1. Addiction Health Services Data Sources Yih-Ing Hser, Ph.D. UCLA Integrated Substance Abuse Programs CALDAR Summer Institute 2015 Supported by the National Institute on Drug Abuse (P30 DA016383)

2. 2 Defining Health Services Research Multidisciplinary field of scientific inquiry that: Social Factors Financing Organization Management Technologies Individual Factors Access & Utilization Quality of Care Cost of Care Personal & public health & well being Examines how:Affect: For individuals, families, organizations & institutions, and communities & populations Epidemiological data provide the context for the extent of problems

3. 3 Research questions Epidemiological questions – Prevalence, incidence, risk factors Service questions – Facility, workforce, services, finance, cost – Access, utilization, outcome Monitoring questions & Consequences and correlates – Morbidity, mortality, crime, HIV/AIDS Quality, process, and outcome questions – Performance measures – Evaluation studies

5. 5 Dataset Considerations Type of data – Survey vs. administrative Reporting level – Person, facility Unit of data – Case, episode, visit Time – Recency, frequency Sampling – Census vs. sample

6. 6 Selected Epidemiological Surveys/Data Systems in the United States l National Survey on Drug Use and Health (NSDUH) l National Comorbidity Survey (NCS) & – Replication (NCS-R) l Arrestee Drug Abuse Monitoring Program (ADAM) l High School Survey or Monitoring the Future (MTF) l Youth Risk Behavior Surveillance Survey (YRBSS) l National Longitudinal Survey of Youth (NLSY79, 97) l National Longitudinal Study of Adolescent to Adult Health (Add Health) l National Epidemiological Study on Alcohol and Related Conditions (NESARC) l Treatment Episode Data Set (TEDS) l NIDA Clinical Trials Network (CTN) l Drug Abuse Warning Network (DAWN ) l National Death Index (NDI) l Uniform Crime Report (UCR)

7. 7 National Survey on Drug Use and Health (NSDUH) Sample –Nationally representative sample of U.S. household residents 12 years and older (permitting state estimates since 2000, e.g., 68,736 completed survey); sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA). Formerly: National Household Survey on Drug Abuse (NHSDA) Data Collection –Self-report survey Sampling –Stratified/multistage Timeframe –Cross-section every 2-3 years since 1972; annually since 1991 Relevance to Drug Abuse –Use of alcohol, tobacco, and licit and illicit drugs in the past 30 days, past year, lifetime; includes DSM-IV diagnostic criteria. Also includes questions on mental health, physical health, treatment and other forms of help-seeking; data can be broken out by state. Comments –Refusal Rates 16-33%. No coverage of high risk groups not in households. Website: http://www.oas.samhsa.gov/nsduh.htm

8. 8 Past-year Substance Use by Age Source: National Survey of Drug Use & Health 2011, N=58,397 8 alcohol

9. 9 Substance use disorder (SUD) and Comorbid Mental Illness in the past year: 2013 Source: SAMHSA, Center for Behavioral Health Statistics and Quality, National Survey on Drug Use and Health, 2013

10. 10 National Comorbidity Survey (NCS) NCS-Replication (NCS-R)/NCS-Adolescents (NCS-A ) Purpose –The National Comorbidity Survey (NCS) was a collaborative epidemiologic investigation designed to study the prevalence and correlates of DSM III-R disorders and patterns and correlates of service utilization for these disorders. The NCS, conducted in 1991-1992, was the first survey to administer a structured psychiatric interview to a nationally representative sample. Follow-up conducted in 2001-02. –The NCS-R took place in 2001–2003 and refined categories of treatment utilization –The NCS-A surveys 10,000 adolescents. Sample and Data Collection –The NCS used a household sample of over 8,000 respondents aged 15 to 54 in the non- institutionalized civilian population in the 48 coterminous U.S. and was based on a stratified multistage area probability sample. The study also included a supplemental sample of students living in campus group housing and a non-respondent survey. Diagnoses were based on a modified version of the Composite International Diagnostic Interview (the UM-CIDI), which was developed for the NCS. Relevance to Drug Abuse –Includes diagnoses for substance use; focus on co-occurring mental and substance use disorders; sponsored by the National Institute on Mental Health (NIMH) Website: http://www.hcp.med.harvard.edu/ncs/

11. 11 Lifetime Prevalence of AOD and MH Disorders ECA (1980-84) NCS (1990-92) NCS-R (2001-03) Any psychiatric disorder 33%48%46% Any affective disorder 8%19%21% Any anxiety disorder 15%25%29% Alcohol/drug disorder 17%27%15% Any comorbidity 54%56%

12. 12 Arrestee Drug Abuse Monitoring Program (ADAM) Sample –Approximately 225 male and 100 female adult arrestees, and 100 juveniles male and female per study site. Data Collection –Urine tests and self-report by personal interview. Sampling –Non-random samples; sampling priority given to non-drug offenses over drug offenses. Selected more than 20 of the largest cities nationwide. Timeframe –DUF (Drug Use Forecasting Program: Quarterly since 1986 to 1997 –ADAM I (1998-2003). –ADAM II (2007-present) Relevance to Drug Abuse –Drug use and related behavior among a criminal justice sample Comments –Non-probability sample of arrestees or a representative sample of jurisdictions; objective measure (urine test) is a validity check on self- report; detailed data which can be mapped onto UCR. Website: http://www.nij.gov/topics/drugs/markets/adam/Pages/welcome.aspxhttp://www.nij.gov/topics/drugs/markets/adam/Pages/welcome.aspx

13. Percentage Testing Positive for Any Drug Differences between each year and 2013 are significant at the 0.05 level or less. Source: ADAM II 2013 Annual Report

14. 14 Youth Surveys

15. 15 Monitoring the Future (MTF) (High School Senior Survey) Sample –Nationally representative sample (N = ~50,000 in 2010) high school students, seniors, young adults, college students Data Collection –Self-report survey Sampling –Multistage - representative of all high schools in the U.S. Timeframe –Annual since 1975. Relevance to Drug Abuse –Drug-related attitudes, opinions, use of various drugs. Also includes questions such as attitudes toward drug use, government, social institutions, race relations, changing roles for women, educational aspirations, occupational aims, and marital and family plans. Comments –No coverage of dropouts, thus conservative estimates. Reliable for assessing trends. Website: http://monitoringthefuture.org/

16. Trends in 30-Day Prevalence of Use of Various Drugs for Grades 8, 10, and 12 Combined Source: Monitoring the Future, Overview 2014 16

17. 17 Latest report in 2014 E-cigarettes surpass regular cigarettes among U.S. teens. Johnston, L. D., & Miech R. (December 15, 2014)

18. 18 Youth Risk Behavior Surveillance Survey (YRBSS) Purpose –YRBSS monitors six categories of priority risk behaviors among youth and young adults: tobacco use, alcohol and other drug use, sexual behaviors that contribute to unintended pregnancy and sexually transmitted diseases, unhealthy dietary behavior, and physical inactivity. Sample –Includes national, state, territorial and local school-based surveys of high school students since 1991. Data Collection & Sampling –In-school self-administered questionnaire designed to protect student’s privacy. Voluntary. Relevance to Drug Abuse –Includes questions of alcohol and other drug use, in addition to other risk factors. Comments –Only captures those students in school at time of survey. 1997 data includes separate analysis of data for black and Hispanic students. Schools with substantial numbers of black and Hispanic students were sampled at a higher rate than other schools. Website: http://www.cdc.gov/HealthyYouth/yrbs/index.htm

19. Percentage of High School Students Who Currently Used Marijuana,* 1991-2013 † *One or more times during the 30 days before the survey. † Increased 1991-2013, increased 1991-1995, decreased 1995-2013 [Based on linear and quadratic trend analyses using logistic regression models controlling for sex, race/ethnicity, and grade (p < 0.05). Significant linear trends (if present) across all available years are described first followed by linear changes in each segment of significant quadratic trends (if present).] National Youth Risk Behavior Surveys, 1991-2013

20. 20 Longitudinal Surveys

21. 21 National Longitudinal Survey of Youth (NLSY79) Purpose –Data is used to examine a variety of policy issue relating to employment and the workplace, education, training, family, mobility, substance use, juvenile delinquency, and fertility. Sample –Nationally representative sample of 12,686 young men and women ages 14-22 when first interviewed in 1979. Oversampled blacks, Hispanics, economically disadvantaged whites and youth in the military. In 1994, 8,891 interviewed at a 89.2% response rate. Data Collection & Sampling –Probability sampling, annual personal interviews from 1979-1994. Relevance to Drug Abuse –Drug supplements included in 1988, 1992 and 1994 include first use, most recent use, and use in past 30 days of various substances. Data can be used to analyze the relationship between drug use and numerous behaviors such as labor-market outcomes, marital status, and fertility. Comments –Breadth of information, event history format, cohort design make data useful for analysis. Limitations are results are cohort specific and subgroup sample sizes can be small. Website: http://www.bls.gov/nls/

22. 22 Employment Trajectory Groups Male: Female: Four of the five trajectory groups identified for females are similar to those for males. There were a notably observed proportion of males in the High trajectory group (76.5% vs. 58.8% of females).

23. 23 Drug Use (Ever) by Employment Trajectory Groups Male: Female:

24. 24 National Longitudinal Study of Adolescent to Adult Health (Add Health) Purpose –To study health-related behavior of adolescents in grades 7-12 with a focus on examining causes of behavior and the influence of social context Sample –3 stage interview conducted b/w 1994-1996, included approximately 90,000 cases in stage one (in school), 20,745 in stage two (in home) and 14,800 in stage three. The most recent interview is in 2008 when the sample was aged 24-32. Wave V starts 2015. Data Collection & Sampling –stratified random sample, nationally representative of adolescents in junior high & high school. Relevance to Drug Abuse –Questions about risk behaviors, expectations for the future, self-esteem and health status. In home survey includes questions about decision-making process, criminal activities & substance use. Comments –Sample is large and representative of U.S. junior high and high school populations, but does not include individuals not enrolled in school at the beginning of study. Oversamples in stage 2 of Chinese, Cuban, and Puerto Rican students. Website: http://www.cpc.unc.edu/projects/addhealth

25. 25 National Epidemiological Study on Alcohol and Related Conditions I & II (NESARC) Purpose –To measure prevalence of alcohol and drug use, abuse and dependence and co- occurring mental disorders in the U.S. using clinically derived measures of disorders. Sample –Two waves of interviews were conducted in 2001 – 02 and 2004 – 05; N = 43,862; nationally representative. Includes non-incarcerated U.S. population; Blacks and young adults oversampled. Data Collection & Sampling –In-person interviews with randomly selected persons. Response rate approximately 95%. Relevance to Drug Abuse –Diagnoses were derived using the Alcohol Use Disorder and Associated Disabilities Interview Schedule – DSM-IV Version (AUDADIS-IV), which distinguishes between independent and substance-induced mental disorders. NESARC II includes measures of stressful life events (e.g., 9/11); adverse childhood events; intimate partner violence; social support networks. Comments –Diagnostic specificity of the NESARC is advanced over prior epidemiological studies, including past-year, prior-to-past year time frames. Website: http://www.niaaa.nih.gov

26. 26 Addiction is a Developmental Disorder: Onset is During Adolescence Compton et al. Arch Gen Psychiatry 2007;64:570.

27. 27 Sources for Longitudinal Data on Drug Users Aging with HIV Examples of large cohort studies: -MACS - MSM -WIHS - Women -VACS- Veterans -ALIVE - IDUs

28. 28 Access, Utilization, Outcomes (community treatment) Access – Survey, waiting list, gap analysis Utilization – Treatment admissions and discharges Outcomes – Evaluation, cost Disparities?

29. 29 National Survey on Substance Abuse Treatment Services (N-SSATS) N-SSATS is designed to collect information from all facilities in the U.S., both public and private, that provide substance abuse treatment (formerly known as the National Drug and Alcohol Treatment Unit Survey [NDATUS] and Uniform Facility Data Set [UFDS]) Assist SAMHSA and State and local governments in assessing the nature and extent of services provided in State-supported and other treatment facilities and in forecasting treatment resource requirements; Update SAMHSA’s Inventory of Substance Abuse Treatment Services (I-SATS), which includes all known drug and alcohol abuse treatment facilities; Analyze substance abuse treatment services trends and conduct comparative analyses for the nation, regions, and States; Generate the National Directory of Drug and Alcohol Abuse Treatment Programs, a compendium of facilities approved by State substance abuse agencies for the provision of substance abuse treatment; Update the information in SAMHSA’s Substance Abuse Treatment Facility Locator, a searchable database of facilities approved by State substance abuse agencies for the provision of substance abuse treatment.

30. 30 Treatment Episode Data Set (TEDS) Sample –All clients entering substance abuse treatment. –Data Collection –Admissions records. Sampling –All admissions nationwide in programs receiving state or Federal funding. Timeframe –Prior to 1989, data collected as part of the Client-Oriented Data Acquisition Process (CODAP) Relevance to Drug Abuse –Collect demographic and background characteristics of persons admitted to private and public non-profit substance abuse treatment programs. Primary, secondary, and tertiary type of substance use, source of referral, education level, employment status, housing status, type of treatment received Comments –Limited by number of available treatment slots; admissions based system, admissions do not represent individuals. Website: http://www.icpsr.umich.edu/icpsrweb/SAMHDA/index.htmlhttp://www.icpsr.umich.edu/icpsrweb/SAMHDA/index.html

31. Primary substance of abuse at admission: 2002-2012 31 Among substance abuse treatment admissions with a psychiatric problem: 2012 Treatment Episode Data Set (TEDS) 2002 - 2012

32. 32 NIDA Clinical Trials Network (CTN) Large, Multi-Site Randomized Controlled Clinical Trials – Scientific credibility Diverse Research Areas Medications, behavioral therapies, services, surveys, HIV prevention, etc… Translating clinic research findings to practice Integration http://www.ctndatashare.org/

33. 33 Surveillance Data Drug Abuse Warning Network (DAWN) National Death Index (NDI) Uniform Crime Reports (UCR) HIV/AIDS ( http://kff.org/archived-kaiseredu-org-tutorials/ ) Surveillance data: The responses obtained for the variables or attributes in the surveillance system, which involves the systematic, ongoing collection and/or acquisition of information for a specific disease or hazard

34. 34 Drug Abuse Warning Network (DAWN) Sample –Case reports of emergency room (ER) visits and Medical Examiner (ME) mentions from 24-27 SMSAs. Data Collection –Record abstraction. Sampling –All non-Federal short-stay general hospitals with ER’s open 24hrs/day, and all ME’s in 24-27 SMSAs. Geographic Coverage –Major SMSAs nationwide Timeframe –Continuous since 1972. Semi-annual reports. Relevance to Drug Abuse –ER visits and ME mentions where drug abuse is involved. Comments –Noncoverage of Federal hospitals, children under age 6. Non-person based. Largely clinical signs and self-report. Not lab confirmed. Website: http://www.samhsa.gov/data/emergency-department-data-dawnhttp://www.samhsa.gov/data/emergency-department-data-dawn

35. 35 Rates of Emergency Department (ED) Visits Involving Illicit Drugs among Patients Aged 12 to 24 per 100,000 Population, by Age Group: 2011

36. 36 National Death Index (NDI) Description –The National Death Index (NDI) is a central computerized index of death record information on file in the State vital statistics offices. Working with these State offices, the National Center for Health Statistics established the NDI as a resource to aid epidemiologists and other health and medical investigators with their mortality ascertainment Data Collection –Reports to Centers for Disease Control. Timeframe –Continuous since 1966. Relevance to Drug Abuse –Cause of death information is available, using ICD-9 or ICD-10 codes. Includes alcohol- and drug-related deaths, AIDS, hepatitis-B. Comments –Drug-use information not available unless directly related as causes or factor contributing to factors of death. –Website: http://www.cdc.gov/nchs/ndi.htm

37. 37

38. 38 Uniform Crime Reports (UCR) Sample –Summary of arrests made to law enforcement agencies. Measures incidence of crime, most serious reported. Data Collection –Aggregate by agency. Sampling –Voluntary, but required if agencies apply for federal funding. Timeframe –Continuous since 1966. Relevance to Drug Abuse –Drug-related crimes and arrests. Comments –Only most serious crime reported in multiple charge cases (drug crimes are usually less serious); aggregate summaries only - not case by case. Relies on agency reporting and widely acknowledged that differential data collection occurs between agencies. –Website: http://www.albany.edu/sourcebook/http://www.albany.edu/sourcebook/ –http://www.fbi.gov/about-us/cjis/ucr/ucrhttp://www.fbi.gov/about-us/cjis/ucr/ucr

39. 39 Global Information Networks are Driving Knowledge Creation and Collaboration… Global Telegraph Network Global Internet Traffic Flow, Source: PriMetrica, Inc. Source: Heidelberg University

40. Healthcare Information Network 40 Electronic Health Records