In conducting research in health and health care disparities, locating published measures of health and determinants of health can be a challenge. When a published measure is not available, unpublished measures can often serve as a starting point. We provide here an overview of types of places to look for information about specific measures, and a few examples of sources from each type. We have also noted the kinds of measures available at each source. When possible, we have indicated when measures might be appropriate for minority aging and health disparities research. These sources offer one or more of the following: critical review of several measures of a concept including psychometric information, actual instruments, and concept definitions.
This list is not exhaustive – it is intended to be a guide to strategies for locating measures. We have organized this list in terms of the following types of places that specialize in measures:
- Organizations and research centers
- Government agencies
- National and state surveys
- Large research studies related to your topic
- Universities and individual researchers
1. Compendia – places/locations in which specific measures of various concepts are compiled, reviewed, listed, or provided.
Book compendia: Several books have compiled and reviewed measures used in health research. We have developed a bibliography of a selection of these books. Click here to see the bibliography.
Web compendia: There are several helpful websites that have compiled measures of many aspects of health and the determinants of health. They often also provide access to the instruments.
Health and Psychosocial Instruments Database (HaPI)
Contains reviews of instruments used in nursing, physical therapy, psychology, and various medical specialties. Also is a source of published studies that have used specific instruments.
(NEED OVID ACCOUNT)
Center for HIV Identification, Prevention and Treatment Services (CHIPTS) provides lists and access to a wide variety of health related surveys and scales. Also links to other sites with instruments. CHIPTS can also provide technical assistance on choosing instruments for certain populations.
2. Organizations and Research Centers - some organizations have specialized in measurement development and have created websites for public use.
The RAND Health program specializes in the development and testing of measures for use in health and healthcare research including quality of care, patient satisfaction, and health-related quality of life. Its website provides instruments, scoring manuals and citations for many of these measures Translations are sometimes available.
Inter-University Consortium for Political and Social Resaerch (ICPSR)
ICPSR acts as a data center, providing researchers with access to the raw data files collected from surveys, census and administrative records to conduct secondary analysis. The ICPSR contains information on a sizeable number of studies that have been archived including EPESE, HRS, and NHIS. Codebooks, questionnaires and links to literature published form the data are also available. (Membership is required, UCSF is a member institution). To find the data you are interested in more easily, we recommend first quickly reviewing the “Data Use Tutorial’ available on the site.
If you are interested in a specific study data or survey, you can use the search box to search by study or investigator name. Otherwise, you can conduct a general search by topic.
The MacArthur Network aims to further the understanding of how SES impacts the health of individuals and communities. The website reviews measures of the social and physical environment, development, and psychosocial and physical factors related to health and comments on issues of the measurement of these constructs. Some examples of measures are provided.
Resource Centers for Minority Aging Research (RCMAR)
Each of the six RCMAR Centers provides some measures of health and its determinants depending on the center’s specific research emphasis. The Coordinating Center provides a brief description of the focus and highlights of each center’s website.
Center for Aging in Diverse Communities (CADC). Our own RCMAR center provides measures of interpersonal processes of care, languageacculturation, and a set of recommended questions measuring socioeconomic status for use in health and healthcare disparities research. Some are available in Spanish.
The Michigan Diabetes Research and Training Center (MDRTC)
MDRTC provides access to several diabetes survey instruments including the Diabetes Care Profile (DCP), Diabetes History (DMH), Diabetes Knowledge Test (DKT), Diabetes Attitude Scale (DAS-3), Diabetes Empowerment Scale (DES), and Michigan Neuropathy Screening Instrument (MNSI).
Stanford Patient Education Research Center
This site provides access to measures, scoring instructions and measurement properties of measures of self-management behaviors, self-efficacy, health status and health care utilization in patients with chronic disease. Most are available in English and Spanish.
Ottowa Health Research Institute
This site explores ways to help patients make “tough” decisions about their health care, including multiple options, and benefits/harms that people may value differently. Measures are available regarding decision support needs of people and patients, with a focus on disadvantaged groups and their providers. Measures include, for example, decisional conflict, decision self-efficacy, and stages of decision making.
3. Government Agencies – Several federal and state government agencies provide information on measures for use in health and health care disparities research.
Agency for Healthcare Research and Quality (AHRQ) AHRQ provides information about and access to several measures of health care quality. Their resources include the Consumer Assessment of Health Plans Survey (CAHPS) and the National Quality Measures Clearing House. Measures from various surveys that were used in the National Healthcare Quality Report and the National Healthcare Disparities Report are also available.
Consumer Assessment of Health Plans Survey (CAHPS®)
CAHPS is a series of measures that evaluate the interpersonal aspects of healthcare from the patient and consumers point of view. It is often used to monitor the quality of care provided by healthcare organizations.
The National Quality Measures Clearinghouse
(NQMC) sponsored by the Agency for Healthcare Research and Quality (AHRQ). NQMC provides a repository of quality measures for practitioners, consumers and researchers to access. It also provides details on how to select and how to use measures of quality of care.
National Healthcare Quality Report and the National Healthcare Disparities Report
This website provides both the National Healthcare Quality and Disparities Report and information on the measures used in the studies.
National Cancer Institute (NCI)
NCI has measurement resources through several divisions and sections.
The Behavioral Research Program within the Cancer Control and Population Sciences section provides numerous measurement resources. First, they provide links to several other surveys that measure concepts relevant to cancer-control.
NCI also has a new website on “Health Behavior Constructs: Theory, Measurement, and Research”. Reviews and measures are provided for traditional psychosocial concepts such as perceived control, self-efficacy, social support, and non-traditional concepts such as dispositional optimism, illness representations, optimistic bias, and perceived vulnerability.
The Division of Cancer Epidemiology and Genetics also has measure resources. For example, this site provides a Questionnaire Modules feature on its website that provides access to measures used in cancer research including demographics, medical history, family history and other risk factors. Researchers can search by topic or study, and are provided with the measure and citation of published results.
Health Information National Trends Survey (HINTS)
The HINTS survey examines how Americans use different communication channels to access and use health information, as well as measures cancer knowledge, cancer screening behaviors, risk behaviors, and perception of risk for cancer among Americans.
US Dept Veteran Affairs, National Center for Posttraumatic Stress Disorder
The National Center for Posttraumatic Stress Disorder provides measures used to identify exposure to trauma or stressful events.
Centers for Disease Control and Prevention
The CDC provides a health-related quality of life measure defined in terms of “healthy days.”
4. National and State Surveys - Many state and national institutions conduct regular population surveys and provide access to the data files and surveys. Although information on the sources of the measures and the measurement properties is seldom available, the surveys provide standardized questions on many topics such as chronic medical conditions, health behaviors and risk factors, use of health care, and quality of care. These surveys have the advantage of being used in large representative samples;
A summary of selected state and national surveys is presented below. We also have developed instructions on how to access the questionnaires that can be accessed by clicking here.
5. Large Research Studies – Many large-scale, multi-center or longitudinal studies have developed and used measures pertaining to health related topics. Increasingly, these studies are posting their measures for public use.
National Center for Health Statistics (NCHS)
The NCHS is the central body for government collected health data. NCHS has 2 major types of data systems: systems based on populations, containing data collected through personal interviews or examinations; and systems based on records, containing data collected from vital and medical records. This link provides a summary of the major NCHS surveys, which are listed below.
Behavioral Risk Factor Surveillance Survey (BRFSS) The BRFSS is a national survey conducted by the CDC that measures trends in health behaviors in the United States. A table of contents simplifies the task of finding measures of specific concepts.
National Health and Nutrition Examination Survey (NHANES) NHANES is a survey of the health and nutrition of the American population. The survey includes an interview and a medical examination.
Hispanic Health and Nutrition Examination Survey (HHANES)
The Hispanic version of the NHANES sampled 16,000 Mexican Americans, Cuban Americans and Puerto Ricans.
National Health Care Survey (NHCS)
These surveys provide information on quality of care, access to care, safety and disparities in health care among ambulatory, hospital and long-tem care settings.
National Health Interview Survey (NHIS)
The NHIS is one of the major sources of information on the health of the US population due to its sample size and long-term data collection of many variables, which enables researchers to examine trends over time.
California Health Interview Survey (CHIS)
The CHIS survey samples adults, adolescents and children from all over California. It is available in multiple languages and has over sampled minority populations throughout California.
Women’s Health Initiative (WHI)
The WHI website provides access to all of the WHI measures which include general demographic indicators, medical history, physical activity, lifestyle, social support, depression, sexual functioning, and also clinical measurements and tests.
Established Populations for Epidemiological Studies of the Elderly (EPESE)
EPESE is a longitudinal study of the behaviors and risk factors among the elderly that predict chronic disease, hospitalization, and mortality. The questionnaire is available for download via ICPSR. (Membership and registration is required to access data files; many universities are members)
Longitudinal Study on Aging (LSOA)A collaboration between the NCHS and NIA, this study measured factors such as health, physical functioning, living arrangements and health care utilization in cohorts of Americans over 70 years old.
Health and Retirement Survey (HRS) and Assets and Health Dynamics of the Oldest Old (AHEAD)The HRS study provides information on the health, income, insurance, family planning, and retirement of Americans over 50 years old. The AHEAD study was designed as a supplement to the HRS to explore the relationships between financial status, family relationships and health among at the end of life. Questionnaires are available online.
6. Universities and Individual Researchers - Increasingly, individual investigators who specialize in measurement as well as some universities provide direct access to measures through their web sites.
New York University, College of Nursing, Hartford Institute for Geriatric Nursing
Try This: Best Practices in Care for Older Adults, is a series of assessment tools focusing on a topic specific to the older adult population, such as independence in activities of daily living, depression, pain, and more. Each Try This issue is a 2-page document with a description of why the topic is important when caring for older patients and an assessment tool that can be administered in 20 minutes or less. “Try This: Best Practices in Nursing Care to Older Adults.”
Toolkit of Instruments to Measure End of Life Care (TIME)
TIME provides several instruments used to measure the needs of patients nearing the end of life, the quality of life they have and the quality of care these patients receive. Also provides annotated bibliographies for tools available in specific domains of end of life care.
On-Line Guide to Quality of Life Assessment (OLGA)
Provides information about questionnaires and rating scales for assessing psychosocial effectiveness in clinical studies. OLGA assists clients in selecting the best measures of quality of life and health outcomes for use in clinical trials and economic analyses. This site requires registration and most resources require a fee to access them.
San Diego State University, James Sallis, Ph.D.
This website includes numerous measures related to studies of physical activity and its determinants in children and adults. Measures include physical activity, self-efficacy to exercise, neighborhood walkability scales, social support for diet and exercise, and others.
University of Illinois at Urbana-Champaign, Edward McAuley, Ph.D.
Measures developed by faculty in the Exercise Psychology Laboratory are provided including barriers self-efficacy, exercise self-efficacy, and the subjective exercise experience scale (SEES).
Vanderbilt University, Kenneth Wallston, Ph.D.
The Multidimensional Health Locus of Control is available including scoring instructions and selected citations.
University of California San Francisco (UCSF), Anita Stewart, Ph.D.
The CHAMPS physical activity questionnaire is available in English and Spanish on the CHAMPS website.
Carnegie Mellon University, Sheldon Cohen, Ph.D.
Dr. Cohen’s Perceived Stress Scale (PSS) is available in English and Spanish, including scoring manuals and publications on this instrument.
We welcome your feedback on this document. We aim to provide a resource for investigators in health and health disparities research. Let us know if you were able to find what you were looking for, and if not, what you had hoped to find.