Identifying and Selecting Measures for Health Disparities Research

1. Identifying and Selecting Measures for Health Disparities Research Anita L. Stewart, Ph.D. University of California, San Francisco Clinical Research with Diverse Communities EPI 222, Spring April 10, 2008

2. Selecting Measures for Your Own Study: The Problem • You are beginning a study • You know the concepts (variables) of interest • Question: Which measure of ________ should I use? • A popular measure • One that a colleague used successfully • Create your own

3. Inappropriate Measures can Result in: • Conceptual inadequacy • Measuring wrong concept for your study • Poor data quality (e.g. missing data) • Poor variability • Poor reliability and validity • Inability to detect true associations • e.g., no measured change in outcome when change occurred

4. Two Types of Considerations in Selecting Measures • Contextual - factors unrelated to specific measurement tools • Characteristics of target population • Goals of research • Practical constraints • Psychometric - properties of measures within your context

5. Basic Steps in Selecting Appropriate Measures 1. Specify context 2. Define concept for your study 3. Locate potential measures for consideration 4. Review potential measures for: a) conceptual match to your definition b) adequate psychometric properties in target group 5. Pretest potential measures in your target group 6. Choose best ones based on pretest results OR adapt if necessary to address problems

6. 1. Specify Context • Research question and how concept fits research (outcome, predictor, covariate) • Nature of target population (health, age, SES, race/ethnicity, literacy) • Practical constraints (time, personnel, budget, respondent burden)

7. Step 2: Define Concept For Your Study • Define concept from your perspective, taking into account your… • study questions • target population • For outcomes, describe: • how intervention or independent variables might affect it • specific types of changes you expect

8. Step 3. Locate Potential Measures • Identify candidate measures for all concepts • Redundancy OK for now • Do NOT develop your own questions unless it is absolutely necessary

9. Locating Measures • For major dependent or independent variables • Multi-item measures with known psychometric properties • For background variables and covariates • Standardized survey measures

10. Locating Measures • Compendia • Organizations and research centers • Government agencies • National and state surveys • Large research studies relevant to your topic • Universities and individual researchers

11. Handout: Locating Measures for Health Disparities Research • To link to websites, need to log on to CADC http://medicine.ucsf.edu/cadc/cores/measurement/resourcescode.html

12. Locating Measures: Compendia • Specific measures of various concepts are compiled, reviewed, listed, or otherwise provided • Books • Many books review and critique various measures • Web • A few websites

13. Compendia by Web • Health and Psychosocial Instruments (HaPI) • Over 120,000 instruments • http:/gateway.ovid.com/ • Need ovid account – UCSF has one if use computer at work (or vpn) – no need to enter password

14. Compendia by Web • National Cancer Institute website • Health behavior constructs: theory, measurement, and research • Reviews concepts and measures of constructs such as perceived control, social support, and perceived vulnerability http://dccps.cancer.gov/brp/constructs/index.html

15. Locating Measures: Organizations and Research Centers • Some organizations and research centers specialize in measurement and provide public access websites • RAND • Michigan Diabetes Research and Training center

16. RAND Health Program • Measures, scoring manuals, and citations • Specialty: • Quality of care, patient satisfaction • Health-related quality of life • Generic and disease specific • Medical Outcomes Study (MOS) measures www.rand.org/health/ (surveys and tools)

17. RAND Measures of Maternal, Child, and Adolescent Health • Pediatric asthma symptom scale • Pediatric quality of life inventory

18. Michigan Diabetes Research and Training Center: Survey Instruments • Diabetes Care Profile (DCP) • Diabetes History (DMH) • Diabetes Knowledge Test (DKT) • Diabetes Attitude Scale (DAS-3) • Diabetes Empowerment Scale (DES) • Michigan Neuropathy Screening Instrument (MNSI) www.med.umich.edu/mdrtc/survey/

19. Inter-University Consortium for Political and Social Research • Maintains archive of social science data • Membership-based organization – over 500 member colleges/universities • UCSF is a member • Can search website using keywords to locate studies, data, and questionnaires www.icpsr.umich.edu/

20. Ottawa Health Decision Centre • Patient and physician decision aids http://www.ohri.ca/centres/DecisionAids/default.asp • Patient measures, e.g., decisional conflict, decisional regret, stage of decision making, decision self-efficacy http://decisionaid.ohri.ca/eval.html

21. Commonwealth Fund Surveys • Health insurance • Medicare • Health care quality, patient centered care, underserved populations • Child health development, care of the elderly • State health policy, international health policy www.commonwealthfund.org/surveys/

22. Commonwealth Survey of Physicians • 2006 International Health Policy Survey of Primary Care Doctors • Use of information technology • Access to care • Availability of financial incentives • Chronic care management

23. Commonwealth Fund Quality of Care Survey • 2001 Health Care Quality Survey • Racial and ethnic differences in patient experiences with health care • focus on quality measures such as patient–physician communication and access to care 

24. Commonwealth Fund Surveys on Policy • “Modern Healthcare" Health Care Opinion Leaders Survey: Assessing SCHIP • State Children’s Health Insurance Program • Health Care Opinion Leaders Survey: Assessing Health Care Experts' Views on Medicaid and Its Future

25. Block Dietary Data Systems • Now known as NutritionQuest • Official source of Block Food Frequency Questionnaire • Measures of nutrition, dietary intake, and physical activity. • Questionnaire design and dietary analysis services to nutritional epidemiologists and public health researchers www.nutritionquest.com/index.htm

26. Locating Measures: Government Agencies • Several federal and state government agencies provide measures for use in health and health disparities research • Information about measures (e.g. clearinghouse) • Actual measures

27. Agency for Healthcare Research and Quality (AHRQ) • Medical Expenditure Panel Survey (MEPS) • www.ahrq.gov/data/ • National Quality Measures Clearinghouse • Consumer Assessment of Health Plans Survey (CAHPS) • www.ahrq.gov/qual/

28. Department of Veterans Affairs • National Survey of Veterans, 2001 www.va.gov/vetdata/surveyresults/index.htm • Survey of Veteran Enrollees’ Health and Reliance Upon VA, 2003 www.va.gov/vetdata/healthcare/index.htm • Both include measures of demographics and socioeconomic status, military background, health, health insurance, and VA and non-VA benefits usage.

29. National Cancer Institute • Special initiatives on measures • Health Information National Trends Survey (HINTS) • Compiled cancer screening questions, identified best ones, conducted extensive pretesting http://hints.cancer.gov/

30. National and State Surveys • Population surveys • Tend to have single-item measures rather than multi-item scales • Good for “standardized” survey items • Some exceptions • e.g., National Health Interview Survey administered a 6-item scale of psychological distress (K6 scale) published by Kessler et al. • Pratt LA, Advance Data, March 30, 2007 (No. 382)

31. Centers for Disease Control and Prevention • Behavioral Risk Factor Surveillance System • Surveys of health behaviors www.cdc.gov/brfss/questionnaires/index.htm

32. California Health Interview Survey (CHIS) • A behavioral risk surveillance survey modeled after the CDC BRFSS • Numerous languages • www.chis.ucla.edu/ • Go to “Methodology – review questionnaires”

33. CDC: National School-Based Youth Risk Behavior Survey (YRBS) • Survey conducted every other year • random national sample of youth in grades 9-12 • Most states conduct survey • Measures of substance use, risky sexual behaviors, diet, physical activity, overweight www.cdc.gov/HealthyYouth/yrbs/index.htm

34. National Center for Health Statistics (NCHS) • Surveys and data collection systems • Can download • Any survey or portion of survey • See handouts for class 10 • Summary of all surveys • Instructions for downloading

35. NCHS: Sample of Population Surveys • National Health Interview Survey • National Health and Nutrition Examination Survey • National Survey of Family Growth • National Maternal and Infant Health Survey • Longitudinal Studies of Aging (LSOA) www.cdc.gov/nchs/express.htm

36. NCHS National Health Care Surveys: Surveys of Physicians • Family of provider-based surveys • Provide objective, reliable information about • organizations and providers • services rendered • patients they serve www.cdc.gov/nchs/nhcs.htm

37. Example: National Ambulatory Medical Care Survey (NAMCS) • Samples MDs engaged in office-based patient care • Samples visits of those MDs • Measures of physician variables including practice characteristics

38. National Health Care Surveys: Types of Measures • Factors that influence use of health care resources • Quality of health care, including safety • Disparities in health care services provided to population subgroups in the U.S.

39. National Health Care Surveys: Ambulatory and Hospital Care • Physician officesNational Ambulatory Medical Care Survey (NAMCS) • Emergency and outpatient hospital departmentsNational Hospital Ambulatory Hospital Medical Survey (NHAMCS) • Ambulatory surgery facilities National Survey of Ambulatory Surgery (NSAS) • Inpatient hospital departmentsNational Hospital Discharge Survey (NHDS)

40. Locating Measures: Large Research Studies • Many large-scale, multi-center and longitudinal studies have developed and used measures on health-related topics • Increasingly, they are posting these on “study” websites

41. Study of Women’s Health Across the Nation (SWAN) • Physical, biological, psychological, and social changes of women during their middle years • Questionnaire can be downloaded www.edc.gsph.pitt.edu/swan/public

42. Sacramento Area Latino Study on Aging (SALSA) Study • NIA funded longitudinal study of Latinos in the Sacramento region • Started in 1996 • each person followed for up to 5 years http://sitemaker.umich.edu/salsa.study/home

43. Locating Measures: Universities and Individual Researchers • Individual investigators who specialize in measurement and some universities have begun to post measures for public use • Some of these include large research studies posted on university websites

44. University of Michigan Institute for Social Science Research • Two studies on antecedents and consequences of retirement (with NIA) • Health and Retirement Study • Asset and Health Dynamics Among the Oldest Old (AHEAD) • Measures of health insurance, savings, and economic well-being including life course patterns of wealth accumulation and consumption

45. Dr. James Sallis, Ph.D., San Diego State University • Conducts research with children and parents, provides nearly 50 measures in English and Spanish • 2003 Report: Behavioral and Environmental Interventions to Promote Youth Physical Activity and Prevent Obesity   www-rohan.sdsu.edu/faculty/sallis/measures.html

46. Duke University Center for Demographic Studies • National Long Term Care Survey (with NIA) • Prevalence and patterns of functional limitations, medical conditions, recent medical problems, use of health care, and housing and neighborhood characteristics www.nltcs.aas.duke.edu/index.htm

47. Tool Kit of Instruments to Measure End of Life Care (TIME) • Instruments to measure “patient-focused, family centered” care • Annotated bibliographies of instruments that measure outcomes of care at the end of life www.chcr.brown.edu/pcoc/toolkit.htm

48. Quality of life Pain and other symptoms Emotional and cognitive symptoms Advance care planning Spirituality Continuity of care Caregiver well-being Grief and bereavement and more TIME Annotated Bibliographies Available:

49. Roadmap K12 Data Resource Center • Links to over 2 dozen national and state surveys • Provides overview for each: domains, time frame, population, scope, sample size, and contacts www.epibiostat.ucsf.edu/courses/RoadmapK12/PublicDataSetResources/

50. Locating Measures: Finding Authors of Measures • Published research using measure you are interested in • Unpublished measures often described in methods • Authors may provide measures