Overview of Symposium: A JOURNEY TOWARD

MEASURING CAM HEALTH LITERACY

The Research Team

Jean Shreffler-Grant, PhD, RNProfessor

Montana State UniversityCollege of Nursing

Bozeman, MT

Elizabeth Nichols, DNS, RN, FAAN

Professor Emerita, Research ScientistMontana State University

College of NursingBozeman, MT

Clarann Weinert, SC, PhD, RN, FAANProfessor Emerita, Research Scientist

Montana State UniversityCollege of Nursing

Bozeman, MT

Bette Ide, PhD, RN, FAANProfessor - retired

University of North DakotaGrand Forks, ND

Funding

• NIH/NCCAM R15 AT095-01• NIH/NINR 1 P20 NR07790-01• MSU College of Nursing Block Grant• NIH/NCCAM R15 T006609-01

Purpose of Symposium

-Share highlights of instrument development journey traveled by research team-Paper #1 – research that serves as foundation for measurement of CAM Health Literacy-Paper #2 – conceptual model that serves as map for measurement journey-Papers #3 and #4 – early and current steps in journey to develop CAM Health Literacy Scale

Ultimate travel destination:- Promote and improve health literacy about CAM among older rural adults, particularly those with chronic health conditions

A Journey Toward Measuring CAM Health Literacy

Jean Shreffler-Grant, PhD, RNProfessor

Montana State University College of Nursing

Bozeman, MT

• Purpose of paper = describe research that began journey toward measurement of CAM health literacy

• Health literacy essential today• 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” (Healthy People, 2010)

• Functional literacy a stubborn problem• In health care situations, functional literacy

not sufficient • 9 of 10 adults have difficulty using everyday health information• Limited health literacy associated with negative health outcomes, health disparities, significant societal costs

• Complementary & alternative therapy (CAM) adds to complexity of health care decision making

• CAM often self-prescribed, less regulated or controlled

• Consumers make decisions about health care; use self care practices

• Decisions made independent of health care providers; use advise of family, friends, neighbors

• National studies demonstrated use of CAM more common than previously thought

• Little known about CAM use among rural residents

• Series of studies conducted by team on CAM use, cost, satisfaction, why CAM used, sources of information about CAM

• Data collected by telephone interview with randomly selected and purposive samples

• Focus on older rural adults• Quantitative and qualitative analyses used to

answer research questions, summarize results, identify predictors of use, identify themes

Results

• Older rural residents used as much or more CAM than national samples

• CAM use associated with chronic health conditions

• Used self-directed self-prescribed CAM• Learned about CAM by word of mouth, media

Results - continued

• Used CAM inconsistently, did not know what CAM products did

• Did not seek information about effects or risks of CAM from reliable sources

• Did not communicate about CAM use with regular health care provider

Implications

• Questions about health literacy in the context of CAM use

• Need for education • New instrument needed • Existing health literacy instruments measure

basic reading, math skills in allopathic context

Journey began to develop the CAM Health Literacy Scale

A GUIDE ON THE MEASUREMENT JOURNEY: A CONCEPTUAL MODEL

Clarann Weinert, SC, PhD, RN, FAANProfessor Emerita

Montana State UniversityCollege of Nursing

Guide to Instrument Development Process - Robert DeVellis’ scale development guidelines

DeVellis, R. (2003). Scale development: Theory and applications. (2nd ed.) Thousand Oaks, CA: Sage.

Map to guide the Journey

DeVellis’ Guidelines for Scale Development

Step 1

Construct determination

Step 2 Generate item pool

Step 3 Determine measurement format

Step 4 Review of item pool

Step 5 Consider validation items

Step 6 Administer to development sample

Step 7 Evaluate items

Step 8 Optimize scale length

CAM Health Literacy

Information about CAM needed to make informed self-management decisions about health

Antecedents

Constructs

Environment Information SeekingHealth/Illness Trajectory General Health Literacy

Outcome

Construct

Informed Self Management of Health.

CAM Health Literacy

Concept - Dose is the amount of CAM

Empirical indicators -Frequency – how often

taken/used Strength/amount – quantity to take/use

Duration – length of useRoute – way to use

CAM Health LiteracyConcept – Effect is what the user

expects the CAM to do

Empirical indicators -Effect evaluation – what the CAM does or is intended to do Treatment replacement/addition – whether the user substitutes/adds Tradeoffs – what the user is willing to give up (or take on).

CAM Health LiteracyConcept – Safety is the information

needed to minimize harm. Empirical indicators -

Empirical validation – demonstrated therapeutic effectiveness Quality - information from reputable sourcesSource of information – reputable and professional sources

Risk –potential interactions/adverse reaction

CAM Health Literacy

Concept – Availability is specific CAM reasonably available.

Empirical indicators -Accessibility – whether CAM can be obtained within a reasonable distanceCost – whether CAM is affordable

COMPANIONS ON THE JOURNEY

Expert panel

The MSU Conceptual Model of CAM Health Literacy

• Goes beyond just the reading and computational skills

• Expands the conceptualization of health literacy in a context different than allopathic health care

• Serves as a conceptual guide to the development of a measure of CAM health literacy

Bette A. Ide, Ph.D., RN, FAAN Professor – retired

University of North DakotaIndependent Consultant

Beginning Steps on the Journey

LACK OF CAM HEALTH LITERACY:CONSEQUENCES

• Consumers may not know appropriate choices• Consumer may fall victim to scams or

unscrupulous sales practices• Consumers may ingest potentially harmful

substances

GOAL

Develop a sound instrument to measure CAM health literacy

THE NEXT STEPS

• First step = Development of the Conceptual Model of CAM Health Literacy

• Next Steps– Generate an item pool– Determine a format for measurement– Review items

DeVellis Guidelines for Scale Development

Step 1 Construct determination

Step 2 Generate item pool

Step 3 Determine measurement format

Step 4 Review of item pool

Step 5 Consider validation items

Step 6 Administer to development sample

Step 7 Evaluate items

Step 8 Optimize scale length

GENERATE ITEM POOL• Items to measure the four indicators in the model

– Dose– Effect– Safety– Availability

• Items written in “plain language”• 8th grade or less reading level• Conceptual definitions for each of the indicators• Knowledge or understanding type items

DOSE

DefinitionThe amount of biologically based CAM practice or product

to use: Frequency, strength/amount, duration, and route.

Sample Items• Understanding how often I have to take the herbal

product.

• Knowing if I need to take an exact amount of the herbal product.

EFFECT

Definition What the user expects the practice to do: effect evaluation, treatment replacement/addition, tradeoffs.

Sample Items• Knowing that other herbal products have been helpful

for a family member.• Understanding how the herbal product works with my

prescription medication.

SAFETY

Definition Information needed to minimize harm when using a specific biologically based practice: empirical validation, quality of practice or product, source of information, risk.

Sample Items• Knowing where the herbal product is made.

• Knowing how to judge information from the internet about this herbal product.

AVAILABILITY

Definition Whether or not the practice or product would be reasonably available: Accessibility, cost.

Sample Items• Knowing if the herbal product is hard to get.

• Knowing I would pay less for the herbal product than for prescription medicine.

SCALE FORMAT

• Scale – 6-point Likert scale response – Equally weighted items

• How important it would be to know or understand certain things before deciding to use an herbal product

DIRECTIONS

• Directions for a telephone interview

• I’m going to read you a list of things that might be important to know about an herbal product before deciding to use it. And I am going to ask you to rate these things on a scale of “1” for NOT IMPORTANT TO ME to “6” for VERY IMPORTANT TO ME.

Review of Item Pool

• Panel of experts– CAM– Instrument development

Experts sent information about the purpose of the study, definitions, and the pool of potential items

RESULTS

• 51 items retained

• Short introductory script developed

NEXT STEPS ON THE JOURNEY

• Continual iterative process

• Step 4 completed with reviews of the item pool by potential respondents and providers

• Administration to development sample and final validation

Today on the Measurement Journey

Elizabeth G. Nichols, PhD, RN, FAAN Professor Emerita

Montana State UniversityCollege of Nursing

DeVellis Guidelines for Scale Development

Step 1 Construct determinationStep 2 Generate item poolStep 3 Determine measurement formatStep 4 Review of item poolStep 5 Consider validation itemsStep 6 Administer to development sampleStep 7 Evaluate itemsStep 8 Optimize scale length

Focus Groups• 4 focus groups

– 2 of community dwellers– 2 of providers

Community Dwellers

• N=13• Age: 50-75• Gender: 12 female, 1 male• Marital status: 3 married, 3 divorced, 7

widowed• Education: all high school, 5 college or higher• Living situation: generally independent

Providers

Allopathic Group, n=5Age: 41-60Gender: 2 male, 3 femaleProvider type: 3 MD, 1 PharmD, 1 NP

Providers

CAM Group, n=6Age: 31-60Gender: 1 male, 5 femaleProvider type: Physician assistant, nurse practitioner,

body talk practitioner/instructor, naturopathic physician, massage therapist/body talk practitioner

What the Groups Said:

• Community: – Instructions too long– Response option too complicated (6 point scale)– Many items could be yes/no– Items themselves were clear

• Providers:– Some important areas missing

What we did:• Added items on “organic”• Developed two versions of instrument

A two choice response option (agree/disagree)A four point scale (agree strongly to disagree strongly)

• Added a question on ease of completion of medical forms

Development Sample

• Telephone interviews by professional interview company

• 1200 total respondents– 600 for version A (2 point scale)– 600 for version B (4 point scale)

Results

• No difference between two samples (A & B) on demographic indicators

• Correlations and factor analysis completed for version B (4 point scale)

• Based on these analyses, instrument decreased to 25 items.

Next Steps

• Factor analysis of Version A– Two option response set– Comparison with analysis of Version B

External Validity

• Validation sample: – 75 community dwelling elders

• Validation instruments:– STOFHLA– Marlow-Crowne– Demographic data questionnaire– Medical form completion item

Next Steps

• Validation sample: – 75 community dwelling elders

• Validation instruments:– STOFHLA– Marlow-Crowne– Demographic data questionnaire– Medical form completion item

Questions

• A Journey Toward Measuring CAM Health Literacy: Dr. Jean Shreffler-Grant

• A Guide on the Measurement Journey: A Conceptual Model: Dr. Clarann Weinert, SC

• Beginning Steps on the Journey: Dr. Bette A. Ide

• Today on the Measurement Journey: Dr. Elizabeth Nichols