Validated Measures for Research with Vulnerable & Special Populations

Validated measures are surveys and screening questionnaires that have been tested to ensure production of reliable, accurate results. The instruments provided here are designed for primary data collection and were selected for applicability to groups the NIH has termed "special populations", under-represented in patient-oriented research. The aim is to encourage inclusion of a broader range of human subjects in studies at UCSF and beyond. Learn about the development of this resource.

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Domains

Note: If you are outside the UCSF network, access to publications referenced below may be limited.

SOCIAL FACTORS

Educational Attainment

English Version(s)

Short Version

The MacArthur Educational Status Measurement Approaches for both "years of educational attainment" and "credentials earned" are brief.

Notes

The Network on Socioeconomic Status and Health has enhanced understanding of the mechanisms by which socioeconomic factors affect the health of individuals and their communities. The Network’s research agenda established in 1997 has stimulated additional research in diverse fields, has contributed data to discussions of economic and social policy, and has provided a basis for social and medical interventions to foster better health among individuals and communities.

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Food Insecurity

English Version(s)

USDA 6-Item Short Form US Household Food Security Module

Short Version

2-Item Hunger Vital Sign

Translated Version

  • Chinese (Word files of Chinese translated versions in Supplementary Material section)

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Health Insurance Status

 

 

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Homelessness and Housing Instability

English Version(s)

No validated measures at this time. See Publications for similar instruments used by many studies.

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Immigration Status

English Version(s)

 

 

Notes

CDC Vital and Health Statistics contains a review of the literature on the use of immigration status survey questions.

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Incarceration History/Status

Notes

Recommended: a larger set of questions items from the National Longitudinal Study of Adolescent to Adult Health (Add Health)

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Limited English Proficiency

English Version(s)

UCSF Center for Aging in Diverse Communities: Measures and Concepts (self-report survey; Recommended Sociodemographic Measures)

 

 

Notes

  • U.S. Census Question: How well do you speak English (Very Well, Well, Not Well, Not At All)?
  • Preferred Language for Healthcare: In what language do you prefer to receive your healthcare?
  • Combination of the two in an algorithm to determine need for language access services.

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Race/Ethnicity

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Sexual Preference and Gender Identity

Translated Version

NHIS Sexual Identity Questions - Spanish Version (please refer to Spanish questionaire at end of file)

Notes

Pridestudy.org has comprehensive and important guidance, including an analysis of the shortcomings of commonly used measures.

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Social Determinants / Resources / Needs

 

 

Pending.

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Socioeconomic Status / Income / Assets

 

 

Notes

The Network on Socioeconomic Status and Health has enhanced understanding of the mechanisms by which socioeconomic factors affect the health of individuals and their communities. The Network’s research agenda established in 1997 has stimulated additional research in diverse fields, has contributed data to discussions of economic and social policy, and has provided a basis for social and medical interventions to foster better health among individuals and communities.

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HEALTHCARE EXPERIENCE

Caregiving Burden (Adults/Geriatric)

Short Version

Various short versions, from Table 1 in Higgins et al 2010

Translated Version

Chinese (pg 517-518 of article)

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Caregiving Burden (Pediatrics)

English Version(s)

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Discrimination in Healthcare (perceived/self-reported; overall and race, language, income, gender, sexual preference/sexual identity)

English Version(s)

Short Version

Everyday Discrimination Survey (Short or extended versions in document)

Notes

The expert here is David Williams. This is usually separated by 1) Major Life Events vs. 2) Everyday interactions, and then within domains (Work, School, etc.) and by specific reason (ancestry, gender, race, etc.) (Lyles)

Re: Hausmann, et al.: This is less studied overall in my opinion. This is the best paper I have seen directly comparing different ways of assessing healthcare discrimination, but it unfortunately doesn’t have a specific conclusion about which is best to use overall. (Lyles)

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End-of-Life Decision-Making (values, preferences, readiness)

Translated Version

Sudore ACP Engagement (within article; English and Spanish, 15 items)

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Health Literacy

Translated Version

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Interpersonal Processes of Care

 

 

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Shared Decision-Making Preferences

 

 

Pending.

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Trust in Health System

English Version(s)

Medical Mistrust (created by Tom LaVeist at Johns Hopkins) includes a short-form scale of 7 items and the attachments at the bottom include a longer 17-item scale.

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Trust in Patient by Physician/Provider

English Version(s)

Physician Trust in Patient (2011 Short Version)

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Trust in Physician/Provider

 

 

Validation Papers

Studies of trust and race/ethnicity that have used TIPS:

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DISABILITY

Dementia Screening/Diagnosis

English Version(s)

Validation Papers

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Functional Status (Adult/Geriatric)

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Functional Status (Pediatrics)

 

 

Pending.

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Geriatric Syndromes

English Version(s)

Pending: comprehensive test to assess urinary incontinence, falls, dementia, etc.

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Hearing Loss

English Version(s)

 

 

Notes

Relevant cited articles from validation paper: Tara Rachakonda  |  Donna B. Jeffe  |  Jennifer J. Shin  |  Leila Mankarious  |  Robert J. Fanning  |  Marci M. Lesperance  |  Judith E.C. Lieu

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English Version(s)

Translated Version

TOPS was translated into 7 languages (not online)

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Vision Loss

English Version(s)

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Other Disability

 

 

Notes

Some of the most widely used internationally validated disability measures are the Washington Group Disability Sets.

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OTHER DOMAINS

Adverse Childhood Events (ACE)

 

 

Notes

The National Child Traumatic Stress Network provides Standardized Measures to Assess Complex Trauma. This table lists specific tools that can be used either to assess a broad range of complex trauma domains or tap into a specific domain in greater detail. Please note that this is not an exhaustive list of assessments; other tools may be available that are not listed here.

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Child Abuse/Neglect

English Version(s)

  • Juvenile Victimization Questionnaire
  • National Crime Victimization Survey (NCVS)
  • Bureau of Justice Statistics: Criminal Victimization in the United States, 1993 (Violent Crime Screener Questions pg.124)
  • Longitudinal Studies of Child Abuse and Neglect (LONGSCAN) The goal of LONGSCAN is to follow the 1300+ children and their families until the children themselves become young adults. Comprehensive assessments of children, their parents, and their teachers have been completed at child ages 4, 6, 8, 12, 14, 16, & 18. Maltreatment data are collected from multiple sources, including review of Child Protective Service records on regular cycles . Telephone interviews conducted every two years (between comprehensive interviews) allow the sites to track families and assess service utilization and important life events.

Notes

The National Child Traumatic Stress Network provides Standardized Measures to Assess Complex Trauma. This table lists specific tools that can be used either to assess a broad range of complex trauma domains or tap into a specific domain in greater detail. Please note that this is not an exhaustive list of assessments; other tools may be available that are not listed here.

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Interpersonal Violence

 

 

Notes

There are many measures of interpersonal violence. One would need to search surveys more specific to their interest.

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Sexual Trauma

 

 

Pending.

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Tobacco Use

 

Pending.

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Other Substance Use (including ETOH and drugs)

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Depression

 

 

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Posttraumatic Stress

Translated Version

PCL-S - Spanish (refer to pg. 8)

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Stress / Allostatic Load

English Version(s)

A Global Measure of Perceived Stress Scale (PSS) refer to Appendix A

 

 

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Other Severe Mental Illness

English Version(s)

K6 measures nervousness, helplessness, restlessness, depression, effort, and worthlessness. K10 measures these plus fatigue and hopelessness, and has additional questions on nervousness and restlessness.

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