Design Features of Add Health Kathleen Mullan Harris* Carolina Population Center University of North Carolina at Chapel Hill September 2005 Abstract: This document was prepared to be used by those interested in a ready reference for the design features of the National Longitudinal Study of Adolescent Health (Add Health). It provides a summary of features incorporated in the first ten years of completed work on the project. It also provides a description of the field work planned for a fourth wave of home interviews to be conducted in the years 2007-08 on the same sample. The reader is referred to our web site (www.cpc.unc.edu/addhealth) for additional information, and for availability of data. Parts of this document may be incorporated into other documents for grant applications, papers for publication, or public presentations, without further permission. This document will be useful for those planning to use existing Add Health data. It should also be useful for those who want to submit independent grant proposals that require Wave IV data. Those data will be available early in 2009. *Kathleen Mullan Harris, PhD, is Principal Investigator and Director of Add Health ([email protected]). Address correspondence to Add Health, Carolina Population Center, CB# 8120, University Square, 123 W. Franklin St., Chapel Hill, NC 27516. INTRODUCTION AND OVERVIEW The National Longitudinal Study of Adolescent Health (Add Health) is a longitudinal study of a nationally representative sample of adolescents in grades 7-12 in the United States in 1994-95 who have been followed through adolescence and the transition to adulthood with three in-home interviews. Add Health was developed in response to a mandate from the U.S. Congress to fund a study of adolescent health and was designed by a nation-wide team of multidisciplinary investigators from the social, behavioral, and health sciences. The original purpose of the research program was to help explain the causes of adolescent health and health behavior with special emphasis on the effects of multiple contexts of adolescent life. The study to date has been funded by two program projects over the period 1994-2004. During this period Add Health has become a national data resource for over 2,500 Add Health researchers who have obtained more than 200 independently funded research grants and have produced hundreds of research articles published in multiple disciplinary journals and research outlets. Add Health research has exploited its unique design to explore the role of social contexts in the lives of adolescents. Early research identified the importance of family and school connections as protective factors in adolescence (Resnick et al. 1997). New research on how peers matter, which peers matter, and in what contexts and for which behaviors peer influences are most important have been conducted with the extraordinary network data in Add Health (e.g., Bearman and Brückner 1999; Harris and Cavanagh 2005; Haynie 2001; Moody 2001a, 2001b; South and Haynie 2004; Quillian and Campbell 2003). The primal role of the family context for adolescent development has been confirmed with Add Health data, highlighting the importance of family structure, family income, family social capital, parental education, parental involvement, and parent-child relations for adolescent behavior and well-being (e.g., Crosnoe 2004; Dittus and Jaccard 2000; Evenhouse and Reilly 2004; Harris and Ryan 2004; Rowe and Jacobson 1999; Tillman 2003; Videon 2002). Neighborhood and school effects have been identified with respect to such outcomes as academic achievement, school attachment, future expectations, aggression, sexual behavior, emotional well-being, delinquency, violence, physical activity, and obesity (Cleveland 2003; Crosnoe and Muller 2005; Duncan, Harris, and Boisjoly 2001; Gordon-Larsen, Adair, and Popkin 2003; Harris, Duncan, and Boisjoly 2002; Rowe, Almeida and Jacobson 1999). The hallmark of Add Health is innovative analysis of the ways in which contexts, measured at multiple levels of observation, interact (Bearman and Brückner 2001; Regnerus and Elder 2003). New collaborations, focusing on the identification of social contexts that facilitate genetic expression on health behaviors, such as regular tobacco and alcohol use as well as delinquent and violent behavior are ground-breaking (Duncan, Harris, and Boisjoly 2001; Guo and Stearns 2002; Rowe, Almeida, and Jacobson 1999). In addition to the findings on social context effects, Add Health research has contributed more broadly to the literature on the health status and successful adjustment of adolescents. Critical health concerns of adolescents have received substantial research attention, including the correlates of overweight status and obesity, physical exercise, diet, and body image (Harris, King, and Gordon-Larsen 2005; Gordon-Larsen, Adair, and Popkin 2002; Gordon-Larsen, Popkin, and McMurray 2000), pubertal timing and development (Adair and Gordon-Larsen 2001; Cavanagh 2 2004), health care (Billy et al. 1998; Ford, Bearman, and Moody 1999), use of contraception and sexually transmitted infections (Halpern et al. 2004; Kelley, Borawski, and Keen 2003; Jaccard, Dodge, and Dittus 2001; Upchurch and Kusunoki 2004; Upchurch et al. 2005), mental health (Bearman and Moody 2004; Borowsky, Ireland, and Resnick 2001; Hallfors et al. 2004), and risk behavior (Hagan and Foster 2001; Halpern et al. 2000; Haynie 2001; Harris, Duncan, and Boisjoly 2002; Kandel et al. 2004; Pearce and Haynie 2004). Add Health has also made possible important new research on the health status and health behaviors of special populations such as disabled youth (Cheng and Udry 2002; 2003; 2005), adopted youth (Feigelman and Finley 2004; Miller et al. 2000a, 2000b), youth living with surrogate parents or relatives (Harris and Ryan 2004; Heard 2002), multiracial youth (Harris and Sim 2002; Udry, Li, and Hendrickson-Smith 2003), youth with same-sex romantic attractions or relationships (Halpern et al. 2004; Russell 2003; Udry and Chantala 2002, 2005), and adolescents in immigrant families (Bankston and Zhou 2002; Harris 1999; Tillman, Guo, and Harris 2005). The remainder of this document describes the design features of Add Health, for data already collected in Waves I, II, and III, and to be collected in a planned Wave IV follow up. We encourage researchers and students of public health, human development, biomedical sciences, and related fields to explore the possibilities in this rich dataset. THE ADD HEALTH SAMPLE AND DESIGN Schools as Primary Sampling Units Add Health used a school-based design. The primary sampling frame was derived from the Quality Education Database (QED). From this frame we selected a stratified sample of 80 high schools (defined as schools with an 11th grade and more than 30 students) with probability proportional to size. Schools were stratified by region, urbanicity, school type (public, private, parochial), ethnic mix, and size. For each high school selected, we identified and recruited one of its feeder schools (typically a middle school) with probability proportional to its student contribution to the high school, yielding one school pair in each of 80 different communities. More than 70 percent of the originally selected schools agreed to participate in the study. Replacement schools were selected within each stratum until an eligible school or school-pair was found. Overall, 79 percent of the schools that we contacted agreed to participate in the study. Because some schools spanned grades 7 to 12, we have 132 schools in our sample, each associated with one of 80 communities. School size varied from fewer than 100 students to more than 3,000 students. Our communities were located in urban, suburban, and rural areas of the country. From September 1994 until April 1995, in-school questionnaires were administered to students in these schools. Each school administration occurred on a single day within one 45- to 60minute class period. Add Health completed in-school questionnaires from over 90,000 students. The in-school questionnaire provided measurement on the school context, friendship networks, school activities, future expectations, and a variety of health conditions. An additional purpose of the school questionnaire was to identify and select special supplementary samples of individuals in rare but theoretically crucial categories. School administrators also completed a 3 30-minute questionnaire in the first and second waves of the study. Core and Special Supplemental Samples Add Health obtained rosters of all enrolled students in each school. From the union of students on school rosters and students not on rosters who completed in-school questionnaires, we chose a sample of adolescents for a 90-minute in-home interview constituting the Wave I in-home sample. To form a core sample, we stratified students in each school by grade and sex and randomly chose about 17 students from each strata to yield a total of approximately 200 adolescents from each pair of schools. (Students who did not participate in the in-school survey were eligible to be selected for participation in this sample.) The core in-home sample is essentially self-weighting, and provides a nationally representative sample of 12,105 American adolescents in grades 7 to 12. From answers provided on the in-school survey, we drew supplemental samples based on ethnicity (Cuban, Puerto Rican, and Chinese), genetic relatedness to siblings (twins, full sibs, half sibs, and unrelated adolescents living in the same household), adoption status, and disability. We also oversampled black adolescents with highly educated parents. The number of adolescents in each of these special samples who were interviewed at Wave I are shown in Table 1 below. Note that individuals can be assigned to more than one group. For example, a Cuban twin pair would be counted as two of the 538 Cubans and one of the 767 twin pairs in Wave I. Table 1. Case Counts in Add Health Wave I Data (Notes: overlaps not removed; * numbers represent pairs of adolescents). Core Sample Cuban Puerto Rican Chinese High-Education Black Disabled Full Sibling* Half Sibling* Non-related* Adopted Twin* Saturated Sample 12,105 538 633 406 1,547 957 1,251 442 662 560 784 3,702 For two large schools and 14 small schools, interviews with all enrolled students were also attempted in Wave I. The two large schools were selected purposefully. One is predominantly white and is located in a small town; the other is characterized by marked ethnic heterogeneity and is located in a major metropolitan area. The 14 smaller schools are located in rural and urban areas, and both public and private schools are represented. We collected complete social network data in the saturated field-settings, providing unbiased and complete coverage of the social networks and romantic partnerships in which adolescents are embedded by generating a large number of romantic and friendship pairs for which both members of the pair have in-home interviews. The core sample plus the special samples produced a sample size of 20,745 adolescents in Wave I. Below we show the Add Health study design for selecting the in-school 4 5 and in-home Wave I samples. The Wave I in-home sample is the basis for all subsequent longitudinal follow-up interviews, and thus this innovative design remains a major strength of the longitudinal data as well. Seventy-nine percent of all sampled students in all of the groups participated in Wave I of the inhome phase of the survey (20,745). A parent, usually the resident mother, also completed a 30minute op-scan interviewer-assisted interview. Over 85 percent of the parents of participating adolescents completed the parental interview in the first wave. The parent questionnaire gathered data on such topics as heritable health conditions, marriage and marriage-like relationships, involvement in volunteer, civic, or school activities, health-related behaviors, education, employment, household income and economic assistance, parent-adolescent communication and interaction, the parent’s familiarity with the adolescent’s friends and friends’ parents, and neighborhood characteristics. In 1996, all adolescents in grades 7 through 11 in Wave I (plus 12th graders who were part of the genetic sample and the adopted sample) were followed up one year later for the Wave II in-home interview (N=14,738). We conducted the adolescent in-home interviews using audio-CASI technology (audio-computer assisted self interview) on laptop computers for sensitive health status and health-risk behavior questions. Add Health was the first national study to use ACASI technology in an adolescent population. The use of ACASI and CASI techniques has been found to enhance the quality of self-reporting of sensitive and illegal information (Turner et al. 1998). The school and Waves I and II in-home interviews constitute the adolescent period in Add Health and contain unique data about family context, school context, peer networks, spatial networks, and genetic pairs. The social context data, in particular, are unusual because we did not rely on self-reports to generate an image of an adolescent’s world. Family context data come from parent questionnaires, from adolescent in-school and in-home questionnaires, and from interviews with additional adolescents living in the same household. For certain measures, such as parenting behaviors and parent-child relations, we have reports from both the child’s and the parent’s perspective (and in some cases from a sibling as well). Contextual Data School context data come from the administrator questionnaires (usually principals) who reported on school policies, the provision of health services, and other school characteristics. In addition, school context variables can be constructed by aggregating student responses from the in-school and in-home questionnaires, enabling researchers to describe schools with respect to their social demographic composition, the behaviors of their students, the health status of their students, and the attitudes of their students towards school. Peer network data were obtained in the in-school questionnaire. Adolescents nominated their five best male and five best female friends from the school roster (using a unique id). Because nominated school friends also took the in-school interview, characteristics of respondents peer networks can be constructed by linking friends’ data from the in-school questionnaire and constructing variables based on friends’ actual responses. In the in-home Wave I and Wave II interviews, respondents nominated their best friend, as well as their romantic and sexual partners. If their friend or partner is also a member of the in-home sample, their data can be linked to 6 construct friendship and partner contexts. In the 16 schools that were part of the “saturated” sample, all students in the school were also interviewed in the home. Complete friendship and sexual networks can therefore be constructed with these data. Spatial data indicating the exact location of all households in the survey were collected using hand-held Global Positioning System (GPS) devices or recording actual addresses. These data make possible the interweaving of spatial and social networks, and the construction of community contexts. More than 2,500 attributes for community and neighborhood contexts at multiple spatial units of observation have been obtained and merged with the Wave I and Wave II survey data to describe the neighborhood and community contexts in which adolescents are embedded. Neighborhood and community data were gathered from a variety of sources, such as the U.S. Census, the Centers for Disease Control and Prevention, the National Center for Health Statistics, the Federal Bureau of Investigation, and the National Council of Churches. Finally, the “genetic pairs data,” based on more than 3,000 pairs of adolescents who have varying degrees of genetic relatedness (see Table 1), represent a fully articulated behavioral genetic design, and are unprecedented for a national study of this magnitude. These data represent pairs of adolescents who took the exact same questionnaires, share the same home environment, and share, in most cases, the same school and neighborhood environment. Thus, from the outset, Add Health was designed to address biological contributions to health by permitting researchers to explore gene-environment interactions in relation to health and behavioral outcomes. In addition, the embedded genetic design created new opportunities for research on adolescents living in relatively rare family structures, such as blended step-families and surrogate-parent families, and research on adopted children with a remarkable sample of 560 adopted children in Wave I of Add Health. In all followup interviews, high priority has been placed on locating and reinterviewing pairs in the genetic sample to maintain the integrity of this sample for longitudinal research purposes. The Transition to Adulthood: Wave III With NICHD funding for a continuation of the program project, Add Health conducted a Wave III follow-up interview with original Wave I respondents as they entered the transition to adulthood. When adolescents finish high school, they enjoy greater independence and begin to explore new lifestyles. As a result, their social contexts change and their experiences broaden. Wave III data capture these expanding experiences by focusing on the multiple domains of young adult life that individuals enter during the transition to adulthood, and their well-being in these domains: labor market, higher education, relationships, parenting, civic participation, and community involvement. With the longitudinal data from adolescence, this third wave of inhome interviews allows researchers to map early trajectories out of adolescence in health, achievement, social relationships, and economic status and to document how adolescent experiences and behaviors are related to decisions, behavior, and health outcomes in the transition to adulthood. The fundamental purpose of this third follow-up was to understand how what happens in adolescence is linked to what happens in the transition to adulthood when adolescents begin to negotiate the social world on their own and develop their expectations and goals for their future adult roles. Wave III data collection was conducted nationwide (including Hawaii and Alaska) between 7 August 2001 and April 2002. Respondents were now aged 18-26 and in the midst of the transition to adulthood. Add Health completed interviews on 15,170 respondents at Wave III, resulting in a 76% response rate. (For more details, see Wave III nonresponse report at http://www.cpc.unc.edu/projects/addhealth/files/W3nonres.pdf). In the interest of confidentiality, no paper questionnaires were used. As in earlier waves, data were recorded on laptop computers. For less sensitive material, the interviewer read the questions and entered the respondent's answers. For more sensitive material, the respondent entered his or her own answers in privacy. The average length of a complete interview was 134 minutes. The laptop interview took approximately 90 minutes and was immediately followed by the collection of biological specimens. Most interviews were conducted in respondents' homes. In Wave III we continued to collect data on health and health related behavior that were measured at earlier waves, including repeated measures of diet, physical activity, access and use of health services, sexual behavior, contraception, sexually transmitted infections, pregnancy and childbearing, suicidal intentions and thoughts, mental health and depression, substance use and abuse, injury, delinquency, and violence. We again obtained physical measurements of height and weight, and collected data on pubertal development, chronic and disabling conditions, and other forms of morbidity. Wave III contains new data specific to the late adolescent, young adulthood life stage on parent-child and sibling relations, contact with friends from high school, the role of mentors and mentoring relationships, personal income, wealth and debt, civic and political participation, children and parenting, involvement with the criminal justice system, and religion and spirituality. Extensive data were collected on relationships, including a complete history since Wave I and measures of relationship intimacy, quality, commitment, shared activities, length, exclusivity, and sexual, union, and fertility behaviors. Codebooks for all three waves of Add Health instruments can be downloaded from the Add Health website at http://www.cpc.unc.edu/projects/addhealth/codebooks. Wave III Design Features We incorporated several new design features into Wave III that tapped research topics particularly salient in the late adolescent-early adulthood life stage. • Binge Sample: A special sub-sample of freshman and sophomores in 2- and 4-year colleges was chosen, along with a control group of non-college same-age peers, and administered additional questions about binge drinking for an independently funded R01 grant on that topic. • College Context: College names were recorded so that college context data can be linked and merged with respondent data for those in college. • Biological Specimens: New data collection of biological specimens was included in Wave III. At the end of the Wave III interview, urine and saliva samples were collected for tests of HIV and curable STDs. Additional saliva was also collected from a subsample of the genetic sample (full sibs and twins) for DNA extraction. (For more information, see the report on Wave III Biomarker Data Collection at http://www.cpc.unc.edu/projects/addhealth/files/biomark.pdf.) Several publications using these data have reported STD and HIV prevalence rates found in our national sample at 8 Wave III (Miller et al. 2004a, 2004b, forthcoming; Morris et al. forthcoming). • Couples Sample: Wave III contains a new “couples sample” in which Add Health respondents recruited their romantic partners to take the same Wave III interview as their Add Health partner. The couples sample is made up of slightly over 1,500 pairs of partners, with roughly 500 married couples, 500 cohabiting couples, and 500 dating couples. For more details on the Add Health research design, design documents, available data sets, codebooks, and publications, please see Harris et al., 2003. Additional Add Health Wave III Data There are two independently funded projects that will contribute additional data to Add Health. Researchers at the University of Texas have collected the high school transcripts of Add Health Wave III sample members and their partners in the couples sample in coordination with the Wave III fieldwork. This study, Adolescent Health and Academic Achievement (AHAA) collected high school transcripts and other data from all Add Health high schools except two special education schools that did not maintain students’ academic transcripts, and from approximately 1,400 additional schools where Add Health respondents last attended high school. Approximately 91% of Wave III respondents signed a valid transcript release form and high school transcripts were collected for most respondents (N= approximately 12,000). AHAA also collected detailed school information, course offerings, and school contextual measures from the schools last attended by the AHAA Wave III sample. The transcripts were coded using procedures designed for the National Educational Longitudinal Study (NELS) and the National Assessment of Educational Progress (NAEP). The transcript data provide detailed information on students’ grades, courses taken, the overarching academic structure of each students school, and information on the last school each student attended. The AHAA data provides indicators of (1) educational achievement, (2) course taking patterns, (3) curricular exposure, and (4) educational contexts within and between schools. Some of these constructed measures (e.g., course sequences, academic intensity, grade trajectories) have been merged with Add Health data and have been released to all Add Health users; remaining educational data from this study will be released in the coming year. (See http://www.prc.utexas.edu/ahaa/ for more information on AHAA). Add Health researchers Barry Popkin and Penny Gordon-Larsen at UNC have received funding to develop a database of time-varying modifiable physical activity-related environmental factors for Waves I, II, and III. Using a multidisciplinary approach that blends spatial analysis methodologies with traditional epidemiological methods, they are linking area-level data to the individual data in Add Health that will add community-level measures such as recreation facilities (public, private), transportation options, crime, land use, air pollution, walkability, climate, and cost of living. The environmental data come from US Geologic Survey, US Census, US Department of Labor Statistics, and others extant sources. These additional environmental data for Waves I, II, and III will be made publicly available in the coming year. 9 PLANS FOR WAVE IV Rationale In a second continuation of the Add Health program project, a fourth in-home interview is planned with original Wave I respondents who will be aged 24-32 at the time of data collection. The goal is to trace, locate, and reinterview respondents who participated in Wave I of the National Longitudinal Study of Adolescent Health (Add Health) with a 2-hour personal interview in 2007-08 representing a Wave IV follow-up of a nationally representative sample of over 20,000 adolescents in 1994-95. In Wave IV we will expand the scientific frontiers of research and knowledge by taking Add Health in new directions to increase our understanding of biology in relation to social, behavioral, psychological, and environmental processes of human development. We plan to collect longitudinal survey data on the social, economic, psychological, and health circumstances of our respondents, longitudinal geographic data, and new biological data to capture the prevailing health concerns of our Add Health cohort as well as biological markers of future chronic health conditions and disease. When Wave IV data are combined with existing longitudinal Add Health data over 10 years of our respondents’ lives beginning in adolescence and extending through their transition to adulthood, Add Health will provide unique opportunities to study linkages in social, behavioral, environmental, and biological processes that lead to health and achievement outcomes in young adulthood. The research purpose of Wave IV is to study developmental and health trajectories across the life course of adolescence into young adulthood using an integrative approach that combines social, behavioral, and biomedical sciences in its research objectives, design, data collection, and analysis. Add Health participants will be ages 24-32 and settling into young adulthood. At the same time that the Add Health cohort assumes adult roles and responsibilities, they develop crucial health habits and lifestyle choices that set pathways for their future adult health and wellbeing. We have designed Add Health Wave IV in the vision of the NIH Roadmap by integrating biological information into our models of health and human development and by stimulating interdisciplinary research teams that aim to reshape biomedical research to improve people's health (Zerhouni 2003). Several features of the proposed data collection represent new directions in Add Health, including methods to obtain more objective measures of health status and strategies to explore alternative modes of reinterviewing our sample in the future. Wave IV will employ innovations in the collection of biological measures in a field setting on a large national sample that are both practical and ground-breaking. For example, we plan to collect DNA on everyone in our national sample and obtain indicators of metabolic syndrome and immune functioning using noninvasive procedures. The combination of longitudinal social, behavioral, and environmental data with new biological data will expand the breadth of research questions that can be addressed in Add Health regarding predisease pathways, gene-environment interactions, the relationship between personal ties and health, factors that contribute to resilience and wellness, and environmental sources of health disparities. Data Collection Data collection for the National Longitudinal Study of Adolescent Health: Wave IV will be carried out by the Research Triangle Institute (RTI) under sub-contract to the University of North 10 Carolina at Chapel Hill. The basic plan for data collection is to locate Wave I respondents and complete a two-hour interview. We will collect survey data using a 90-minute CAPI/CASI instrument, followed by biospecimen data collection. We will collect saliva samples for buccal cell DNA and blood spots for a lipids profile and to dry for assays of C-reactive protein (hsCRP), glycosolated hemoglobin (HbA1c), and Epstein-Barr virus (EBV) antibodies. Interviewers will instruct respondents on self-collection of three saliva samples for assays of cortisol on the day following the interview, which they will mail in prepared packages to Salimetrics Laboratories in State College, PA. DNA samples will be mailed by the interviewers to the Institute for Behavioral Genetics in Boulder, Colorado, the DNA subcontracter, where DNA will be extracted, quantified, genotyped, and stored. Dried blood spots will be mailed to Craft Technologies in Wilson, NC the contractor who will conduct the assays on blood spots. Locating Respondents The challenging part of the data-collection project is tracing respondents. RTI has a special operational unit that is organized for respondent tracing. Our tracing and locating activities start from a solid foundation. We have accurate addresses for all respondents interviewed in Waves II and III of Add Health, and parent addresses for all respondents interviewed in Wave I. In addition, at Wave III we gained consent from 67% of Add Health respondents to use their social security numbers for purposes of following them up for subsequent interviews. RTI expects to be successful in tracing and interviewing 85 percent of the Wave I respondents (about 17,000 cases). Because all of the respondents have been interviewed at least once before, and most have been interviewed at least three times, we expect refusals to be minimal once respondents are contacted. (In Wave III, only 6 percent of respondents refused to be interviewed.) The Add Health sample is dispersed across the nation; at Wave III respondents lived in all 50 states. Recruitment for Wave IV Using respondent and parent locating information, current addresses for respondents will be solicited. More intensive techniques will be sequentially employed to maximize the number of original respondents who can be located. Every effort will be made to locate women and minorities, including computerized searches of electronic databases and vital statistics (e.g., marriage records, DMV records). In 2006, original Wave I respondents will be sent advance letters notifying them of the upcoming survey. Interviewers will then schedule with respondents, either by telephone or in person, a mutually acceptable time to meet. Interviewers will explain Add Health Wave IV and obtain written, informed consent from respondents. Interview Setting Most interviews will be conducted at the respondent’s home, but this is not a requirement. Add Health interviewers have always been flexible to accommodate respondents’ schedule, lifestyle, or living arrangements by conducting a handful of interviews in restaurants, college lounges, or places of work. The Wave IV interview will be administered on a laptop computer with a CAPI/CASI survey instrument. The Wave IV questionnaire administration will be approximately 90 minutes long. Less-sensitive questionnaire sections and questions will be administered with the assistance of an interviewer (computer-assisted personal interview). We discovered at Wave III that when the interviewer and the respondent sit side by side during the CAPI sections so that the respondent can read along while the interviewer reads out loud the questions on the computer screen, this setting improves respondents understanding and reduces 11 need for clarification of questions, and considerably shortens the length of the interview. More sensitive questionnaire sections will be self-adminis;tered using CASI technology (computerassisted self interview). Interviewers will obtain residential latitude and longitude readings using a Global Positioning System (GPS) device which will be directly transferred into the survey instrument on the laptop. Immediately following the 90-minute interview, interviewers will take physical measurements and collect biological specimens, which should take no more than 30 minutes. Survey Content In determining questionnaire content, Add Health consulted widely with experts on each specific health outcome and with representatives of NIH institutes who had contributed financial support to the project. For example, in conjunction with the National Institute of Alcohol Abuse and Alcoholism (NIAAA), we developed a short inventory of alcohol use and abuse items. Likewise, in conjunction with the National Cancer Institute (NCI), we introduced new questions on sun exposure and diet in the Wave II questionnaire. In Wave IV we are following a similar strategy, drawing on the expert advice of NIH representatives to ensure that our questions capture the necessary elements of each health domain. The Wave IV survey will maintain longitudinal elements from earlier waves of data collection, but will add new questions and sections to the survey that are more pertinent to the lives of young adults. In Wave IV we plan to continue to collect longitudinal data on household composition and residence history; contact with and emotional/financial support from parents, siblings, and friends; educational achievement; occupational and military service history; romantic relationship/cohabitation/marriage history; pregnancy history; childbearing and health conditions of children; general sexual experiences and STDs; access to health services and insurance; self esteem, depression, and suicidality; religiosity; violence and involvement with the criminal justice system; substance use; and civic participation and citizenship. Questions in these domains update sociodemographic transitions that are central to the movement into adulthood, and provide information about continuity and change in multiple indicators of physical and mental health status and health care; in social, emotional, and physical contexts; and in risk taking, prosocial, and antisocial behavior. New Survey Data New data will be collected in a number of domains, reflecting funded research needs and salient aspects of the young adult years of the 20s. For example, we plan to expand survey questions on educational transitions, economic status and financial resources and strains, sleep patterns and quality, eating habits and nutrition, illnesses and medications, physical activities, emotional content and quality of current and recent romantic/cohabiting/marriage relationships, and maltreatment during childhood by caregivers and other adults. We plan to add new questions to tap the “Big 5" personality dimensions (the NEO-FFI; McCrae and Costa 1989), interpersonal and occupational stressors, loneliness, substance addiction and treatment (Composite International Diagnostic Interview - Substance Abuse Module; Cottler and Keating 1990; Robins, Cottler, and Babor 1993; Young et al. 2002), obstacles to educational goals, and intersections and balance between work and family responsibilities. We plan to collect the name of the college from which any degrees were obtained and the names of all colleges attended to facilitate a project that will collect the college transcripts and college contexts of our sample. 12 Moreover, particular survey data will be added to the instrument for purposes of interpreting biological data, such as currently breast-feeding, medication use, recent infections, and recent participation in intense forms of exercise. Event History The survey will continue to use a CAPI/CASI event history calendar to collect the dates and circumstances of key life events that occur to young adults, including a complete relationship history since Wave III, pregnancy and fertility histories from both men and women, an educational history of dates of degrees and school attendance, and an employment history of jobs, with respective information on occupation, industry, wages, hours, and benefits. We will also collect a residential history of state locations since Wave III, and recent mobility (e.g., previous address, length of time at previous residence). We can repeat our questions on relationship and childbearing events and activities because Wave III had rather in-depth sections on these domains. However, we plan to expand our data collection of education and work events because these activities are particularly intense and quite consequential in this stage of life. Our event history survey data will also include major health events (e.g., hospitalizations, the occurrences of severe or chronic illnesses, accidents causing disability), involvement with the criminal justice system (e.g., arrests, imprisonment), and other forms of institutionalization. Geographic Data At Wave IV we will collect geographic data in two forms: home and work addresses and latitude longitude coordinates from GPS devices. Geocodes will be obtained from all reported addresses using state of the art methods as well as from the latitude and longitude coordinates of the home residence. Residential geocodes from multiple sources (e.g., from reported home addresses as well as from GPS readings at the time of the interview) enable us to cross-check the validity and clean the geographic data to produce a valid residential geocode. In addition, if the interview does not take place at the respondent’s home, residential geocodes can still be obtained from the home address reported in the survey. A set of core community variables will then be assembled and made available to Add Health users. Working under strict confidentiality protocols defined by Add Health, community-level environmental data will be collected, compiled, or derived from public domain and commercially available spatial/environmental data for each of the Add Health respondents for Wave IV. Contextual geographic data available to Add Health investigators will include a large array of socioeconomic and demographic census block, tract, and county-level characteristics based on matching earlier census data created for Add Health in previous waves. For example, we will add community data on race and ethnic composition, linguistic isolation, household income, poverty status, educational attainment, unemployment, household tenure and migration, household value, and a wealth of other contextual data. We will also add quarterly time-varying price data for each area in the US for food (at home, fast food), housing, cigarette and other cost of living elements from ACCRA (American Chamber of Commerce Researchers Association). Biological Data Given the size and geographic spread of our sample, and the non-clinical setting of our interviews, we have chosen methods to collect biological data that are noninvasive, innovative, cost-efficient, and practical for population-level research. 13 Anthropometric Measures. As in earlier waves, interviewers will measure the weight and height of Wave IV participants who are dressed, have removed their shoes and are standing on an uncarpeted floor (if possible). Weight will be measured to the nearest 0.5 lb (0.2 kg) using a UC321 Precision Personal Health Scale (max: 330 lb). Height will be measured to the nearest 0.5 cm using a Seca 214 Road Rod stadiometer (max: 200 cm). In addition, arm and waist circumferences will be measured to the nearest 0.5 cm using a QM2000 Myo-Tape (max: 152 cm). Cardiovascular Measures. Interviewers will measure the SBP, DBP and pulse of Wave IV participants according to a standardized protocol. After a five-minute quiet rest in the sitting position, resting, seated values of SBP, DBP (mmHg) and pulse (beats/min) will be automatically recorded to the nearest whole unit using an appropriately sized blood pressure cuff and the Omron HEM-747-IC BPM—a computer-controlled, digital, oscillometric blood pressure monitor. Pulse pressure and mean arterial pressure will be estimated indirectly—the former as a simple difference (PP = SBP – DBP) and the latter as a weighted sum of its components: [SBP + 2 * DBP] ¸ 3. Three serial determinations will be performed automatically from the right arm (when possible) at two-minute intervals. Factors affecting blood pressure, such as current medications, temperature, and time of day will be recorded. Finger Prick Whole Blood. Trained and certified interviewers will use finger prick to obtain whole blood for automated analyses in the field and subsequent assays of dried blood spots in a centrally located facility, Craft Laboratories. Compared to venipuncture, this procedure provides a relatively convenient, inexpensive, and non-invasive means for collecting blood samples. Interviewers will obtain whole blood spots by [1] cleaning each participants’ middle or ring finger with isopropyl alcohol; [2] pricking it with a sterile, disposable micro-lancet; [3] placing the first drop of whole blood (~50 L per drop) on a test strip in a portable analyzer to obtain a lipid panel in the field; and [4] placing five more drops onto standardized filter paper for absorption. Metabolic Measures. A Professional CardioChek PA will be used to obtain the lipid panel from a blood spot placed on a PTS PANELS test strip. Whole blood spot assays for glycosylated hemoglobin (HbA1c [%]) have been in use for several years in home and commercial settings and have been shown to provide the accuracy, precision, and reproducibility of clinical tests (Parkes et al. 1999). Craft Technologies will use a modification of these methods based on previously validated whole blood spot assays with established performance characteristics. Inflammatory Measures. High sensitivity CRP (hsCRP [mg/L]) will be measured using an enzyme-linked immunosorbent assay (ELISA) previously validated for use with whole blood spots (McDade, Burhop, and Dohnal 2004). The assay yields measures that are reliable and precise (average coefficient of variation = 7.6% and 5.6%, respectively), and that have a lower detection limit of 0.028 mg/L. Immune Measures. There is persuasive evidence that Epstein-Barr Virus (EBV) is among the strongest and most consistent immunological correlates of chronic stress (Herbert and Cohen 1993). We will measure EBV antibody titers using an ELISA protocol previously validated for use with blood spots (McDade et al. 2000). Higher levels of circulating antibodies against EBV 14 indicate poorer cell-mediated immune performance. HPA Axis Measures. In Wave IV, Add Health participants will be asked to self-collect three saliva samples (on awakening, thirty minutes later, before bed) and complete a collection checklist the day after their interview. The field interviewer will give saliva collection kits (Salivettes), instructions, and a pre-addressed, postage paid envelope to each participant. Before leaving the participant’s home, the interviewer will 1) record medical conditions or use of medications known to alter plasma cortisol or cortisol binding globulin concentrations (e.g., Cushing’s disease; pregnancy; birth control pills; corticosteroids), 2) review collection procedures, and 3) demonstrate how to obtain saliva and complete the collection checklist. The practice saliva and checklist will be destroyed by the interviewer. The participant will use the envelope to send samples and the collection checklist to Salimetrics Laboratories. Saliva samples will be assayed for cortisol in duplicate by Salimetrics Laboratories. The Salimetrics HS-Cortisol kit is a competitive enzyme immunoassay specifically designed for the quantitative measurement of salivary cortisol. It addresses issues of matrix calibration specific to salivary cortisol, is designed to capture the full range of salivary cortisol levels while using only 25 L of saliva per singlet determination, and has a built-in indicator regarding sample pH (immunoassay performance is compromised when pH<4). The assay has a range of sensitivity from .007 to 1.8 g/dl, and average intra- and inter-assay coefficients of variation less than 5% and 9%, respectively. Method accuracy, determined by spike recovery, and linearity, determined by serial dilution, are 105% and 95%. Genetic Measures. In collaboration with the Institute for Behavioral Genetics (IBG) in Boulder, Colorado, Add Health will collect, extract, quantify, and store DNA samples from all 17,000 respondents in Wave IV. Genomic DNA will be isolated from buccal cells in saliva. To collect the DNA, the cheeks and gums will be rubbed for 20 sec with three swabs: one at the beginning of the interview, a second about half-way through, and a final one near the end of the interview. The swabs will be placed immediately in a 50 ml capped polypropylene tube containing lysis buffer. After the third swabbing, the respondents will rinse out the mouth with 10 ml of bottled water (supplied) for 20 sec, and expel it into the tube containing the three swabs. The tubes will be stored at 4oC and shipped to the IBG laboratory by FedEx for DNA extraction. The buffer lyses the cells and stabilizes the DNA. IBG will assay at least ten candidates. Depending on the locus, the genotyping will consist of a single VNTR, STR, SNP, or a panel of SNPs across the gene. To account for possible variation contributed by additional SNPs contained within a given gene we will also genotype an average of eight SNPs per gene, depending on the size and the number of variants residing within each gene. Larger or more variable genes would likely necessitate genotyping more than eight variants, while smaller or less variable genes will require genotyping fewer variants. Although we cannot empirically test every variant in each gene, a limited number of genetic variants within the promoter, coding, and non-coding regions should be sufficient to capture the majority of variation accounted for by these genes. Thus, we will type an average of eight genetic variants within the promoter, coding, and non-coding regions in at least 5 of the genes identified for study. The list of candidate loci, along with all proposed biomarkers for Wave IV are shown in the following table. 15 Proposed Wave IV Biomarkers Biological Measure Anthropometric Weight [kg] Height [cm] BMI [kg/m2] Waist Circumference [cm] Arm Circumference [cm] Biological Specimen Method of Measurement NA " " " " UC-321 Precision Personal Health Scale Seca 214 Road Rod Stadiometer Weight ÷ Height2 QM2000 Myo-Tape " NA " " " " HEM-747-IC Automatic BPM " " SBP – DBP (SBP + 2 × DBP) ÷ 3 Finger Prick Whole Blood " " " " " " CardioChek PA & PTS PANELS Test Strips " " TC – HDL-C – (TG ÷ 5) TC ÷ HDL-C TC – HDL-C Blood Spot Assay " " " " Saliva " " " " Saliva Assay Mean of 3 Sample Concentrations Regress 3 Cortisol Concentrations on Time Trapezoid Method Using 3 Samples Sample #1 – Sample #2 Buccal Cell DNA " " " " " " " " " VNTR and SNP Panel VNTR and SNP Panel VNTR and SNP Panel VNTR and SNP Panel VNTR and SNP Panel VNTR STR STR STR STR Cardiovascular SBP [mmHg] DBP [mmHg] Pulse [beats/min] PP [mmHg] MAP [mmHg] Metabolic TC [mg/dL] HDL-C [mg/dL] TG [mg/dL] LDL-C [mg/dL] TC:HDL-C Non-HDL-C [mg/dL] HbA1c [%] Inflammatory hs CRP [mg/L] Immune EBV [ELISA units] HPA Axis Cortisol [ìg/dl] Mean Cortisol [ìg/dl] Diurnal Slope Area Under Curve (AUC) Awakening Response Genetic DAT1 DRD4 DRD2 5HTT 5-HT2A MAOA-uVNTR MAOA[GT]n DRD5 COMT IGF1 16 Procedures for Obtaining Informed Consent Signed, informed consent will be obtained from respondents at two data-collection points—first, before conducting the interview, second, at the conclusion of the interview and before collecting biospecimens. All original respondents will be 18 years old or older. Before the start of the interview, the interviewer will state that in addition to standard demographic, attitude, and health-status questions, we will ask questions about the respondent’s friends, romantic and sexual partners, and acquaintances, including activities that they have engaged in with these individuals and the characteristics of the individuals with whom they associate. In addition, respondents will be informed that they will be asked to provide saliva and blood spot specimens at the end of the interview and, at the time they are asked to provide these specimens, they will be asked to sign an additional consent form. Post-Interview Data Handling After an interview has been completed and biospecimens collected, identifying information will be separated from the data and specimens. The laptop computer will create two files—one containing an SID (a temporary identification number used for survey data) and the data (data file), the other an SID, a set of BIDs, and identifying information (ID file). The biospecimens will be labeled only with the BID. The data file will be sent to RTI for processing and then sent to CPC; the ID file will be sent to RTI, who will send it on to the Add Health security manager in Canada within three days. Upon confirmation that the ID file has been successfully received at York, RTI will destroy their copy, thereby breaking the link between identifying information and (1) the questionnaire data and (2) the biospecimens. This system also has the advantage of separating the questionnaire data from the biospecimen results, reducing the risk of linking assay results to an individual through deductive disclosure. At the end of the data-collection period, the Security Manager will provide CPC with a file containing one record for each respondent, with an AID, an SID, and a set of BIDs. CPC will replace all SIDs and BIDs with the appropriate AIDs. This allows researchers to link Wave IV data with data collected in Waves I, II and III. This complex security system was designed and implemented to eliminate the possibility of either direct or deductive disclosure of individuals, and has guaranteed a level of confidentiality and security unprecedented in the social sciences. It is described in more detail in Confidentiality of the Data, below. The system was necessary because many of the adolescent participants in our sample provided detailed information about, and identified by unique identification numbers, their friends, romantic partners, and/or sexual partners. Respondents, as young adults, will be asked to provide this same information in Wave IV, and therefore the crucial element of the security system developed Add Health (i.e., the separation of data from identifying information) will be continued. Compensation and Costs Respondents will be given $30 for completing a laptop administered interview and up to an additional $70 if they provide saliva and blood spot specimens. Respondents are free to withdraw from the study at any time and to refuse to answer any question or to provide biospecimens. The monetary inducements are paid to respondents at (1) the completion of the 17 interview and (2) the provision of the biospecimens. There are no costs to participants. Risks to Subjects In Add Health, respondents disclose information about themselves. This is usual. Respondents also identify others (friends, siblings, romantic and sexual partners) and disclose information about them. This is unusual. Further, analysis requires linking records to form pairs of respondents so that information the respondent supplies about others is linked to what others supply (as respondents) about themselves. This is also unusual. Two principal risks to individuals participating in the study—breach of confidentiality and deductive disclosure—were addressed in earlier waves of Add Health, and a number of precautions and protocols were implemented to reduce the risk that either would occur. We will continue these unusually thorough precautions to make breach of confidentiality and deductive disclosure impossible. Research material obtained from individual respondents will be in the form of questionnaire responses and biospecimens. Respondents might experience social or legal consequences from the disclosure of some of the information we plan to request from them. We intend to ask about illegal drug use, illegal forms of sexual behavior, delinquent and violent behavior, criminal acts, and names of romantic or sexual partners, and to collect saliva and blood spots to be assayed for health conditions, as well as DNA. Respondents may be subject to arrest, embarrassment, lawsuits, ridicule, loss of employment or insurance coverage, loss of access to student or other types of loans, and other problems if the confidentiality of data is breached. Therefore, it is imperative to protect the identity and identifying information of respondents. Precautions that have been implemented in Add Health, and will be continued include: 1. Everyone associated with the project is required to sign a security pledge agreeing to maintain confidentiality. 2. Identifiers and identifying information are kept separate from data given by respondents. 3. We have protection from subpoena of data by any agency of government by application to the Department of Health and Human Services for a Confidentiality Certificate in accordance with the provisions of section 301(d) of the Public Health Service Act (42 U.S.C. § 241(d)). 4. Identification numbers used during the Wave IV data-collection period will be different from ID numbers used in previous waves of data collection and in Add Health data files. A respondent’s biospecimen identification number will be different from his or her interview identification number. 5. All users of contractual data are required to sign a security pledge agreeing to maintain confidentiality. 6. All applicants for contractual data are required to submit a letter from their institutional IRB verifying and approving the researcher’s plan for keeping the data secure and minimizing the deductive disclosure risk. 7. Project staff monitor the use of contractual data at outside institutions through arranged visits to investigators who have entered into contractual agreement with UNC. 8. Researchers who use third-party nomination data and HIV data must comply with 18 additional high security provisions for analysis of these data. By this combination of procedures, we have been able to provide access to the data by the research community and virtually to eliminate the risk that any respondent is identified. The collection of information about the long-term consequences of adolescent health behaviors justifies the collection of sensitive information that can be used to develop strategies promoting long-term health and positive health behaviors. Our respondents are familiar with and have participated previously in similar nomination strategies. All respondents in previous romantic relationships have nominated their romantic partners by name, all of our respondents have nominated their sexual partners (if any) by name, and all of our respondents have nominated by name their five best male and female friends. The task of nominating individuals is thus not foreign to them. In over 35,000 interviews conducted between 1995 and 1996, yielding hundreds of thousands of friendship and romantic and sexual partnership nominations, we have received no indication that this task is burdensome or unpleasant for our respondents. Confidentiality of the Data In most studies it is important to protect the identity of respondents. Given the sensitive nature of much of the data gathered in Add Health, as well as the request that respondents identify others with whom they may have engaged in illegal behaviors, extraordinary measures are taken to ensure complete confidentiality. Detailed procedures for maintaining the confidentiality of the data are discussed in detail in “Risks to Subjects,” above. Below are the guidelines used to develop the security and confidentiality protocols. Two general principles of security apply to all waves of data. First, the link between a respondent’s name and his or her data is kept secret. Second, the functions of data collection, processing, and storage are separated from the function of maintaining identification numbers, names, and locating information links. A central measure in implementing these principles is the employment of a Security Manager located outside the United States. Only the Security Manager can link the name/address/etc. of a respondent, or someone nominated by a respondent, to information provided on a questionnaire or in an interview. (Because the study has needed to return to respondents for follow-up interviews, it has been necessary for the Security Manager to retain identifying and locating information.) The system is fairly complicated. To deal with the in-school surveys, for example, these steps were followed: (1) the school provided a roster of students’ names and addresses; (2) the study assigned short identification numbers (RIDs) to students on the roster; (3) printed versions of the roster were prepared containing only names and RIDs, for use by students in identifying their friends and themselves during the survey; (4) a roster file including names, RIDs, and addresses was sent to the Security Manager; (5) in-school questionnaires were designed for optical scanning, and each page of each copy was printed with that copy’s unique scannable 19 identification number (QID); (6) when a student filled out the in-school questionnaire, he or she wrote his or her name, address, and telephone number on the first page, then looked himself or herself up in the roster and provided his or her RID in both a handwritten and a scannable form; (7) to identify friends, the student provided their RIDs; (8) when questionnaires were collected, the first pages were separated, labeled with the school’s identification number, and sent immediately to the Security Manager; (9) the interior pages of questionnaires were scanned and the paper questionnaires shredded; (10) the Security Manager scanned the first pages of the questionnaires, used the handwritten address and telephone number information to correct the roster provided by the school, and then destroys the first pages; (11) using a combination of the unique school identification number and the RID, according to an algorithm known only to him, the Security Manager created for each respondent an altered identification number (AID); (12) the file containing scanned questionnaire data was sent to the Security Manager (a copy was not kept by the study); (13) the Security Manager used QIDs to add respondents’ AIDs to the file, and friends’ RIDs to add friends’ AIDs; (14) the Security Manager removed friends’ RIDs from the in-school data file and returned it to the study. Once the first pages of the in-school questionnaires were sent to the Security Manager immediately after the survey session, the study’s link between respondents’ names and their questionnaire data was irrevocably broken. Measures similar in concept were followed for the three in-home interviews. Identification numbers unique to the interview (like QID for the in-school survey) were assigned, respondents identified themselves and their friends/partners using RIDs from an electronic version of the school-based roster, and files recorded on laptop computers were split in two, with the file containing the ID link between the respondent and his or her data being sent at the close of the interview to the Security Manager, who substituted AIDs for RIDs. At Wave III, an added element to the security system was necessary to address the biological specimens. The containers of biological specimens were labeled with the respondent’s UID, an identification number different from that which links the respondent to his or her direct survey data (SID). As before, the Security Manager will replace SID with AID for survey data. When biological specimens were analyzed, the analysis results were provided to the Security Manager, attached to the UID. At the end of the field-work period, the Security Manager will again replace the UID with the respondent’s AID. Security for Wave IV will again follow this procedures. Public Release of Data Data from Wave IV will contain an AID that will enable researchers to link Wave IV data with that collected in Waves I, II, and III. A public-use dataset will be created containing survey data for the same people who are in the current Add Health public-use dataset. The contractual dataset will contain survey data for all respondents and will be available under contractual agreement to qualified researchers. The Add Health safeguards—(1) providing only half the core cases for public use to limit the risk of deductive disclosure, and (2) requiring researchers and their institutions to enter into a contract with CPC—will be continued for the Wave IV data. Availability of Data Please see http://www.cpc.unc.edu/addhealth, the Add Health web site, for details of 20 currently available data. Requests for information about Add Health should be sent to [email protected]. 21 LITERATURE CITED Adair, L. and P. Gordon-Larsen. 2001. “Maturational Timing and Overweight Prevalence in US Adolescent Girls.” American Journal of Public Health 91(4):642-644. Bankston III, C. L. and M. Zhou. 2002. “Being Well vs. Doing Well: Self-Esteem and School Performance Among Immigrant and Non-Immigrant Racial and Ethnic Groups.” International Migration Review 36(2):389-415. Bearman, P. S. and H. Brückner. 1999. Peer Effects on Adolescent Girls’ Sexual Debut and Pregnancy. 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