An Introduction to the Survey of Pathways to Diagnosis and Services, 2011

An Introduction to the Survey of Pathways toDiagnosis and Services, 2011

Rosa M. Avila, MSPH

Centers for Disease Control and PreventionNational Center for Health Statistics

National Conference on Health Statistics

Washington, DCAugust 7, 2012

Purpose

Describe the design and content of the 2011 Survey of Pathways to Diagnosis and Services.

Present key findings about the health care and diagnostic history of children with developmental conditions.

Describe how researchers can access the data files to conduct their own analyses.

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Survey of Pathways toDiagnosis and Services, 2011

Sponsor: National Institute of Mental Health, with American Recovery and Reinvestment Act funds.

Conducted by: CDC’s National Center for Health Statistics.

Survey sample: The 2009-2010 National Survey of Children with Special Health Care Needs (CSHCN), a nationwide random-digit-dial telephone survey.– CSHCN: increased risk for chronic conditions and need health &

related services beyond that required by children generally.

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Survey of Pathways toDiagnosis and Services, 2011

Eligibility: CSHCN aged 6-17 years identified as having ever been diagnosed with Autism Spectrum Disorder (ASD), Intellectual Disability, and/or Developmental Delay.

Respondent: Parent or guardian knowledgeable about the health of the child.

Mode: Telephone survey followed by a mailed Self-Administered Questionnaire (SAQ).

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Survey Design

Telephone re-contact, screen for eligibility

N = 6,090

Eligible: Incomplete

Phone Interview

Eligible: Completed

Phone Interview

Completed 1st Mailed SAQ

Incomplete 1st Mailed SAQ

Completed SAQ via Phone

prompt

Completed SAQ via 2nd Mail-out

Did not complete SAQ

Not Eligible or Unable to

Locate

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Survey Design



Phone Interview

Eligible: Completed

Phone InterviewN = 4,032




prompt




Locate

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Survey Design



Phone Interview

Eligible: Completed

Phone Interview





prompt



Locate

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N = 2,988

Sample Sizes

4,032 completed telephone interviews.– 1,420 CSHCN currently have ASD.– 657 CSHCN currently have intellectual disability (INT)

but have no ASD.– 1,441 CSHCN currently have developmental delay

only (DEV).

Based on Parent/Guardian Report

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Content

Telephone Questionnaire - Emergence of symptoms; diagnostic experience; current behavioral, diagnostic, and functional status; clinical treatments and educational services used; and other parental concerns or perspectives.

SAQ - Includes the Children’s Social Behavior Questionnaire, and the Strengths and Difficulties Questionnaire, and questions on the CSHCN’s positive skills.

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What can you do with Pathways Data?

Analysis plan for the following examples:– Compare CSHCN with ASD to INT and DEV.– Data were weighted to permit nationally

representative estimates.

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Socioeconomic & Demographic Characteristics

Selected CharacteristicsPercent

ASD INT DEV

SexMale 82.1 51.4* 66.9*Female 17.9 48.6* 33.1*

Age in Years6 to 11 54.7 42.0* 50.312 to 17 45.3 58.0* 49.7

Race & EthnicityHispanic 13.0 11.0 14.5Non-Hispanic Black 10.7 18.7* 18.4*Non-Hispanic White 66.2 57.9 60.4Non-Hispanic Other 10.1 12.4 6.8

* Estimates are significantly different compared with ASD11

Person First Concerned with Child’s Development

DEV

INT

ASD

0% 10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

2.3*

2.7

4.7

65.6

47.5*

71.5

7.9

2.8

6.6

10.7

10.6

13.0

13.5*

36.4*

4.2

Dr or health care providerMother or fatherTeacher or school councelor/nurseOtherNeither (concern or condition existed before/at birth)

* Estimates are significantly different compared with ASD

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Type of Doctor/Health Care Provider Who First Diagnosed Condition

0%20%40%60%80%

37.847.2

8.7 6.3

49.9*35.0*

9.8 5.3

57.5*

24.8*15.3*

2.4*

ASD INT DEV


Selected Health Care Services Currently Used

0%20%40%60%80% 70.6 71.3

55.939.6

75.2

45.2*

67.9*

19.4*

49.8*37.3*

47.2*

22.9*

ASD INT DEV


CSHCN Who Received Early Intervention Services Before Age 3

ASD INT DEV0%

20%

40%

60%

80%

44.5

61.2*

29.7*

* Estimates are significantly different compared with ASD

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Adequacy of Health Insurance Coverage for Needed Health Services

DEV

INT

ASD

0% 20% 40% 60% 80% 100%

21.5*

33.2

33.0

74.0*

66.2

66.1

4.5

2.6

2.8

Insurance cov-ered all needed services

Insurance did not cover all needed services

Uninsured


CSHCN Who Ever Wandered Off or Became Lost in Past Year

ASD INT DEV0%

10%

20%

30%

40%33.9

23.7 22.3*


Parental Perception: Parent/Guardian Definitely Agree

0%10%20%30%40%

11.117.8

28.4

7.313.0

26.2

13.3 12.6*

30.9

ASD INT DEV


CSHCN’s Emotion, Concentration or Behavioral Difficulties Burden Family

DEV

INT

ASD

0% 20% 40% 60% 80% 100%

49.6*

43.9

37.9

40.9*

42.8*

60.3

9.5*

13.3*

1.8

Not at all/ a little

A lot/ a great deal

Has no difficulties


Analysis Using Pathways Data

The Survey of Pathways to Diagnosis and Services provides the largest nationally representative survey data on the health care and diagnostic history of CSHCN identified as having (or having had) ASD, INT, and/or DEV.

Data files and supporting materials are publicly available for anyone to use.

Pathways data can be linked to the 2009-2010 NS-CSHCN.

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How to Access Pathways Data

The Pathways home page is located at: www.cdc.gov/nchs/slaits/spds.htm The home page includes:

– Data files and methodology reports– Questionnaires and codebooks– Sample SAS programs – Sampling weights for nationally representative estimates

Data not publically available can be accessed through the NCHS Research Data Center: www.cdc.gov/rdc/

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Now Available…

Data Brief titled, “Diagnostic History and Treatment of School-Aged Children with Autism Spectrum Disorder and Special Health Care Needs” on May 24th, 2012.

www.cdc.gov/nchs/products/databriefs.htm

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Contact Info

[email protected]

Visit us at: www.cdc.gov/nchs/slaits.htm

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Documents

An Introduction to the Survey of Pathways to Diagnosis and Services, 2011