spine Anatomy of the Brain https://www.mayfieldclinic.com/PE-AnatBrain.htm 2. Burns, M. The Reading brain: How your brain helps you read and why it matters http://www.scilearn.com/blog/the-reading-brain

38. Synopsis of Common Linguistic Barriers • Language • Medicalese • Intelligence • Colloquialisms • Cultural differences • Sensory barriers – speech, hearing, sight • Brain – stroke issues Clear Liquid!

39. Non-English Speaking Situations • Translators may not know the medical words leading to difficulty interpreting • Often there is “formal” language and “street” language

40. How to Help • Shame free environment • Attitude of helpfulness • Improve communication skills • Look for clues (behaviors)

41. Behaviors (look for clues) • Incomplete registration forms • Inaccurately completed forms • Lack of follow through with tests/referrals • Appears non-compliant, defiant, hostile • States can’t get appointment • Shows up wrong place/time/day, even with all this info on form with the patient

42. Other behaviors • Menu’s not completed • Incorrect diet choices • Frequently missed appointments • States taking meds, but labs levels indicate not, or physiologic evidence of taking is not apparent • Doesn’t follow instructions related to cares i.e. dressing changes, exercise, rest, etc.

43. Listen Actively “I’ll be over at Tom’s, I told you his parents would be there, but they won’t be. We’ll just be playing video games, and getting stoned. Luckily, you’re not the type to call and check up.” Parents – the anti drug

44. Responses to receiving written information • My eyes are tired – I’ll read it when I get home! • I forgot my glasses – can you read it to me! • Let me bring this home so I can discuss it with my family • How do you say this word? • The doctor’s writing is messy • The print is too small! • Your copy machine isn’t too good!

45. When asked about medications • Unable to name meds • Unable to explain med purpose • Unable to explain timing of med • Says “Ask my wife” or • “You have it in your records”, or • “My doctor/clinic can tell you” • Looks at the pills versus read the label • Gets mad when asked about meds • Won’t take a pill because “it is the wrong color”

46. Keep in mind! • Patients will not share health illiteracy • Patients will hide medical illiteracy • Look for clues • Ask “how comfortable are you with your reading ability? • Ask “how can I best help you to remember this information?”

47. Ways to Dig a Little Deeper • “I noticed you didn't fill in the form all the way, did you have trouble understanding what we were asking? Would you like me to go over it with you?” • “I've given you a lot of information here which can be overwhelming. How are you feeling about it?” Or, “How can I make this easier for you to digest?”

48. Ways to Dig a Little Deeper • “Tell me how you would explain this to your wife?” • “Tell me how you would take care of yourself at home?” • “Show me how you would do this…….”

49. Helpful Techniques • Speak slowly and repeat. • Use living room language. • Avoid medical jargon. • Use analogies. • Draw or show pictures. • Use charts or anatomical models. • Use teach back or show me technique every time.

50. When assessing for learning barriers… • Look for signs, • Make assumptions, • Ask questions, • Give “outs”, that allow you to really assess the patient’s ability to read and understand printed materials given to them.