Literacy Assessment In Health Care“Is the Cheese Moving?”

Terry Davis, PhDProfessor of Medicine and Pediatrics

LSUHSC

Russ Rothman, MD, MPPAssociate Professor of Medicine and Pediatrics

Vanderbilt

Elizabeth Hahn, MAAssociate Professor of Medical Social Sciences

Northwestern

Lauren McCormack, PhD, MSPHDirector, Health Communication

RTI

1

Measurement

•Where we have come from•Where we are now

• Numeracy, pediatrics, language

•Where we are going•What we are measuring and why

•Do we lack conceptual agreement on health literacy?•New modes of data collection•Challenges and opportunities

2

Standard of Literacy Changes with Demand of Society

• Signing name (civil war)

• 3rd, 4th grade education (CCC, WWII)

• 8th grade education (war on poverty)

• HS diploma/GED (today’s GI)

• College or more (emerging globaleconomy)

3

Toward a Literate Society*

Any national program to improve literacy skills needs to be based on the best possible information on the deficits and their severity.

1988 – Congress asked DOE to define literacy and address need for information on the nature and extent of adult literacy.

*1975 Carroll, Chall 4

Literacy A National Problem Limiting U.S. Competitiveness

1990 – Governor’s conference set goal By year 2000 every adult American will be literate and possess knowledge and skills to compete in global economy.

1991 – National Literacy Act

5

National Literacy Act

“…at a level needed to function on the job and in society to achieve ones goals and develop ones knowledge and potential.”

Literacy

WriteSolve

ProblemsRead

Speak in English

Compute(Math Skills)

1991; 1992 National Adult Literacy Survey; Kirsch, 20016

National Literacy AssessmentsPrevalence of low literacy 13-59% (pre-NALS)

• Profiles of America’s Young Adults (21-25) 1971-1992 (literacy lower in 92)

• English Language Proficiency Study (1980 census)

• Literacy proficiency in job seekers 1990 (DOL)

• NAEP. Nation’s report card 1984-2004 (4th, 8th and 12th graders)

• NALS 1993

• Adult Literacy in US (4 military, 6 civilian assessments 1917-1986) (Sticht and Armstrong) 1994

• NAAL 2003 (H.L. component)

• HALS 2004 (linked to NALS database)

• NAAL 2016 (internet component) 7

Literacy Rates By State(National Adult Literacy Survey)

National Institute for Literacy 1998

> 30%

20% to 30%

15% to 20%

< 15%

% Adults with Level 1 Literacy Skills

21% U.S. Adults are Level 1 8

Literacy Assessment In Healthcare Where I’ve Come From

1987-2009

I was once “homeless” 9

Davis Fam Practice 1990, Davis Fam Med, 1991, 1993, Davis Pediatrics 199410

Academic Achievement•PIAT-R

•WRAT-R

Word Recognition•SORT-R•REALM

Raw scores translate to grade level estimates.

Test of Functional Health Literacy in Adults (TOFHLA)

• 3 reading comprehension sections (close technique) and a numeracy section

• English and Spanish

• Long and short versions.

• Translates into three categories0-16 Inadequate functional literacy

17-22 Marginal functional literacy23-36 Adequate functional literacy

Parker J Intern Med 1995, Williams JAMA 1995, Baker Patient Educ Counseling 1999

Health Literacy is BrandedAMA 1999, NLM 2000 IOM 2004, Healthy People 2010

– “the degree to which individuals have the capacity to obtain, process, & understand basic health information & services needed to make appropriate health decisions.”

HHS, National Institutes of Health, National Library of Medicine (NLM). Health Literacy, January 1990 Through 1999. NLM Pub. 2000, vi.

12

Dual Nature of Health Literacy

Literacy and Health in America• Conceptualize H.L. framework• Looks at populations (vulnerable) and complexity of

material and demand on the individual• Linked literacy to disparities in healthcare

Meaning and Measure of HL

Healthy People 2010Objective 11: Improve health communication and literacy• Improve health literacy (both individual skills and

materials)• Increase research and evaluation in health

communication13

Rudd, 2004, Baker, 2006

Health Literacy is More Than Individual Ability

14

Ruth Parker

But what are we assessing?

Literacy Tests Cited In LiteratureTest Year Type # Cites

WRAT-R3 65, 95 Word recognition >2000

REALM* 91,93 Health word recognition 472

TOFHLA* 95 Comprehension of health materials

393

S-TOFHLA* 99 Comprehension of 2 health forms

249

HALS 04 Use print materials to accomplish health tasks

45

N.V.S. 05 Comprehension, numeracy interpretation food label

95

* Highly predictive of health outcomes.15

Literacy Tests Cited In LiteratureLiteracy Tests Cited In LiteratureTest Year Type # Cites

MART 97 Medical word recognition 23

LAD 01 Diabetes word recognition 16REALM-R 03 Health word recognition (11) 42REALM-SF 06 Health word recognition (7) 1

REALM-Teen 06 Adolescent health word recognition

18

SAHLSA 07 Spanish word recognition and comprehension

21

16

Literacy Tests Cited In Literature“CAGE” questions

3 Screening questions Year Type # Cites

Williams 95 Self-report

Bennett (parents) 03 Self-report 27Chew 04 Self-report 701 question

Wallace 06 Self-report 31Chew 08 Self-report 70

17Can be given over the phone

Demographics: age, ethnicity, education?

Assessing HL of Population2003 NAAL: 1st large scale national literacy assessment

to contain a component designed specifically to measure health literacy in US adults

• 19,000 adults in U.S. households and prisons

• 152 tasks (28 health related), 40 (8 health) given to each adult

• Oral reading fluency added to better understand reading difficulty– 2 passages (3-5th grade and 7th to 8th grade)– Fluency = words read correctly/minute

• Supplement assessment for adults very low literacy (navigating/understanding) Vicks 44 + 8 other “stimulus” items– 10 questions asked for each stimulus

18Sheida White

Several factors affect an individual’s performance on any given task.

Key conceptual features continued

19Sheida White

Hispanic

NAAL Health Literacy Data*NAAL Health Literacy Data*

Basic

BelowBasic

Proficient

14%

12%

53%

22%

National Assessment of Adult Literacy (NAAL): National Center for Educational Statistics, U.S. Department of Education, 2003.

Intermediate

Average

Medicare

20

*Correlation HL & NAAL prose .87

Current Population Testing Issues• FDA requires industry to test consumer understanding

of OTC & Rx information – what % sample low literacy?

• “Mall intercept” is standard. Is it representative?

• Testing patient literacy level alone will not confirm ability to navigate, understand and act on health information and manage care.

• Need studies assessing navigation, comprehension, self-care and actual use of medication.

• These can then be correlated with literacy level to give an estimate of an individual’s OTC (or other domain specific) health literacy. 21

Considerations in Testing in Health Care Research

• Reports in literature• Validity/ Reliability• Cost• Training required• Ease and method of administration

(in person, phone, computer)• Time required• Age, language, cognitive ability of patients

• Confidentiality 22

Cautions• All existing tools measure literacy in health context (i.e.

not health literacy).

• Current tests do not include children or languages other than English, Spanish

Developers of commonly used tests:*• Do not recommend testing patients clinically UNLESS

providers are willing to alter communication.

23*Davis, Parker, Weiss

The Conundrum of Measuring Health Literacy

24

• Lack of conceptual agreement on meaning of health literacy

• Are we only measuring individual skills?

• Can health literacy (as we are measuring it) be improved?

• What interventions improve scores on health literacy tests?

• Will higher scores translate to improved health outcomes?

WHAT IS HEALTH

LITERACY?

Challenges and Opportunities• What literacy or HL skills are needed today?

– What skills/demands do we anticipate for tomorrow?

• Can health literacy of U.S. population be tracked?– Difficulty in tracking L or HL is that the “cheese

moves” and demands become more complex

• Do literacy or HL include navigating the internet?

• Can NAAL questions and database be released?

25

Is This the Dawning of the Age of Aquarius?

Russell Rothman• Numeracy’s emergence• Assessing parents/children

Beth Hahn and Lauren McCormack• NIH funded development of HL assessments• Novel computer based methods of data

collection• New psychometric methods 26