In conducting research in health and health care disparities, locating published measures of health and determinants of health can be a challenge.  Searching a concept on PubMed may result in terminology that is not always intuitive or missed because articles on PubMed are indexed by the most specific MeSH term available.  When a published measure is not available, unpublished measures can often serve as a starting point.

Here we provide a guideline for selecting appropriate measures:

1. Multi-item measures with known psychometric properties
2. Most good measures have been published
3. Original development and testing information
4. Information on application of measure in subsequent publications

We also provide 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:

Electronic Databases

Google Scholar is more practical for searching on vague terms, follow up on PubMed. Consider alternative labels to search see what other terms come up (i.e., Housing instability vs. Homelessness; or Clinical assertiveness vs. Interpersonal behavior).

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.

McDowell I and Newell C, Measuring Health: A Guide to Rating Scales and  Questionnaires.  Third Edition, Oxford University Press, 2006.  Reviews measures of physical disability, social health, psychological well-being, anxiety, depression, mental status, pain, and general health status and quality of life. Includes actual instruments where possible and selected items in some.

Reviews of Measures:
Mui, AC; et al.  Cross-cultural assessment of geriatric depression: A review of the CES-D and the GDS.  J Ment Health Aging, 2001;7:137-164.

Martinez, SM; et al.  A review of physical activity measures used among U.S. Latinos: guidelines for developing culturally appropriate meausres.  Ann Beh Med, 2008;36:195-207.

Skinner, JH. Acculturation: measures of ethnic accommodation to the dominant American culture. J Ment Health Aging, 2001;7:41-52.

 

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.
 

Organizations and Research Centers - some organizations have specialized in measurement development and have created websites for public use.

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.  Provides instruments, scoring manuals and citations for many of these measures Translations are sometimes available. 

Inter-University Consortium for Political and Social Research (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 data more easily, we recommend reviewing the “Data Use Tutorial’ available on the site.   If you are interested in a specific study data or survey, use the search box to search by study or investigator name. Otherwise, conduct a general search by topic. 

MacArthur Network aims to further the understanding of how SES impacts the health of individuals and communities. 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.

The Michigan Diabetes Research and Training Center (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).

Ottowa Health Research Institute 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.

Commonwealth Fund Surveys provides surveys on health insurance, medicare, health system performance, health care quality, patient centered care, underserved populations, child health, and care of the elderly.

 

Government Agencies – Several federal and state government agencies provide information on measures for use in health and health care disparities research.

Centers for Disease Control and Prevention provides a health-related quality of life measure defined in terms of “healthy days.

Consumer Assessment of Health Plans Survey (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) 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 Cancer Institute (NCI) has measurement resources through several divisions and sections. 

• The Behavioral Research Program within the Cancer Control and Population Sciences provides numerous measurement resources.  First, they provide links to several other surveys that measure concepts relevant to cancer-control. 
• Health Behavior Constructs: Theory, Measurement, and Research through NCI 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 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) 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.

 

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. 

California Health Interview Survey (CHIS) samples adults, adolescents and children from all over California. It is available in multiple languages and has over sampled minority populations throughout California.

National Center for Health Statistics (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 linkprovides a summary of the major NCHS surveys, which are listed below. Surveys included:

• Behavioral Risk Factor Surveillance Survey (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) 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) is the Hispanic version of the NHANES sampled 16,000 Mexican Americans, Cuban Americans and Puerto Ricans. 
• National Hospital Care Survey (NHCS) provides information on quality of care, access to care, safety and disparities in health care among ambulatory, hospital and long-term care settings. 
• National Health Interview Survey (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.

 

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. 

Established Populations for Epidemiological Studies of the Elderly (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) is 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 Study (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.

Gate to Global Aging Data is a search engine for population survey data on aging around the world. This comprehensive platform includes 12 international health and retirement surveys from the United States, Mexico, England, Europe, Korea, Indonesia, India, China, Ireland, Japan, and Costa Rica. It allows users to identify survey items by domains across multiple surveys and generate graphs and tables using survey data. This site requires registration to download data files. Registration is free. 
 

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.

Toolkit of Instruments to Measure End of Life Care (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. 

Wikipedia - some wikis are being developed around specific measures.

Hamilton Depression Rating Scale is a multiple choice questionnaire that clinicians may use to rate the severity of a patient's major depression.

Beck Depression Inventory is a 21-question multiple-choice self-report inventory used for measuring the severity of depression.