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Guide to Topics & Questions Asked

National Survey of Children with Special Health Care Needs 2005/06

NOTE: Telephones are dialed at random to identify households with one or more children under 18 years old. The interviewer asks to speak to the parent or guardian who knows the most about the child's or children's health and health care. If he or she is not available, multiple call back attempts are made to reach them. All children in the household are screened for special health care needs. If more than one child qualifies for the survey based on special health care needs status, one is chose at random. If the parent or guardian's language is not English, arrangements are made to call back later to administer the survey in another language.

Click on the question numbers in blue text below to view the full text of the question and its response options.

SECTION 1: Initial Household Screening for Special Health Care Needs

  • How many children between the ages of 12 months and 3 years old are living or staying in your household? (S_NUMB)
  • How many people less than 18 years old live in this household? (S_UNDR18)

SECTION 2: Initial Household Screening for Special Health Care Needs Information

The parent or guardian who is the most familiar with the health and health care situations of the children in the household answers the following questions for each child in the household under 18 years old:

  • Child's age (C2q01B)
  • Child's sex (C2q03)
  • CSHCN Screener questions:
    • Does child currently need or use medicine prescribed by a doctor, other than vitamins? (CSHCN1)
      • Is [his/her] need for prescription medicine because of ANY medical, behavioral or other health condition? (CSHCN1_A)
      • Is this a condition that has lasted or is expected to last 12 months or longer? (CSHCN1_B)
    • Does child need or use more medical care, mental health or educational services than is usual for most children of the same age? (CSHCN2)
      • Is [his/her] need for medical care, mental health, or educational services because of ANY medical, behavioral or other health condition? (CSHCN2_A)
      • Is this a condition that has lasted or is expected to last 12 months or longer? (CSHCN2_B)
    • Is child limited or prevented in any way in [his/her] ability to do the things most children of the same age can do? (CSHCN3)
      • Is [his/her]'s limitation in abilities because of ANY medical, behavioral or other health condition? (CSHCN3_A)
      • Is this a condition that has lasted or is expected to last 12 months or longer? (CSHCN3_B)
    • Does child need or get special therapy such as physical, occupational, or speech therapy? (CSHCN4)
      • Is [his/her] need for special therapy because of ANY medical, behavioral or other health condition? (CSHCN4_A)
      • Is this a condition that has lasted or is expected to last 12 months or longer? (CSHCN4_B)
    • Does child have any kind of emotional, developmental or behavioral problem for which he/she needs treatment or counseling? (CSHCN5)
      • Has [his/her]'s emotional, developmental. or behavioral problem lasted or expected to last for 12 months or longer? (CSHCN5_A)

Respondent Information

  • What is the highest level of school that anyone in the household has completed or the highest degree anyone in this household has received? (CW10q04)
  • What is the primary language spoken in your home? (C2q05)
  • Respondent's relationship to the [CHILD'S NAME] (C2q04)

SECTION 3: Child Health and Functional Status

  • How often does [CHILD'S NAME]'s health condition affect [his/her] ability to do age-appropriate things? (C3Q02)
    • If so, how much limitation does child experience? (C3Q03)
  • Do [CHILD'S NAME]'s health care needs change all the time, change once in awhile or are usually stable? (C3Q11)
  • Without glasses or contact lenses, would you say (he/she) experiences any difficulty seeing?(S3Q01)
    • Does [CHILD'S NAME] wear glasses or contact lenses? (S3Q01A)
    • Does [CHILD'S NAME] have any difficulty seeing even when wearing glasses or contact lenses? (S3Q01B)
  • Without hearing aids, would you say (he/she) experiences any difficulty hearing? (S3Q02)
    • Does [CHILD'S NAME] use a hearing aid? (S3Q02A)
    • Does [CHILD'S NAME] have any difficulty hearing even when using a hearing aid(S3Q02B)
  • Would you say (he/she) experiences any difficulty with any of the following:
    • Breathing or other respiratory problems, such as wheezing or shortness of breath? (S3Q03)
    • Swallowing, digesting food, or metabolism? (S3Q04)
    • Blood circulation? (S3Q05)
    • Repeated or chronic physical pain, including headaches? (S3Q06)
  • Compared to other children [his/her] age, would you say he/she experiences any difficulty with any of the following:
    • Taking care of [himself/herself]? (S3Q07)
    • Coordination or moving around? (S3Q08)
    • Using [his/her] hands? (S3Q09)
    • Learning, understanding, or paying attention? (S3Q10)
    • Speaking, communicating, or being understood? (S3Q11)
    • With feeling anxious or depressed? (S3Q12)
    • With behavior problems? (S3Q13)
    • Making and keeping friends? (S3Q14)
  • Overall, how would you rate the severity of the difficulties caused by [CHILD'S NAME]'s health problems? (C3Q10)
  • You reported that [CHILD'S NAME] does not experience any difficulty in any of the areas just mentioned. In your opinion, would you say this is because [CHILD'S NAME]'s health problems are being treated and are under control? (S3Q15)
  • Why is it that [CHILD'S NAME]'s health problems do not currently cause (him/her) difficulty? (S3Q15A)
  • To the best of your knowledge, does [CHILD'S NAME] currently have any of the following:
    • Asthma?(S3Q16)
    • Attention Deficit Disorder (ADD) or Attention Deficit Hyperactive Disorder (ADHD)?(S3Q17)
    • Autism or Autism Spectrum Disorder (ASD)? (S3Q18)
    • Down Syndrome?(S3Q19)
    • Mental retardation or developmental delay? (S3Q20)
    • Depression, anxiety, an eating disorder, or other emotional problems? (S3Q21)
    • Diabetes? (S3Q22)
      • Does [CHILD'S NAME] use insulin? (S3Q22A)
    • Heart problems? (S3Q23)
    • Blood problems? (S3Q25)
    • Cystic Fibrosis? (S3Q26)
    • Cerebral Palsy? (S3Q27)
    • Muscular Dystrophy? (S3Q28)
    • Epilepsy or other seizure disorder? (S3Q29)
    • Migraine or frequent headaches? (S3Q30)
    • Arthritis or other joint problems? (S3Q32)
    • Allergies? (S3Q31)
  • Number of school days missed during the past 12 months because of illness or injury? (C3Q14 - ages 6-17 )
  • During the past 12 months, how many times did [CHILD'S NAME] visit a hospital emergency room? (C6Q00)
  • During the past 12 months, how many times did [CHILD'S NAME] visit a doctor or other health care provider? Do not include times when [CHILD'S NAME] was hospitalized overnight. (C6Q01)

SECTION 4: Access to Care - Use of Services and Unmet Needs

SECTION 5: Care Coordination

  • During the past 12 months, did [CHILD'S NAME] need a referral to see any doctors or receive any services? (C5Q11)
    • Was getting referrals a big problem, a small problem, or not a problem? (C4Q07)
  • Does anyone help you arrange or coordinate [CHILD'S NAME]'s care among the different doctors or services that he/she uses? (C5Q12)
    • Does a doctor or someone in a doctor's office provide this help arranging or coordinating [CHILD'S NAME]'s care? (C5Q13)
    • Who does provide help arranging or coordinating [CHILD'S NAME]'s care? (C5Q14 INDEX)
  • Is there anyone else who helps arrange or coordinate [CHILD'S NAME]'s care? (C5Q15)
  • During the past 12 months, have you felt that you could have used extra help arranging or coordinating [CHILD'S NAME]'s care among these different health care providers or services? (C5Q17)
    • How often did you get as much help as you wanted with arranging or coordinating [CHILD'S NAME]'s care? (C5Q09)
  • Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with the communication among [CHILD'S NAME]'s doctors and other health care providers? (C5Q10)
  • Do [CHILD'S NAME]'s doctors or other health care providers need to communicate with [his/her] school, early intervention program, child care providers, vocational education or rehabilitation program? (C5Q05)
    • Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with that communication? (C5Q06)

SECTION 6A: Family Centered Care

  • How often did [CHILD'S NAME]'s doctors and other health care providers spend enough time with him/her? (C6Q02)
  • How often did [CHILD'S NAME]'s doctors and other health care providers listen carefully to you? (C6Q03)
  • How often were [CHILD'S NAME]'s doctors and other health care providers sensitive to your family's values and customs? (C6Q04)
  • How often did you get the specific information you needed from [CHILD'S NAME]'s doctors and other health care providers? (C6Q05)
  • How often did [CHILD'S NAME]'s doctors and other health care providers help you feel like a partner in [his/her] care? (C6Q06)
  • During the past 12 months, did you [or CHILD'S NAME] needed an interpreter to help speak with [his/her] doctors or other health care providers? (S5Q13)
    • When you [or CHILD'S NAME] needed an interpreter, how often were you able to get someone other than a family member to help you speak with [his/her] doctors or other health care providers? (S5Q13A)

SECTION 6B: Transition Issues

  • Do any of [CHILD'S NAME]'s doctors or other health care providers treat only children? (C6Q07 - ages 12-17 only)
    • Have they talked with you about having [CHILD'S NAME] eventually see doctors or other health care providers who treat adults? (C6Q0A_B)
    • Would a discussion about doctors who treat adults have been helpful to you? (C6Q0A_C)
  • Have [CHILD'S NAME]'s doctors or other health care providers talked with you or [CHILD'S NAME] about [his/her] health care needs as he/she becomes an adult? (C6Q0A - ages 12-17 only)
    • Would a discussion about [CHILD'S NAME]'s health care needs have been helpful? (C6Q0A_D)
  • 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 as [CHILD'S NAME] becomes an adult? (C6Q0A_E - ages 12-17 only)
    • Would a discussion about health insurance have been helpful to you? (C6Q0A_F)
  • How often do [CHILD'S NAME]'s doctors or other health care providers encourage him/her to take responsibility for [his/her] health care needs? (C6Q08 - children ages 5-17 only)

SECTION 6C: Ease of Service

  • Thinking about [CHILD'S NAME]'s health needs and all the services that he/she needs, have you had any difficulties trying to use these services during the past 12 months? (C6Q0D)
    • Did you have any difficulties because of the following reasons (C6Q0E INDEX)
  • Thinking about [CHILD'S NAME]'s health needs and the services he/she receives, how satisfied or dissatisfied are you with those services? (C6Q0C)

SECTION 7: Health Insurance

This section asks an extensive series of questions about [CHILD'S NAME]'s health insurance status and source(s) of coverage. Responses to these questions are considered confidential, but are used to determine if a child is insured at the time of the survey. The following variables are released in the public use dataset.

  • How many CSHCN were without insurance at the time of the survey?
  • How many CSHCN were without insurance at some point in the past year?
  • How many CSHCN have private or public insurance?

SECTION 8: Adequacy of Health Care Coverage

  • Does [CHILD'S NAME]'s health insurance offer benefits or cover services that meet [his/her] needs? (C8Q01_A)
  • Are the costs not covered by [CHILD'S NAME]'s health insurance reasonable? (C8Q01_B)
  • Does [CHILD'S NAME] health insurance company allow him/her to see the health care providers he/she needs? (C8Q01_C)

SECTION 9: Impact on the Family

  • During the past 12 months, would you say that the family paid more than $500, $250-%500, less than $250 or nothing for [CHILD'S NAME]'s medical care? (C9Q01)
    • Would you say that the family paid more than $5,000, $1,000 to $5,000, or less than $1,000 for [CHILD'S NAME]'s medical care? (C9Q01_A)
  • Do you or other family members provide health care at home for [CHILD'S NAME]? (C9Q02)
  • How many hours a week do you or other family members spend arranging or coordinating [CHILD'S NAME]'s care? (C9Q04)
  • Have [CHILD'S NAME]'s health condition(s) caused financial problems for your family? (C9Q05)
  • Have you or other family members stopped working because of [CHILD'S NAME]'s health condition(s)? (C9Q10)
  • Have you or other family members cut down on the hours you work because of [CHILD'S NAME]'s health? (C9Q06)
  • Have you needed additional income to cover [CHILD'S NAME]'s medical expenses? (C9Q07)

SECTION 10: Family Composition

NOTE: Responses to the other questions in this section are considered confidential, and are used to create a single derived variable on family composition available with the public use data set.

  • Please tell me how many people live in this household, including all children and anyone who normally lives here even if they are not here now, like someone who is away traveling or in the hospital. (C11Q01_A)

SECTION 11: Household Income

  • Does [CHILD'S NAME] receive Supplemental Security Income (SSI)? (C11Q12)
  • At any time during the last 12 months, did anyone in the household receive any cash assistance from a state or county welfare program? (C11Q01)

SECTION 11A: Telephone Line and Household Information

The questions in this section ask about zip code and number of telephone lines in the household. This information is used to mathematically weight the sample so it more accurately represents all families, including those without telephones.