Changing Public & Patient Behavior:

Theory, Evidence, Planning

Training in Clinical Research

Translating Evidence Into Practice April 29, 2008April 29, 2008

Rena J. Pasick

Cancer screening disparities

Intervention evidence

Behavioral theory and culture

Planning

Trends in Early-Stage Female Trends in Early-Stage Female Breast Cancer Incidence by Race/Ethnicity Breast Cancer Incidence by Race/Ethnicity

California, 1988-1999California, 1988-1999

30

40

50

60

1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999

Per

cen

t

Af. Am. N-H White Hispanic Asian/PI

Source: Cancer in California, 1988-1999. California Department of Health Services, December 2001.

Mammography Status in a Multiethnic* SampleAlameda County Women, 40-74

Pathfinders Baseline Survey, 1999-2000 (n=1463)

Language n Mammography (%)Recent** Not recent Never

English 1016 60.2 29.3 10.4

Cantonese 171 50.3 26.3 23.4

Tagalog 56 48.2 33.9 17.9

Spanish 220 58.6 25.9 15.5

*African American, Chinese, Filipina, Latina, White women, ** Within 15 months of interview

Cervical CancerCervical CancerAverage Annual Age-Adjusted IncidenceAverage Annual Age-Adjusted Incidence

US, 1988 - 1992US, 1988 - 1992

0

5

10

15

20

25

30

35

40

45R

ates

per

100

,000

White Black Hisp Chin Fil Viet

SEER, 1996

Research Background

Breast & Cervical Cancer Intervention Study (BACCIS)

1991 - 1996 NCI

Low-income African American, Latina, Chinese, & White women N = 3216

Pathways to Early Cancer Detection in Four Ethnic Groups

1992 - 1997 NCI

African American, Latina, Vietnamese, Chinese, & White women N = 4228

Early Cancer Detection Among Filipino American Women

1994 - 1998 DOD

Filipinas - interviewed in English, Tagalog, Ilocano, & Cebuano N = 875

Cancer Screening, Managed Care and the Underserved

1998 - 2002 NCI

Low-income African American, Chinese, Filipina, Latina, & White women N= 3100 (est.)

Research Background (con’t)

Behavioral Constructs and Culture in Cancer Screening

2001-2007 NCI

Filipina & Latina Women

Qualitative

Cross-Cultural Communication for Colorectal Screening

2002-2006 NCI

African American, Chinese, and Latino primary care patients at Kaiser & community clinics

Formative study/pilot

Statewide Communication to Reach High-Risk Low-SES Women for Research and Prevention 2007-2012 NCI

African American, Latino, Chinese, Vietnamese & Korean women calling statewide Everywoman Counts toll-free line

Cancer screening disparities

Intervention evidence

Behavioral theory and culture

Planning

Interventions

Access Enhancement

laws non-clinical settings cost reduction eliminate structural barriers multi-component

Promotion mass media small media small group education one on one education incentives reminders multi-component

Briss PA et al, Am J Prev Med 2000Rimer BK et al, Pub Hlth Rep 1993

Cancer Screening Intervention Research

Large body of research Extensive array of barriers identified Many effective interventions Extent to which interventions sustained

“disappointing” Few interventions found effective are

disseminated Multilevel theoretical and conceptual

approaches are needed to understand the full context of cancer screening

Meissner H, 2004; Rakowski W, Breslau E. 2004

Lesson 1Virtually all major types of community-based cancer screening interventions have been found to be effective in some studies. However, no interventions work for all people, screening tests, or in all settings.

Pasick, Hiatt, Paskett. 2004

Focal Point

• Target population• Setting• Screening objective

Research

•Fundamental

research

•Intervention

research

Intervention Strategies

•Access enhancement•laws•non-clinical settings•cost reduction•eliminate structural barriers•multi-component

•Promotion•mass media•small media•small group education•one on one education•incentives•reminders•multi-component

“Focal Point” Framework

Fundamental researchFundamental research(basic behavioral research)

Develop/refine the mechanisms that lead to intervention outcomes

- theory & measurement

- messages

- communication channels

Research

• Fundamental

research

• Intervention

research

Intervention research

Optimal intervention for the “focal point” is identified, implemented accurately, evaluated rigorously, and replicated.

- formative evaluation

- process evaluation

- assessment of outcomes- including cost-effectiveness

Research

• Fundamental

research

• Intervention

research

Brilliant points of light…..

Research

• Fundamental

research

• Intervention

research

…punctuating vast empty spaces

Interventionresearch

Fundamental

research

Cancer screening disparities

Intervention evidence

Behavioral theory and culture

Planning

On the one hand…..

the reason for theory is to help guide the selection of important constructs thought to exert impact on health behavior

Crosby et al. 2002

On the other hand…

Crosby et al., 2002

By targeting a specific range of theoretically important constructs for examination or as a foundation for designing health promotion programs…

theory limits the breadth of observations and investigations and the scope of intervention

Limitations of Theoryfor Disparities Populations

Origins of theory Measurement Decontextualization Focus on cognition

TheoryTheory

MeasuremeMeasurementnt

Interventions &

MessagesMessages

MeasurementMeasurement

• Intention measurement includes action, target, time:

I intend to get a mammogram in the next 12 months

extremely unlikely :___1__:___2__:___3__:___4__:___5__:___6__:___7__: extremely likely

• Pathfinders translation/adaptation for 5 race/ ethnic and 4 language groups:

Do you plan to have a mammogram in the next 12 mos?

yes no

Perceived Benefits of Mammography

in a Multiethnic, Multilingual Sample (n=1463)

Perceived Benefits

of Regular Mammography

at baseline

Good for Family

(% agree)

Peace of Mind

(% agree)

Early Detection

(% exc./good)

Afr Amer 90 91 95

Chinese 97 98 71

Filipina 95 93 93

Latina 93 95 85

White 86 84 98

Overall 91 92 90

p-value 0.001 0.001 0.001

Perceived Benefits &Regular Mammography

in a Multiethnic, Multilingual Sample (n=1463)

Perceived Benefits

of Regular Mammography

at baseline

Regular

Mammograms

at baseline

Good for Family

(% agree)

Peace of Mind

(% agree)

Early Detection

(% exc./good) (% had)

Afr Amer 90 91 95 51

Chinese 97 98 71 39

Filipina 95 93 93 43

Latina 93 95 85 39

White 86 84 98 55

Overall 91 92 90 47

p-value 0.001 0.001 0.001 0.001

Sample sizes at baseline & final surveys: Afr Amer (497, 407) Chinese (199,154) Filipina (167,121)

Latina (300, 235) White (300, 258)

† within 15 months * OR adjusted for race/ethnicity NOTE:p-value for diff in OR by race/ethnicity = 0.0052

Recent Mammogram at Final Surveyvs. Intention at Baseline

<0.0001

<0.0001

0.1182

0.1325

0.0440

0.0751

P-value

2.7 (2.0,3.7)

8.3 (4.2,16)

1.8 (0.8,4.0)

2.1 (0.8,5.8)

2.4 (1.0,5.9)

1.7 (0.9,3.0)

OR* 95% CI

60%76%

No/DK 229 (19%)

Yes 946 (81%)

All

38%84%

No/DK 50 (19%)Yes 208 (81%)

White

53%68%

No/DK 30 (13%)Yes 205 (87%)

Latina

60%76%

No/DK 20 (17%)Yes 101 (83%)

Filipina

77%89%

No/DK 73 (47%)Yes 81 (53%)

Chinese

61%72%

No/DK 56 (14%)Yes 351 (86%)

Afr Amer

Recent mammogram†

at final survey (n=1175)%

Intend to get mammogram next 12 months at baseline (n=1463)

Intend n (%)

Summary: 3Cs Quantitative FindingsPathfinders Baseline & Final Surveys*

performed as expected– self-efficacy predicted recent screening longitudinally

across ethnic groups– subjective norms was associated with mammography

cross-sectionally

differential predictive strength by ethnicity

– intention– perceived benefits

no evidence of association – perceived susceptibility

* 5 Race/ethnic and 4 language groupsStewart SL. Behavioral Constructs and Mammography in Five Ethnic Groups (in progress)

Data Quality in Multiethnic Health

Surveys

• A study to assess the validity and comparability of survey questions across cultures and languages

• Mixed methods to explain findings and understand more complex meaning

• Survey instruments & quantitative data from 3 multi-lingual breast & cervical screening intervention studies

– Data from 3 studies (6760 interviews)

Pasick, RJ, Stewart SL, Bird JA, D’Onofrio CN. 2001Data Quality in Multiethnic Health Surveys - Public Health Reports 116: 223-243,

Quality of multi-ethnic, multi-lingual data should be Quality of multi-ethnic, multi-lingual data should be regarded as questionableregarded as questionable

Measurement is affected by complex factors not Measurement is affected by complex factors not readily observed or understood through standard readily observed or understood through standard teststests

Objective items present fewer problems than Objective items present fewer problems than attitudinal itemsattitudinal items

All are subject to translation difficulties & lack of All are subject to translation difficulties & lack of cross-cultural comparabilitycross-cultural comparability

Data Quality in Multiethnic Health

Surveys

MeasurementMeasurement TheoryTheory CommunicationCommunication

Ways of communicating

Stated values & beliefs

ImagesUnderstandingCulture

Culture

a system of knowledge that allows us to know how to communicate with others and how to interpret their behaviors (Gudykunst, 1998)

High Context Communication

• Associated more with collectivist cultures*

• Very little information is in coded, explicit, transmitted part of the message**

Low Context Communication

• Associated more with individualistic cultures*

• Explicit, direct, precise messages

* Gudykunst & Ting-Toomey, 1988** Hall, 1976

Scene: Scene: Anglo MD recommending CRC Anglo MD recommending CRC screening to Chinese patientscreening to Chinese patient

MD prescribes med for presenting MD prescribes med for presenting GI GI complaint…complaint…

Hypothetical Vignette based on Communicating Effectively with the Chinese*

* G Gao, S Ting-Toomey 1998 - Sage Publications

Anglo MD & Chinese patient (con’t)

MD: “You’re now 51. At this age your risk of CRC cancer goes up. I’d like you to start doing yearly stool tests and to have a test called a sigmoidoscopy every 5 years. Here’s a booklet that describes this. Stop at the lab for the test kit and call the nurse if you have any questions.”

Patient is silent, thinking: She thinks I have cancer

Explanation - In high-context cultures, people read between the lines, expecting to find more meaning in what is not said than in what is verbalized

Anglo MD & Chinese patient (con’t)

MD: “Do you have any questions?”

Patient: “No”

Explanation - In some cultures, it is considered impolite & disrespectful for a lay person to question an MD; one accepts authority without question.

Ways of communicating

Socio-Cultural Context

Stated values & beliefs

ImagesUnderstandingCulture

Culture is… the tools that group members use to make sense the tools that group members use to make sense of the of the chaos around them, putting the chaos around them, putting the abstract ideas of abstract ideas of worldview into worldview into tangible beliefs and behaviors tangible beliefs and behaviors

Kagawa-Singer M. 1997Kagawa-Singer M. 1997

a system of knowledge that allows us to know how a system of knowledge that allows us to know how to to communicate with others and how to communicate with others and how to interpret their interpret their behaviorsbehaviors

Gudykunst WB. 1998

a system whose whole pattern (most of which is a system whose whole pattern (most of which is not not conscious at any particular time) is conscious at any particular time) is required to required to understand theunderstand themeanings that people attach to specific meanings that people attach to specific facts and observations facts and observations

Bourdieu P. 1990

MarsMars groups who suffer cancer disparitiesgroups who suffer cancer disparitiesCompass Compass behavioral research theory & methodsbehavioral research theory & methods

Behavioral Theory:Like a Compass on Mars

The Problem

Behavioral theory constructs – Developed with mainstream populations– Used as universal

Underlying concepts– Not tested for cultural appropriateness– Focus is cognition, not context

Measures– Not validated for cross-cultural

comparability or validity

The Problem

Behavioral theory constructs – Developed with mainstream populations– Used as universal

Underlying concepts– Not tested for cultural appropriateness– Focus is cognition, not context

Measures– Not validated for cross-cultural

comparability or validity

Behavioral Constructs & Behavioral Constructs & CultureCulture

in Cancer Screeningin Cancer Screening (3Cs)funded by the NCI 2001-2006

Methodological study to assess the cultural

appropriateness of 5 behavioral theory constructs

Mixed methods multi-lingual survey in-depth interviews

key informant “scholars” community gatekeepers women in community

Self efficacy Intention Perceived Benefit Perceived Susceptibility Subjective Norms

3Cs Research Team Investigators ConsultantsRena PasickNancy Burke Bill RakowskiSusan Stewart Melissa ClarkJudith BarkerJoyce BirdRegina Otero-SabogalNoe TuasonGalen Joseph

Anthropology * Behavioral Science * Biostatistics * Health Psychology * Public

Health * Sociology

The Problem

Behavioral theory constructs • Developed with mainstream populations• Used as universal

Underlying concepts• Not tested for cultural appropriateness• Focus is cognition, not context

Measures• Not validated for cross-cultural

comparability or validity

Is Intention Comparable in Meaning & Measurement Across

Cultures?

intention – the determination to perform certain activities (e.g., mammography) or to bring about a certain future state of affairs; the likelihood of doing something (Theory of Planned Behavior)

mechanisms cognitive representation of future outcome goal setting and self-evaluation

assumptions behavior is volitional people are rational

Self efficacy Intention Perceived Benefit Perceived Susceptibility Subjective Norms

Theory of Planned Behavior

OR……Beliefs + Beliefs + Beliefs > Intention > Behavior

Key informant (KI) interviews• Scholars from the ethnic group of interest

Community gatekeeper (GK) interviews• CBO directors/managers, public health

nurses, religious leaders Ethnographic interviews with women

• Latina and Filipina women in the community Transcription (and translation) Collaborative coding Identification of themes

3Cs Qualitative Methods

Qualitative Methods in Health Research vs the Anthropological Approach

Qualitative Health Research Anthropologic Approach

Focus groups/semi-structured interviews

Multiple qualitative methods (Ethnography)

Often used to deconstruct complex phenomena into simpler concepts

Constructs multifacetedUnderstanding/multiple influences

Explores beliefs and practicesrelated to predefined biomedical phenomena

Explores broader context for alternative meaning and/ormultifaceted influences

Focuses on lay understanding to change individual behavior

Focuses on both lay and expert knowledge as objects of inquiry

Focuses on cognition; what is accessible to individualknowledge/memory

Explores influences beyond individual consciousness(e.g., social context)

Pasick R, Burke N (2007) A Critical Review of Theory in Breast Cancer Screening Promotion across Cultures. Ann Rev Pub Hlth

Themes with relevance to intention

CONFLICT WITH BARRIERS: women may have positive attitudes toward screening, but are required to make choices within a stressful environment; thus, despite stated intentions to get screened, they do not go

… there's no opposition to getting screened… they know they should… they want to, etcetera… it's just a question of finding a time to do that.Latino key informant

KI-09-04142003.txt - 9:20

ABSENCE OF PREDICTABILITY:

underlying the association between intention and behavior is the implicit assumption of predictability; a favorable attitude & intention cannot always lead to behavior when predictability is absent

..what you're dealing with in a highly chaotic sort of fluid community where you're very susceptible to lay-offs… poverty is chaos because there's no predictability.Latina key informant

KI07-021203.txt - 7:32

ACCEPTANCE OF PUTTING THINGS OFF:

Many women may be accustomed to being unable to do all they intend; they cope by accepting that some important things must be put off.

.. We don't get screened because of decidia; decidia means we put it off -- we're negligent"…Latino key informant, KI-004142003.txt - 9:6

When they told me about this, I thought well I should have it done because I have never got it done. But no. I think that we are “desidioso.” I think that most people are “desidioso”….. We don’t take or make the decision that we have to do this. We leave it for later. Indecisive. I say it like that. I don’t know how you say it.Latina woman, L-12-121304

INTENTION IN THE CONTEXT OF THE UNFAMILIAR:

Immigrant women may form positive attitudes & intentions but so much of their world is unfamiliar they don’t want to attempt navigating a system that makes them feel vulnerable

.. Sometimes it takes people a period of time to become adjusted to a concept, especially if we're talking about a concept that's totally alien to them…. sometimes it's comfortable and sometimes it's not. So that's where I find more professional settings around people saying yes but meaning no.Filipina gatekeeper, P22

INTENTION BASED ON RELATIONSHIP: in relational cultures, it is very likely to find women getting screened because they perceive that the person asking them truly cares; this is not based on any perceived benefit of the test. Indeed, they may not go in the absence of this relationship

If you don't have that relationship with them, they're less likely to do it….I think they do it mostly for us…Yeah… because we're recommending that they get this mammogram … they themselves don't understand why they need to…Filipina gatekeeper, P15

INTENTION AS DESIRABILITY/POLITENESS:

part of respect is being agreeable and not saying no

.. they don't want to see the nutritionist, but it's really impolite to say, "No, I don't want to see your nutritionist." So they'll just say, "Yes, I'll go see the nutritionist" or "Yes, I'll go to the doctor and I'll do this." And then they never do it….They say yes because they don't want to be impolite. Saying no is impolite.Filipina gatekeeper, P22

MEANING OF STATED INTENTION: for many reasons, including the subtleties of indirect communication, people will say yes but mean no

… it's like they say, "Well, yeah, I made the appointment", or "Yeah, I've been there", but they are actually saying just to say, "I'll be there"… but they are not really planning to come. Latina gatekeeper, P12

You have to tell them, "It's important that you come… if not, you just tell me… "It's OK for you to tell me that you can't come", you have to tell them that… that's how I deal with it. "It's OK for you to tell me that you can't come, you know, I won't get mad".Filipina gatekeeper, P13

Intention Across Cultures

The construct of intention should not be used as universal due to:

• Differences in meaning of stated intention• Differences in relationship of intention to behavior• Missing predictors• Entirely different issues and relationships

Gaps in understanding of diverse cultures can best be addressed through mixed method research on theoretical concepts & constructs, and thus to inform interventions and explain outcomes

Cognition may be only a minor influence on behavior

Pursue the “unpacking” of social context for more complete understanding of behavior

Conclusions

Avoid Pitfalls in Multicultural Research

- Review theoretical premises & hypotheses- Can cultural insights provide refinements?

- Field test instruments with diverse groups- Expect & plan for differential refusal rates- Assess constructs for group-specific patterns- Share results with community to draw

implications collaboratively- Community members/judges to carefully

review “off-the-shelf” interventions

Marin & Marin, 1991; Vega, 1992

Using What Works (UWW)National Cancer Institute

Tips For Trainers Module

1- Introduction: What Do We Mean by Evidence-Based?

2- Needs Assessment: Getting To Know Your Audiences Better

3- Finding an Evidence-Based Program

4- Making the Evidence-Based Program Fit Your Needs: Adaptation and Your Program Summary

5- Does It Work? Evaluating Your Program

http://cancercontrol.cancer.gov/use_what_works/start.htm

UWW Adaptation Guidelines1. Determine the needs of your audience/does this

program address those needs?2. Review the program and its materials with intended

audience 3. Define the extent of adaptation/how to implement 4. Develop “mock-up” of the adapted products. 5. Consult expert advisors on maintaining fidelity to the

original 6. Pilot test 8. Implement 9. Evaluate

http://cancercontrol.cancer.gov/use_what_works/start.htm