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NYS HIVQUAL Workshop: Screening for Health Literacy October 16, 2009

NYS HIVQUAL Workshop: Screening for Health Literacy October 16, 2009 Nanette Brey Magnani breymagnan@aol.com & Meera Vohra mxv10@health.state.ny.us NYSDOH AIDS Institute. Commemorating Health Literacy Month with song http://www.healthrock.com/podcasts.

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NYS HIVQUAL Workshop: Screening for Health Literacy October 16, 2009

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  1. NYS HIVQUAL Workshop: Screening for Health Literacy October 16, 2009 Nanette Brey Magnani breymagnan@aol.com & Meera Vohra mxv10@health.state.ny.us NYSDOH AIDS Institute

  2. Commemorating Health Literacy Month with song http://www.healthrock.com/podcasts October is Health Literacy Month (11th year!) This a time for organizations and individuals worldwide to promote the importance of understandable health information. Health Literacy month was started in 1999 by Helen Osborne along with a team of health literacy advocates.    http://www.healthliteracymonth.org/

  3. “It makes me feel bad when I come in here and somebody hand me something and I can’t read it...” “I’ve had a lot of illnesses, but I prefer to stay home.” Baker DW, et. al. The Health Care Experience of Patients with Low Literacy. Arch Fam Medicine 5, June 1996

  4. Definitions: 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’ U.S. Department of Health and Human Services. Health Communication (Chapter 11). In: Healthy People 2010: Understanding and Improving Health and Objectives for Improving Health. 2nd ed. Washington, D.C.: U.S. Government Printing Office; 2000. “Health Literacy.” National Network of Libraries of Medicine. http://nnlm.gov/outreach/consumer/hlthlit.html

  5. Definitions: Health Literacy “ the ability to read, understand and act upon health-related information. It also refers to the capacity of professionals and institutions to communicate effectively so that community members can make informed decisions and take appropriate actions to protect and promote their health.” Office of the Mayor

  6. How many have observed… • Incomplete patient satisfaction forms or registration forms • Excuses to not fill out forms • Family members brought in to speak for patients • Patients just nod their head in understanding • Inability to name medications • Medication non-adherence • Frequently missed appointments

  7. Does this Swiss Cheese Model reflect your clinic? Institute for Healthcare Improvement

  8. Consequences of Low Health Literacy • Several studies found limited health literacy in people living with HIV/AIDS to be associated with: • Less preventive care • Increase use of ER and hospitalizations • poor health outcomes such as less HIV knowledge, • lower CD4 cell counts, • poor medication adherence, and • more hospitalizations than those with adequate levels of health literacy.

  9. Low Literacy Rates in NY New York State: 50%* • New York City: 63% • Albany: 45% • Syracuse: 51% • Buffalo: 61% • Rochester: 57% Go to https://www.casas.org/lit/litcode/Search.cfm to find rates in your city or county. *Synthetic estimates of adult literacy proficiency presented here combine information from the 1993 National Adult Literacy Survey (NALS) and the 1990 U.S. Census to estimate adult literacy proficiencies in geographical areas not adequately sampled by NALS. Portland State University, 1996. Permission granted to CASAS for internet delivery at https://www.casas.org

  10. HIVQUAL Indicator “Enter the date of the most recent Health Literacy Screen (even if before the review period).” If the patient’s medical record documents the date of any health literacy screening enter most recent date (continue to 1.1) Otherwise click on “None documented (stop).” 1.1 “Was a need for Health Literacy intervention indicated?” • Yes (continue to 1.2) • No (stop) 1.2 “Did the patient receive a health literacy intervention?” • Yes (stop) • No (stop)

  11. Health Literacy – Common Terms Functional health literacy: basic reading and writing skills to understand and follow simple health messages Interactive health literacy: more advanced skills to manage health in partnership with Healthcare Provider Critical health literacy: the ability to critically analyze information, increase awareness and participate in action to address barriers A and Saunders M. Health literacy revisited: what do we mean and why does it matter? Health Promotion International. 2009

  12. Types of Literacy, Knowledge and Skills 1. Prose: search, comprehend, use continuous text Examples: • pamphlets • newspaper articles NAAL research

  13. Contd. Types of Literacy, Knowledge and Skills 2. Document: search, comprehend and use non-continuous texts in various formats Examples: • train schedule • food labels • prescription labels • appointment slips, HIPAA forms NAAL research

  14. Contd. Types of Literacy, Knowledge and Skills 3. Quantitative: identify and perform computations, alone or sequentially, using numbers embedded in printed materials Examples: • completing an order form • balancing a checkbook • understanding graphs NAAL research

  15. Purpose of Health Literacy Screen To help the HIV program staff determine the degree to which patients have the ability to understand: • Oral communication such as: • Intake procedures • Doctor’s directions • Medical exam • Discharge instructions Does this involve prose, document or quantitative literacy? Functional? Interactive? Critical? “Health Literacy.” National Network of Libraries of Medicine http://nnlm.gov/outreach/consumer/hlthlit.html

  16. Purpose of screening contd. • Written communication such as: • Intake forms • Instructions on prescription drug bottles • Appointment slips • Medical education brochures • Consent forms Does this involve prose, document or quantitative literacy? Functional? Interactive? Critical? “Health Literacy.” National Network of Libraries of Medicine http://nnlm.gov/outreach/consumer/hlthlit.html

  17. Purpose of screening contd. • How to negotiate complex health care systems – how the health system works: • Insurance forms • Signage • Phone system Does this involve prose, document or quantitative literacy? Functional? Interactive? Critical?

  18. Purpose of screening contd. • To identify potential barriers to effective communication such as: • congruence of the message with health values and beliefs • language

  19. Purpose of screening contd. …..so patients can make informed health decisions, maintain and improve their health, and self-manage their illness.

  20. Criteria for Selection • Brainstorm factors to consider when selecting a tool to pilot • Identify the top 3-4 factors

  21. Standardized Screening Tools Strengths Assess reading ability, reading comprehension and/or numeracy in a health care context. Detect whether or not a patient has limited functional health literacy. Used as proxy measures in health literacy research. Limitations: Not designed to comprehensively test health literacy. Results do not identify a health literacy-medication adherence relationship, etiologies or specific interventions. REALM REALM-R TOFHLA S-TOFHLA NVS Davis TC, Wolf MS, Arnold CL, Byrd RS, Long SW, Springer T, Kennen E, and Bocchini JA. Development and Validation of the Rapid Estimate of Adolescent Literacy in Medicine (REALM-Teen): A Tool to Screen Adolescents for Below-Grade Reading in Health Care Settings. Pediatrics. 2006, 6:1707-1714.

  22. Non-standardized Screening Tools Strengths: Attempt to help clinicians : 1) assess how well their individual patients understand health information and 2) individualize their patient education. Better elucidates interventions that can be used. Limitations: Some perform no better than predicting literacy based on demographics. Some do not perform as well as tests evaluating reading ability. BEKHA-HIV Single Item Literacy Screen “How confident are you filling out medical forms by yourself?” SOS Mnemonic Paasche-Orlow MK and Wolf MS. Evidence Does Not Support Clinical Screening of Literacy. Journal of General Internal Medicine. 2007, 23(1):100-102. Jeppesen KM, Coyle JD, and Miser WF. Screening Questions to Predict Limited Health Literacy: A Cross-Sectional Study of Patients With Diabetes Mellitus. Annals of Family Medicine. 2009, 7(1):24-31.

  23. STANDARDIZED HEALTH LITERACY SCREENING TOOLS

  24. Davis TC, Long SW, Jackson RH, Mayeaux EJ, George RB, Murphy PW, and Crouch MA. Rapid Estimate of Adult Literacy in Medicine: A Shortened Screening Instrument. Clinical Research and Methods. 1993, 25(6):391-395.

  25. Bass PF, Wilson JF, and Griffith CH. A Shortened Instrument for Literacy Screening. Journal of General Internal Medicine. 2003, 18:1036-1038.

  26. Davis TC, Wolf MS, Arnold CL, Byrd RS, Long SW, Springer T, Kennen E, and Bocchini JA. Development and Validation of the Rapid Estimate of Adolescent Literacy in Medicine (REALM-Teen): A Tool to Screen Adolescents for Below-Grade Reading in Health Care Settings. Pediatrics. 2006, 6:1707-1714.

  27. Parker RM, Baker DW, Williams MV, and Nurss JR. The test of functional health literacy in adults: a new instrument for measuring patient’s literacy skills. Journal of General Internal Medicine. 1999, 10(10):537-541.

  28. Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. Development of a brief test to measure functional health literacy. Patient Education and Counseling. 1999, 38:33-42.

  29. Weiss BD, Mays MZ, Martz W, Castro KM, DeWalt DA, Pignone MP, Mockbee J, and Hale FA. Quick Assessment of Literacy in Primary Care: The Newest Vital Sign. Annals of Family Medicine. 2005, 3:514-522.

  30. NON-STANDARDIZED HEALTH LITERACY SCREENING TOOLS

  31. Osborn CY, Davis TC, Bailey SC, and Wolf MS. Health Literacy in the Context of HIV Treatment: Introducing the Brief Estimate of Health Knowledge and Action (BEKHA)-HIV Version. AIDS Behavior. 2008

  32. Morris NS, MacLean CD, Chew LD, and Littenberg B. The Single Item Literacy Screener: Evaluation of a brief instrument to identify limited reading ability. BMC Family Practice. 2006, 7(21).

  33. Chew LD, Griffin JM, Partin MR, Noorbaloochi S, Grill JP, Snyder A, Bradley KA, Nugent SM, Baines AD, and VanRyn M. Validation of Screening Questions for Limited Health Literacy in a large VA Outpatient Population. Journal of General Internal Medicine. 2007, 23(5):561-566. Wallace LR, Rogers ES, Roskos SE, Holiday DB, and Weiss BD. Brief Report: Screening Items to Identify Patients with Limited Health Literacy Skills. Journal of General Internal Medicine. 2006, 21:874-877.

  34. Jeppesen KM, Coyle JD, and Miser WF. Screening Questions to Predict Limited Health Literacy: A Cross-Sectional Study of Patients With Diabetes Mellitus. Annals of Family Medicine. 2009, 7(1):24-31.

  35. Summary Standardized health literacy screening tools: Focus is on measuring reading ability Most also test numeracy and reading comprehension of health-related information Context of screening is very important because of the assessment-like nature of the screening tools Cannot identify etiologies, which would help identify interventions Non-standardized health literacy screening tools: While not all are validated or well-used, these tools offer potential as effective screening tools as they help clinicians better identify etiologies and interventions.

  36. Example Greater Hudson Valley Family Health Center Iris Arzu

  37. Treatment Adherence Learning Network Current Activity New Activity Intervention Change ARV packaging Regimen recall Reminder tools Literacy Assessment Score Review of labs Ed. targeted to literacy level Adjustments to Patient/Provider communication

  38. Implementation (continued) • During regimen/lab reviews, teach-back makes explicit what patients understand • Results are used to select materials, tools, education and other supports • Results are used to adjust language, visuals and/ or the structure of the provider/patient interaction

  39. Draft Tool For each of the items below, please use the scale underneath the question, to show your assessment of the patient’s current grasp of or ability to use the medication-related information and tools/treatments provided. You can mark anywhere on the line. Sections 1 and 2 are only to be completed for patients currently on an antiretroviral regimen. 1. Recall of Medications: During the multi-day recall of doses taken or missed, How well was the patient able to identify his/her antiretroviral medications, by name or description?Note: Treat recognition with prompting or visual aids the same as recognition/naming without assistance. 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 2. Dosage and Frequency: During the multi-day recall of doses taken or missed, How well did the patient recall the dosage amount (number of pills or ml per dose) for each medicine? 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% How well did the patient recall the number of doses per day? 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% How well did the patient seem to understand and be able to follow specific instructions with his/her antiretroviral medications? (e.g., specific timing of doses, the point at which it’s better to wait for the next dose rather than taking a very late dose, the need to avoid “doubling up” on doses to make up for a missed dose, and/or the requirement to take certain medications “on an empty stomach” or “with plenty of fluids”) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

  40. Limitations • Method is indirect (items answered by provider, not patient) • Providers may have different views on how to score • Testing for reliability and validity (for use beyond QI) has not been done

  41. Lessons Learned • Functional literacy screens miss the impact of interventions and have practical limitations • Standard TA activities (adherence self-report and CD4 and VL review) provide a natural opportunity for medication literacy • Adoption in clinical practice depends on acceptability to patient and provider

  42. REALM Davis TC, Long SW, Jackson RH, Mayeaux EJ, George RB, Murphy PW, and Crouch MA. Rapid Estimate of Adult Literacy in Medicine: A Shortened Screening Instrument. Clinical Research and Methods. 1993, 25(6):391-395.

  43. REALM-Teen Davis TC, Wolf MS, Arnold CL, Byrd RS, Long SW, Springer T, Kennen E, and Bocchini JA. Development and Validation of the Rapid Estimate of Adolescent Literacy in Medicine (REALM-Teen): A Tool to Screen Adolescents for Below-Grade Reading in Health Care Settings. Pediatrics. 2006, 6:1707-1714.

  44. S-TOFHLA

  45. S-TOFHLA

  46. Newest Vital Sign Weiss BD, Mays MZ, Martz W, Castro KM, DeWalt DA, Pignone MP, Mockbee J, and Hale FA. Quick Assessment of Literacy in Primary Care: The Newest Vital Sign. Annals of Family Medicine. 2005, 3:514-522.

  47. BEKHA-HIV Osborn CY, Davis TC, Bailey SC, and Wolf MS. Health Literacy in the Context of HIV Treatment: Introducing the Brief Estimate of Health Knowledge and Action (BEKHA)-HIV Version. AIDS Behavior. 2008

  48. SOS Mnemonic Jeppesen KM, Coyle JD, and Miser WF. Screening Questions to Predict Limited Health Literacy: A Cross-Sectional Study of Patients With Diabetes Mellitus. Annals of Family Medicine. 2009, 7(1):24-31.

  49. Next Steps: • Testing your screening tool(s)

  50. PDSA Cycle Plan, Do, Study, Act

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