Table I.1. Key Informant Interviews
Pre-Interviews (to identify target populations)
Agency for Healthcare Research & Quality
- Steve Cohen, PhD, Harvey Schwartz, PhD, Cecilia Casale, PhD, Ed Lomotan, MD, Gurvaneet Randhawa MD, Jim Branscome, Joel Cohen, PhD
National Center for Health Statistics
- Virginia Cain, PhD, Vicki Burt, Don Malec, PhD
Maternal and Child Health Bureau, Health Resources and Services Administration
- Bonnie Strickland, PhD, Michael Kogan, PhD, Mary Kay Kenney, PhD, Marie Mann, MD
Office of Rural Health Policy, Health Resources and Services Administration
- Aaron Fischbach, Curt Mueller, PhD, Michelle Goodman, Tom Morris, Michael McNeely, Sarah Bryce
Target Population Interviews
LGBT
- Judith Bradford, PhD, The Fenway Institute
- Gary Gates, PhD, UCLA School of Law’s Williams Institute
- Stewart Landers, JD, John Snow, Inc.
- Harvey Makadon, MD, National LGBT Health Education Center, The Fenway Institute
- Shane Snowdon, Human Rights Campaign
Asian Americans
- Priscilla Huang, JD, Asian & Pacific Islander American Health Forum
- Latha Palaniappan, MD, Palo Alto Medical Foundation
- Marguerite Ro, DrPH, Public Health Dept., Seattle and King County, WA
- Chau Trinh-Shevrin, DrPH, Center for the Study of Asian American Health, Department of Medicine, NYU
Adolescents with Autism Spectrum Disorders
- Debra Lotstein, MD, UCLA School of Medicine
- Margaret (Peggy) McManus, National Alliance to Advance Adolescent Health
- Megumi Okumura, MD, UCSF School of Medicine
- Julie Lounds Taylor, PhD, Vanderbilt University School of Medicine
Individuals Living in Rural Areas
- Amy Brock-Martin, DrPH, South Carolina Rural Health Research Center
- David Hartley, PhD, University of Southern Maine
- Erika Ziller, PhD, University of Southern Maine
- Ira Moscovice, PhD, University of Minnesota
- Keith Mueller, PhD, University of Iowa
Table I.2. Limitations of National Surveys for Small Populations
Population | General Problem: Small n relative to frame | General Problem: Lack of approaches to increase sample | Frame Problem:* Telephone number frame | Frame Problem:* Area frame samples | Data Collection Problem: Unit nonresponse | Data Collection Problem: Item nonresponse | Data Collection Problem: Instrumen-tation |
---|---|---|---|---|---|---|---|
* These frame problems refer to specific challenges to constructing sampling frames based on telephone numbers or geographic areas. See the “Limitations in Survey Data” section for more information on general problems obtaining an adequate frame for small sample size groups relative to the rest of the population. | |||||||
Asian Americans |
X |
X |
|
X |
X |
|
X |
LGBT |
X |
X |
|
|
|
X |
X |
Adolescents on the autism spectrum |
X |
X |
|
|
X |
X |
X |
Rural populations |
X |
X |
X |
X |
X |
|
X |
Table I.3. The Ability of Key National Surveys to Study Four Target Populations
Data Set | Avail-ability | Sample Size | Population #1 Race | Population #1 Ethnicity/Nativity | Population #2 Sexual Orientation/Behavior | Population #3 Health/Disability Status | Population #4 Geographic Identifier |
---|---|---|---|---|---|---|---|
Current Population Survey (CPS) |
19xx-2011 |
2011, 19-64: 121,520 |
White, Black, American Indian /Aleut /Eskimo, Asian, Hawaiian /Pacific Islander, and two or more races. Asian can be further classified into subgroups. |
Hispanic origin (detailed), birthplace (state or country), mother’s birthplace, father’s birthplace, year of immigration, citizenship status |
N/A |
Self-reported health status, work disability, activity/functional limitations |
State identifier; metro status; metro area identifier; some counties identified |
American Community Survey (ACS) |
Years with health insurance question: 2008-2011 |
2010, 19-64: 1,806,189 |
White, Black, American Indian or Alaska Native, Asian Indian, Chinese, Filipino, Korean, Vietnamese, Japanese, Other Asian or Pacific Islander, Other Race, two major races, three or more major races |
Hispanic origin (detailed), birthplace (state or country), parent’s birthplaces, ancestry, year of immigration, year naturalized, citizenship status, language spoken at home, English fluency |
N/A |
Activity/functional limitations, work disability |
State, super-PUMA, PUMA, metro status, metro area, Appalachian region, county sample drawn from |
National Health Interview Survey (NHIS) |
1997-2011 |
2010, 19-64: 54,177 full file; 21,396 sample adults |
White, Black, American Indian, Alaska Native, Asian (subgroups: Chinese, Japanese, Vietnamese, Filipino, Asian Indian, Korean, other), Native Hawaiian or other Pacific Islander (Guamanian, Samoan, other). Asians were oversampled in the 2006-2009 surveys. |
Hispanic ethnicity (detailed), number of years in U.S., citizenship status, global region of birth |
Starting in 2013: http://www.hhs.gov/news/press/2011pres/06/20110629a.html |
See NHIS documentation: Various health status, health condition, activity limitation, and health behavior variables |
Region identifiers on public use; access to Census tract/block level and state identifiers at RDC |
Medical Expenditure Panel Survey (MEPS) |
19xx-2010 |
2010, 19-64: 21,596 |
Race/ethnicity data collected during the NHIS interview are available (MEPS draws sample from persons interviewed in prior NHIS survey). |
Hispanic ethnicity (detailed), born in U.S., number of years in U.S., citizenship status |
N/A |
See MEPS documentation: Self-reported health status, health condition, activity limitation, and health behavior variables |
Region only on public use; access to more detailed level at RDC |
SLAITS-National Survey of Children with Special Health Care Needs |
July 2009 - March 2011; |
2009-11, 0-17: 40,242 detailed CSHCN interviews |
White, Black, other, multiple (In some states, Hawaiian/PI, Asian, American/Alaskan Native can be identified) |
Hispanic ethnicity, citizenship, child born in U.S. and number of years, parents born in U.S. and number of years |
N/A |
See documentation: health condition/limitation/disability; behavioral, developmental, and emotional health variables; special health care needs |
State, MSA status |
National Health and Nutrition Examination Survey (NHANES) |
1999-2012 |
2009-10, 19-64: 4,861 |
White, Black, American Indian/Alaska Native, Asian, Native Hawaiian/Pacific Islander, other. Respondents asked to classify themselves as Asian Indian, Chinese, Filipino, Korean, Vietnamese, Japanese, Other Asian or Pacific Islander |
Hispanic ethnicity, country of birth, citizenship status, length of time in U.S. |
Yes: http://www.cdc.gov/NCHS/nhanes/variable_tables/sexual_behavior.htm Cognitive testing report: http://wwwn.cdc.gov/qbank/report/Miller_NCHS_2001NHANESSexualityReport.pdf |
See documentation: Medical examination data, health status, health conditions, behavioral health, etc… |
National |
National Survey of Family Growth |
2006-2010 |
2006-2010: ~10,000 men and 12,000 women, 15-44 years old |
White, Black, Hispanic, Asian, Pacific Islander |
Hispanic ethnicity (Mexican vs. all other) |
Sexual identity and |
Men’s and women’s health as related to family life, marriage and divorce, pregnancy, infertility, use of contraception. |
The geographic scope of the study is national. Detailed geographic identifiers are available on the restricted access contextual data file. |
Behavioral Risk Factor Surveillance System (BRFSS) |
1995-2011 |
2010, 19-64: 292,502 |
White, Black, Hispanic, American Indian or Alaska Native, and Asian or Pacific Islander |
Hispanic ethnicity |
About 19 states have had a question one time or other, but not necessarily every year. In 2014 there is an approved optional module on sexual orientation and gender identity. |
Self-reported health status, condition specific measures, diet, physician activity, functional limitations |
State (typically), MSA |
National Survey on Drug Use and Health (NSDUH) |
1994-2011 |
~60,000 |
White, Black, Hispanic, American Indian or Alaska Native, Native Hawaiian, other Pacific Islander, Chinese, Filipino, Japanese, Korean, Indian, Vietnamese, other Asian |
Hispanic ethnicity |
1996: “During the past 12 months, have you had sex with only males, only females, or with both males and females?” Currently testing 2 questions on sexual orientation to be added in 2015204 |
Drug and alcohol use, health care use, health conditions, mental health, health insurance |
State (typically), urban/rural |
National Immunization Survey |
1994-2012 |
2010: 17,004 |
White, Black/African American, American Indian, Alaska Native, Asian, Native Hawaiian, Pacific Islander, Other |
Hispanic, Mexican, Mexican-American, Central American, South American, Puerto Rican, Cuban/Cuban American, Spanish-Caribbean, Other Spanish/Hispanic |
N/A |
N/A |
National, State, and selected large urban areas |
SLAITS - Survey of Adult Transition and Health |
2001, 2007 |
1,865 |
N/A (“derived”?) |
Hispanic |
N/A |
Self-reported health status, disability, special health care needs, activity limitations, |
State, region, MSA |
SLAITS - National Survey of Children’s Health |
2003, 2007-2008, 2011-2012 |
2011-2012: 91800 |
White/Caucasian, Black/African-American, American Indian/Native American, Alaska Native, Asian, Native Hawaiian, Pacific Islander, Other |
Hispanic |
N/A |
Various disabilities and conditions, including autism, Asperger’s disorder, pervasive developmental disorder, or autism spectrum disorder |
State, MSA |
Medicare Current Beneficiary Survey |
1991- |
16,000 per year |
American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander, White, Some Other Race. More granular racial/ethnic categories will be added in 2014. |
Hispanic |
N/A |
Self-reported general health, functional limitations |
National |
National Latino and Asian American Study |
2002-2003 |
2,554 Latinos and 2,095 Asian Americans |
Chinese, Vietnamese, Filipino, Other Asians (others subpopulations collected but too small for subgroup analysis) |
Puerto Rican, Cuban, Mexican, Other Latinos |
N/A |
Various psychiatric disorders |
National |
National Longitudinal Study of Adolescent Health (Add Health) |
1994-95, 1996, 2001-02, 2007-08 |
2008: 15,701 |
|
|
Same-sex relationships, sexual behavior |
Self-reported health status and physical exam |
|
National Adult Tobacco Survey |
2009-2010 |
118,581 |
Non-Hispanic White, non-Hispanic Black, non-Hispanic Asian, non-Hispanic other (including American Indian or Alaska Native, Native Hawaiian or Pacific Islander, multiracial, or some other race) |
Hispanic |
Heterosexual-straight; esbian, gay, bisexual, or transgender (LGBT); or not specified. A new version of this survey is in the field that no longer captured transgender after 2010. |
General health, cigarette smoking, other tobacco use,smoke, cessation, secondhand chronic diseases |
National, State |
Table I.4. Estimated Percentage of People by Sexual Orientation and Behavior from Selected Federal and Non-Federal Sample Surveys
This table does not display the most recent estimates, but rather is presented to illustrate how federal and non-federal survey-based estimates of numbers of lesbian, gay, bisexual, and transgender people have varied by gender, over time, and according to survey methods and question wording. For more discussion, see the “Population #2: Lesbian, Gay, Bisexual, and Transgender People” section in Part I.
Survey |
Ages |
Percent of Men Identifying as Homosexual, Gay, Lesbian, or Bisexual |
Percent of Women Identifying as Homosexual, Gay, Lesbian, or Bisexual |
Percent of Men Reporting Same-Sex Partners |
Percent of Women Reporting Same-Sex Partners |
Percent of Men Reporting Some Same-Sex Desire or Attraction |
Percent of Women Reporting Some Same-Sex Desire or Attraction |
---|---|---|---|---|---|---|---|
Notes: Estimates are based on small sample sizes, resulting in large confidence intervals around the estimates; see the text for details. Also, differences in estimates can occur because of sampling error (that is, the estimates in the table are based on probability samples) and nonsampling error, errors due to differential nonresponse and coverage, differences in the target population (the cohorts surveyed), differences in the survey questionnaires used, year of implementation, mode of administration, and the survey respondent. ORIGINAL SOURCE: Institute of Medicine. “The Health of Lesbian, Gay, Bisexual, and Transgender People.” March 31, 2011. http://www.iom.edu/Reports/2011/The-Health-of-Lesbian-Gay-Bisexual-and-Transgender-People.aspx Table Sources: Herbenick et al. (2010), Table 1, for results from the NSSHB; Gates (2010), Figures 1 and 7, for results from the GSS; Mosher et al. (2005), Tables 12 and 13, for results from the NSFG; Laumann et al. (1994a), Table 8.2, for results from the 1992 NHSLS. |
|||||||
National Survey of Sexual Health and Behavior, 2010 |
18+ |
6.8 |
4.5 |
— |
— |
— |
— |
General Social Survey, 2008 |
18+ |
2.9 |
4.6 |
— |
— |
— |
— |
General Social Survey, 2008 |
18 - 44 |
4.1 |
4.1 |
10.0 |
10.0 |
— |
— |
National Survey of Family Growth, 2002 |
18 - 44 |
4.1 |
4.1 |
6.2 |
11.5 |
7.1 |
13.4 |
National Health and Social Life Survey, 1992 |
18 - 59 |
2.8 |
1.4 |
7.1 |
3.8 |
7.7 |
7.5 |
Table I.5. Common Rural Taxonomies Used by the Federal Government
Taxonomy |
Unit |
Urban Definition (rural is what’s left) |
Limitation |
---|---|---|---|
Source: Summarized from Hart 2005.205 | |||
OMB Metropolitan and Nonmetropolitan Taxonomy |
Counties |
Defines metropolitan areas as counties with 1 or more urbanized area (based on population size) and counties economically tied to that core, measured by commuting to work. |
County boundaries may over- or under-bound urban core |
USDA Economic Research Service Urban Influence Codes (UIC) |
Counties |
Builds on OMB metro and nonmetro dichotomy to create continuum based on population size and adjacency/nonadjacency to metro counties |
Frequently used for research but not for federal or state policy |
Census Bureau Rural and Urban Taxonomy |
Census-tract |
Urban clusters based on population size |
Limited health-related data available at the census tract level, which is not stable over census years |
Rural/Urban Commuting Area Taxonomy (RUCA) |
Census-tract |
Based on work commuting flows |
Difficult to link to health data, often collected at the county or zip code level. A zip-code based version has been developed for this purpose, but is complex to use. |
Table I.6. Potential Areas for Further Research
Population |
Subpopulation |
Health Issue |
Challenges in Studying with Existing Federal Survey Data |
---|---|---|---|
Asian subpopulation |
Vietnamese women |
Cervical cancer |
Difficulty disaggregating Vietnamese women and self-report of cervical cancer diagnosis |
Filipino |
Diabetes |
Difficulty disaggregating Filipino and self-report of diabetes diagnosis |
|
Lesbian, Gay, Bisexual, Transgender |
Lesbian women |
Obesity |
Limited data collected on sexual identity and self-reported weight |
LGBT Youth |
Mental health |
Limited data collected on sexual identity or potential unwillingness to respond to survey questions around mental health |
|
Rural |
Minorities |
Access to care |
Language barriers prevent adequate representation |
Autism spectrum disorders |
Adolescents in transition to adulthood |
Transition to adulthood |
Lack of longitudinal data and inconsistent definitions of disability between children and adulthood |
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