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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, DC
August 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
Telephone re-contact, screen for eligibility
Eligible: Incomplete
Phone Interview
Eligible: Completed
Phone InterviewN = 4,032
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
Telephone re-contact, screen for eligibility
Eligible: Incomplete
Phone Interview
Eligible: Completed
Phone Interview
Completed 1st Mailed SAQ
Incomplete 1st Mailed SAQ
Completed SAQ via 2nd Mail-out
Completed SAQ via Phone
prompt
Did not complete SAQ
Not Eligible or Unable to
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
Sex
Male 82.1 51.4* 66.9*
Female 17.9 48.6* 33.1*
Age in Years
6 to 11 54.7 42.0* 50.3
12 to 17 45.3 58.0* 49.7
Race & Ethnicity
Hispanic 13.0 11.0 14.5
Non-Hispanic Black 10.7 18.7* 18.4*
Non-Hispanic White 66.2 57.9 60.4
Non-Hispanic Other 10.1 12.4 6.8
* Estimates are significantly different compared with ASD
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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
* Estimates are significantly different compared with ASD
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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
* Estimates are significantly different compared with ASD
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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
* Estimates are significantly different compared with ASD
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CSHCN Who Ever Wandered Off or Became Lost in Past Year
ASD INT DEV0%
10%
20%
30%
40%33.9
23.7 22.3*
* Estimates are significantly different compared with ASD
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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
* Estimates are significantly different compared with ASD
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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
* Estimates are significantly different compared with ASD
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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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