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

National Quality Center (NQC)1

NYS HIVQUAL Workshop:

Screening for Health LiteracyOctober 16, 2009

Nanette Brey Magnani [email protected]

&

Meera Vohra [email protected]

NYSDOH AIDS Institute


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/


“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


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/hlthlit.html


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


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


Does this Swiss Cheese Model reflect your clinic?

Institute for Healthcare Improvement


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.


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


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)


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


Types of Literacy, Knowledge and Skills

1. Prose: search, comprehend, use continuous text

Examples: • pamphlets• newspaper articles

NAAL research


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


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


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


Purpose of screening contd.

Written communication such as:• Intake forms• Instructions on prescription drug bottles• Appointment slips• Medical education brochures• Consent forms


“Health Literacy.” National Network of Libraries of Medicine http://nnlm.gov/outreach/consumer/hlthlit.html



How to negotiate complex health care systems – how the health system works:

• Insurance forms• Signage• Phone system




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

and beliefs language



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


Criteria for Selection

• Brainstorm factors to consider when selecting a tool to pilot

• Identify the top 3-4 factors


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.


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.


STANDARDIZED HEALTH LITERACY SCREENING TOOLS


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: [email protected]

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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Although not designed to measure comprehension, word-recognition tests are useful predictors of general reading ability in English. If an individual has difficulty pronouncing words in isolation, which is a beginning-level reading skill, he or she is likely to have difficulty with comprehension, a higher-order skill.


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.


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


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 : <= 3rd grade level38-47: 4th-5th grade level48-58: 6th-7th grade level59-62: 8th-9th grade level63-66: >= 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.




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: 60-74Adequate Literacy: 75-100

Strengths Indicator of a patient’s 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 patient’s literacy skills. Journal of General Internal Medicine. 1999, 10(10):537-541.


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: 54-66Adequate 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 $10http://www.peppercornbooks.com/catalog/product_info.php?products_id=2765&osCsidhttp://www.peppercornbooks.com/catalog/product_info.php?products_id=2766&osCsid

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.


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 minMaximum administration time: 6 min

Measurement Patients with low literacy: 0-4 questions answered correctlyPatients 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, 3:514-522.


NON-STANDARDIZED HEALTH LITERACY SCREENING TOOLS


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 patient’s capacity to understand health information, while the action subscale measures a patient’s 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 [email protected]

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


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-Always2-Rarely 4-OftenScores 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).


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 readhospital 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, 21:874-877.


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.


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.


Example

Greater Hudson Valley Family Health Center

Iris Arzu


Treatment Adherence Learning Network

Current Activity New Activity Intervention

Regimen recall

Review of labs

Literacy Assessment

Score

Change ARV packaging

Reminder tools

Ed. targetedto literacy level

Adjustments to Patient/Provider communication


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


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%


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


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


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.


REALM-Teen



S-TOFHLA


S-TOFHLA


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.


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


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.


Next Steps:

• Testing your screening tool(s)


PDSA Cycle Plan, Do, Study, Act


Repeated Use of Cycle

Hunches Theories

Ideas

Changes That Result in

Improvement

A P

S D

APS

D

A P

S DD S

P ALearning from Data

Very small scale test

Follow-up tests

Wide-scale tests of change

Implementation of change

PDSA Measures


Example for PDSA Cycle

Patients receiving a

Health Literacy Screen

A PS D

APS

D

A PS D

D SP A

DATAD SP A

Cycle 1A: Try out screening tool with Dr. Z’s patients during week 1.

Cycle 1B: Try out the second week with Dr. Z’s patients incorporating suggestions from 1st week

Cycle 1C: Continue with Dr. Z’s patients and expand to NP J’s patients for third week.

Cycle 1D: Incorporate suggestions, expand to third physician.

Cycle 1E: Implement and monitor result quarterly


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 measurementwww.hivqual.org


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


Thanks to AI Staff:

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


Evaluation and Wrap up

Thank you

Documents

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