Hahn Health Literacy, RIC Grand Rounds 11.09.11

Health Literacy

What is it?

Why is it important?

How should it be measured?

What do patients think?

Elizabeth A. HahnAssociate Professor

Department of Medical Social SciencesFeinberg School of Medicine, Northwestern University

[email protected]

RIC Grand Rounds

November 9, 2011

Learning Objectives

1. Understand how health literacy is defined and measured

2. Identify the relationships between low health literacy and poor health outcomes

3. Evaluate strategies to overcome literacy barriers

4. Develop strategies for using health literacy measures in research and clinical practice

Definition of Health Literacy

Health literacy is “the degree to which individuals can obtain, process, and understand the basic health information and services they need to make appropriate health decisions.”

It represents a constellation of skills necessary for people to function effectively in the health care environment and act appropriately on health care information. These skills include the ability to interpret documents, read and write prose (print literacy), use quantitative information (numeracy), and speak and listen effectively (oral literacy).

Berkman et al. Health Literacy Interventions and Outcomes: An Updated Systematic Review. AHRQ Publication Number 11-E006. March 2011.

Why is it important? Results. Differences in health literacy were associated with increased

hospitalizations, greater emergency care use, lower use of mammography, lower receipt of influenza vaccine, poorer ability to demonstrate taking medications appropriately, poorer ability to interpret labels and health messages, and, among seniors, poorer overall health status and higher mortality. Health literacy level potentially mediates disparities between blacks and whites.

Conclusions. Future research priorities include justifying appropriate cutoffs for health literacy levels; developing tools that measure additional related skills (e.g., oral (spoken) health literacy); and examining mediators and moderators of the effect of health literacy. Priorities in advancing the design features of interventions include testing novel approaches to increase motivation, techniques for delivering information orally or numerically, “work around” interventions such as patient advocates; determining the effective components of already-tested interventions; determining the cost-effectiveness of programs; and determining the effect of policy and practice interventions

Berkman et al. Health Literacy Interventions and Outcomes: An Updated Systematic Review. AHRQ Publication Number 11-E006. March 2011.

Measures of Health Literacy

1. Word recognition

2. Reading comprehension

3. Numeracy

1 2 3

fat fatigue allergic

flu pelvic menstrual

pill jaundice testicle

dose infection colitis

… … …

bowel syphilis anemia

asthma hemorrhoids obesity

rectal nausea osteoporosis

incest directed impetigo

Word Recognition:Rapid Estimate of Adult

Literacy in Medicine (REALM) (Davis et al., 1993)

Reading Comprehension:Test of Functional Health

Literacyin Adults (TOFHLA) (Parker et al., 1995)

Your doctor has sent you to have a _______________ x-ray.a. stomachb. diabetesc. stitchesd. germs

GARFIELD IM 16 Apr 93FF941862 Dr. LUBIN, MICHAEL DOXYCYCLINE100 mg 20/0  Take medication on empty stomach one hour before ortwo to three hours after ameal unless otherwise directed by your doctor. 02 11 (0 of 20)

Interviewer: If you eat lunch at 12:00 noon, and you want to take this medicine before lunch, what time should you take it?

Numeracy:Test of Functional Health

Literacyin Adults (TOFHLA) (Parker et al., 1995)

Numeracy:Newest Vital Sign (NVS) (Weiss et al.,

2005)

Interviewer: If you eat the entire container, how many calories will you eat?

Jordan JE, Osborne RH, Buchbinder R. Critical appraisal of health literacy indices revealed variable underlying constructs, narrow content and psychometric weaknesses. J Clin Epidemiol 2011;64:366-379

reviewed development, content and properties of 19 indices (originals and short-form derivatives; did not evaluate translated versions)

3 measurement approaches: direct testing of an individual’s abilities, self-report of abilities, and population-based proxy measures

Findings: underlying constructs and content varied widely none appeared to fully measure a person’s ability to seek,

understand, and use health information content focused primarily on reading comprehension and

numeracy scoring categories were poorly defined few indices had been assessed for reliability

Jordan JE, Osborne RH, Buchbinder R. Critical appraisal of health literacy indices revealed variable underlying constructs, narrow content and psychometric weaknesses. J Clin Epidemiol 2011;64:366-379

Conclusions: health literacy is not consistently measured this makes it difficult to interpret and compare health

literacy at individual and population levels empirical evidence demonstrating validity and reliability of

existing indices is required more comprehensive health literacy instruments need to

be developed

Long-term goals: Develop interventions to prevent health disparities related to literacy, language and culture

Short-term goals: Develop literacy-, language- and culture-fair tools for

patient-reported outcomes and patient education Develop better health literacy measures Validate these tools and measures in research and clinical

settings

1999-2002, Evaluate patient attitudes & preferences (Coleman Found.)

1999-2004, Develop TT/PP (R01-HS010333, TURSG-02-069-01-PBP)

2005-2009, Develop TT/PP health literacy measure (R01-HL081485)

2007- , Test TT intervention in cancer care (R18-HS017300) 2010- , Test TT/PP intervention in diabetes care (R18-

HS019335)

Health Disparities Research

A New Approach to Measurement of Health Literacy in English and Spanish (Hahn; R01-HL081485)

Health Literacy Assessment Using

Talking Touchscreen Technology(Health LiTT)

(Yost et al., Patient Educ Couns 2009;J Health Commun 2010;

Hahn et al., J Health Commun 2011)

Research on Health Literacy

Measurement

Literacy and Technology SkillsRequired to Function Optimally as a Patient1

Literacy

Oral

Listening2

Speaking

Writing Reading

Prose3

(Understand and use information from texts)

Document3

(Locate and use information from forms, tables, graphs, etc.)

Quantitative3

(Apply arithmetic operations usingnumbers in printed materials)

Technology

Computers MultimediaMedical

Instruments

Blue shading denotes areas of focus for R01-HL081485

2 Listening skills are needed to hear the recorded literacy questions, but these skills will not be specifically measured

3 Three types of scales defined for the 1992 National Adult Literacy Survey (NALS) and 2003 National Assessment of Adult Literacy (NAAL)

1 Adapted from: Speaking of Health: Assessing Health Communication Strategies for Diverse Populations, 2002; and Health Literacy: A Prescription to End Confusion, 2004.

The Talking Touchscreen(Hahn, PI: AHRQ/NCI #R01-HS010333)Hahn et al., Psycho-Oncology 2004; Qual Life Res 2007

La Pantalla Parlanchina(Hahn, PI: ACS #TURSG-02-069-01-PBP)

Hahn et al., J Oncol Manag 2003; Med Care 2010

The sound is very helpful because I don’t read too good and listening to the recording really helps.

It was easy to understand; it was fun. At the beginning, I thought I would not be

able to do the surveys, but it turned out to be very easy.

Helpful; gives you more privacy. It’s good that there’s a Spanish survey for

patients who don’t speak English. Interesting; every clinic should have one. It’s about time that someone thought

about doing something like this for us patients.

Health Literacy Study Rationale

unclear at what level low health literacy begins to adversely affect health and health care utilization

this may be due to the lack of precision for categorizing individuals in the marginal health literacy category

improving measurement in the “middle zone” will help: estimate the size of the population at risk from low health literacy identify vulnerable patients within a clinical setting

clinicians and researchers need precise, brief measures

that can be individually administered and scored in real-time to enable tailoring for the patient’s health literacy level to provide reliable & valid scores for use in testing

interventions need to distinguish between Literacy and Language

Barriers English and non-English measures must yield equivalent

information

R01-HL081485

Definition of Health Literacyfor Measurement Purposes

Capacity Application

Theoretical Actual

Read and comprehend health-related print material

Apply health-related information to a health care situation and understand what an appropriate decision or behavior SHOULD be

Implement an appropriate decision and related behavior in the management of one’s own health

Identify and interpret information presented in graphical format

Perform arithmetic operations

R01-HL081485

Capacity to obtain information (i.e., information-seeking) is a navigation skill that will not be included at this time.

Item Examples

Health Literacy Assessment Using Talking Touchscreen

Technology

(Health LiTT)

R01-HL081485

Patient Evaluation of Health LiTT(n=610 English-speaking primary care patients)

Any difficulty using Not at all the touchscreen? A little bit Somewhat or quite a bit

93% 6% 1%

Ever feel Not at all uncomfortable, A little bit anxious, nervous? Somewhat or quite a bit

86%11% 3%

Overall rating of Poor or Fair screen design Good Very Good Excellent

4%24%33%39%

Burden of 30 health Too many literacy questions About right (avg. 18 minutes) Could have answered more

14%58%28%

Rating of study Worse than expected participation About the same as expected A little better than expected A lot better than expected

2%23%28%47%

###### | ~ ~ ########### | | | | | | ############ | | | ########## | | | ########## | card10 | card7c | card8a ###### | card9 | ####### | card8b | card6 ##### | card3a card7b | ##### | card4 | card3b card7a #### | | ## | | ## | | card2 # | card5a card5b | | card1c | | card1a card1b | # | | ~ ~ #### |

High Literacy

Low Literacy Easy Items

Hard Items

# represents 18 people

Mean patient score→

←Mean item difficulty

Need items for high literacy people

###~###~ ### ↑ | EIZ3Q5 # | ECA4Q1 ### | ### | #### | # | ########### | # | #### | EMH4P1 #### | EAS5Q1 EIN1Q4 ####### | EDB2D3 ##### | EAS2D2 EIC1Q3 ############ | ECA1P2 ECA3Q1 EIN1Q2 EIZ3P2 ######### | ECA5Q1 ########## | EIZ3Q4 ####### | EIZ2P1 EMD2Q3 ####### | ECA3Q2 EIN1Q8 ########## | EHT3D3 EIZ3Q1 EMD2Q2 ########## | ECA5D1 EOB2P2 EOB3D2 ####### | EIZ1P1 EMH1Q1 EOB3D1 ####### | EDB3Q1 #### | EMH3P1 EOB1P2 ######## | EAS5D2 ECA4Q2 EDB2D2 ####### | ECA1P1 ECA2P1 EDB5Q1 EIC1P10 EIN2P4 EIZ3D4 EIZ3Q2 EMH2D3 ####### | EDB4P4 EHT1P2 EHT3D4 EIZ3D1 EMD2D2 ##### | EAS2D1 EAS4P1 EDB2D1 EDB3P5 EDB5Q3 EHT1P6 EHT3Q1 EIN1D3 EIN1D7 EMH2P1 EOB3Q1 ### | EDB5P2 EOB5P5 ##### | EIC1P3 EIN1D1 EOB1P4 ### | EIN1Q10 EIN1Q5 EIZ3D3 EMD4D1 EMH5P1 EOB2P10 ### | EHT1P3 EIC1P7 #### | ECA4P1 EDB3D1 EDB3P1 EDB3P4 EIC1D2 EIN1D4 EOB5P2 ### | EDB5Q2 EIC1P8 EMD2D3 EOB2P4 ## | EAS5D1 EIC1P9 EIN2D3 ## | EIC3P8 | EDB3D2 | EHT2P1 EIN1Q9 ~ EIC1P6 ↓ EAS1P1

High Literacy

Low Literacy

Hard Items

Easy Items

# represents 3 patients

Mean Patient Score →

← Mean Item Difficulty

Item Response Theory Analysis Results (1-p model)

(n=616 English-speaking primary care patients)

Item Information and Reliability, and Distribution of Person Scores Estimated by the Final 2-PL Calibration

Model(n=608 English-speaking primary care patients)

PI: Hahn; R01-HL081485Hahn et al., J Health Commun 2011T-Score

rel.=.90

rel.=.95

0

10

20

30

40

50

60

Info

rmat

ion

20 30 40 50 60 70 80

Document

Prose

Quantitative

Health Literacy Screeningin Clinical Practice?

Depends on how the data are used. Screening can identify individual patient needs.

this may be especially valuable when comprehension of health information is critical (e.g., when patients need to make decisions regarding stem cell transplant or hospice care)

Health literacy data aggregated at the clinic level can help identify what education materials and communication strategies are appropriate and gauge the effectiveness of practice changes after they are implemented.

Garcia, et al. J Support Oncol 8:64-69, 2010.

To justify screening, several conditions must be met:

1. screening tests need to accurately and reliably detect limited literacy

2. the benefit of early treatment options to reduce adverse health outcomes must be proven and available

3. the benefits need to outweigh adverse effects of the program (U.S. Preventive Services Task Force, AHRQ, 2006)

Risks: literacy screening programs could negatively impact patient care by promulgating fear and labeling

Paasche-Orlow & Wolf. J Gen Intern Med 23:100-102, 2008.

Health Literacy Screeningin Clinical Practice?

What do patients think?

Agree that it is important for doctors/nurses to know about their patients’ reading abilities

p=0.469 p=0.334 p=1.000

PI: Hahn; Coleman Foundation

Willing to have results of literacy survey given to my doctors and nurses

p=0.697 p=0.157 p=0.189

PI: Hahn; Coleman Foundation

Many Patients Reported That They Learned Something by completing

Health LiTT

It was nice because it showed me and educated me on drug addiction, mammograms, and how to read charts.

Very interesting; learned a lot. It was very interesting. It showed me about my

diabetes and cancer and high blood pressure. It's very informative about different illnesses. It

educates and teaches us how to take control of our health.

Very informative; learned a lot of things I didn’t know about my health. PI: Hahn; R01-HL081485

Health LiTTImplications for

Policy, Practice or Delivery A bilingual, computer-adaptive test of health literacy

will enable clinicians and researchers to more precisely determine at what level low health literacy begins to adversely affect health and health care utilization.

This tool will provide better opportunities to determine the independent effects of limited English proficiency and limited health literacy.

By using novel computer-based methods for health literacy assessment, this tool will increase the access of underserved populations to new technologies, and contribute information about the experiences of diverse populations with new technologies.

Health Literacy Universal Precautions Toolkit

AHRQ Publication No. 10-0046-EF, April 2010. http://www.ahrq.gov/qual/literacy/index.html

What Are Health Literacy Universal Precautions? taking specific actions that minimize risk for everyone when it is

unclear which patients may be affected e.g., health care workers take universal precautions when they

minimize the risk of bloodborne disease by using gloves and proper disposal techniques

How Can This Toolkit Help? Experts recommend assuming that everyone may have difficulty

understanding and creating an environment where all patients can thrive.

Research suggests that clear communication practices and removing literacy-related barriers will improve care for all patients, regardless of their level of health literacy.

This toolkit is designed to help adult and pediatric practices ensure that systems are in place to promote better understanding by all patients, not just those you think need extra assistance.

Research on Patient-Centered Care

Improving the delivery of patient-centered health information is especially important for vulnerable populations, e.g., patients with limited economic resources, low literacy skills or racial/ethnic minority status.

These patients experience greater disease burden, are less informed about diagnosis and treatment, are less involved in disease management, are less likely to ask questions of providers, and are less likely to be satisfied with communication with their providers.

Traditional patient education relies heavily on written material. However, these materials are often written at high reading levels with poor usability characteristics for patients with lower literacy.

The use of new information technologies is a recommended strategy to improve access to health information and to enhance the quality of communication.

We are conducting two research projects that are relevant to the overarching goal of Healthy People 2010 and 2020 of Eliminating Health Disparities.

the focus area of Health Communication and Health IT endorses the strategic use of communication and health information technology to improve health

Figure 1.1 Clinicians, patients, relationships (clinical and social), and health services are all integral to patient-centered care. The interactions among these elements are complex (Epstein et al, 2005) and deficits in any one area can significantly decrease the quality of patient care. [from 2007 NCI/NIH Pub. #07-6225 “Patient-Centered Communication in Cancer Care”]

Cancer Patient Education Software for English-speaking cancer patients: Cancer Care Communication (C3) (Hahn; R18-HS017300)

Diabetes Patient Education Software for English- and Spanish-speaking patients with Type 2 Diabetes: Innovative Adaptation and Dissemination of AHRQ Comparative Effectiveness Research Products (iADAPT) (Hahn; R18-HS019335)

Strategies to Overcome Literacy Barriers

Radiation Therapy External Beam

Chemotherapy How Given

Chemotherapy Intravenous

Patient Evaluation of CancerHelp-TT in Field Test(n=13 English-speaking cancer patients)

Any difficulty using Not at all TT for questions? A little bit

n=11n= 2

Any difficulty using Not at allCancerHelp-TT? A little bit

n=12n= 1

Ever feel Not at all uncomfortable, A little bit anxious, nervous?

n=12n= 1

Overall rating of Very good screen design Excellent Poor, Fair, Good

n=12 n= 1 ---

Overall, how easy Very easyor hard to use? Easy Hard, Very hard

n=10n= 3 ---

Characteristics of Cancer Patients Enrolled in C3 (n=127) (thru 10/15/11)

Female 83%

Age, years mean (SD) range

52 (10)26 - 70

Race, ethnicity HispanicBlack, non-HispanicWhite, non-HispanicOther, non-Hispanic

22%58%14%6%

How much have you looked at booklets or on the Internet for information about health or cancer? (C3 Baseline, n=30)

Booklets or Pamphlets

Internet

Not at all 13% (n=4) 45% (n=13)

A little bit 23% (n=7) 17% (n=5)

Somewhat 23% (n=7) 7% (n=2)

A lot 40% (n=12) 31% (n=9)

Adapted from Degner et al. J Nurs Meas. 1998; 6:137-153.

Baseline: <1% (n=1) 11% (n=12) 52% (n=58) 29% (n=33) 7% (n=8)

C3 Discussion and Implications

Talking Touchscreen (TT) is a practical, user-friendly method for assessment of patient-reported outcomes

CancerHelp® patient education program has been a valued resource since 1994

Purpose of integrating these two HIT applications:• to improve access to health information• to enhance the quality of health care communication

CancerHelp®–TT:• meets security requirements in DHHS Automated

Information Systems Security Handbook• programmed as a flexible, web-based research

application that could be linked to an EMR system

Thanks to the agencies that funded this research: AHRQ, NCI, NHLBI, ACS, Coleman!

Thanks to the dozens of co-investigators, collaborators, consultants and research staff who

contributed to these projects!

Thanks to all the patients and community members who participated in our research projects!

What questions do you have?