Letter to Dr. Schwab

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

February 10, 2015

Margo Schwab, Ph.D.

Office of Management and Budget

725 17th Street, N.W.

Washington, DC 20503

Dear Dr. Schwab:

The staff of the NCHS Questionnaire Design Research Laboratory (QDRL) (OMB No. 0920-0222, exp. 06/30/2015) plans to continue to evaluate questions on child disability (focusing on teens) for the Washington Group on Disability Statistics (WG) with the participation of UNICEF and demographic questions including age, gender, race/ethnicity, education and sexual identity. The questions on child disability were initially tested as part of the “Cognitive testing of child disability, health insurance, Federal Statistical System, and second hand smoke questions” protocol, approved on August 27, 2012. A second round of testing was conducted under protocol “Adult and Child Disability” protocol, approved on February 5, 2014.

We propose to start recruiting for volunteer participants as soon as we receive clearance and to start testing as soon as possible after that.

Background Information about Cognitive Testing of Questionnaires

The methodological design of this proposed study is consistent with the design of typical cognitive testing research. As you know, the purpose of cognitive testing is to obtain information about the processes people use to answer survey questions as well as to identify any potential problems in the questions. The analysis will be qualitative.

Proposed project: Cognitive testing of Teen Disability and Demographic Questions.

The teen disability questions and the demographic questions we are evaluating are included as Attachments 1a&b. The questions on child disability were previously thoroughly tested using parent-respondents. Further testing of these questions on parent-teen dyads is an extension of the previous testing. Similarly, the demographic questions have been previously tested on adult respondents but not on teens. This project will potentially bolster the validity of these questions by examining their performance within a population with different age range than they were previously tested on. This is important because these demographic questions, as yet untested on this population, are already being administered to teens on national surveys.

Demographic questions, specifically those pertaining to sexual identity, have been thoroughly tested by the QDRL when developing a measure for the National Health Interview Survey (NHIS). These studies, however, only included adult respondents. Since various teen surveys (e.g. the Youth Risk Behavior Surveillance System (YRBSS)) include a sexual identity question, it is necessary to investigate how such a question performs among teens. The YRBSS does not use the question developed for the NHIS, and analysis of YRBSS data indicates response error among the less educated and ethnic minorities. Therefore, the YRBSS question will first be examined, and then the NHIS question will be evaluated to determine which question (if either) performs better among teens.

We propose to recruit 80 respondents (40 parent/teen dyads comprised of 40 teen respondents ages 12-17 and 40 respondents ages >18- the parents) in order to test the child disability questionnaire and the demographic questions. Teens (ages 12-14) will be asked questions about their own functioning (interviewer administered), and questions on age, gender, race/ethnicity, and education. Teens (ages 15-17) will be asked questions about their own functioning (interviewer administered), and questions on age, gender, race/ethnicity, education, and sexual identity (self-administered) (Attachment 1a). Parents/guardians (ages >18) will be asked a related set of questions about their teens’ functioning (Attachment 1b). The recruitment process will identify teens who may have difficulty with seeing, hearing, walking, learning, and/or behavior. In addition, we will recruit teens without these specified criteria. . The testing procedure conforms to the cognitive interviewing techniques that have been described in QDRL’s generic OMB clearance package (No. 0920-0222, exp. 06/30/2015).

The newspaper advertisements/flyers used to recruit respondents are shown in Attachments 2a-c. The telephone screener used to determine eligibility of individuals responding to the newspaper advertisements/flyers is shown in Attachment 3. Recruitment advertisements are targeted at either teens or parents. Therefore, initial telephone contact may be made with either the teen or the parent. Both respondents will be screened prior to inclusion in the study. It is anticipated that as many as 120 individuals may need to be screened in order to recruit 80 participants. Note that wording of the template has been approved and is contained within our umbrella package. Only project specific information has been added to the document. Within these constraints, we plan to recruit participants with some demographic variety (particularly in terms of gender, education, race/ethnicity, and income).

Interviews will be conducted by QDRL staff members with English speaking respondents. All interviews conducted in the Questionnaire Design Research Laboratory with adults will be video and audio recorded to allow researchers to review the behaviors and body language of the respondents. Interviews conducted with teens 12-17 will only be audio recorded. Interviews conducted offsite will only be audio recorded. These recordings will allow researchers to insure the quality of their interview notes.

After respondents have been briefed on the purpose of the study and the procedures that QDRL routinely takes to protect human subjects, respondents will be asked to read and sign an Informed Consent/Informed Assent document (Attachments 4a&b). Only project specific information has been added to the document. Parent/Guardians will also be asked to fill in their demographic characteristics on the Respondent Data Collection Sheet. This document is contained in our umbrella package. The burden for completion of this form is captured in the interview.

The interviewer will then ask the respondent to confirm that he/she understands the information in the Informed Consent/Informed Assent, and then state that we would like to record the interview. The recorder will be turned on once it is clear that the procedures are understood and agreed upon. The interviewer will then orient the respondent (parent/guardian/child) to the cognitive interview with the following introduction:

Lauren may have told you that we will be working on some questions that will eventually be added to national surveys. Before that happens, we like to test them out on a variety of different people. The questions we are testing today are about your child’s/your physical and mental health and questions on age, gender, race/ethnicity and education. [For child 15-17: and questions on age, gender, race/ethnicity, education and sexual identity] We are interested in your answers, but also in how you go about making them. I may also ask you questions about the questions—whether they make sense, what you think about when you hear certain words, and so on.

I will read each question to you, and I’d like you to answer as best you can. Please try to tell me what you are thinking as you figure out how to answer. Also, please tell me if:

there are words you don’t understand,

the question doesn’t make sense to you,

you could interpret it more than one way,

it seems out of order,

or if the answer you are looking for is not provided.

The more you can tell us, the more useful it will be to us as we try to develop better questions. Okay? Do you have any questions before we start? If yes, answer questions. If not, let’s get started.

After the interview, respondents will be given the thank-you letter (document contained in umbrella package) signed by Charles J. Rothwell, Director of NCHS, a copy of the informed consent/informed assent document, and $40 each.

After the interview, parents/guardians will be asked to read the Special Consent for Expanded Use of Video and Audio Recordings (Attachment 5). There will be no coercion and the respondents will be told that they can call and reverse the decision at any time if they change their minds. If respondents do sign the special consent form they will be given a copy of that as well. Teen respondents will not be asked for Special Consent.

Extreme care will be taken with all recordings and paperwork from the interviews conducted off-site. Recordings and identifying paperwork will be stored in a secured travel case until returned to NCHS, at which point they will be transferred to the usual secured locked storage cabinets.

We propose paying participants $40, which is our standard payment. In total, for this project, the maximum respondent burden will be 100 hours. A burden table for this project is shown below:

Form Name	Number of Participants	Number of Responses/ Participant	Average hours per response	Response Burden (in hours)
Screener	120	1	10/60	20
Questionnaire	80	1	60/60	80

Attachments (4)

cc:

V. Buie

T. Richardson

DHHS RCO

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