Supporting Statement

SLAITS SATH_OMB 83C 05_11_07 (2).doc

State and Local Area Integrated Telephone Survey (SLAITS)

Supporting Statement

OMB: 0920-0406

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OMB 83-C

State and Local Area Integrated Telephone Survey (SLAITS) package: 0920-0406

State and Local Area Integrated Telephone Survey

OMB # 0920-0406

Three-year generic clearance granted 11/30/04; expires 11/30/07

Change request to add additional topics:

2007 Survey of Adult Transition and Health (SATH)

Prepared by:

Kathleen S. O’Connor, MPH

Survey Statistician

CDC/NCHS

3311 Toledo Road, Room 2114

Hyattsville, MD 20782-2003

301-458-4181 (voice)

301-458-4035 (fax)

[email protected]

May 11, 2007

National Center for Health Statistics

State and Local Area Integrated Telephone Survey (SLAITS)

Generic Mechanism

OMB clearance number 0920-0406, expiration 11/30/07

05/11/07

2007 Survey of Adult Transition and Health (SATH)

OVERVIEW

The State and Local Area Integrated Telephone Survey (SLAITS) mechanism is conducted by the National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention (CDC), under OMB clearance number 0920-0406 (expires 11/30/07). This generic clearance allows NCHS to collect health and well-being data on children, families, and communities over a three year period with abbreviated clearance packages submitted for individual projects.

NCHS is applying for permission to conduct the SLAITS 2007 Survey of Adult Transition and Health (SATH). The purpose of this project is primarily to determine the feasibility of calling telephone numbers from a much earlier survey, and will also capture current health status data for subjects identified in the 2001 SLAITS National Survey of Children with Special Health Care Needs (NS-CSHCN). Considered a pilot, this project will identify target areas for improvement in future followback modules.

Although SLAITS modules typically use the National Immunization Survey’s list-assisted Random-Digit-Dial (RDD) sample, the SATH will not follow this traditional protocol. Rather than use a new sample, SATH will followback households that contained a child with special health care needs between the ages of 14 and 17 years as identified in the 2001 NS-CSHCN. The subject of the initial interview is now a young adult between 19 and 23 years old who will serve as the respondent for SATH. As a second component of this pilot test, SATH respondents have the option of participating in the survey using the Internet or landline or cellular telephones.

The SATH is sponsored by the DHHS Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA), which officially administers the Federal Title V maternal and child health block grant program. SLAITS data collection is conducted under contract with National Opinion Research Center at the University of Chicago (NORC).

The SATH is scheduled to be fielded from early June through early August 2007. Project funds must be spent by September 30, 2007.

The content of the 2007 interview focuses on the impact of having adequate health-related transition services and a ‘Medical Home’ (MH) as promulgated by the American Academy of Pediatrics (AAP) at baseline (2001) on selected health and well-being outcome measures at time 2 (2007). Two secondary content-related research questions include:

If a child with special health care needs receives good health-related transition services in adolescence (time 1), does this translate into good health and well-being outcomes in adulthood (time 2)?

If a child with special health care needs receives adequate care under the “Medical Home” paradigm in adolescence (time 1), does this translate into good health and well-being outcomes in adulthood (time 2)?

No additional annualized burden hours are requested to complete this project.

A. Justification

1. Circumstances Making the Collection of Information Necessary

This pilot survey will target selected cases from the 2001 NS-CSHCN who were between 14 and 17 years of age, and identified as children with special health care needs (CSHCN, using the MCHB definition^¹) which states:

“Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

The determination of CSHCN status was based on having at least one of five consequence-based criteria (prescription medication use, above average service use, functional limitations, use of mental health services, and use or need for specialized therapies).

In 2002, the journal Pediatrics published a consensus statement approved by the boards of the three medical professional organizations^² to define ‘transition’ for these children:

“..For many young people with special health care needs, this will mean a transfer from a child to an adult health care professional; for many others, it will involve an ongoing relationship with the same provider but with a reorientation of clinical interactions to mirror the young person’s increasing maturity and emerging adulthood. Whether the transition entails a transfer of care or not, all adults with special health care needs deserve an adult focused primary care physician… physicians have an important role in facilitating transitions to adulthood and to adult health care for young people who are least likely to successfully do it on their own.”

It further describes the characteristics of a transition from a physician who treats children to one who treats adults as:

“…a dynamic lifelong process that seeks to meet their individual needs as they move from childhood to adulthood. The goal is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. It is patient centered, and its cornerstones are flexibility, responsiveness, continuity, comprehensiveness, and coordination. ….”

Characteristics of health-related transition and MH services for CSHCN are listed in Table 1 below. Currently no data source exists to assess these measures other than the NS-CSHCN, and outcome data are unavailable. This descriptive dataset will represent a wide swath of young adults with special health care needs who have varying severity of conditions, activity limitations, and disabilities.

Table 1. Characteristics of health-related transition and MH services.

Construct	Key characteristics of this core outcome
Medical Home	CSHCN will receive coordinated ongoing comprehensive care within a Medical Home. Child had a usual source of care Child had a personal doctor or nurse Child had no problems obtaining referrals when needed Effective care coordination was received when needed The child received family-centered care
Transition	Youths with special health care needs will receive the services necessary to make transitions to adult life, including adult health care, work, and independence. Child has received guidance and support in transition to adulthood: Doctors have talked about changing needs as child becomes an adult Child has plan for addressing changing needs Doctors discussed shift to adult provider Child has received vocational or career training (this component will not be examined in the 2007 survey)

Construct

Key characteristics of this core outcome

Medical Home

CSHCN will receive coordinated ongoing comprehensive care within a Medical Home.

Child had a usual source of care
Child had a personal doctor or nurse
Child had no problems obtaining referrals when needed
Effective care coordination was received when needed
The child received family-centered care

Transition

Youths with special health care needs will receive the services necessary to make transitions to adult life, including adult health care, work, and independence.

Child has received guidance and support in transition to adulthood:
Doctors have talked about changing needs as child becomes an adult
Child has plan for addressing changing needs
Doctors discussed shift to adult provider
Child has received vocational or career training (this component will not be examined in the 2007 survey)

The lack of descriptive outcome data for MH and transition services can be explained from several perspectives. From a medical perspective, CSHCN are living longer due to advancements over time in medical care, procedures and technology, and design of durable medical equipment. In the past, a smaller percentage of these youth survived to adulthood; therefore, outcomes research as the adolescent transitioned into adulthood was not seen as critically important. The dearth of transition-related literature is in part a result of the decentralization of transition service planning, programs, and services. From a political perspective, the lack of data may reflect the delicate balance that must be maintained in the appropriation process between the finite amount of money available for data collection and emergent maternal and child health data needs that may supplant previously identified research priorities. From a methodological perspective, identifying appropriate populations can be difficult. This difficulty may be further compounded by the severity and type of special health care need(s), functional limitation, or disability the adult experiences. For example, the adult may have a cognitive or physical barrier that may require additional flexibility or alterations in the mode of survey administration, instrument, or procedures^³; or his/her special health care need(s) may require collection of data from a proxy respondent instead directly from the adult.^⁴

2. Purpose and Use of the Information Collection

This pilot project will:

test procedures to locate and interview a typically mobile, transient, notoriously difficult-to-locate-and-survey, but important population subgroup,
use various data collection modes, and if successful,
provide outcome data at time 2 (2007) on the impact of having health-related transition services and a MH at the time of first interview (2001).

This survey will also allow us to research factors related to developmental objective 16-22 as articulated in the DHHS Healthy People 2010 initiative:

“(to) increase the proportion of children with special health care needs who have access to a medical home”^⁵.

Efforts to Identify Duplication & Use of Similar Information

Comparable national and state estimates of CSHCN transition and MH using the MCHB CSHCN definition are available only from the 2001 SLAITS NS-CSHCN and 2005 – 2006 SLAITS NS-CSHCN (data available this summer). These surveys are about children under age 18 years so there is no source of data on young adults.

To create the instrument listed in Attachment 3 (page 65), ten major surveys conducted by numerous Federal departments were examined for suitable content, as were materials from the Cornell University Employment and Disability Institute, the Western Michigan University Transition Research Institute, and the National Resource Center for Healthy and Ready to Work Programs (NRCHRTWP, also sponsored by MCHB). At least two of these surveys provide previously unavailable nationally representative cross-sectional data, but they focused solely on disabled children with more severe functional limitations than CSHCN. While states and local areas may conduct their own surveys of programs, these data are not nationally comparable.

The SATH instrument also includes questions previously used in other large national studies (such as verbatim questions pulled from the 2001 NS-CSHCN survey instrument, as we intend to compare 2001 and 2007 interview data), or taken verbatim or modified from other large surveys (as needed). Other SATH questions were written specifically for this implementation.

Instrument sections are listed below and contain questions on the following:

Health and Functional Status

General health status
Activity limitations – daily living
Activity limitations – work
Activity limitations – school
Activity limitations – taking care of house or family

Medical Home

Usual place for care
Continuous screening
Foregone or delayed care
Care coordination
Person-centered care

Transition services related to health
Community-based services
Health Insurance Coverage

Current coverage and past year coverage
Adequacy of health insurance
Transition services related to school

Self-determination
Satisfaction and support
Demographics

Marital status and living arrangements
Personal earnings and program participation

8. Efforts to Consult Outside the Agency

To develop the questionnaire, technical and content experts from CDC, MCHB, and other MCHB-funded programs worked collaboratively with expert researchers from the health policy, pediatrics, CSHCN, methodology, and measurement fields as well as representatives of a non-profit family advocacy group to identify appropriate survey content.

9. Explanation of any Payment or Gift to Respondents

We plan to offer a cash monetary incentive of $20 to eligible respondents who participate in the SATH interview for two reasons. First, this age group is notoriously hard to contact. A monetary incentive may provide a small incentive to participate. Second, the available sample is very small and we need to use every means possible to maximize the number of completed interviews. In addition, it is likely that some respondents will choose to respond using a cellular telephone, or this could be the only contact information we have to reach the eligible respondent. Cases completed using a cellular telephone will receive an additional cash incentive of $5 (for a maximum of $25) to defray the direct cost of conducting the interview using their allotment of cellular minutes. Although we will contact the eligible respondent via (his/her) cellular telephone number if it is the only contact information we are given, we will strongly encourage them to complete the interview either over the web or landline telephone.

We must address cellular telephone interviewing due to the profusion of these phones among persons in the target age range. Table 2 presents recent data from the National Health Interview Survey (NHIS) for interviews completed January through June 2006. During that period, almost one-quarter of young adults reported living in a cell phone only household. If we did not include an option to contact and interview respondents on their cellular telephones, we could introduce a significant amount of bias into our estimates.

Table 2: Household telephone status among adults ages 18 to 24 years (at the time of the interview).*

Household telephone status	Percentage (18 to 24 year olds)
Landline - with cell phone	46.3%
Landline - no cell phone	18.9%
Landline - unknown cell phone status	8.1%
No landline - unknown cell phone status	1.0%
Cell phone only	22.6%
No phone service	3.0%

*Data source: Centers for Disease Control and Prevention, National Center for Health Statistics. National Health Interview Survey, data collected January - June 2006. Estimates are based on household interviews of a sample of the civilian noninstitutionalized population.

Estimates of Annualized Burden Hours

Estimated number of participants

The 2007 starting sample overview is shown in Table 3 on the next page. All 10,933 possible cases will be released for initial locating and contacting processes. The cases will then be flagged as either ‘imperative’ or ‘standard’. The children who in 2001 were receiving all the necessary transition services (N=674) are a minority of cases but because of their importance to this study, they will receive the most intensive locating protocol (extended web-based and phone treatments, as well as expert teams of locating, interviewing, and refusal conversion staffers assigned). For distinction purposes, they are considered “imperative” cases while all others are considered “standard” cases.

The 2001 survey was not originally designed as a followback survey, and because we have no prior experience locating subjects under these circumstances, we are unsure of exactly how many subjects we will locate in 2007. Due to the lack of positively identified address information prior to first re-contact with the household, an advance letter cannot be sent. However, we will be able to send, fax, or email a ‘recruitment’ text to verify the survey or give eligible respondents and others more information upon request (eligible respondent version in Attachment 4i, page 90; the ‘more general’ version for persons other than the eligible respondent in Attachment 4ii, page 93).

Table 3. Starting sample sizes & characteristics for 2007 survey subgroups.

	‘Imperative cases’	‘Standard cases’
Definition	2001 CSHCN completed cases where it was reported the child received all transition services	All other 2001 CSHCN completed cases
Sample size (total n)	674	10,259
Projected percentage of 2001 completed cases that are able to be located	60%	40%
Projected percentage of 2001 cases that are able to complete the SATH	50%	40%
Targeted minimum goal: number of completed cases in 2007	200	1,641
Minimum expected completed interviews	1,841

Table 4 on the next page illustrates the projected annualized burden of the 2007 SATH, a 15 minute interview. The total sample size is 10,933 CSHCN cases; 674 of these are considered ‘imperative’ and received all transition services. The remaining 10,259 cases are all of the other age-eligible CSHCN cases.

We project that we will be able to locate 60% of the SATH-eligible imperative cases, and 40% of the SATH-eligible standard cases. Once located, we estimate that 50% of the imperative cases will complete the SATH interview, compared to 40% of the standard cases.

The burden listed in Table 4 is based on these percentages, resulting in completion of an estimated 200 imperative cases and 1,641 standard cases; for a grand total of 1,841 completed SATH interviews for this pilot project.

Table 4. Projected annualized burden estimate, 2007 SATH.

Respondents	Number of respondents	Number of responses per respondent	Average burden per response (in hours)	Total burden hours
Locating process: 2001 respondents	10,933	1	3 / 60	547
Locating process: ‘leads’ or persons other than the 2001 respondent who may have contact information for the SATH-eligible respondent	1,500	1	3 / 60	75
SATH respondents	1,841	1	15 / 60	460
TOTAL PROJECTED BURDEN HOURS				1,082

The burden for the total 2007 SATH is 1,082 hours. These hours are part of the total burden already approved for 2005, that is, 55,190 annualized burden hours. We are NOT requesting an increase in the number of annualized burden hours.

16. Plans for Tabulation & Publication & Project Time Schedule

The unweighted and unedited data will be examined by the contractor and NCHS for logic, consistency, and flow. Frequencies of all variables will be reviewed to ensure the data meet our expectations. The timing of sections and subsections will be reviewed. We also plan to assess the success of the locating process, in part by monitoring the number of eligible SATH respondents we are able to successfully locate and level of effort.

Initial data analyses of SLAITS surveys focus on baseline descriptive runs, and assess data quality, methods, and substantive measures. Item non-response rates will be examined to evaluate the potential sensitive nature of specific questions. A high frequency of “refused” responses or interview break-off points might indicate questionable validity for an individual question. Interviewers are debriefed periodically to identify anecdotes with the questionnaire (comprehension, expectations, skip patterns, insufficient response categories), and procedures. NCHS and NORC personnel periodically attend and/or conduct these group and individual interviewer debriefings.

After the initial data quality assessment, cross tabulations of primary categories of dependent variables with categories of independent variables examine common themes and various premises. Due to projected data limitations such as small cell sizes, it is unlikely that we will be able to perform multivariate analyses using SATH data. Table 5 on the next page lists the proposed project time schedule.

Table 5. Proposed project time schedule, 2007 SATH.

Activity	Date
Instrument content & layout finalized	March 1, 2007
Continued to more precisely define the locating procedures and scripts	March - April 2007
Solicit & obtain appropriate project clearances NCHS Research Ethics Review Board NORC Institutional Review Board Office of Management and Budget	April – May 2007
Data collection	Early June – Early August 2007
Assess locating procedures and data quality (observe interviews, review preliminary data, debrief interviewers)	Ongoing process throughout data collection period
Internal files delivered to NCHS	late September 2007
Data collection and delivery activities must be completed by the contractor	end of the Federal fiscal year, September 30, 2007
Data analysis	Ongoing

Due to the compressed schedule and small sample size, there is no pretest for this survey. After completing the first week of the survey, SLAITS and NORC staff will review and assess procedures, debrief interviews, observe interviews, and examine early data to determine whether any procedures need to be modified.

If there are no disclosure risks and the data are of sufficient quality, a SATH public use file (PUF) will be prepared and cleared through the NCHS Disclosure Review Board (DRB). Preparation for this would begin in October 2007. If it is determined the SATH PUF cannot be produced, a confidential data file will be prepared for use through the NCHS Research Data Center (RDC). The RDC provides restricted access to researchers (who meet certain qualifications) to confidential NCHS data in a secure environment, without jeopardizing the confidentiality of respondents. More information on the policies and procedures of the NCHS RDC can be found at: http://www.cdc.gov/nchs/r&d/rdc.htm.

B. Statistical Methods

1. Respondent Universe & Sampling Methods

The 2001 frame was linked to the National Immunization Survey (NIS) sampling frame. The 2007 SATH, however, employs a convenience or purposive sample and will have no link to the current NIS.

The universe from which the original 2001 sample was drawn is all US households with landline telephones. The SATH universe consists of 14 to 17 year old CSHCN cases identified in the 2001 NS-CSHCN and are now adults 19 to 23 years old. Details of the SATH sample frame are listed in Table 4 on page 9. The 2007 survey will only be conducted in English.

For 2001 cases completed using TTY or RELAY systems, we will leave a message with their answering system (if any) to contact NORC using a toll free number connected to a TTY machine to complete the interview.

To the best of our knowledge, the main difficulty is having an old phone number to locate someone who can provide valid contact information, and then locating the eligible young adult respondent. Due to the complexity of the locating process (described below), only very experienced personnel will be assigned to this project. Their advanced level of experience will allow them to better identify households that may need to be contacted using special procedures such as the TTY.

If a 2001 sampled telephone number connects to a household or business and the person on the phone states that he/she knows nothing about the 2001 interview or person who is now 19-23 years old, the call will be terminated and sent back to locating. If a person at the 2001 number refuses to provide any contact information for the eligible respondent, all contact will cease.

Cellular telephone numbers will be dialed by hand (not auto dialed).

2. Procedures for the Collection of Information

Advance letter

An advance letter will not be sent due to projected low match rates of addresses prior to contact and the condensed time period of data collection. We also do not want to alert what may be the wrong household about an upcoming government survey.

Locating the 2001 sampled children

The 2001 procedures did not assume a followback survey; consequently, we have only the 2001 telephone number for the parent or guardian, the child’s birth date or age at interview for the majority of cases, and possibly, the child’s first name. We have established procedures to locate the survey subjects under various assumptions ranging from: living at home with their parents, to the parents and survey subject have moved in the interim and do not live together.

The SATH locating protocol (Attachment 6ii, page 104) is based on procedures (and uses the same experienced staff) as the Provider Record Check (PRC) component of the NIS that locates and contacts health care providers across the country to verify parent-reported immunization data. The SLAITS contractor will use commercial databases available to government, legal, risk management, law enforcement, and commercial customers with legitimate uses to locate current contact information for the respondents.

Experienced trained locators (who are also highly trained and experienced telephone interviewers) will call the 2001 sampled telephone numbers. The computerized system will keep track of the outcome of each call. Locators will maintain detailed notes on each number dialed and its outcome. The computer also captures the date, time of day, and length of call. Refusal cases are tabulated separately with detail as to the timing and nature of the refusal.

Figure 1 (next page) summarizes the locating and introductory processes.

Figure 1. Flowchart of the 2007 SATH locating and introductory processes.

2001 R wants to verify the legitimacy or needs additional info

2001 R is available

Complete SATH interview with eligible respondent directly

Data collection methods

Once the 2001 respondent is located, the locator will collect current contact information about the eligible SATH respondent. The 2001 respondent is free to give as much or as little contact information as they wish to share. This includes his/her name (first, middle, and last), nickname, or initials; phone numbers (each number will be queried if the number is cellular or residential); email (personal, business, or school); street and mailing address; residence type (private, dorm, etc.); and date of birth or age (confirmation). We are unsure of the specific nature of the contact information that will be supplied; therefore, we have taken many possible contact scenarios into account when designing the scripts and procedures. We will offer respondents the option of completing the survey over the telephone or over the Internet. CATI and web survey introduction and exit scripts, as well as proposed screening and locating text, can be found in Attachments 1 and 2 (pages 17 and 26 respectively).

Separate procedures are in place to collect information for ‘leads’ who may know how to locate the 2001 respondent if he/she cannot be located. We plan to ask for contact information for persons who may know how to locate the 2001 respondent and/or the 2007 eligible respondent. If the locators are successful at obtaining valid contact information, the initial contact of the eligible young adult may occur via (his/her) cellular phone(s), landline telephone(s), email address, addresses, and/or fax number(s).

Telephone

If we contact the eligible young adult by telephone, we will encourage him/her to complete the interview over the telephone immediately so we do not risk losing the case. A web-based internet application has been developed to collect data in lieu of the traditional computer-assisted telephone interviewing (CATI) program that we have used consistently for other SLAITS modules. This allows us to streamline instrument development and reduce the amount of preparation time because only one version of the survey will need to be constructed regardless of mode, instead of having to construct a CATI-version and a web version. More information on the data collection program and web data collection is available in Attachment 6iii (page 107).

Internet

Eligible SATH respondents who wish to complete the survey over the web will be mailed (or emailed) a letter that contains a link to a website which will display a screen with the information below, as well as a Personal Identification Number (PIN) and password to enter (Attachment 7i, page 114). Reminder letters for potential web participants will be sent or emailed as needed (Attachment 7ii, page 115).

3. Methods to Maximize Response Rates and Deal with Nonresponse

Thorough locating techniques by experience personnel will help us make as many positive contacts as possible. Callbacks and reminders will be conducted to the extent the ERB allows. Finally, token incentives will be provided to those who elect to participate in the interview. Traditional response rates are not appropriate for this non-probability sample. Because we have not attempted this survey design in the past, we are unsure as to how many definite matches we will be able to confirm.

Ongoing analysis will be conducted to evaluate the extent to which nonresponse and other biases are impacting the quality of the data being collected. Examination of expected demographic characteristics, interview break-offs, and other qualitative and quantitative measures will be constantly reviewed and assessed. Should changes to the survey design be warranted, proper clearances will be sought.

5. Individuals Consulted on Statistical Aspects and Individuals Collecting and/or Analyzing Data

The following person was consulted on the statistical aspects of design, data collection, and analysis:

Stephen Blumberg, Ph.D.

Senior Health Scientist, SLAITS

National Center for Health Statistics

Division of Health Interview Statistics

[email protected]

301-458-4107

Attachments

CATI and web survey introduction and exit scripts
Screening and locating text
Data collection instrument: 2007 Survey of Adult Transition and Health (SATH)
Text of SATH recruitment or verification message to be emailed, faxed, or mailed (upon request)
SATH thank you letter (accompanies remuneration)
Backup supporting material
Letter sent or mailed to potential web respondents

Attachment 1

CATI and web survey introduction and exit scripts

OMB Number 0920-0406

Expiration date 11/30/07

CATI QUESTIONNAIRE INTRODUCTION

According to the Paperwork Reduction Act (PRA) of 1995, no persons are required to respond to a collection of information unless such collection displays a valid OMB control number. The valid OMB control number for this information collection is 0920-0406. The time required to complete this information collection is estimated to average 15 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, and complete and review the information collection. If you have any comments about the accuracy of the time estimate(s) or suggestions for improving this form please write to: CDC Reports Clearance Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333; call 404-639-4604; or send an email to [email protected].

The Public Health Service Act is Volume 42 of the US Code, Section 242k. The collection of information in this survey is authorized by Section 306 of this Act. The confidentiality of your responses is assured by Section 308d of this Act, and by the Confidential Information Protection and Statistical Efficiency Act.

Data collection is conducted under contract to the CDC by the National Opinion Research Center (NORC) at the University of Chicago.

NEW_RESP Hello, my name is ________________. I'm calling on behalf of the Centers for Disease Control and Prevention.

[If youth name available, “May I please speak to [FILL YOUTHNAME_A-YOUTH_NAME_D”]?

Yes, youth comes to phone 1 [GO TO NEW_RESP_SC]

No, youth unavailable………………………………2 [GO TO REACH_SC]

REACH_SC When would be a good time to call back to reach [FILL YOUTHNAME_A-YOUTH_NAME_D”]?

__ __ : __ __

(1) AM

(2) PM

(3) NOON

(4) MIDNIGHT

(7) DON’T KNOW

(9) REFUSED

NEW_RESP_SC

Hello, my name is ________________. I'm calling on behalf of the Centers for Disease Control and Prevention. We are doing a nationwide survey about the health of young people in your age group, and their health status and health care as they get older. In 2001, we spoke to someone in your household about health care. The Centers for Disease Control and Prevention would now like to discuss changes that may have occurred to your health or healthcare in the past few years.

CONTINUE………………………………………………1 [GO TO SL_INTRO]

PROXY NEEDED 2 [GO TO PDIFF]

PDIFF What difficulty do you have that prevents you from participating for yourself?

Hearing difficulty 1 [GO TO WEB OPTION; IF

WEB DECLINED, GO TO RELAY, RELAY DECLINED, GO TO PROXY_INT]

Speech difficulty 2 [GO TO WEB OPTION]

Cognitive barrier 3 [GO TO PROXY_SCR]

Physical barrier 4 [GO TO WEB OPTION]

DK 77 [GO TO WEB OPTION]

REFUSED 99 [GO TO PROXY_SCR]

RELAY Thank you for this information. I can continue the RELAY interview in a few minutes, or schedule a time to call you back. Which would be better for you?

CONTINUE NOW USING RELAY 1 [GO TO RELAYNOW]

SCHEDULE CALLBACK WITH RELAY 2 [GO TO RELAYCBK]

DON’T KNOW 77 [GO TO RELAYNOW]

REFUSED 99 [GO TO RELAYNOW]

RELAYNOW I have to call into the TTY machine to continue this interview. I will call you back in less than five minutes at [FILL SAMPLED PHONE XXX-XXX-XXXX]. Please stay by your TTY machine for the next five minutes. Thank you, and good bye.

RELAYCBK. When would be a good time to call back to reach you using RELAY?

__ __ : __ __

RELAYCBK_2 (1) AM

(2) PM

(3) NOON

(4) MIDNIGHT

(7) DON’T KNOW

(9) REFUSED

PROXY_SCR

Is the person who makes the majority of the decisions about the [FILL AGE]-year old’s health care available?

YES, CURRENTLY ON PHONE 1 [START PROXY INTERVIEW]

NO, NOT AVAILABLE 2 [GO TO REACH_PROX]

PROXY_INT I understand that you are the person who makes the majority of the decisions about the [FILL NAME?]. The CDC is interested in either talking with (FILL him/her) for about 15 minutes, or having him/her complete the survey on the Internet. We understand that he/she is unable to do this. Is this correct? [PROBE TO DETERMINE IF CASE IS ELIGIBLE FOR PROXY COMPLETION AND CODE REASON:]

Yes, hearing difficulty 1 [CONTINUE]

Yes, speech difficulty 2 [CONTINUE]

Yes, cognitive barrier 3 [CONTINUE]

Yes, physical barrier 4[CONTINUE]

No, youth is able to do the interview.. ….5 [TERMINATE & CONTACT YOUTH R]

Because [FILL he/she] cannot be interviewed and you are knowledgeable about [FILL: his/her] healthcare, the CDC would like to interview you in [FILL: his/her] place. Please keep in mind that these questions are written to be asked of [FILL: NAME] directly, so please answer the questions as if they were being asked of [FILL:him/her].

SL_INTRO Before we continue, I’d like you to know that it is your choice to participate in this research. You may choose not to answer any question you don’t wish to answer or stop at any time. This study is authorized by the U.S. Public Health Service Act. By law, we will take all possible steps to protect your privacy and are required to use your answers only for statistical research. I can give you more information on this and other federal laws if you want. The survey will take about 15 minutes. In appreciation, you will receive $20. (IF CALLING KNOWN CELL PHONE NUMBER: You will also receive an additional $5 to defer your costs for doing the interview on your cell phone.) I’d like to continue unless you have any questions. [SKIP IF PDIFF=1:] In order to review my work, my supervisor may record and listen as I ask the questions. I’d like to continue now unless you have any questions.

CONTINUE, RECORDING ACCEPTABLE 1 [GO TO CONF_DOB_X]

CONTINUE, DO NOT RECORD……………………2 [DISABLE RECODRDING & GO TO CONF_DOB_X]

PROXY NEEDED 2 [GO TO PDIFF]

help screen (SL_INTRO): The Public Health Service Act is Volume 42 of the US Code, Section 242k. The collection of information in this survey is authorized by Section 306 of this Act. The confidentiality of your responses is assured by Section 308d of this Act, and by the Confidential Information Protection and Statistical Efficiency Act.

CONF

DOB_x Before we begin, I’d like to confirm your date of birth. The birth date I have for you is [FILL: BIRTH DATE FROM 2001 DOB].

Is this correct?

YES 1 [GO TO F2Q11]

NO 2 [GO TO NEWDOB_X]

NEWDOB_X What is the correct month, day and year of birth of [FILL YOUTH_NAME_A OR FILL YOUTH_NAME_D if given]?

_____/_____/_____ (mm/dd/yyyy)

GO TO SECTION 2: HEALTH AND FUNCTIONAL STATUS (F2Q11).

CATI QUESTIONNAIRE EXIT

ALL PATHS LEAD TO THIS EXIT PATH WHEN

CONFDOB_X=1 or NEWDOB_X IS WITHIN RANGE

Those are all the questions I have. Thank you for participating in the 2007 Survey of Adult Transition and Health. In appreciation of your time, we would like to send you 20 dollars.

YES 1 [GO TO AC_NAME

INTRO]

NO 2 [GO TO AC_REFUSED]

AC_NAME INTRO

Can you please give me your name and mailing address?

AC_NAME____________________________

AC_STREET__________________________

AC_CITY_____________________________

AC_STATE ___________________________

AC_ZIP ______________________________

[GO TO CELL_PAY]

CELL_PAY

Did we conduct this survey on your cell phone?

YES 1 [GO TO CELL_SCRIPT]

NO 2 [GO TO AC_REFUSED]

CELL_SCRIPT

You will also receive an additional $5 to defer your costs for doing the interview on your cell phone. [GO TO AC_REFUSED]

AC_Refused [BLANK]

Address correct and confirmed 01 GO TO AC2

Refused to give/confirm address 99 GO TO AC2

AC2 Those are all the questions I have. I’d like to thank you on behalf of the Centers for Disease Control and Prevention for the time and effort you’ve spent answering these questions. If you would like more information about the Survey of Adult Transition and Health, please call the study's toll-free number, xxx-xxx-xxxx. If you have questions about your rights as a study participant, you may call 1-800-223-8118, toll-free, and leave a message asking to speak to the Chairperson of the Research Ethics Review Board. Thanks again.

2007 SATH WEB QUESTIONNAIRE INTRODUCTION OMB Number 0920-0406

Expiration date 11/30/07

Data collection is conducted under contract to the CDC by the National Opinion Research Center (NORC) at the University of Chicago.

[STANDARD PIN and password entry screen FORTHCOMING]

The Centers for Disease Control and Prevention (CDC) is doing a nationwide survey about the health of young adults, and their health status and health care as they get older. In 2001, we spoke to someone in your household about health care. The CDC would like to examine changes that may have occurred in your health or healthcare in the past few years by getting information directly from you.

It is your choice to participate in this research. You may choose not to answer any question you don’t wish to answer--simply leave it blank. You may also stop the survey at any time without penalty, or continue it at a later time. INSERT BREAK OFF INSTRUCTIONS (currently being developed by NORC). You will be able to restart the survey where you left off.

This study is authorized by the U.S. Public Health Service Act. This and other strict laws require us to protect your privacy and use your answers only for statistical research. You can see these laws by clicking here^⁶.

This survey will take about 15 minutes. In appreciation, you will receive $20. If you have any questions about this study, please call the study's toll-free number, xxx-xxx-xxxx.

The survey contains questions about your health, health status, and health care as you get older. INSERT WEB QUEX NAVIGATION INSTRUCTIONS (currently being developed by NORC).

Please confirm your date of birth. The birth date we have for you is [FILL: BIRTH DATE FROM 2001 DOB]. Is this correct?

YES 1 [GO TO F2Q11]

NO 2 [GO TO NEWDOB_X]

NEWDOB_X

What is the correct month, day and year of birth of [FILL YOUTH_NAME_A OR FILL YOUTH_NAME_D if given]?

_____/_____/_____ (mm/dd/yyyy)

GO TO SECTION 2: HEALTH AND FUNCTIONAL STATUS (F2Q11).

WEB QUESTIONNAIRE EXIT

ALL PATHS LEAD TO THIS EXIT PATH WHEN

CONFDOB_X=1 or NEWDOB_X IS WITHIN RANGE

Those are all the questions. Thank you for participating in the 2007 Survey of Adult Transition and Health. In appreciation of your time, we would like to send you 20 dollars.

Please enter your name and mailing address:

AC_NAME____________________________

AC_STREET__________________________

AC_CITY_____________________________

AC_STATE ___________________________

AC_ZIP ______________________________

AC2

I’d like to thank you on behalf of the Centers for Disease Control and Prevention for the time and effort you’ve spent answering these questions. If you would like more information about this survey, please call the study's toll-free number, xxx-xxx-xxxx. If you have questions about your rights as a study participant, you may call 1-800-223-8118, toll-free, and leave a message asking to speak to the Chairperson of the Research Ethics Review Board. Thanks again!

Attachment 2:

Screening and locating text

OMB Number 0920-0406

Expiration date 11/30/07

2007 SATH SCREENER

SCREENER PART 1: LOCATE 2001 CSHCN RESPONDENT

According to the Paperwork Reduction Act (PRA) of 1995, no persons are required to respond to a collection of information unless such collection displays a valid OMB control number. The valid OMB control number for this information collection is 0920-0406. The time required to complete this information collection is estimated to average 3 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, and complete and review the information collection. If you have any comments about the accuracy of the time estimate(s) or suggestions for improving this form please write to: CDC Reports Clearance Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333; call 404-639-4604; or send an email to [email protected].

Data collection is conducted under contract to the CDC by the National Opinion Research Center (NORC) at the University of Chicago.

INTRO_1 Hello, my name is ________________. I'm calling on behalf of the Centers for Disease Control and Prevention. May I please speak to someone who is 18 years of age or older?

YES, I AM ≥ 18 YO ………………………………….. 1 [GO TO INTRO_1A]

THIS IS A BUSINESS………………………………… 2 [GO TO PH_CONF]

NEW PERSON COMES TO PHONE……………….. 3 [GO TO INTRO_1]

LANGUAGE BARRIER

(ANY LANGUAGE OTHER THAN ENGLISH) …… 4 [GO TO TERM_BRIEF]

NO PERSON AT HOME WHO IS OVER 17 ……... 5 [GO TO S2_B]

OUT OF SCOPE 6 [GO TO THANK_YOU_OOS]

HHM ENDED CALL 7 [GO TO UNIVERSAL EXIT-T1]

ANSWERING MACHINE 8 [GO TO MSG_PENDING SCREENED]

R WILL CALL 800 LINE/VERIFY WEBSITE 9 [GO TO M1_NAME_WEB_ADD]

R ASKS FOR LETTER-MAILED 10 [GO TO UNIVERSAL EXIT-M1_NAME]

R ASKS FOR LETTER-EMAILED 11 [GO TO UNIVERSAL EXIT M1_EMAIL]

SUPERVISOR REVIEW 12 [GO TO CALL NOTES BOX]

(RAISE YOUR HAND TO GET PERMISSION BEFORE USING THIS CODE)

REFUSED …………………………………………… 99 [GO TO TERM_BRIEF]

SALZ_BUS We are interviewing only private residences. Thank you very much.

[TERMINATE INTERVIEW]

S2_B Does anyone live in your household who is over 17 years old?

YES 1 GO TO [BLANK] SCRIPT SHOWN BELOW

NO 2 GO TO PH_CONF

[BLANK] Thank you, we’ll try back another time.

PH_CONF Before I go, I’d like to confirm the phone number I have dialed. Is this area code [FILL PHONE]?

YES 1 [GO TO PH_TIME]

NO 2 [GO TO NEWPHONE]

NUMBER HAS CHANGED/

NUMBER FORWARDED 3 [GO TO NEWPHONE]

REFUSED ……………………………………………...4 [GO TO TERM_TY]

NEWPHONE Can you tell me what number I have reached?

NNN-NNN-NNNN [GO TO PH_TIME]

PH_TIME How many years have you had this telephone number (FILL “XXX-XXX-XXXX)?

LESS THAN FOUR YEARS [GO TO TERM_TY]
MORE THAN FOUR YEARS [GO TO TERM_TY ]

TERM_TY Those are all the questions I have. I’d like to thank you on behalf of the Centers for Disease Control and Prevention for the time and effort you’ve spent answering these questions. (If you would like more information about the Survey of Adult Transition and Health, please call the study's toll-free number, XXX-XXX-XXXX.)

INTRO_1A In (INTDATE-YYYY), we conducted a nationwide telephone study on children’s health with an adult at this phone number about a child who was between the ages of 14-17 years of age at the time. This child would now be approximately [FILL AGE] years old. The Centers for Disease Control and Prevention is now interested in speaking to this [FILL AGE]-year old’s [FILL RELATION] again. This study is authorized by the U.S. Public Health Service Act. It and other federal laws require us to protect your information and keep it private.

Is [he/she] available?

HUNG UP DURING INTRO 1 [GO TO UNIVERSAL EXIT-T1]

YES, CURRENTLY SPEAKING WITH HIM/HER 2 [GO TO INTRO_2001R]

YES, 2001 R COMES TO THE PHONE 3 [GO TO INTRO_2001R]

YES, 2001 R IS AVAILABLE BUT NEEDS THE IWER

TO CALL BACK SO R CAN SWITCH TO TTY 4 [GO TO RELAYNOW]

THIS PERSON NEEDS THE INTERVIEWER TO

CALL BACK LATER AND CONDUCT THE INTERVIEW

USING TTY 5 [GO TO RELAYNOW]

LANGUAGE BARRIER

(ANY LANGUAGE OTHER THAN ENGLISH) 7 [GO TO TERM_BRIEF]

NO SUCH PERSON AT THIS NUMBER 8 [GO TO PHONE_01INFO]

NO, THE PERSON YOU NEED TO SPEAK WITH IS

NOT AVAILABLE. 9 [GO TO REACH_CB]

NO, 2001 R HAS MOVED 10 [GO TO 2001R_CONT]

NO, 2001 RESPONDENT IS HOSPITALIZED,

INSTITUTIONALIZED OR INCARCERATED 11 [GO TO TERM_TY]

NO, 2001 RESPONDENT IS DECEASED 12 [GO TO F1Q]

NO, 2001 RESPONDENT IS SERVING IN THE MILITARY

OR LIVING OUTSIDE USA 13 [GO TO TERM_TY]

NO, THE PERSON DOES NOT KNOW HOW TO CONTACT

THE 2001 R 14 [GO TO REACH_5]

PERSON WANTS TO VERIFY THE LEGITIMACY OF

THE SURVEY OR NEEDS ADDITIONAL

INFORMATION 15 [GO TO UE-1_NAME_WEB]

R KNOWS 2 OR MORE POSSIBLE 2001 RESPONDENTS

WHO LIVE OR USED TO LIVE AT THIS NUMBER…16 [GO TO DOB_PROBE]

------------------SPACE---------------------

IF VOLUNTEERED: YOUTH IS SERVING IN THE MILITARY,

INCARCERATED OR LIVING OUTSIDE USA 17[GO TO WEB_OFFER]

IF VOLUNTEERED: YOUTH DOES NOT HAVE ANY CONTACT INFO

(HOMELESS, ETC.)… 18 [GO TO REACH_5]

IF VOLUNTEERED: YOUTH IS DECEASED 19 [GO TO F1Q_Y]

DON’T KNOW 77 [GO TO REACH_5]

REFUSED 99 [GO TO TERMINATE AFTER RC ATTEMPT]

RELAYCBK. When would be a good time to call back to reach you using RELAY?

__ __ : __ __

(1) AM

(2) PM

(3) NOON

(4) MIDNIGHT

(7) DON’T KNOW

(9) REFUSED

PHONE_

01INFO Do you know the person that had this phone number in 2001?

YES 1 GO TO 2001R_CONT

NO 2 GO TO PH_CONF

REACH_5 Do you know who else I can contact who might know this [FILL AGE_CALC] year-old’s / [FILL AGE_CALC] year-old’s [RELATION] contact information?

YES 1[GO TO LEAD_REACH_01

IF 2001 R LEAD; LEAD_REACH_Y IF YOUTH LEAD]

NO 2 [GO TO PH_CONF]

DON’T KNOW 77 [GO TO PH_CONF]

REFUSED 99 [GO TO PH_CONF]

REACH_CB When would be a good time to call back to reach (an adult) at this telephone number who would know of anyone who lives or used to live at this telephone number that is currently 19 to 23 years old?

__ __ : __ __

(1) AM

(2) PM

(3) NOON

(4) MIDNIGHT

(7) DON’T KNOW

(9) REFUSED

FILL CONTACT NAME AT APPOINTMENT SCREEN IF R WILL PROVIDE IT.

F1Q I’m sorry to hear that (FILL SEX-HE/SHE) passed away. Please accept my condolences.

ON-SCREEN HELP HERE FOR TRANSITION

[GO TO YOUTH_CONT]

F1Q_Y I’m sorry to hear that (FILL SEX-HE/SHE) passed away. I was calling about a study we are conducting for the Centers for Disease Control and Prevention but I will not need to continue. When did (FILL SEX-HE/SHE) pass away?

MMDDYYYY

(77) DK

(99) REF

[GO TO TERM_DTH]

TERM_DTH Thank you, and please accept my condolences. Goodbye.

DOB_

PROBE The person with whom I would like to speak would be the [FILL RELATION] of a [FILL MALE/FEMALE] child born on [FILL DOB-MMMDDYYYY]. Do you know who this might be?

TRAINING POINT: FAQ ABOUT HOW WE HAVE DOB AND WHY WE NEED TO CONFIRM IT

YES 1 [GO TO 2001R_CONT]

DON”T KNOW 77 [GO TO REACH_CB]

OMB Number 0920-0406

Expiration date 11/30/07

PATH TO COLLECT POSSIBLE 2001 RESPONDENT’S CONTACT INFORMATION

According to the Paperwork Reduction Act (PRA) of 1995, no persons are required to respond to a collection of information unless such collection displays a valid OMB control number. The valid OMB control number for this information collection is 0920-0406. The time required to complete this information collection is estimated to average 3 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, and complete and review the information collection. If you have any comments about the accuracy of the time estimate(s) or suggestions for improving this form please write to: CDC Reports Clearance Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333; call 404-639-4604; or send an email to [email protected].

Data collection is conducted under contract to the CDC by the National Opinion Research Center (NORC) at the University of Chicago.

2001R_CONT Could you please tell me the name of this [FILL CURRENT AGE] child’s [FILL RELATION]?

INTERVIEWER INSTRUCTION: IF R NOT COMFORTABLE PROVIDING NAME, ACCEPT INITIALS.

YES 1 [GO TO 2001R_NAME_A]

NO 2 [GO TO 2001R_NAME_D]

DON’T KNOW 3 [GO TO 2001R_NAME_D]

REFUSED 4 [GO TO 2001R_NAME_D]

2001R_NAME_A What is the [FILL RELATION]’s first name?

FIRST______________________________________________

2001R_NAME_B What is the [FILL RELATION]’s middle name?

MIDDLE_____________________________________________

2001R_NAME_C What is the [FILL RELATION]’s last name?

LAST_______________________________________________

2001R_NAME_D Does the [FILL RELATION] have a nickname, initials or another name that they may prefer?

NICKNAME/OTHER NAME__________________

2001R_PH Could you please tell me (FILL 2001 R_NAME_A OR FILL 2001 R_NAME_D if given)’s (FILL BLANK OR second…ninth) phone number?

YES 1 [RECORD phone number(s) IN 2001R_PH_X]

NO 2 [GO TO 2001 R_EM_X]

DON’T KNOW 77 [GO TO 2001 R_EM_X]

REFUSED 99 [GO TO 2001 R_EM_X]

2001R_

PH_X

2001 R PHONE NUMBER COLLECTION SCREEN

XXX-XXX-XXXX [GO TO 2001 R_PH_CONF]

2001R_PH_

CONF Is that a cellular telephone number?

YES 1 [GO TO 2001R_CONFHH]

NO 2 [GO TO 2001R_CONFHH]

DON’T KNOW 77 [GO TO 2001R_CONFHH]

REFUSED 99 [GO TO 2001R_CONFHH]

2001R_

CONFHH Is that number a private residence?

YES [GO TO 2001R_PH_LOOP]

NO [GO TO 2001R_PH_LOOP]

DON’T KNOW [GO TO 2001R_PH_LOOP]

REFUSED [GO TO 2001R_PH_LOOP]

2001R_PH_

LOOP Does (FILL 2001 R_NAME_A OR FILL 2001 R_NAME_D if given) have another phone number where (he/she) can be reached?

YES [GO TO NEXT 2001 R_PH]

NO [GO TO 2001R_EM_X]

DON’T KNOW [GO TO 2001R_EM_X]

REFUSED [GO TO 2001R_EM_X]

2001R

_EM_X Could you please tell me (FILL 2001 R_NAME_A OR FILL 2001 R_NAME_D if given)’s (FILL BLANK OR second…ninth) electronic mail or e-mail addresses?

YES 1 [RECORD E-MAIL ADDRESS ELEMENTS IN 2001R_MAIL_1 TO 2001R_EMAIL_9]

NO 2 [GO TO 2001R_AD_X]

DON’T KNOW 77 [GO TO 2001R_AD_X]

REFUSED 99 [GO TO 2001R_AD_X]

2001R_

EMAIL_1

through

2001R_

EMAIL_9 EMAIL ADDRESS COLLECTION SCREEN

____________________________ @ ______________________________._______

2001R_EM_ Is this email address for personal, business or school use?

CONF

PERSONAL 1 [GO TO 2001R_EM_LOOP]

BUSINESS 2 [GO TO 2001R_EM_LOOP]

SCHOOL USE 3 [GO TO 2001R_EM_LOOP]

DON’T KNOW 77 [GO TO 2001R_EM_LOOP]

REFUSED 99 [GO TO 2001R_EM_LOOP]

2001R_EM_

LOOP Does (FILL 2001 R_NAME_A OR FILL 2001 R_NAME_D if given) have another email address where (he/she) can be reached?

YES [GO TO NEXT 2001R_EM_X]

NO [GO TO 2001R_AD_X]

DON’T KNOW [GO TO 2001R_AD_X]

REFUSED [GO TO 2001R_AD_X]

2001R_AD

_X Could you please tell (FILL 2001 R_NAME_A OR FILL 2001 R_NAME_D if given)’s [FILL BLANK OR second…ninth] street address or addresses [IF 2001RPH_1 through 2001RPH_9 not equal null then FILL in case we cannot reach them by phone]?

YES 1 [GO TO 2001R_AD_ST_X]

NO 2 [CONF_INTRO_01R]

DON’T KNOW 77 [CONF_INTRO_01R]

REFUSED 99 [CONF_INTRO_01R]

2001R_AD_

ST_X What is the street address?

______________________________________________

2001R _AD_

APT_X What is the apartment number?

APT #________

2001R _AD_

CITY_X What is the city and state?

CITY__________________

2001R _AD_

STATE_X State Dropdown Menu

2001R _AD_ What is the zip code?

ZIP_X ZIP_________________ [GO TO 2001RCONYHH]

2001R

CONYHH Is that address a private residence?

YES [GO TO 2001R_AD_LOOP]

NO [GO TO 2001R_INST]

DON’T KNOW [GO TO CONF_INTRO_01R]

REFUSED [GO TO CONF_INTRO_01R]

2001R_

INST Can you describe the type of residence?

UNVERSITY/COLLEGE HOUSING (DORM) 1 [GO TO 2001R_AD_LOOP]

MILITARY BASE 2 [GO TO 2001R_AD_LOOP]

PRISON 3 [GO TO 2001R_AD_LOOP]

OTHER INSTITUTION 4 [GO TO 2001R_AD_LOOP]

DON’T KNOW 77 [GO TO 2001R_AD_LOOP]

REFUSED 99 [GO TO 2001R_AD_LOOP]

2001R_AD_

LOOP Does (FILL 2001 R_NAME_A OR FILL 2001 R_NAME_D if given) have another address where (he/she) can receive mail?

YES [GO TO NEXT 2001R_AD_X]

NO [GO TO CONF_INTRO_01R]

DON’T KNOW [GO TO CONF_INTRO_01R]

REFUSED [GO TO CONF_INTRO_01R]

CONF_INTRO_

01R I would like to confirm that I have the correct information for the person that we’ll be contacting.

[INTERVIEWER: CONFIRM ALL NAMES AND SPELLINGS WITH THE RESPONDENT. IF LAST NAMES ARE THE SAME, MAKE SURE THEY HAVE THE SAME SPELLING.]

CONF_NAME_

01R

The name I have for this person is [FILL NAME OF FROM 2001RNAME_A- 2001R_NAME_D].

Is this correct?

YES 1 [GO TO

2001R_FUTCONT

NO 2 [GO TO 2001R_CONT AND CORRECT]

2001R FUTCONT

May we contact you again if we have problems contacting this person who may have completed the 2001 interview?

YES 1 [GO TO FUTCONTNAME]

NO 2 [GO TO PH_CONF]

DON’T KNOW 77 [GO TO PH_CONF]

REFUSED 99 [GO TO PH_CONF]

FUTCONT

NAME What is your name?

NAME_________________________ [GO TO PH_CONF]

OMB Number 0920-0406

Expiration date 11/30/07

SCREENER PART 2:

OBTAIN CONTACT INFORMATION FOR SATH-ELIGIBLE RESPONDENT

FROM THE 2001 CSHCN RESPONDENT

DETERMINE IF PROXY RESPONDENT IS NEEDED TO COMPLETE THE 2007 SATH

According to the Paperwork Reduction Act (PRA) of 1995, no persons are required to respond to a collection of information unless such collection displays a valid OMB control number. The valid OMB control number for this information collection is 0920-0406. The time required to complete this information collection is estimated to average 3 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, and complete and review the information collection. If you have any comments about the accuracy of the time estimate(s) or suggestions for improving this form please write to: CDC Reports Clearance Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333; call 404-639-4604; or send an email to [email protected].

Data collection is conducted under contract to the CDC by the National Opinion Research Center (NORC) at the University of Chicago.

INTRO_

2001R (NOTE: Text in parentheses will appear if speaking with 2001 R. If 2001 R is deceased, text in parentheses will be omitted.)

In [INTDATE-YYYY] we conducted a nationwide children’s health care telephone study (with you) about a [FILL AGE] __ __ year-old child in your household. (Thank you for participating in the 2001interview.) The Centers for Disease Control and Prevention would like to add to the information (you) provided in 2001 by speaking to (this/your) child about [FILL SEX-his/her] current heath care. This child would now be [FILL AGE_CALC= ‘INTDATE MINUS DOB’ PLUS ‘CURRENTINTDATE-INTDATE’ = CURRENT AGE IN 2007’]. In appreciation, we’d like to offer [FILL SEX-him/her] $20. [FILL SEX-He/She] can be interviewed by phone, or complete the survey on the Internet. This study is authorized by the U.S. Public Health Service Act. It and other federal laws require us to protect your information and keep it private. (I’d like to continue unless you have any questions.)

INTERVIEWER INSTRUCTION: IF NO QUESTIONS, ASK THE FOLLOWING:

Can you tell me how to get in touch with this [FILL AGE_CALC]-year old?

HUNG UP DURING INTRO 1 [GO TO UE-T1]

YES, YOUTH COMES TO PHONE 2 [GO TO NEW_RESP (QUEX INTRO)]

YES, YOUTH IS OUTSIDE OF SAMPLED HH 3 [GO TO YOUTH_CONT]

YES, TWO OR MORE PEOPLE THAT AGE LIVE

OR USED TO LIVE AT THIS NUMBER 4 [GO TO DOB_PROBE_Y]

YES, YOUTH IS AVAILABLE BUT NEEDS THE IWER

TO CALL BACK SO R CAN SWITCH TO TTY 5 [GO TO RELAYNOW]

YES, YOUTH IS AVAILABLE BUT NEEDS

CURRENT RESPONDENT TO INTERPRET 6 [GO TO NEW_RESP]

NO SUCH PERSON AT THIS NUMBER 7 [GO TO REACH_5]

NO, THE PERSON YOU NEED TO SPEAK WITH IS

NOT AVAILABLE. 8 [GO TO REACH_SC_AGE]

NO, YOUTH HAS MOVED 9 [GO TO YOUTH_CONT]

NO, THE PERSON DOES NOT KNOW HOW TO CONTACT

THE YOUTH 11 [GO TO REACH_5]

NO, YOUTH IS HOSPITALIZED,

INSTITUTIONALIZED OR INCARCERATED 12 [GO TO PROXY_SCR]

NO, YOUTH IS INCAPABLE 13 [GO TO DIFF_Q]

NO, YOUTH IS SERVING IN THE MILITARY OR

LIVING OUTSIDE USA…. 13 [GO TO WEB_OFFER]

NO, YOUTH IS DECEASED 14 [GO TO F1Q_Y]

PERSON WANTS TO VERIFY THE LEGITIMACY OF

THE SURVEY OR NEEDS ADDITIONAL

INFORMATION 15 [GO TO UE-1_NAME_WEB]

DON’T KNOW 77 [GO TO REACH_5]

REFUSED 99 [GO TO TERMINATE AFTER RC ATTEMPT]

DOB_

PROBE_Y The person I would like to speak with was born on [FILL DOB-MMMDDYYYY]. Do you know who this might be?

TRAINING POINT: FAQ ABOUT HOW WE HAVE DOB AND WHY WE NEED TO CONFIRM IT.

YES 1 [GO TO INTRO_2001R “Can you tell me how to get in touch with…?”]

Don’t Know 77 [GO TO REACH_5]

REACH_SC_AGE

When would be a good time to call back to reach the [FILL AGE]-year-old?

__ __ : __ __

(1) AM

(2) PM

(3) NOON

(4) MIDNIGHT

(7) DON’T KNOW

(9) REFUSED

DIFF_Q What difficulty does [FILL HE/SHE] have that prevents [FILL him/her] from participating?

Hearing difficulty 1 [GO TO WEB_OFFER; IF

WEB DECLINED, GO TO

RELAY, RELAY DECLINED

GO TO PROXY_SCR]

Speech difficulty 2 [GO TO WEB_OFFER]

Cognitive barrier 3 [GO TO PROXY_SCR]

Physical barrier 4 [GO TO WEB_OFFER]

DK 77 [GO TO WEB_OFFER]

REFUSED 99 [GO TO PROXY_SCR]

WEB_OFFER

We have a web-based survey available. [FILL: Would you like to /Can they] complete the survey using the web?

YES 1 [GO TO WEB OPTION]

NO 2 [GO TO PROXY_SCR]

PROXY_SCR

Is the person who makes the majority of the decisions about the [FILL AGE]-year old’s health care available?

YES, CURRENTLY ON PHONE 1 [START PROXY_INT]

YES, YOUTH MAKES OWN DECISIONS 2 [GO TO WEB_OFFER]

NO, NOT AVAILABLE 3 [GO TO REACH_PROX]

REACH_

PROX Can you tell me how I could contact the person who makes the majority of the decisions about the [FILL AGE]-year old’s health care?

YES 1 [GO TO PROX_NAME_A]

NO 2 [GO TO PH_CONF]

DON’T KNOW 77 [GO TO PH_CONF]

REFUSED 99 [GO TO PH_CONF]

PROX_NAME_A What is first name of this person who makes these decisions?

FIRST______________________________________________

PROX_NAME_B What is their middle name?

MIDDLE_____________________________________________

PROX_NAME_C What is their last name?

LAST_______________________________________________

PROX_NUM Could you please tell me this person’s telephone number?

YES 1 [RECORD phone number(s) IN PROX_PH_X]

NO 2 [GO TO PH_CONF]

DON’T KNOW 77 [GO TO PH_CONF]

REFUSED 99 [GO TO PH_CONF]

PROX_PH_X

PROXY PHONE NUMBER COLLECTION SCREEN

XXX-XXX-XXXX [GO TO PROXY_PH_CONF]

PROX_PH_

CONF Is that a cellular telephone?

YES 1 [GO TO PROX_CONFHH]

NO 2 [GO TO PROX_CONFHH]

DON’T KNOW 77 [GO TO PROX_CONFHH]

REFUSED 99 [GO TO PROX_CONFHH]

PROX_

CONFHH Is that number a private residence?

YES [GO TO PROX_PH_LOOP]

NO [GO TO PROX_PH_LOOP]

DON’T KNOW [GO TO PROX_PH_LOOP]

REFUSED [GO TO PROX_PH_LOOP]

PROX_PH_

LOOP Does (FILL 2001 R_NAME_A OR FILL 2001 R_NAME_D if given) have another phone number where (he/she) can be reached?

YES [GO TO NEXT PROX_PH_X]

NO [GO TO PH_CONF]

DON’T KNOW [GO TO PH_CONF]

REFUSED [GO TO PH_CONF]

OMB Number 0920-0406

Expiration date 11/30/07

SCREENER PART 3:

COLLECT ELIGIBLE ADULT (2007 RESPONDENT) IDENTIFIERS

& LOCATING INFORMATION

According to the Paperwork Reduction Act (PRA) of 1995, no persons are required to respond to a collection of information unless such collection displays a valid OMB control number. The valid OMB control number for this information collection is 0920-0406. The time required to complete this information collection is estimated to average 3 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, and complete and review the information collection. If you have any comments about the accuracy of the time estimate(s) or suggestions for improving this form please write to: CDC Reports Clearance Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333; call 404-639-4604; or send an email to [email protected].

Data collection is conducted under contract to the CDC by the National Opinion Research Center (NORC) at the University of Chicago.

YOUTH_CONT I’d like to collect a few pieces of information in order to contact this [FILL AGE]- year old. Could you please tell me the name of the young adult?

INTERVIEWER INSTRUCTION: IF R NOT COMFORTABLE PROVIDING NAME, ACCEPT INITIALS.

YES 1 [GO TO YOUTH_NAME_A]

NO 2 [GO TO YOUTH_NAME_D]

DON’T KNOW 3 [GO TO YOUTH_NAME_D]

REFUSED 4 [GO TO YOUTH_NAME_D]

YOUTH_NAME_A What is the young adult’s first name?

FIRST______________________________________________

YOUTH_NAME_B What is the young adult’s middle name?

MIDDLE_____________________________________________

YOUTH_NAME_C What is the young adult’s last name?

LAST_______________________________________________

YOUTH_NAME_D Does the young adult have a nickname, initials or another name that they may prefer? NICKNAME/OTHER NAME__________________

YOUTH_PH Could you please tell me (FILL YOUTH_NAME_A OR FILL YOUTH_NAME_D if given)’s (FILL BLANK or second…ninth) phone number?

YES 1 [RECORD phone number(s) IN YPH_1 TO YPH_9]

NO 2 [GO TO YOUTH_EM_X]

DON’T KNOW 77 [GO TO YOUTH_EM_X]

REFUSED 99 [GO TO YOUTH_EM_X]

YPH_X YOUTH PHONE NUMBER COLLECTION SCREEN

XXX-XXX-XXXX [GO TO YOUTH_PH_CONF]

ADD PROBE: IS THERE A GOOD TIME TO CALL [FILL YOUTH_NAME_A]?

IF YES, SELECT APPOINTMENT SCREEN

YOUTH_PH_

CONF Is the phone number that you’ve just given me a cellular telephone?

YES 1 [GO TO YCONFHH]

NO 2 [GO TO YCONFHH]

DON’T KNOW 77 [GO TO YCONFHH]

REFUSED 99 [GO TO YCONFHH]

YCONFHH Is that number a private residence?

YES [GO TO YOUTH_PH_LOOP]

NO [GO TO YOUTH_PH_LOOP]

DON’T KNOW [GO TO YOUTH_PH_LOOP]

REFUSED [GO TO YOUTH_PH_LOOP]

YOUTH_PH_

LOOP Does (FILL YOUTH_NAME_A OR FILL YOUTH_NAME_D if given) have another phone number where (he/she) can be reached?

YES [GO TO NEXT YOUTH_PH]

NO [GO TO YOUTH_EM_X]

DON’T KNOW [GO TO YOUTH_EM_X]

REFUSED [GO TO YOUTH_EM_X]

YOUTH_EM

_X Could you please tell me (FILL SEXHIS/HER) (FILL BLANK OR second…ninth) electronic mail or e-mail addresses?

YES 1 [RECORD E-MAIL ADDRESS ELEMENTS IN YEMAIL_1 TO YEMAIL_9]

NO 2 [GO TO YOUTH_AD_X]

DON’T KNOW 77 [GO TO YOUTH_AD_X]

REFUSED 99 [GO TO YOUTH_AD_X]

YEMAIL_X

EMAIL ADDRESS COLLECTION SCREEN

____________________________ @ ______________________________._______

YOUTH_EM_ Is this an email address for personal, business or school use?

CONF

PERSONAL 1 [GO TO YOUTH_EM_LOOP]

BUSINESS 2 [GO TO YOUTH_EM_LOOP]

SCHOOL USE 3[GO TO YOUTH_EM_LOOP]

DON’T KNOW 77 [GO TO YOUTH_EM_LOOP]

REFUSED 99 [GO TO YOUTH_EM_LOOP]

YOUTH_EM_

LOOP Does (FILL YOUTH_NAME_A OR FILL YOUTH_NAME_D if given) have another email address where (he/she) can be reached?

YES [GO TO NEXT YOUTH_EM_X]

NO [GO TO YOUTH_AD_X]

DON’T KNOW [GO TO YOUTH_AD_X]

REFUSED [GO TO YOUTH_AD_X]

YOUTH_

AD_X Could you please tell me (HIS/HER) street address or mailing address [IF YPH_X not equal null then FILL “in case we cannot reach them by phone”]?

YES 1 [GO TO YOUTH_AD_ST_X]

NO 2 [GO TO CONF_INTRO]

DON’T KNOW 77 [GO TO CONF_INTRO]

REFUSED 99 [GO TO CONF_INTRO]

YOUTH_AD_

ST_X What is the young adult’s street address or mailing address?

______________________________________________

YOUTH_AD

APT_X What is the young adult’s apartment number?

APT #________

YOUTH_AD_

CITY_X What is the young adult’s city and state?

CITY__________________

YOUTH_AD_

STATE_X State Dropdown Menu

YOUTH_AD_ What is the young adult’s zip code?

ZIP_X ZIP_________________ [GO TO YCONYHH]

YCONYHH Is the young adult’s address you just gave me a private residence?

YES 1 [GO TO YOUTH_AD_LOOP]

NO 2 [GO TO YOUTH_INST]

DON’T KNOW 77 [GO TO YOUTH_AD_LOOP]

REFUSED 99 [GO TO YOUTH_AD_LOOP]

YOUTH_

INST Can you describe the type of residence?

UNVERSITY/COLLEGE HOUSING (DORM) 1 [GO TO YOUTH_AD_LOOP]

MILITARY BASE 2 [GO TO YOUTH_AD_LOOP]

PRISON 3 [GO TO YOUTH_AD_LOOP]

OTHER INSTITUTION 4 [GO TO YOUTH_AD_LOOP]

DON’T KNOW 77 [GO TO YOUTH_AD_LOOP]

REFUSED 99 [GO TO YOUTH_AD_LOOP]

YOUTH_AD_

LOOP Does (FILL YOUTH_NAME_A OR FILL YOUTH_NAME_D if given) have another street or mailing address where (he/she) can be reached?

YES [GO TO NEXT YOUTH_AD_X]

NO [GO TO CONF_INTRO]

DON’T KNOW [GO TO CONF_INTRO]

REFUSED [GO TO CONF_INTRO]

CONF_INTRO

I would like to confirm that I have the correct information for the young adult that we’ll be contacting.

[INTERVIEWER: CONFIRM ALL NAMES AND SPELLINGS WITH THE RESPONDENT. IF LAST NAMES ARE THE SAME, MAKE SURE THEY HAVE THE SAME SPELLING]

CONF_NAME

The name I have for the young adult is [FILL YOUTH_NAME_A- YOUTH_NAME_D].

Is this correct?

YES 1 [GO TO CONFDOB_X]

NO 2 [GO TO YOUTH_NAME_A - YOUTH_NAME_D TO MAKE CORRECTION]

CONF

DOB_X The [FILL birth date/age] I have for [FILL YOUTH_NAME_A OR FILL YOUTH_NAME_D if given] is [FILL: BIRTH DATE FROM DOB/ AGE].

(If DOB is not available, confirm age)

Is this correct?

YES 1 GO TO Y_FUTCONT

NO 2 GO TO NEWDOB_1

NEW

DOB_1 What is the correct month, day and year of birth of [FILL YOUTH_NAME_A OR FILL YOUTH_NAME_D if given]?

_____/_____/_____ (mm/dd/yyyy)

FUTCONT

May we contact you again if we have problems contacting [FILL YOUTH_NAME_A OR FILL YOUTH_NAME_D if given)?

YES 1 [GO TO 2001R_NAMECONF_A]

NO 2 [GO TO TERMINATE]

DON’T KNOW 77 [GO TO TERMINATE]

REFUSED 99 [GO TO TERMINATE]

2001R_

NAMECONF_A What is your name?

NAME______________________________________________

2001R_

PHONECONF_A And what is the best phone number to reach you?

PHONE NUMBER COLLECTION SCREEN

XXX-XXX-XXXX

OMB Number 0920-0406

Expiration date 11/30/07

SCREENER PART 4:

COLLECT IDENTIFIERS AND

LOCATING INFORMATION

FOR 2001 OR 2007 RESPONDENT LEADS

PATH TO COLLECT INFORMATION FOR

LEAD THAT KNOWS HOW TO CONTACT

THE 2007 RESPONDENT (I.E., YOUNG ADULT)

According to the Paperwork Reduction Act (PRA) of 1995, no persons are required to respond to a collection of information unless such collection displays a valid OMB control number. The valid OMB control number for this information collection is 0920-0406. The time required to complete this information collection is estimated to average 3 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, and complete and review the information collection. If you have any comments about the accuracy of the time estimate(s) or suggestions for improving this form please write to: CDC Reports Clearance Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333; call 404-639-4604; or send an email to [email protected].

Data collection is conducted under contract to the CDC by the National Opinion Research Center (NORC) at the University of Chicago.

LEAD_REACH_Y

Could you please tell me the name of the person that may know how to contact the [FILL AGE]-year-old?

INTERVIEWER INSTRUCTION: IF R NOT COMFORTABLE PROVIDING NAME, ACCEPT INITIALS.

YES 1 [GO TO LEAD_NAME_A]

NO 2 [GO TO LEAD_NAME_D]

DON’T KNOW 3 [GO TO LEAD_NAME_D]

REFUSED 4 [GO TO LEAD_NAME_D]

LEAD_NAME_A What is the [FILL RELATION]’s first name?

______________________________________________

LEAD_NAME_B What is the [FILL RELATION]’s middle name?

MIDDLE_____________________________________________

LEAD_NAME_C What is the [FILL RELATION]’s last name?

LAST_______________________________________________

LEAD_NAME_D Does the [FILL RELATION] have a nickname, initials or another name that they may prefer?

NICKNAME/OTHER NAME__________________

LEAD_PH Could you please tell me (FILL LEAD _NAME_A OR FILL LEAD _NAME_D if given)’s (FILL BLANK OR second…ninth) phone number?

YES 1 [RECORD phone number(s) IN LEAD_PH_X]

NO 2 [GO TO LEAD _EM_X]

DON’T KNOW 77 [GO TO LEAD _EM_X]

REFUSED 99 [GO TO LEAD _EM_X]

LEAD_

PH_X

LEAD R PHONE NUMBER COLLECTION SCREEN

XXX-XXX-XXXX [GO TO LEAD _PH_CONF]

LEAD_PH_

CONF Is that a cellular telephone number?

YES 1 [GO TO LEAD _CONFHH]

NO 2 [GO TO LEAD _CONFHH]

DON’T KNOW 77 [GO TO LEAD _CONFHH]

REFUSED 99 [GO TO LEAD _CONFHH]

LEAD_

CONFHH Is that number a private residence?

YES [GO TO LEAD _PH_LOOP]

NO [GO TO LEAD _PH_LOOP]

DON’T KNOW [GO TO LEAD _PH_LOOP]

REFUSED [GO TO LEAD _PH_LOOP]

LEAD_PH_

LOOP Does (FILL LEAD _NAME_A OR FILL LEAD _NAME_D if given) have another phone number where (he/she) can be reached?

YES [GO TO NEXT LEAD _PH]

NO [GO TO LEAD _EM_X]

DON’T KNOW [GO TO LEAD _EM_X]

REFUSED [GO TO LEAD _EM_X]

LEAD

_EM_X Could you please tell me (FILL LEAD R_NAME_A OR FILL LEAD R_NAME_D if given)’s (FILL BLANK OR second…ninth) electronic mail or e-mail addresses?

YES 1 [RECORD E-MAIL ADDRESS ELEMENTS IN LEAD_MAIL_1 TO LEAD_EMAIL_9]

NO 2 [GO TO LEAD_AD_X]

DON’T KNOW 77 [GO TO LEAD_AD_X]

REFUSED 99 [GO TO LEAD_AD_X]

LEAD_

EMAIL_1

through

LEAD_

EMAIL_9 EMAIL ADDRESS COLLECTION SCREEN

____________________________ @ ______________________________._______

LEAD_EM_ Is this email address for personal, business or school use?

CONF

PERSONAL 1 [GO TO LEAD_EM_LOOP]

BUSINESS 2 [GO TO LEAD_EM_LOOP]

SCHOOL USE 3 [GO TO LEAD_EM_LOOP]

DON’T KNOW 77 [GO TO LEAD_EM_LOOP]

REFUSED 99 [GO TO LEAD_EM_LOOP]

LEAD_EM_

LOOP Does (FILL LEAD _NAME_A OR FILL LEAD _NAME_D if given) have another email address where (he/she) can be reached?

YES [GO TO NEXT LEAD_EM_X]

NO [GO TO LEAD_AD_X]

DON’T KNOW [GO TO LEAD_AD_X]

REFUSED [GO TO LEAD_AD_X]

LEAD_AD

_X Could you please tell (FILL LEAD _NAME_A OR FILL LEAD _NAME_D if given)’s [FILL BLANK OR second…ninth] street address or addresses [IF LEADPH_1 through LEADRPH_9 not equal null then FILL in case we cannot reach them by phone]?

YES 1 [GO TO LEAD_AD_ST_X]

NO 2 [CONF_INTRO_LEAD]

DON’T KNOW 77 [CONF_INTRO_LEAD]

REFUSED 99 [CONF_INTRO_LEAD]

LEAD_AD_

ST_X What is the street address?

______________________________________________

LEAD _AD_

APT_X What is the apartment number?

APT #________

LEAD _AD_

CITY_X What is the city and state?

CITY__________________

LEAD _AD_

STATE_X State Dropdown Menu

LEAD _AD_ What is the zip code?

ZIP_X ZIP_________________ [GO TO LEADCONYHH]

LEAD

CONYHH Is that address a private residence?

YES [GO TO LEAD_AD_LOOP]

NO [GO TO LEAD_INST]

DON’T KNOW [GO TO CONF_INTRO_LEAD]

REFUSED [GO TO CONF_INTRO_LEAD]

LEAD_

INST Can you describe the type of residence?

UNVERSITY/COLLEGE HOUSING (DORM) 1 [GO TO LEAD_AD_LOOP]

MILITARY BASE 2 [GO TO LEAD_AD_LOOP]

PRISON 3 [GO TO LEAD_AD_LOOP]

OTHER INSTITUTION 4 [GO TO LEAD_AD_LOOP]

DON’T KNOW 77 [GO TO LEAD_AD_LOOP]

REFUSED 99 [GO TO LEAD_AD_LOOP]

LEAD_AD_

LOOP Does (FILL LEAD R_NAME_A OR FILL LEAD R_NAME_D if given) have another address where (he/she) can receive mail?

YES [GO TO NEXT LEAD_AD_X]

NO [GO TO CONF_INTRO_LEAD]

DON’T KNOW [GO TO CONF_INTRO_LEAD]

REFUSED [GO TO CONF_INTRO_LEAD]

CONF_INTRO_LEAD

I would like to confirm that I have the correct information for the person that we’ll be contacting.

[INTERVIEWER: CONFIRM ALL NAMES AND SPELLINGS WITH THE RESPONDENT.]

CONF_NAME_LEAD

The name I have for this person is [FILL NAME OF FROM LEADNAME_A- LEAD_NAME_D]. Is this correct?

YES 1 [GO TO LEAD_FUTCONT]

NO 2 [GO TO LEAD_CONT AND CORRECT]

LEAD_FUTCONT

May we contact you again if we have problems contacting this person?

YES 1 [GO TO FUTCONT_LEAD_NAME]

NO 2 [GO TO PH_CONF]

DON’T KNOW 77 [GO TO PH_CONF]

REFUSED 99 [GO TO PH_CONF]

FUTCONT_

LEAD_NAME What is your name?

NAME______________________________________________

[GO TO PH_CONF]

OMB Number 0920-0406

Expiration date 11/30/07

PATH TO COLLECT INFORMATION FOR LEAD

THAT KNOWS HOW TO CONTACT 2001 RESPONDENT

According to the Paperwork Reduction Act (PRA) of 1995, no persons are required to respond to a collection of information unless such collection displays a valid OMB control number. The valid OMB control number for this information collection is 0920-0406. The time required to complete this information collection is estimated to average 3 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, and complete and review the information collection. If you have any comments about the accuracy of the time estimate(s) or suggestions for improving this form please write to: CDC Reports Clearance Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333; call 404-639-4604; or send an email to [email protected].

Data collection is conducted under contract to the CDC by the National Opinion Research Center (NORC) at the University of Chicago.

LEAD_REACH_01

Could you please tell me the name of the person that may know how to contact the [FILL AGE]-year-old’s [RELATION]?

INTERVIEWER INSTRUCTION: IF R NOT COMFORTABLE PROVIDING NAME, ACCEPT INITIALS.

YES ………………………………………………………1 [GO TO LEAD_NAME_A_01]

NO 2 [GO TO LEAD_NAME_D_01]

DON’T KNOW 3 [GO TO LEAD_NAME_D_01]

REFUSED 4 [GO TO LEAD_NAME_D_01]

LEAD_NAME_A_01 What is the [FILL RELATION]’s first name?

______________________________________________

LEAD_NAME_B_01 What is the [FILL RELATION]’s middle name?

MIDDLE_____________________________________________

LEAD_NAME_C_01 What is the [FILL RELATION]’s last name?

LAST_______________________________________________

LEAD_NAME_D_01 Does the [FILL RELATION] have a nickname, initials or another name that they may prefer?

NICKNAME/OTHER NAME__________________

LEAD_PH_01 Could you please tell me (FILL LEAD _NAME_A_01OR FILL LEAD _NAME_D_01 if given)’s (FILL BLANK OR second…ninth) phone number?

YES 1 [RECORD phone number(s) IN LEAD_PH_X_01]

NO 2 [GO TO LEAD _EM_X_01]

DON’T KNOW 77 [GO TO LEAD _EM_X_01]

REFUSED 99 [GO TO LEAD _EM_X_01]

LEAD_

PH_X_01

LEAD R PHONE NUMBER COLLECTION SCREEN

XXX-XXX-XXXX [ GO TO LEAD _PH_CONF_01]

LEADR_PH_

CONF_01 Is that a cellular telephone number?

YES 1 [GO TO LEAD _CONFHH_01]

NO 2 [GO TO LEAD _CONFHH_01]

DON’T KNOW 77 [GO TO LEAD _CONFHH_01]

REFUSED 99 [GO TO LEAD _CONFHH_01]

LEAD_

CONFHH_01 Is that number a private residence?

YES [GO TO LEAD _PH_LOOP_01]

NO [GO TO LEAD _PH_LOOP_01]

DON’T KNOW [GO TO LEAD _PH_LOOP_01]

REFUSED [GO TO LEAD _PH_LOOP_01]

LEAD_PH_

LOOP_01 Does (FILL LEAD R_NAME_A_01 OR FILL LEAD R_NAME_D_01 if given) have another phone number where (he/she) can be reached?

YES [GO TO NEXT LEAD R_PH_01]

NO [GO TO LEAD _EM_X_01]

DON’T KNOW [GO TO LEAD _EM_X_01]

REFUSED [GO TO LEAD _EM_X_01]

LEAD

_EM_X_01 Could you please tell me (FILL LEAD_NAME_A_01 OR FILL LEAD_NAME_D_01 if given)’s (FILL BLANK OR second…ninth) electronic mail or e-mail addresses?

YES 1 [RECORD E-MAIL ADDRESS ELEMENTS IN LEAD_MAIL_1_01 TO LEAD_EMAIL_9_01

NO 2 [GO TO LEAD_AD_X_01]

DON’T KNOW 77 [GO TO LEAD_AD_X_01]

REFUSED 99 [GO TO LEAD_AD_X_01]

LEAD_

EMAIL_1_01

through

LEAD_

EMAIL_9_01 EMAIL ADDRESS COLLECTION SCREEN

____________________________ @ ______________________________._______

LEAD_EM_ Is this email address for personal, business or school use?

CONF

PERSONAL 1 [GO TO LEAD_EM_LOOP_01]

BUSINESS 2 [GO TO LEAD_EM_LOOP_01]

SCHOOL USE 3 [GO TO LEAD_EM_LOOP_01]

DON’T KNOW 77 [GO TO LEAD_EM_LOOP_01]

REFUSED 99 [GO TO LEAD_EM_LOOP_01]

LEAD_EM_

LOOP_01 Does (FILL LEAD _NAME_A OR FILL LEAD _NAME_D if given) have another email address where (he/she) can be reached?

YES [GO TO NEXT LEAD_EM_X_01]

NO [GO TO LEAD_AD_X_01]

DON’T KNOW [GO TO LEAD_AD_X_01]

REFUSED [GO TO LEAD_AD_X_01]

LEAD_AD

_X_01 Could you please tell (FILL LEAD _NAME_A OR FILL LEAD _NAME_D if given)’s [FILL BLANK OR second…ninth] street address or addresses [IF LEADPH_1 through LEADRPH_9 not equal null then FILL in case we cannot reach them by phone]?

YES 1 [GO TO LEAD_AD_ST_X_01]

NO 2 [CONF_INTRO_LEAD_01]

DON’T KNOW 77 [CONF_INTRO_LEAD_01]

REFUSED 99 [CONF_INTRO_LEAD_01]

LEAD_AD_

ST_X_01 What is the street address?

______________________________________________

LEAD _AD_

APT_X_01 What is the apartment number?

APT #________

LEAD _AD_

CITY_X_01 What is the city and state?

CITY__________________

LEAD _AD_

STATE_X _01 State Dropdown Menu

LEAD _AD_ What is the zip code?

ZIP_X_01 ZIP_________________ [GO TO LEADCONYHH]

LEAD

CONYHH_01 Is that address a private residence?

YES [GO TO LEAD_AD_LOOP_01]

NO [GO TO LEAD_INST_01]

DON’T KNOW [GO TO CONF_INTRO_LEAD_01]

REFUSED [GO TO CONF_INTRO_LEAD_01]

LEAD_

INST_01 Can you describe the type of residence?

UNVERSITY/COLLEGE HOUSING (DORM) 1 [GO TO LEAD_AD_LOOP_01]

MILITARY BASE 2 [GO TO LEAD_AD_LOOP_01]

PRISON 3 [GO TO LEAD_AD_LOOP_01]

OTHER INSTITUTION 4 [GO TO LEAD_AD_LOOP_01]

DON’T KNOW 77 [GO TO LEAD_AD_LOOP_01]

REFUSED 99 [GO TO LEAD_AD_LOOP_01]

LEAD_AD_

LOOP_01 Does (FILL LEAD R_NAME_A OR FILL LEAD R_NAME_D if given) have another address where (he/she) can receive mail?

YES [GO TO NEXT LEAD_AD_X_01]

NO [GO TO CONF_INTRO_LEAD_01]

DON’T KNOW [GO TO CONF_INTRO_LEAD_01]

REFUSED [GO TO CONF_INTRO_LEAD_01]

CONF_INTRO_LEAD_01

I would like to confirm that I have the correct information for the person that we’ll be contacting.

[INTERVIEWER: CONFIRM ALL NAMES AND SPELLINGS WITH THE RESPONDENT.]

CONF_NAME_LEAD_01

The name I have for this person is [FILL NAME OF FROM LEADNAME_A_01- LEAD_NAME_D_01].

Is this correct?

YES 1 [GO TO LEAD_FUTCONT_01

NO 2 [GO TO LEADNAME_A_01 to D_01 AND CORRECT]

LEAD_FUTCONT_01

May we contact you again if we have problems contacting this person who may have completed the LEAD interview?

YES 1 [GO TO FUTCONT_LEAD_NAME_01]

NO 2 [GO TO PH_CONF]

DON’T KNOW 77 [GO TO PH_CONF]

REFUSED 99 [GO TO PH_CONF]

FUTCONT_LEAD_NAME_01

What is your name?

NAME______________________________________________

[GO TO PH_CONF]

TERM_BRIEF

Thank you for your time (on behalf of the Centers for Disease Control).

TERMINATE Those are all the questions I have. I’d like to thank you on behalf of the Centers for Disease Control and Prevention for the time and effort you’ve spent answering these questions. If you would like more information about the Survey of Adult Transition and Health, please call the study's toll-free number, XXX-XXX-XXXX. If you have questions about your rights as a study participant, you may call 1-800-223-8118, toll-free, and leave a message asking to speak to the Chairperson of the Research Ethics Review Board. Thanks again.

UNIVERSAL EXIT (UE)

NO_CONTACT

CONTINUE 1 GO TO INTRO_1

ANSWERING MACHINE 2 GO TO MSG (OR SASERVIF NO MESSAGE LEFT)

OTHER TECHNOLOGICAL CIRCUMSTANCES 3 GO TO CALL NOTES

BOX

DISCONNECTED/NUMBER NOT ASSIGNED/ 4 GO TO CALL NOTES

BOX

CALL CAN’T BE COMPLETED

FAX/MODEM/DATA LINE. 5 TERMINATE

PRIVACY MANAGER/NO INCOMING CALLS/

CALL IS BLOCKED OR NOT ACCEPTED 7 GO TO UNIVERSAL EXIT-P1

FAST BUSY 8 TERMINATE

NUMBER CHANGED 9 TERMINATE

ENGAGED/BUSY/ALL CIRCUITS ARE BUSY 10 TERMINATE

NO REPLY/RING NO ANSWER 11 TERMINATE

SUPERVISOR REVIEW 12 GO TO CALL NOTES

BOX

RESPONDENT CALLED INTO 800 LINE 13 GO TO INTRO_1

M1_NAME_

WEB Do you have access to the internet?

Yes. 1 GO TO UNIVERSAL EXIT M1_NAME_WEB_ADD

No 2 GO TO UNIVERSAL EXIT- M1_NAME

M1_NAME_

WEB_ADD I would like to offer you the project’s web address. It provides a lot of additional project information.

FILL WEB ADDRESS

M1_EMAIL In order to email a letter to you, I will need to collect your email address. The letter will contain a toll-free number that you may call to complete the interview at your convenience.

___________@_______________._______

Continue 1 GO TO UNIVERSAL EXIT-M2

Refused to give information 2 GO TO UNIVERSAL EXIT-M3

M2 You will be receiving the letter in the next week [FILL or two (if mailed)]. It will contain a toll-free number that you may call at any time to complete the interview.

M3 Thank you very much on behalf of the Centers for Disease Control and Prevention.

M1_NAME In order to send you a letter, I will need to collect your name and mailing address. The letter will contain a toll-free number that you may call to complete the interview at your convenience. (Read if necessary: If you feel uncomfortable giving me your name, I can send the letter to "Resident".)

Continue 1 GO TO UNIVERSAL EXIT-M2

Refused to give information 2 GO TO UNIVERSAL EXIT-M3

M2 You will be receiving the letter in the next week or two. It will contain a toll-free number that you may call at any time to complete the interview. Thank you very much on behalf of the Centers for Disease Control and Prevention.

M3 Thank you very much on behalf of the Centers for Disease Control and Prevention.

T1 Did the respondent agree to a call back or say something to indicate he/she was too busy to participate? (Or do you need to code this case as a callback?)

Yes. 1 GO TO UNIVERSAL EXIT-CB1

No 2 GO TO UNIVERSAL EXIT-T2

R requested letter-emailed 5 GO TO UNIVERSAL EXIT-M1_EMAIL

R requested letter-mailed 5 GO TO UNIVERSAL EXIT-M1_NAME

R will call 800 Line/Verify website 6 GO TO UNIVERSAL EXIT-VERIFY_INFO

Take Me Off Your List 8 GO TO CALL NOTES

BOX

Out of Scope 9 GO TO CALL NOTES

BOX

R not over 17/R does not live in HH 10 GO TO CALL NOTES

BOX

Return to INTRO 11 GO TO INTRO IF T1 APPEARS DIRECTLY AFTER INTRO

T2 Did the respondent say anything other than hello before he/she hung up?

Yes 1 GO TO UNIVERSAL EXIT-T3

No 2 TERMINATE

T3 Did a respondent convey that there were no eligible children before hanging up?

Yes, No one under 25 lives in HH 1 TERMINATE

No, did not say 3 GO TO UNIVERSAL EXIT-T4

T4 Did the respondent say this number was for a nationally recognized business, an academic, health, or government institution, or a home business that is not used for personal calls?

Yes-Business 1 TERMINATE

Yes-Dorm/Prison/Hostel 2 TERMINATE

No 3 GO TO UNIVERSAL EXIT-T5

T5 Did the respondent say something to indicate that he/she refused to participate? (Or did they just hang up?)

Yes 1 GO TO UNIVERSAL EXIT-R1

No 2 GO TO UNIVERSAL EXIT-T6

T6 CODE AS GENERAL CALL BACK OR SUPERVISOR REVIEW

GENERAL CALL BACK 1 GO TO CALL NOTES BOX &TERMINATE

SUPERVISOR REVIEW 2 GO TO CALL NOTES BOX & TERMINATE

CB1 Is there …

A specific time to call back 1 GO TO APPT SCREEN

A range of time to call back 2 GO TO APPT SCREEN

Someone else gave a time to call back 3 GO TO APPT SCREEN

No specific time to call back,

said they were too busy ……………………………..4 TERMINATE

VERIFY_

INFO REFER TO FAQ/JOB AID TO ANSWER RESPONDENT QUESTIONS

Terminate the Interview (Hang up) 1 GO TO CALL NOTES BOX

Continue Interview 2 GO TO INTRO_1

R1 Was respondent male or female?

Male 1

Female 2

Could not be determined 3

R2 What was the reason for refusing? (Multiple responses possible)

Too busy/Doing something else right now 1

Interview will take too long 2

Not interested 3

No solicitation wanted/Don’t need anything/

Don’t want to buy anything 4

Requested not to be called back 5

Concerned about confidentiality 6

Won’t give information over the phone 7

Negative about government 8

Negative about surveys 9

On National Do Not Call List 10

No reason given 11

None of the above 12

R3 What questions did the respondent ask? (multiple response possible)

The study purpose 1

NORC 2

Who is sponsoring the

study (NCHS, DHHS, CDC, NIP) 3

Source of name and address on letter 4

Questioned legitimacy of study 5

The use of the data 6

The confidentiality of the data 7

Access to study results. 8

How did you get my phone number? 9

Where are you calling from? 10

No questions 11

None of the above 12

R4 Did the respondent threaten legal or governmental action or use hostile words or a hostile tone? These are refusals that are so strong that we don’t want to call them back.

Yes 1 GO TO CALL NOTES BOX

No 2 GO TO CALL NOTES BOX

P1 [BLANK]

IF A PRIVACY MANAGER ASKS YOU TO STATE YOUR NAME, SAY “On behalf of the Centers for Disease Control and Prevention.”

IF A PRIVACY MANAGER ASKS YOU TO ENTER THE NUMBER YOU ARE CALLING FROM, ENTER THE NIS TOLL-FREE NUMBER (866-999-3340).

Continue Interview 1 GO TO INTRO_1

Answering Machine 2 GO TO MSG_Y

Ring no answer 3 GO TO SASERV

Refused/ Number is invalid 4 GO TO SASERV

Take Me Off Your List 5 TERMINATE

Attachment 3:

2007

Survey of Adult Transition and Health (SATH)

Instrument

OMB Number 0920-0406

Expiration date 11/30/07

Data collection is conducted under contract to the CDC by the National Opinion Research Center (NORC) at the University of Chicago.

State and Local Area Integrated Telephone Survey (SLAITS)l

Survey of Adult Transition and Health (SATH)

Spring & Summer 2007

DRAFT SPECIFICATIONS

March 1, 2007

SECTION 2: HEALTH AND FUNCTIONAL STATUS 67

Subdomain 1. General health status 67

Subdomain 2. Activity limitations – daily living 68

Subdomain 3. Activity limitations – work 69

Subdomain 4. Activity limitations – school 71

Subdomain 5. Activity limitations – taking care of house or family 73

SECTION 3: MEDICAL HOME 74

Subdomain 1. Usual place for care 74

Subdomain 2. Continuous screening 75

Subdomain 3. Foregone or delayed care 76

Subdomain 4. Care coordination 77

Subdomain 5. Person-centered care 78

SECTION 4: TRANSITION SERVICES RELATED TO HEALTH 80

SECTION 5: COMMUNITY-BASED SERVICES 82

SECTION 6: HEALTH INSURANCE COVERAGE 83

Subdomain 1. Current coverage and past year coverage 83

Subdomain 2. Adequacy of health insurance 84

SECTION 7. TRANSITION SERVICES RELATED TO SCHOOL 85

SECTION 8. SELF-DETERMINATION 86

SECTION 9. SATISFACTION AND SUPPORT 87

SECTION 10. DEMOGRAPHICS 88

Subdomain 1. Marital status and living arrangements 88

Subdomain 2. Personal earnings and program participation 89

SECTION 2: HEALTH AND FUNCTIONAL STATUS

Subdomain 1. General health status

F2Q11 In general, how would you describe your health? Would you say your health is excellent, very good, good, fair, or poor?

(1) Excellent

(2) Very good

(3) Good

(4) Fair

(5) Poor

(7) DON’T KNOW

(9) REFUSED

F2Q12 About 6 years ago, your parent or guardian told us about your health. Compared with 6 years ago, would you say your health now is better, worse, or about the same?

(1) Better

(2) Worse

(3) About the same

(7) DON’T KNOW

(9) REFUSED

F2Q13 Do you consider yourself to have any kind of disability?

(1) Yes

(2) No

(7) Don’t know

(9) Refused

F2Q14 A person with special health care needs is someone who needs special health care services because of a medical, mental health, or other health condition. People with special health care needs might need medicine, therapy, or specialty care on a regular basis – stuff other people don’t typically need or only need once in a while. Do you consider yourself to have a special health care need?

(1) Yes

(2) No

(7) Don’t know

(9) Refused

Subdomain 2. Activity limitations – daily living

F2Q21 Because of a physical, mental, or emotional problem, do you need the help of other persons with PERSONAL CARE NEEDS, such as eating, bathing, dressing, or getting around inside your home?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F2Q22 Because of a physical, mental, or emotional problem, do you need the help of other persons in handling ROUTINE NEEDS, such as everyday household chores, doing necessary business, shopping, or getting around for other purposes?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F2Q23 Does a physical, mental, or emotional problem interfere with your ability to participate in social, religious, or recreation activities like sports, clubs, parties, or church?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

Subdomain 3. Activity limitations – work

F2Q30 What were you doing most of the past 12 months: Working at a job or business, looking for work, taking care of your house or family, going to school, or something else?

(1) Working at a job or business [SKIP TO F2Q32]

(2) Looking for work [SKIP TO F2Q31]

(3) Taking care of house or family [SKIP TO F2Q31]

(4) Going to school [SKIP TO F2Q31]

(5) Something else

(7) DON’T KNOW [SKIP TO F2Q31]

(9) REFUSED [SKIP TO F2Q31]

F2Q30A What were you doing most of the past 12 months?

TEXT FIELD: _______________________________________________________

F2Q31 Did you have a job or business at any time in the past 12 months?

(1) YES

(2) NO [SKIP TO Q37]

(7) DON’T KNOW [SKIP TO Q37]

(9) REFUSED [SKIP TO Q37]

F2Q32 In the past 12 months, how often has your health affected your ability to work at a job or business? Would you say:

(1) Never [SKIP TO Q34]

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW [SKIP TO Q34]

(9) REFUSED [SKIP TO Q34]

F2Q33 Does your health affect your ability to work a great deal, some, or very little?

(1) A great deal

(2) Some, or

(3) Very little?

(7) DON’T KNOW

(9) REFUSED

F2Q34 Because of your health, did you need any services, accommodations, or other assistance to help you do your job better?

(1) YES [SKIP TO Q35]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F2Q35 Did your job(s) or business(es) provide any services, accommodations, or other assistance to help you do your best there?

(1) YES [SKIP TO Q36]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F2Q36 Did you ask or apply for any services, accommodations, or other assistance from your job or business?

(1) YES [SKIP TO NEXT SUBDOMAIN]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F2Q37 Did you want to have a job or business at any time in the past 12 months?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F2Q38 Do you have plans to have a job or business in the next 12 months?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F2Q39 Does your health affect your ability to have a job or business?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

Subdomain 4. Activity limitations – school

IF F2Q30 = 4 (MAIN ACTIVITY IS SCHOOL), SKIP TO F2Q42.

F2Q41 In the past 12 months, did you attend any type of school?

(1) YES

(2) NO [SKIP TO Q47]

(7) DON’T KNOW [SKIP TO Q47]

(9) REFUSED [SKIP TO Q47]

F2Q42 In the past 12 months, how often has your health affected your ability to attend school? Would you say:

(1) Never [SKIP TO Q44]

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW [SKIP TO Q44]

(9) REFUSED [SKIP TO Q44]

F2Q43 Does your health affect your ability to attend school a great deal, some, or very little?

(1) A great deal

(2) Some, or

(3) Very little?

(7) DON’T KNOW

(9) REFUSED

F2Q44 Because of your health, did you need any services, accommodations, or other assistance to help you attend school or do your best there?

(1) YES [SKIP TO Q45]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F2Q45 Did the school(s) you attended provide any services, accommodations, or other assistance to help you do your best there?

(1) YES [SKIP TO Q46]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F2Q46 Did you ask or apply for any services, accommodations, or other assistance from your school?

(1) YES [SKIP TO NEXT SUBDOMAIN]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F2Q47 Did you want to attend any type of school in the past 12 months?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F2Q48 Do you have plans to enroll in any type of school in the next 12 months?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F2Q49 Does your health affect your ability to attend school or complete coursework?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

Subdomain 5. Activity limitations – taking care of house or family

IF F2Q30 = 3 (MAIN ACTIVITY IS TAKING CARE OF HOUSE OR FAMILY), ASK F2Q52. IF F2Q30 = (1,2,4,5,7,9), SKIP TO NEXT SUBDOMAIN.

F2Q52 In the past 12 months, how often has your health affected your ability to take care of your house or family? Would you say:

(1) Never [SKIP TO Q54]

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW [SKIP TO Q54]

(9) REFUSED [SKIP TO Q54]

F2Q53 Does your health affect your ability to take care of your house or family a great deal, some, or very little?

(1) A great deal

(2) Some, or

(3) Very little?

(7) DON’T KNOW

(9) REFUSED

F2Q54 Because of your health, did you need any services, accommodations, or other assistance to help you take care of your house or family?

(1) YES [SKIP TO Q55]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F2Q55 Did you receive any services, accommodations, or other assistance to help you take care of your house or family?

(1) YES [SKIP TO Q56]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F2Q56 Did you ask or apply for any services, accommodations, or other assistance to help you take care of your house or family?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

SECTION 3: MEDICAL HOME

Subdomain 1. Usual place for care

F3Q01 Is there a place that you USUALLY go when you are sick or you need advice about your health?

(01) YES

(02) THERE IS NO PLACE [SKIP TO Q03]

(03) THERE IS MORE THAN ONE PLACE

(77) DON’T KNOW [SKIP TO Q03]

(99) REFUSED [SKIP TO Q03]

F3Q02 When you are sick or you need advice about your health, what kind of place do you go to most often? Is it a doctor’s office, emergency room, hospital outpatient department, clinic, or some other place?

(01) Doctor’s office

(02) Hospital emergency room

(03) Hospital outpatient department

(04) Clinic or health center

(08) Some other place

(09) DOES NOT GO TO ONE PLACE MOST OFTEN

(77) DON’T KNOW

(99) REFUSED

F3Q03 Is there a place that you USUALLY go when you need routine preventive care, such as a physical examination or check-up?

(01) YES

(02) THERE IS NO PLACE [SKIP TO Q05]

(03) THERE IS MORE THAN ONE PLACE

(77) DON’T KNOW [SKIP TO Q05]

(99) REFUSED [SKIP TO Q05]

F3Q04 When you need routine preventive care, what kind of place do you go to most often? Is it a doctor’s office, emergency room, hospital outpatient department, clinic, or some other place?

(01) Doctor’s office

(02) Hospital emergency room

(03) Hospital outpatient department

(04) Clinic or health center

(08) Some other place

(09) DOES NOT GO TO ONE PLACE MOST OFTEN

(77) DON’T KNOW

(99) REFUSED

F3Q05 A personal doctor or nurse is a health professional who knows you well and is familiar with your health history. This can be a general doctor, a specialist doctor, a nurse practitioner, or a physician’s assistant. Do you have one or more persons you think of as your personal doctor or nurse?

(01) Yes, one person

(02) Yes, more than one person

(03) No

(77) Don’t Know

(99) Refused

Subdomain 2. Continuous screening

F3Q21 During the past 12 months, how many times have you seen a doctor, nurse, or other health care provider for preventive medical care such as a physical exam or checkup?

___ ___ ___ TIMES

(777) DON’T KNOW

(999) REFUSED

F3Q22 During the past 12 months, how many times did you see a dentist for preventive dental care, such as check-ups and dental cleanings?

___ ___ ___ TIMES

(777) DON’T KNOW

(999) REFUSED

IF F3Q21 ≥ 1 OR F3Q22 ≥ 1 THEN SKIP TO F3Q31. ELSE IF F3Q21 = (000,777,999) AND F3Q22 = (000,777,999) THEN ASK F3Q23.

F3Q23 During the past 12 months, did you see a doctor, nurse, or other health care provider for any kind of medical care?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

Subdomain 3. Foregone or delayed care

F3Q31 People often delay or do not get needed health care. Examples of needed health care include medical care as well as other types of care such as dental care, mental health services, and special types of therapies. In the past 12 months, have you delayed or gone without needed health care?

(1) YES

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F3Q32_INT There are many reasons people delay or do not get needed health care. Did you delay or did not get health care for yourself for any of the following reasons?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F3Q32A You couldn’t get through to the health care provider’s office on the telephone.

F3Q32B You couldn’t get an appointment soon enough.

F3Q32C The clinic or doctor’s office was not open when you could get there.

F3Q32D Transportation was a problem.

F3Q32E You didn’t have enough money to pay the health care provider.

F3Q32F The type of care you needed was not available in your area.

F3Q32G The health care provider did not have the skills you needed.

F3Q32H The type of care was not covered by your health plan.

F3Q32I You could not get approval from your health plan or doctor.

F3Q32J Once you get there, you have to wait too long to see the health care provider.

F3Q32K You have language, communication, or cultural problems with the health care provider.

F3Q32L Going to appointments conflicts with other responsibilities at home, school, or at work.

Subdomain 4. Care coordination

F3Q40 Does anyone help you arrange or coordinate your care among the different doctors or services that you use?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F3Q41 During the past 12 months, have you felt that you could have used extra help arranging or coordinating your care among the different doctors or services?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F3Q42 During the past 12 months, did you need a referral to see any doctors or receive any services?

(1) YES

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F3Q43 Was getting referrals a big problem, a small problem, or not a problem?

(1) Big problem

(2) Small problem

(3) Not a problem

(7) DON’T KNOW

(9) REFUSED

Subdomain 5. Person-centered care

IF F3Q22 = 2 (NO DOCTOR VISITS IN PAST YEAR), SKIP TO NEXT SUBDOMAIN.

F3Q51 During the past 12 months, how often did your doctors and other health care providers spend enough time with you? Would you say never, sometimes, usually, or always?

(1) Never

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW

(9) REFUSED

F3Q52 During the past 12 months, how often did your doctors and other health care providers listen carefully to you? Would you say never, sometimes, usually, or always?

(1) Never

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW

(9) REFUSED

F3Q53 How often are your doctors and other health care providers sensitive to your values and customs? Would you say never, sometimes, usually, or always?

(1) Never

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW

(9) REFUSED

F3Q54 Information about your health or health care can include things such as the causes of any health problems, how to care for yourself now, and what changes to expect in the future. In the past 12 months, how often did you get the specific information you needed from your doctors and other health care providers? Would you say never, sometimes, usually, or always?

(1) Never

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW

(9) REFUSED

F3Q55 During the past 12 months, how often did your doctors or other health care providers help you feel like a partner in your care? Would you say never, sometimes, usually, or always?

(1) Never

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW

(9) REFUSED

F3Q56 During the past 12 months, how often did your doctors or other health care providers encourage you to take responsibility for your health care needs, such as taking medication, understanding your health, or following medical advice? Would you say never, sometimes, usually, or always?

(1) Never

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW

(9) REFUSED

F3Q57 During the past 12 months, how often did your doctors or other health care providers talk directly to you and encourage you to ask questions? Would you say never, sometimes, usually, or always?

(1) Never

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW

(9) REFUSED

SECTION 4: TRANSITION SERVICES RELATED TO HEALTH

F4Q01 Have your doctors or other health care providers talked with you about how your health care needs might change as you got older?

(1) YES

(2) NO [SKIP TO Q03]

(7) DON’T KNOW [SKIP TO Q03]

(9) REFUSED [SKIP TO Q03]

F4Q02 Was a plan for addressing these changing needs developed with your doctors or other health care providers?

(1) YES [SKIP TO Q04]

(2) NO [SKIP TO Q04]

(7) DON’T KNOW [SKIP TO Q04]

(9) REFUSED [SKIP TO Q04]

F4Q03 Would a discussion about your health care needs have been helpful to you?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F4Q04 Do any of your doctors or other health care providers treat only children, teenagers, or adults?

(1) YES

(2) NO [SKIP TO Q07]

(7) DON’T KNOW [SKIP TO Q07]

(9) REFUSED [SKIP TO Q07]

F4Q05 Have they talked with you about eventually seeing doctors or other health care providers who treat adults?

(1) YES [SKIP TO Q07]

(2) NO

(7) DON’T KNOW

(9) REFUSED

F4Q06 Would a discussion about doctors who treat adults have been helpful to you?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F4Q07 Eligibility for health insurance often changes as children reach adulthood. Has anyone discussed with you how to obtain or keep some type of health insurance coverage?

(1) YES [SKIP TO Q09]

(2) NO

(7) DON’T KNOW

(9) REFUSED

F4Q08 Would a discussion about health insurance have been helpful to you?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F4Q09 Have your doctors or other health care providers helped you connect with other youth or adult mentors who could provide you with social, emotional, or career support?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

SECTION 5: COMMUNITY-BASED SERVICES

F5Q01 Most of the previous questions have been about medical services provided by your doctors. There are other types of services people may need or use because of their health. These services may be educational, vocational, or rehabilitation services, or community programs such as housing services, social services, or recreational services.

Thinking about your health needs and the health-related services that you need, have you had any difficulties trying to use any services during the past 12 months?

(1) YES

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F5Q02 There are many reasons why people may have difficulty trying to use these services. Did you have difficulty trying to use these services for any of the following reasons?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F5Q02_A You could not get the information you needed.

F5Q02_B There was too much paperwork required.

F5Q02_C You didn't have enough money to pay for the services.

F5Q02_D Transportation was a problem.

F5Q02_E There were long waiting lists.

F5Q02_F There were problems in communication between service providers.

F5Q02_G You had language, communication, or cultural problems with the service providers.

F5Q02_H You could not find service providers who had the skills you needed.

F5Q02_I The types of services you needed were not available in your area.

F5Q02_J The types of services you needed were available but you were not eligible.

F5Q02_K The types of services you needed were available but you had used up all eligible benefits.

F5Q02_L You didn't have the time to figure it all out.

SECTION 6: HEALTH INSURANCE COVERAGE

Subdomain 1. Current coverage and past year coverage

F6Q01_INT The next questions are about health insurance.

F6Q01 Do you have any kind of health care coverage, including health insurance, prepaid plans such as HMOs, or government plans such as Medicaid?

(1) YES [SKIP TO Q02]

(2) NO [SKIP TO Q04]

(7) DON’T KNOW [SKIP TO Q02]

(9) REFUSED [SKIP TO Q02]

F6Q02 Are you insured by Medicaid, the State Children’s Health Insurance Program (S-CHIP), or any other insurance program for people with low income or disabilities?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

IF Q01 IN (7, 9) AND Q02 IN (2, 7, 9), [SKIP TO Q04]

ELSE, [SKIP TO Q03]

F6Q03 During the past 12 months, was there any time when you were not covered by ANY health insurance?

(1) YES [SKIP TO NEXT SUBDOMAIN]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F6Q04 During the past 12 months, have you had health care coverage?

(1) YES [SKIP TO NEXT SUBDOMAIN]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

Subdomain 2. Adequacy of health insurance

F6Q20 The next questions are about your health insurance or health care plans. Does your health insurance offer benefits or cover services that meet your needs? Would you say:

(1) Never

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW

(9) REFUSED

F6Q22 Does your health insurance allow you to see the health care providers you need? Would you say:

(1) Never

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW

(9) REFUSED

F6Q21A Not including health insurance premiums or costs that are covered by insurance, do you pay any money for your health care? Include out-of-pocket payments for all types of health-related needs such as co-payments, dental or vision care, medications, and any kind of therapy.

(1) YES [SKIP TO Q21B]

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F6Q21B How often are these costs reasonable? Would you say:

(1) Never

(2) Sometimes

(3) Usually

(4) Always

(7) DON’T KNOW

(9) REFUSED

SECTION 7. TRANSITION SERVICES RELATED TO SCHOOL

F7_INTRO Next, I would like to ask you some questions about your education.

F7Q01 During the past 6 years, did you receive any vocational or career training to help you prepare for a job?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F7Q02 What is the highest grade or year of school you have completed?

(01) 8th GRADE OR LESS

(02) 9th-12th GRADE NO DIPLOMA

(03) HIGH SCHOOL GRADUATE OR GED COMPLETED

(04) COMPLETED A VOCATIONAL, TRADE, OR BUSINESS SCHOOL PROGRAM

(05) SOME COLLEGE CREDIT BUT NO DEGREE

(06) ASSOCIATE DEGREE (AA, AS)

(07) BACHELOR’S DEGREE (BA, BS, AB)

(08) MASTER’S DEGREE (MA, MS, MSW, MBA)

(09) DOCTORATE (PhD, EdD) or PROFESSIONAL DEGREE (MD, DDS, DVM, JD)

(77) DON’T KNOW

(99) REFUSED

F7Q03 Did you ever meet with adults at school or somewhere else to set goals for what you would do after high school and make a plan for how to achieve them? Sometimes this is called a transition plan.

(1) YES

(2) NO [SKIP TO NEXT SUBDOMAIN]

(7) DON’T KNOW [SKIP TO NEXT SUBDOMAIN]

(9) REFUSED [SKIP TO NEXT SUBDOMAIN]

F7Q04 Did you participate in the development of that plan?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

SECTION 8. SELF-DETERMINATION

Note: These items are adapted from the The Arc’s Self-Determination Scale.

F8_INTRO The next questions are statements about activities that you may do. For each statement, please indicate how often you do each activity: never, rarely, sometimes, usually, or always.

(1) Never

(2) Rarely

(3) Sometimes

(4) Usually

(5) Always

(7) DON’T KNOW

(9) REFUSED

F8Q01_A I keep my appointments and meetings.

F8Q01_B I choose how to spend my personal money.

F8Q01_C I plan weekend activities that I like to do.

F8Q02 How often is the following statement true for you? “I am able to make choices that are important to me.” Would you say that is never true, rarely true, sometimes true, usually true, or always true?

(1) Never

(2) Rarely

(3) Sometimes

(4) Usually

(5) Always

(7) DON’T KNOW

(9) REFUSED

F8Q03 How often is the following statement true for you? “I am able to make friends in new situations.” Would you say that is never true, rarely true, sometimes true, usually true, or always true?

(1) Never

(2) Rarely

(3) Sometimes

(4) Usually

(5) Always

(7) DON’T KNOW

(9) REFUSED

SECTION 9. SATISFACTION AND SUPPORT

F9Q01 In general, how satisfied are you with your life? Would you say very satisfied, satisfied, dissatisfied, or very dissatisfied?

(1) Very satisfied

(2) Satisfied

(3) Dissatisfied

(4) Very dissatisfied

(7) DON’T KNOW

(9) REFUSED

F9Q02 How often do you get the social and emotional support you need from your family or friends? Would you say never, rarely, sometimes, usually, or always?

(1) Never

(2) Rarely

(3) Sometimes

(4) Usually

(5) Always

(7) DON’T KNOW

(9) REFUSED

F9Q03 If the option was available, would you like to connect with other youth or adult mentors who could provide you with social, emotional, or career support?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F9Q04 Now, thinking about your health needs and all the medical and health-related services you receive, how satisfied or dissatisfied are you with those services? Would you say very satisfied, somewhat satisfied, somewhat dissatisfied or very dissatisfied?

(1) Very satisfied

(2) Somewhat satisfied

(3) Somewhat dissatisfied

(4) Very dissatisfied

(7) DON’T KNOW

(9) REFUSED

SECTION 10. DEMOGRAPHICS

F10_INTRO Now I have a few more general questions about you and your household.

Subdomain 1. Marital status and living arrangements

F10Q11 Are you currently married, separated, divorced, widowed, or never married?

(1) Married

(2) Separated

(3) Divorced

(4) Widowed

(5) Never married

(7) DON’T KNOW

(9) REFUSED

F10Q12 Are you currently living with a spouse or partner?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F10Q13 Are you currently living with your parent(s)?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

IF F10Q12 = 1 OR F10Q13 = 1, SKIP TO F10Q15.

F10Q14 Do you live alone?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F10Q15 Are you happy with your current living arrangement, or would you like to change where you live or who you live with?

(1) HAPPY WITH CURRENT ARRANGEMENT

(2) WOULD LIKE TO CHANGE

(7) DON’T KNOW

(9) REFUSED

Subdomain 2. Personal earnings and program participation

F10Q21 The next question is about your total income in the past 12 months, including income from all sources such as wages, salaries, Social Security, help from relatives and so forth. Can you tell me that amount before taxes?

___ ___ ___ ___ ___ ___ Dollars

(777777) DON’T KNOW

(999999) REFUSED

F10Q22 Compared to other people your age, do you think you have more ability, about the same ability, or less ability to pay for the things you need?

(1) More ability

(2) About the same ability

(3) Less ability

(7) DON’T KNOW

(9) REFUSED

F10Q23 At any time during the past 12 months, even for one month, did you receive any cash assistance from a state or county welfare program, such as [state TANF name] or General Assistance?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F10Q24 During the past 12 months, did you receive Food Stamps?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

F10Q25 During the past 12 months, did you receive Supplemental Security Income (also called SSI)?

(1) YES

(2) NO

(7) DON’T KNOW

(9) REFUSED

Attachment 4i:

Text of SATH recruitment or verification message

to be emailed, faxed, or mailed to the eligible adult respondent

(upon request)

Flesch Kincaid Reading Level is 8.3

FROM THE DIRECTOR

NATIONAL CENTER FOR HEALTH STATISTICS

You have requested information describing an important study by the Centers for Disease Control and Prevention (CDC). This survey is about the health of young adults, and their health care as they get older. In 2001, we spoke to someone in your household about health care. We would now like to look at changes that may have occurred in your health over the past few years by getting information directly from you.

We know little about changes that might occur in health and health care as a person ages from an adolescent to an adult. We need to learn more about people in this age range and you can help.

You can call the study’s toll-free telephone number (1-XXX-XXX-XXX) if you want to take part in the study now, or to learn more about the study’s background and what you will be asked. You can also visit this web site if you’d like to take part online or learn more: http://www.cdc.gov/nchs/about/major/slaits/sath.htm.

We need your help to make this study a success, and hope you decide to take part. Your participation is completely voluntary. It will take you about 15 minutes to answer the questions.

This study is authorized by the U.S. Public Health Service Act. It and other federal laws require us to protect your information and keep it private. The information you report will only be used for research.

Your answers may help improve the health of adults in your area and the nation, now and in the years ahead. Thank you for your assistance.

Sincerely,

Edward J. Sondik, Ph.D

Director, National Center for Health Statistics

Centers for Disease Control and Prevention

P.S. In appreciation for your time and effort, we will send you $20.

I f you prefer to contact us using a TTY, please call the AT&T Relay Service at 1-800-855-2880 and request that 1-866-999-3340 be called.

(side 2)

Survey of Adult Transition and Health

Frequently Asked Questions

How will this survey benefit others?

We need to learn more about changes that might occur in health and health care as a person ages from an adolescent to an adult. Your answers may help improve the health of adults in your area and the nation, now and in the years ahead.

Does this study apply to me?

We are interested in talking to some young adults between the ages of 19 and 23. We need your information to get understand how your health and health care have changed since you were a teen.

How will you protect my privacy?

We are bound by strict laws to maintain strict confidentiality standards. Your private information will never be associated with any results.

If you would like more information about confidentiality, the federal laws that protect your information are described in detail at www.cdc.gov/nchs/about/policy/confiden.htm.

How do I know this is a legitimate survey?

The CDC is conducting this survey with the National Opinion Research Center at the University of Chicago (NORC) as its authorized contractor. You may call NORC to verify that this is a legitimate survey. The toll-free number is 1-866-999-3340.

If you would like to learn more about your rights as a respondent, please call the office of the Research Ethics Review Board at the National Center for Health Statistics, toll-free, at 1-800-223-8118. Please leave a brief message with your name and phone number. Say that you are calling about Protocol #XXXX-XX. Your call will be returned as soon as possible.

What if I have questions about health, health care, and health care facilities?

You may call the CDC Information Contact Center toll-free at 1-800-CDC-INFO (1-800-232-4636) for more information, or to get the phone number of a doctor or clinic near you.

Attachment 4ii:

Text of a more general SATH recruitment or verification message to be emailed, faxed, or mailed to persons other than

the eligible young adult respondent

(upon request)

SATH General Endorsement Letter

(Flesch Kincaid Reading Level is 8.0)

The U.S. Department of Health and Human Services and the Centers for Disease Control and Prevention are conducting the Survey of Adult Transition and Health (SATH) and we need your help to make it a success. This study focuses the quality of health care -- a topic of interest for millions of households across the country. We are particularly interested in:

the well-being of young adults and the quality of their health insurance coverage
the type of health care and services available for people moving into adulthood
the impact of young adult health and health care on their families

Local, state, and federal officials depend on the results of this study to measure well-being and the status of healthcare as members of our population move into adulthood. This study will provide information about young adults and their families which will help to guide policy makers, advocates, and researchers. Although participation is completely voluntary and there is no penalty for not answering a question, we hope you will agree to help us. Answers to this study may help shape programs in the years ahead.

This study is authorized by the U.S. Public Health Service Act. It (and other federal laws) protect your information; we will take all possible steps to protect your privacy. The information you report will only be used for statistical research.

You can call the study’s toll-free telephone number (1-866-900-9601) if you want to take part in the study now, or to learn more about the study’s background and what you will be asked. You can also visit this web site if you’d like to participate immediately or learn more: http://www.cdc.gov/nchs/about/major/slaits/sath.htm.

Thank you very much for your help with this important research.

Sincerely,

Edward J. Sondik, Ph.D.

Director, National Center for Health Statistics

Centers for Disease Control and Prevention

If you prefer to contact us using a TTY, please call the AT&T Relay Service at

1-800-855-2880 and request that 1-888-990-9986 be called.

(side 2)

Survey of Adult Transition and Health

Frequently Asked Questions

How will this survey benefit others?

We need to learn more about changes that might occur in health and health care as a person ages from an adolescent to an adult. Results from this survey may help improve the health of adults in your area and the nation, now and in the years ahead.

How will you protect privacy?

We are bound by law to maintain strict confidentiality standards. Private information will never be associated with any results.

If you would like more information about confidentiality, the federal laws that protect your information are described in detail at www.cdc.gov/nchs/about/policy/confiden.htm.

How do I know this is a legitimate survey?

If you would like to learn more about the legal rights of survey respondents, please call the office of the Research Ethics Review Board at the National Center for Health Statistics, toll-free, at 1-800-223-8118. Please leave a brief message with your name and phone number. Say that you are calling about Protocol #XXXX-XX. Your call will be returned as soon as possible.

What if I have questions about health, health care, and health care facilities?

You may call the CDC Information Contact Center toll-free at 1-800-CDC-INFO (1-800-232-4636) for more information, or to get the phone number of a doctor or clinic near you.

Attachment 5

SATH thank you letter

DEPARTMENT OF HEALTH & HUMAN SERVICES Public Health Service

Centers for Disease Control and Prevention

National Center for Health Statistics

3311 Toledo Road

Hyattsville, Maryland 20782

Dear Respondent:

Thank you for participating in the Survey of Adult Transition and Health. The information you provided about your health and health care will be used to develop adult health programs across the country. In appreciation for the time and effort you spent answering our questions, we are enclosing $XX (20/25).

If you have any questions, you can call the study staff toll-free at 1-800-XXX-XXXX, or you can visit the study's web site at http://www.cdc.gov/nchs/about/major/slaits/sath.htm.

Thank you again for your help.

Sincerely,

Edward J. Sondik, Ph.D.

Director, National Center for Health Statistics

Centers for Disease Control and Prevention

Attachment 6

Additional backup material

NORC protocol for physical and network security
Detailed description of the locating process & database
Description of the program & process used for web data collection
Selected persons involved in developing SATH content and procedures

Attachment 6i.

NORC protocol for physical and network security

Physical Security/Facilities

NORC enforces a variety of physical security measures across all facilities, and ensure that access to all confidential data are restricted to only those employees that posses both the need and proper authorization to review such information. A keycard, key access, or human monitoring system (often times a combination of one or more may be used) restricts access to every facility.

All server rooms, wiring closets, and network ports on the Wide Area Network (WAN) (with the exception of dial-up users) are located behind locked doors within the boundaries of a secure area inside the facility with restricted access to designated persons.
All data collection and processing sites are located in restricted areas that are readily protected by either security systems, including video cameras and the aforementioned keycard systems or human monitors.
Project-specific servers protect data and data access, which is only granted to members of project teams by Information Technology (IT) staff. The IT staff also maintains locked and secured filing and data storage facilities, and each of the project-specific, password-protected portal sites.
Individually identifiable data on hard copy documents is captured electronically, separated from the questionnaire, and disposed of in accordance with project-specific instructions. When physical copies must be retained or are not in use, they are stored in locked file cabinets that are accessible only to authorized project staff.

Network Data Security

Internal network storage is provided for each project to mitigate the potential of data loss due to accidents, computer equipment malfunction, failure, or human error; and to administer access rights.

Production file servers are equipped with fault tolerant disk arrays and redundant power supplies to minimize the risk of losing valuable project data. These data are protected by surge suppression and Uninterruptible Power Supplies (UPS).
All operating system vendors are routinely monitored by a designated IT infrastructure resource monitor for security patches with all updates applied as necessary. Data transfers to removable media for purposes of client delivery or archival is performed by the IT department to control data formatting and provide assurance that the media is readable by the client. This also gives the IT department the opportunity to scan the deliverables for viruses while maintaining detailed shipping manifests and receipts of all deliveries.
All authorized network users are issued a user-id and password which must be used to sign into each of the project applications and data areas located on the network. Employees are required to change their server passwords on a regular basis.
The installation of any software package on a computer is controlled, and requires successful completion of a through software review and approval process.
Remote access into the network is performed through NORC’s firewall using a Virtual Private Network (VPN). A firewall and a packet filtering router have been set to protect each NORC Internet Access Point, and a designated NORC IT infrastructure resource is employed to monitor the Local Area Network (LAN) and WAN for signs of intrusion and other security violations. Host-based applications such as FTP and web servers are run only on servers inside the data center, and are separate from servers designated to store and collect client data.
Connectivity between all sites is protected by dedicated data circuits. Any data that are placed on any public networks is encrypted. There is also a dedicated IT resource to maintain a software package that proactively searches for security holes and recommends fixes in a timely manner.
NORC routinely engages third-parties to conduct network security audits, which includes comprehensive attempts at network penetration from undisclosed sources and a review of policies and procedures.

Application Security

All applications that manage case, response, and corporate financial data protect against unauthorized access and restrict authorized access to the minimum necessary level.

User Rights

Once logged into the application system, each user-id is assigned a ‘rights mask’ that allows the user access only to limited views of data.

Case-Level Security

Unique case identifiers are used to create a partition between response data, and data that could be used to identify an individual.

Encryption Key Management

All applications used in any environment outside of the WAN are required to use digital certificates that encrypt data using Secure Sockets Layer (SSL) technology (where applicable).

Electronic Data Transfer External to NORC

Should a project obligation require that data be electronically transmitted to or from the secure private network, encryption technology will be used.

Access Control / Authentication

All attempts to access data are logged by the hosting server for review.

Employee Exit

Human Resources (HR) and IT coordinate so that user accounts are deactivated upon employee exit. An exit interview checklist of security-related steps is utilized by both HR and IT.

Backup Procedures

All data that currently reside on the network is backed up on tape on a nightly basis. These tapes are stored in a secure, off-site location. Any information housed on these tapes is retrievable from the storage facility within 12 hours. All backups made for the purpose of disaster recovery have a retention period of one year. At the conclusion of a project, an archive is immediately created in strict accordance with contractual requirements. All archived project materials are stored off-site and easily accessible to staff.

Data Retrieval

Only a limited number of IT personnel are authorized to request the retrieval of these data tapes from the off-site location, and must follow an identification and authorization procedure.

Virus Protection

All systems are protected from computer viruses by extremely robust security features and procedures.

The technique of limiting user access to internal network data storage is designed specifically to minimize the possible impact of a virus that may breach virus protection software and procedures. Several actions are taken on a daily basis to prevent a virus from breaching the system.

Virus scans are completed routinely through the use of commercially available and automatically updated software.
Employee workstations are configured to automatically check all files that are used, including those coming from diskettes and email attachments, to ensure that they are not introducing viruses to the system.
Incoming email attachments are automatically screened on the email server for viruses, Trojan Horses, worms, and related malignant software.

Paper Records Storage and Security

Business records are kept to meet operating, historical, research, audit, and legal requirements. Records are only destroyed at the appropriate time.

Temporary Storage

Secured, general storage is referred to as the ‘cold storage area’. Any materials without respondent identifiers may be stored in cold storage to be easily accessible to project personnel. This space also serves as a staging area to access and inventory materials for permanent archiving. Paper files pertaining to project management are separated from production data and stored permanently at this location.

There are two locked “cages” available. Access is restricted to the records manager or librarian. All sensitive contracts, grants, personnel, and financial records are kept in one of these secure double locked areas.

Materials are stored in acid free cartons and are labeled with the project name and number, project supervisor name and telephone number, and projected destruction date. A list of contents for each box sent for storage must be provided, and materials will not be disposed of without contacting the appropriate personnel. Before storing hard copy survey materials, cartons are inventoried and contents are recorded. Requests for stored items are made to the records manager.

Long-Term Storage

Project directors may request that materials be stored on a more permanent basis at a remote storage area, and fulfills contractual obligations of records storage when limited access to records is required. We currently have a contract with O'Hare Record Retention Company (ORRC) in Cicero, Illinois. This facility has a sophisticated sprinkler system and a NORC-approved disaster plan in place. General access to the facility is limited to the records manager and NORC librarian. Should a site visit be required by either NORC personnel or our clients, we must provide the records manager at least 24 hours notice and submit a list of the planned visitors. ORRC requires that visitors provide proper identification and be accompanied by either the records manager or librarian. Space at the facility for the examination of materials is available for a reasonable fee.

All materials are inventoried and receive unique bar codes as identifiers before being delivered to ORRC, and a copy of the inventory is kept on the shared drive. Production materials may be sent directly to ORRC.

Attachment 6ii.

2007 SATH:

Detailed description of the locating process & database

Description of the database used in the locating process

Accurint is owned by LexisNexis (LN) which provides comprehensive and authoritative legal, public record, news, and business information and tailored applications, will be used to conduct the locating effort. LN does not collect personal financial, credit, or medical information.

The Accurint database is a widely used ‘locate-and-research’ tool and allow users to locate persons; track down telephone numbers with access to over 50,000,000 non-directory assistance records (including cellular telephone numbers); link over 132 million individuals to businesses and business contact information based on probable current and historical employment information; and includes a search tool to help find individuals when only old or fragmented data are available. This database is used by NORC to track participants in large nationally-representative longitudinal surveys such as the National Longitudinal Survey of Youth (NLSY) sponsored by the Bureau of Labor Statistics (BLS). Locators will enter the 2001 telephone number into the online Accurint system and obtain some level of information.

Description of the batch locating process

NORC will use Accurint for batch locating. For the SATH, NORC will have very limited information to start with. Using a batch submission, NORC will request a list of current household members as well as household members from 2001. This information from Accurint will be pre-loaded into the locating or Case Management System (CMS) as ‘leads’ (these systems are integrated). If a lead for each case does not turn into either a 2001 and/or 2007 contact, the case will re-enter the locating system. Incorrect contacts determined during CATI screening will also reenter the locating system. During this locating process NORC will use an unscripted approach to initially contact the household to locate the 2001 respondent. It would be impossible to write appropriate scripts that will address every possible scenario the locators will face when ‘cold calling’ the 2001 telephone numbers. When the eligible cases are located, interviewers will use a traditional scripted approach to recruit the case and give informed consent information.

The CMS has the ability to email or mail project information to respondents by case disposition codes. Eligible cases can be easily and efficiently flagged if they request information. Within the locating procedure, all ‘finalized’ cases go to the locating supervisors who assign disposition codes.

Once all telephone options to locate the case are exhausted, further searches will occur using the internet. These ‘web treatments’ will include the use of commonly available search engines such as Java Search and Google. These resources will only be used when needed, and certain components will be entered only by supervisors.

The children who in 2001 were receiving all the necessary transition services are a minority of cases but because of their importance to this study, they will receive more intensive locating protocol. They are considered “imperative” cases while all others are considered “standard” cases. Standard cases that cannot be located will be re-released to the locating staff for continued attempts to locate until the end of data collection. All locators are highly trained interviewers and are able to seamlessly segue into the 2007 interview if the proper person is located, is immediately available, and gives consent. Incorporated into the scripts and procedures is a recognition of the passage of time as well as the portability of telephone numbers in the interim period.

Training will clearly stipulate what criteria are authorized for search. Locators will also be thoroughly trained in what they are and are not allowed to tell people who may not be the intended household or respondent but answer their calls.

Only previously successful, professional, and very experienced locators and interviewers will be assigned to this project. Although we will encourage all respondents to respond via a landline phone or website, we will attempt to conduct the interview using a cellular phone if this is the only option.

The figure below summarizes the general process flow for the 2007 SATH. The shaded words in the boxes refer to either the position within the locating or interviewing process, or the relevant instrument scripts or sections.

1^st CONTACT

Call 2001 CSHCN

phone number

(CATI-based Screener)

LOCATE 2001 R

(Screener Part I and CMS locating)

OBTAIN 2001 R CONSENT

(Screener Part II—to link the data to 2001, implicit consent process)

IDENTIFY ELIGIBLE RESPONDENT

Call and identify SATH respondent

(Screener Part III)

OBTAIN CONSENT

(SATH INTRO)

INTERVIEW

(Administer SATH)

ISSUE TOKEN

(Exit SATH)

LOCATE ELIGIBLE RESPONDENT

(Screener Part III and CMS locating)

Attachment 6iii.

2007 SATH:

Description of the program & process used for web data collection

A web-based internet application has been developed to collect data in lieu of the traditional computer-assisted telephone interviewing (CATI) program that we have used consistently for other modules. It allows us to streamline instrument development and reduce the amount of preparation time because only one version of the survey will need to be constructed regardless of mode, instead of having to construct a CATI-version and a web version.

Specifically, NORC will extend the functionality of the CATI data collection program that is currently used to collect NIS/SLAITS data. This program has an option that allows it to capture data entry over the web. A web server will securely deliver content to the respondent. All questionnaire data (CATI and web) can be collected into one integrated data store for analysis.

For respondents who choose to complete the interview over the telephone, the identical web-based program will be used to collect the data; however, the interviewer will read the question over the telephone to the respondent and enter the response. The computer program guides the interviewer (or respondent) through the questionnaire (question by question and page by page), automatically routing the interviewer (or respondent) to appropriate questions based on answers to previous questions. The CATI program determines if a selected response is within an acceptable range, checks entry for consistency against other data collected during the interview, and saves the responses into a survey data file. On-line help menus are also available. This data collection technology reduces the time required for transferring, processing, and releasing data.

Should a phone or web interview terminate before completion, the system allows the interviewer or respondent to resume at the break-off point at another time. Because of multiple administration modes, the instrument was simplified as much as possible to minimize confusion (very few skip patterns, et cetera).

For interviews conducted using a telephone this system documents all call attempts and the outcome of each, their time and duration, and schedules future calls. Further, it documents if and when a message should be left on the household’s answering machine or voice mail. The system assigns calls to interviewers and dials the numbers, although cellular phone numbers will be hand-dialed.

We will format the questions and screens by incorporating the most up-to-date research^⁷ (i.e., the screen text may not appear exactly as listed below).

The screen in the secure data collection environment will display the following text:

It is your choice to participate in this research. You may choose not to answer any question you don’t wish to answer--simply leave it blank. You may also choose to stop the survey at any time, or stop now and continue it at a later time. You will be able to restart the survey where you left off.

This study is authorized by the U.S. Public Health Service Act. This and other strict laws require us to protect your privacy and use your answers only for statistical research. You can see these laws by clicking here^⁸.

The survey will take about 15 minutes. In appreciation, you will receive $20. If you have any questions about this study, please call the study's toll-free number, xxx-xxx-xxxx.

The survey contains questions about your health, health status, and health care as you get older.

Instructions will explain the navigation process, and for persons who chose to complete the survey in stages, i.e., exit the program and return to complete the survey at a more convenient time. To confirm this is the correct respondent, he/she must confirm his/her date of birth. The instrument will then display question F2Q11 (i.e., the start of section 2, health and functional status).

When the respondent completes the web survey, the screen will display the following text:

Those are all the questions. Thank you for participating in the 2007 Survey of Adult Transition and Health. In appreciation for your time, we would like to send you 20 dollars.

Please enter your name and mailing address:

NAME____________________________

STREET__________________________

CITY_____________________________

STATE ___________________________

ZIP ______________________________

We’d like to thank you on behalf of the Centers for Disease Control and Prevention for the time and effort you’ve spent answering these questions. If you would like more information about this survey, please call the study's toll-free number, xxx-xxx-xxxx. If you have questions about your rights as a study participant, you may call 1-800-223-8118, toll-free, and leave a message asking to speak to the Chairperson of the Research Ethics Review Board. Again, thank you!

Attachment 6iv.

Selected persons involved in developing SATH content and procedures

LISTED ALPHABETICALLY BY LAST NAME

Stephen Blumberg, Ph.D.

Senior Scientist

Centers for Disease Control and Prevention

Hyattsville, MD

[email protected]

Matthew Bramlett, Ph.D.

Survey Statistician

Centers for Disease Control and Prevention

Hyattsville, MD

[email protected]

Marcie Cynamon, MA

Chief, Survey Planning and Special Surveys Branch

Centers for Disease Control and Prevention

Hyattsville, MD

[email protected]

Michael Kogan, Ph.D.

Director, Office of Data and Information Management

Health Resources and Services Administration

Rockville, MD

[email protected]

Julian Luke, B.A.

Lead Computer Scientist

Centers for Disease Control and Prevention

Hyattsville, MD

[email protected]

Paul Newacheck, Dr.P.H.

Professor of Health Policy

Institute for Health Policy Studies

University of California, San Francisco

San Francisco, CA

[email protected]

Kathleen S. O’Connor, M.P.H. (CDC team leader)

Survey Statistician

Centers for Disease Control and Prevention

Hyattsville, MD

[email protected]

Bonnie Strickland, Ph.D.

Acting Director, Division of Services for Children with Special Health Care Needs

Health Resources and Services Administration

Rockville, MD

[email protected]

Peter van Dyck, MD, MPH

Associate Administrator

Health Resources and Services Administration

Rockville, MD

[email protected]

Attachment 7

Letters sent or emailed to potential web respondents

Contains the personal identification number (PIN) and password to access the instrument on the secure NORC website

ii. Reminds potential web respondents to complete the survey

[LETTERHEAD]

Dear [MAILMERGE],

The Centers for Disease Control and Prevention are conducting the Survey of Adult Transition and Health (SATH). This important survey is intended to monitor the well-being, health and healthcare needs of people in your age group.

We are asking you to take part in this important survey by using our website and using the Personal Identification Number (PIN) and password provided below. In appreciation of your time and effort, we will send you $20.

The web survey will take approximately 15 minutes to complete. Please visit this secure website to access the survey: https://cdc.gov/exampleofwebsurveyforsath.

PIN: [MAILMERGE] Password: [MAILMERGE]

If you have any trouble with the web survey or if you would rather do a phone survey, please call us toll-free at 1-866-900-9601.

The person we want to interview was born in [FILL MONTH and YEAR from 2001 CSHCN DOB]. If you are not this person, please contact us at 1-866-900-9601.

All information collected for this survey is confidential and protected by the Public Health Service Act [Secs. 306 & 2012 (a)(7)]. If you would like to learn more about your rights as a respondent, please call the office of the Research Ethics Review Board at the National Center for Health Statistics, toll-free, at 1-800-223-8118. Please leave a brief message with your name and phone number. Say that you are calling about Protocol #xxxx-xx.

Thank you very much for your help with this important research.

Sincerely,

Edward J. Sondik, Ph.D.
Director, National Center for Health Statistics
Centers for Disease Control and Prevention

LETTERHEAD

Dear [MAILMERGE],

We contacted you earlier about the Survey of Adult Transition and Health (SATH) sponsored by the Centers for Disease Control and Prevention.

We are asking you again to take part in this important survey using our website and the Personal Identification Number (PIN) and password provided for you below. To thank you for your time and effort, we will send you $20.

The web survey will take about 15 minutes to complete. Please visit this secure website to see the survey: https://cdc.gov/exampleofwebsurveyforsath. For security purposes, use this Personal Identification Number (PIN) and password to access the web survey:

PIN: [MAILMERGE] Password: [MAILMERGE]

If you have any trouble with the survey, or if you prefer to complete the interview by telephone, please call us at 1-866-900-9601.

Thank you very much for your help with this important research.

Sincerely,

Edward J. Sondik, Ph.D.
Director, National Center for Health Statistics
Centers for Disease Control and Prevention

1 McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck P, Perrin J, Shonkoff J, Strickland B. A new definition of Children With Special Health Care Needs. Pediatrics. 1998;102:137-139.

2 The American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine.

3 Mitchell S, Ciemnecki A, CyBulski K, Markesich J, Mathematica Policy Research, Inc (MPR). Removing barriers to survey participation for persons with disabilities. Paper distributed by the Rehabilitation Research and Training Center on Disability Demographics and Statistics at Cornell University. 2006.

4 Ciemnecki A, Barrett K, CyBulski K, Markesich J, Sloan M, Wright D, MPR. “Can you do this interview? Methods for determining if a proxy respondent is needed”. Oral presentation at the conference entitled: “The future of disability statistics: what we know and need to know”, organized by the Rehabilitation Research and Training Center on Disability Demographics and Statistics at Cornell University and funded by the U.S. Department of Education, National Institute on Disability and Rehabilitation Research. October 5 – 6, 2006; Arlington, VA.

5 U.S. Department of Health and Human Services. Healthy People 2010. 2^nd ed. With Understanding and Improving Health and Objectives for Improving Health. 2 vols. Washington, DC: U.S. Government Printing Office, November 2000.

6 If this link is selected, another screen will appear with the following text: “The Public Health Service Act is Volume 42 of the US Code, Section 242k. The collection of information in this survey is authorized by Section 306 of this Act. The confidentiality of your responses is assured by Section 308d of this Act and by the Confidential Information Protection and Statistical Efficiency Act”.

7 Dillman, Don A. Mail and internet surveys: The Tailored Design Method, Second Edition (includes a 2007 update with new internet, visual, and mixed-mode guide). Hoboken, New Jersey: John Wiley & Sons; 2007.

8 This link will lead to a screen that will display the following information:

Federal laws guarantee that your answers will be used only for statistical research. The Public Health Service Act is Volume 42 of the US Code, Section 242k. The collection of information in this survey is authorized by Section 306 of this Act. The confidentiality of your responses is assured by Section 308d of this Act and by the Confidential Information Protection and Statistical Efficiency Act.

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File Type	application/msword
File Title	NCHS RESEARCH ETHICS REVIEW BOARD (RESEARCH ERB)
Author	kdo7
Last Modified By	ziy6
File Modified	2007-05-21
File Created	2007-05-21