NYS HIVQUAL Workshop:

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• NYS HIVQUAL Workshop
• Screening for Health Literacy
• October 16, 2009
• Nanette Brey Magnani breymagnan_at_aol.com
• Meera Vohra mxv10_at_health.state.ny.us
• NYSDOH AIDS Institute

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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/

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• It makes me feel bad when I come in here and
  somebody hand me something and I cant read
  it...
• Ive 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
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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

1. 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.
2. Health Literacy. National Network of Libraries
   of Medicine. http//nnlm.gov/outreach/consumer/hlt
   hlit.html

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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

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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

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Does this Swiss Cheese Model reflect your clinic?

Institute for Healthcare Improvement
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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.

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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

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HIVQUAL Indicator

• Enter the date of the most recent Health
  Literacy Screen (even if before the review
  period).
• If the patients 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)

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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

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

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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

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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

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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
• Doctors 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/hlth
  lit.html

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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/hlth
lit.html
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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?

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Purpose of screening contd.

• To identify potential barriers to effective
  communication such as
• congruence of the message with health values and
  beliefs
• language

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Purpose of screening contd.

• ..so patients can make informed health
  decisions, maintain and improve their health,
  and self-manage their illness.

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Criteria for Selection

• Brainstorm factors to consider when selecting a
  tool to pilot
• Identify the top 3-4 factors

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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, 61707-1714.
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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.

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STANDARDIZED HEALTH LITERACY SCREENING TOOLS
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Rapid Estimate of Adult Literacy in Medicine (REALM) Rapid Estimate of Adult Literacy in Medicine (REALM)
Description A 66-item health-related word recognition test arranged in order of increasing difficulty. Provides a reading level grade estimate for patients that read below a 9th- grade level. Average administration time 3-6 min.
Measurement Low health literacy (At or below 3rd-grade reading level) 0 to 18 (4th to 6th-grade reading level) 19 to 44 Marginal health literacy (7th to 8th-grade reading level) 45 to 60 Adequate health literacy (9th-grade reading level) 61-66
Strengths Word-recognition tests are useful for predicting general reading ability in English. Extensively used in research settings.
Limitations Not designed to measure comprehension skills. Most useful in a research context.
Location Available for purchase from Terry C. Davis, PhD tdavis_at_lsuhsc.edu
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.
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Rapid Estimate of Adult Literacy in Medicine Revised (REALM-R) Rapid Estimate of Adult Literacy in Medicine Revised (REALM-R)
Description The word-recognition REALM test was shortened from 66 items to the following 8 items osteoporosis, allergic, jaundice, anemia, fatigue, directed, colitis, and constipation. Average administration time 2 min
Measurement Those with a score of 6 (sixth grade) or less should be considered to be at risk for poor health literacy
Strengths Additional words can be added to this assessment and still maintain 2-minute administration time. This would allow for development of more disease-specific test, by choosing words related to a particular disease. Short administration time
Limitations Poor literacy skills are thought to disproportionately affect the elderly and minorities, 2 groups who were underrepresented in the study validating the REALM-R. Utility in research and clinical settings less known.
Location Available for purchase from Terry C. Davis, PhD tdavis_at_lsuhsc.edu
Bass PF, Wilson JF, and Griffith CH. A Shortened
Instrument for Literacy Screening. Journal of
General Internal Medicine. 2003, 181036-1038.
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Rapid Estimate of Adolescent Literacy in Medicine (REALM-Teen) Rapid Estimate of Adolescent Literacy in Medicine (REALM-Teen)
Description The word-recognition REALM test was adapted for adolescents in health care settings. Like the REALM, there are 66 items in order of increasing difficulty. The test allows health professionals to screen youth in grades 6 though 12 for below-grade reading. Average administration time 2-5 min
Measurement 0-37 lt 3rd grade level 38-47 4th-5th grade level 48-58 6th-7th grade level 59-62 8th-9th grade level 63-66 gt 10th grade level
Strengths Words in test are more specific to adolescents age group than words in REALM.
Limitations Like REALM, cannot diagnose specific reading or learning problems or determine patient deficiencies in computing, comprehending, or acting on health education.
Location Available for purchase from Terry C. Davis, PhD tdavis_at_lsuhsc.edu
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, 61707-1714.
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Test of Functional Health Literacy in Adults (TOFHLA) Test of Functional Health Literacy in Adults (TOFHLA)
Description Two-part assessment 1) Provides participants with medical information or instructions about various scenarios, such as instructions on a prescription label or instructions about preparation for a diagnostic procedure. Participants review the scenarios and then answer questions that test their understanding of the information in the scenarios. 2) Based on the Cloze method, in which participants are given passages of text about medical topics with selected words deleted and replaced with blank spaces. The participants must fill in the blank spaces using words selected from a multiple choice list of options, identifying the words most appropriate to the context of the passage. Administration time 22-25 min
Measurement Inadequate Literacy 0-59 Marginal Literacy 60-74 Adequate Literacy 75-100
Strengths Indicator of a patients ability to read and understand health-related prose passages and numerical information Used extensively in research contexts Spanish version available
Limitations Primarily screens for reading ability Long administration time
Location Available for purchase from http//www.peppercornbooks.com/ at 70.
Parker RM, Baker DW, Williams MV, and Nurss JR.
The test of functional health literacy in adults
a new instrument for measuring patients literacy
skills. Journal of General Internal Medicine.
1999, 10(10)537-541.
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Short Test of Functional Health Literacy in Adults (S-TOFHLA) Short Test of Functional Health Literacy in Adults (S-TOFHLA)
Description The original S-TOFHLA was reduced to a 4-item numeracy section and 2 reading comprehension passages with missing words, which are at the 4th grade reading level (preparation for an upper gastrointestinal series) and 10th grade reading level (the patients rights and responsibilities section of a Medicaid application). Average administration time 12 min The current S-TOFHLA does not include the numeracy section. Similar to the TOFHLA, patients are asked to select the words that best fit into the passages. Average administration time 8 min
Measurement Inadequate health literacy 0-53 Marginal health literacy 54-66 Adequate health literacy 67-100
Strengths Assesses reading comprehension Tested on a variety of populations (young, elderly) Shorter administration time
Limitations Numeracy not tested.
Location Available in English and Spanish for purchase for 10 http//www.peppercornbooks.com/catalog/product_info.php?products_id2765osCsid http//www.peppercornbooks.com/catalog/product_info.php?products_id2766osCsid
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, 3833-42.
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Newest Vital Sign (NVS) Newest Vital Sign (NVS)
Description This 6-item assessment measures reading and comprehension of a nutrition label and was developed through funding from Pfizer Pharmaceuticals. Average administration time 3 min Maximum administration time 6 min
Measurement Patients with low literacy 0-4 questions answered correctly Patients unlikely to have low literacy 5-6 questions answered correctly
Strengths Tests for numeracy , reading ability and interpretation skills as applied to a healthcare setting Available in English and Spanish Correlates with TOFHLA May be more sensitive to patients with marginal health literacy than other functional health literacy assessments
Limitations May overestimate the percent of patients with low literacy, due to its specificity Does not differentiate between adequate and marginal literacy well
Location Can be ordered online free of charge from http//www.pfizerhealthliteracy.com/physicians-providers/newest-vital-sign.html
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, 3514-522.
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NON-STANDARDIZED HEALTH LITERACY SCREENING TOOLS
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Brief Estimate of Health Knowledge and Action HIV Version (BEKHA-HIV) Brief Estimate of Health Knowledge and Action HIV Version (BEKHA-HIV)
Description An 8-item assessment of HIV treatment knowledge and action. The knowledge subscale measures a patients capacity to understand health information, while the action subscale measures a patients ability to make actionable decisions accordingly to acquired health information. Three items are associated with knowledge, while 5 items are associated with action.
Measurement Low Literacy 0-3 Marginal Literacy 4-5 Adequate Literacy 6-8
Strengths May better represent health literacy for HIV patients than more general measures of reading ability or health vocabulary. Scores on BEKHA-HIV were significantly associated with self-reported medication adherence.
Limitations Not a direct test of functional health literacy in terms of reading ability. Further validation needed
Location Contact Chandra Osborn at chandra.osborn_at_vanderbilt.edu
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
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Single Item Literacy Screener (SILS) Single Item Literacy Screener (SILS)
Description A single item question intended to identify adults in need of help with printed health material. How often do you need to have someone help you when you read instructions, pamphlets, or other written material from your doctor or pharmacy?
Measurement 1-Never 3-Sometimes 5-Always 2-Rarely 4-Often Scores greater than 2 are considered positive, indicating some difficulty with reading printed health related material.
Strengths Very brief and practical for use during a routine clinical encounter More a direct assessment of need than an assessment of skill Simpler than an estimate based on demographic or cultural norms
Limitations False negatives may arise from subjects not recognizing that they need help with reading, feeling ashamed, or not understanding the question.
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).
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How confident are you filling out medical forms by yourself? How confident are you filling out medical forms by yourself?
Description Two studies investigated the utility of three questions to detect limited health literacy. The three questions are 1) How often do you have problems learning about your medical condition because of difficulty understanding written information? 2) How often do you have someone help you read hospital materials? 3) How confident are you filling out medical forms by yourself? The researchers found that a single question was useful for detecting patients with inadequate health literacy (according to S-TOFHLA and REALM).
Measurement The 5 possible response are always, often, sometimes, occasionally, or never. Answers of sometimes, occasionally and never indicate limited health literacy.
Strengths Very brief, can be given unobtrusively in clinical settings, better at predicting limited health literacy than some demographic characteristics.
Limitations Study was conducted in a large population of VA primary care patients and may not be generalizable to other settings.
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,
21874-877.
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SOS Mnemonic SOS Mnemonic
Description This study found that self rated reading ability, Single Item Literacy Screen result, and highest education level independently predicted whether a patient has limited health literacy as defined by their S-TOHFLA score. The study suggests that the use of all these questions is superior to the use of any one of them individually.
Measurement Not included in this presentation
Strengths Asking specific questions about how an individual understands health information may better elucidate interventions that can be used.
Limitations Study participants were all being treated for diabetes at a single academic family practice center. Study participants knew they were receiving reading tests and may have been less likely to attempt to conceal a reading problem. Model not yet validated to determine how well these results apply to other populations, though results correlate with S-TOFHLA.
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.

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Example

• Greater Hudson Valley Family Health Center
• Iris Arzu

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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
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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

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Draft Tool

• For each of the items below, please use the scale
  underneath the question, to show your assessment
  of the patients 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 its
  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
•                     

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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

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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

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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, 61707-1714.
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, 3514-522.
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)

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PDSA Cycle Plan, Do, Study, Act
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Repeated Use of Cycle
Changes That Result in Improvement
Learning from Data
Hunches Theories Ideas
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Example for PDSA Cycle
Patients receiving a Health Literacy Screen
DATA
Cycle 1E Implement and monitor result
quarterly
Cycle 1D Incorporate suggestions, expand to
third physician.
Cycle 1C Continue with Dr. Zs patients and
expand to NP Js patients for third week.
Cycle 1B Try out the second week with Dr. Zs
patients incorporating suggestions from 1st week
Cycle 1A Try out screening tool with Dr. Zs
patients during week 1.
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Resources

• To calculate literacy rates in your area
• www.casas.org/lit/litcode/Search.cfm
• Online training
• www.hrsa.gov/healthliteracy/training.htm
• The Quality Academy, Tutorial 23 Understanding
  and Addressing Health Literacy
  www.nationalqualitycenter.org
• The Literacy Assistance Center, NY
  http//www.lacnyc.org
• HIV Health Literacy performance measurement
• www.hivqual.org

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Resources

• Overview of the National Assessment of Adult
  Literacy http//nces.ed.gov/NAAL/
• Partnership for Clear Health Communication
  www.askme3.org
• Harvard School of Public Health Health Literacy
  Studies www.hsph.harvard.edu/healthliteracy/
• The Joint Commission (2007) What Did the Doctor
  Say? Improving Health Literacy to Protect
  Patient Safety http//www.mmia.org/uploads/pages/
  215.pdf

Other Resources
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Thanks to AI Staff

• Sreela Namboordiri
• Bruce Agins
• Clemens Steinbock
• Lyn C Stevens
• Beth Woolston
• Dan Belanger

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Evaluation and Wrap up

• Thank you ?