An Introduction to the Survey of Pathways to

An Introduction to the Survey of Pathways to Diagnosis and Services, 2011 Rosa M. Avila, MSPH Centers for Disease Control and Prevention National Center for Health Statistics National Conference on Health Statistics Washington, DC August 7, 2012

Purpose l Describe the design and content of the 2011 Survey of Pathways to Diagnosis and Services. l Present key findings about the health care and diagnostic history of children with developmental conditions. l Describe how researchers can access the data files to conduct their own analyses. 2

Survey of Pathways to Diagnosis and Services, 2011 l Sponsor: National Institute of Mental Health, with American Recovery and Reinvestment Act funds. l Conducted by: CDC’s National Center for Health Statistics. l 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. 3

Survey of Pathways to Diagnosis and Services, 2011 l Eligibility: CSHCN aged 6 -17 years identified as having ever been diagnosed with Autism Spectrum Disorder (ASD), Intellectual Disability, and/or Developmental Delay. l Respondent: Parent or guardian knowledgeable about the health of the child. l Mode: Telephone survey followed by a mailed Self. Administered Questionnaire (SAQ). 4

Survey Design Eligible: Incomplete Phone Interview Telephone re-contact, screen for eligibility Eligible: Completed Phone Interview N = 6, 090 Not Eligible or Unable to Locate 5 Completed 1 st Mailed SAQ Completed SAQ via Phone prompt Incomplete 1 st Mailed SAQ Completed SAQ via 2 nd Mail-out Did not complete SAQ

Survey Design Eligible: Incomplete Phone Interview Telephone re-contact, screen for eligibility Eligible: Completed Phone Interview N = 4, 032 Not Eligible or Unable to Locate 6 Completed 1 st Mailed SAQ Completed SAQ via Phone prompt Incomplete 1 st Mailed SAQ Completed SAQ via 2 nd Mail-out Did not complete SAQ

Survey Design Eligible: Incomplete Phone Interview Telephone re-contact, screen for eligibility Eligible: Completed Phone Interview Not Eligible or Unable to Locate 7 N = 2, 988 Completed 1 st Mailed SAQ Incomplete 1 st Mailed SAQ Completed SAQ via 2 nd Mail-out Completed SAQ via Phone prompt Did not complete SAQ

Sample Sizes l 4, 032 completed telephone interviews. – – – l 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 8

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. 9

What can you do with Pathways Data? Analysis plan for the following examples: 10 – Compare CSHCN with ASD to INT and DEV. – Data were weighted to permit nationally representative estimates.

Socioeconomic & Demographic Characteristics Selected Characteristics Percent ASD INT DEV Male 82. 1 51. 4* 66. 9* Female 17. 9 48. 6* 33. 1* 6 to 11 54. 7 42. 0* 50. 3 12 to 17 45. 3 58. 0* 49. 7 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 Sex Age in Years Race & Ethnicity * Estimates are significantly different compared with ASD 11

Person First Concerned with Child’s Development ASD 71, 5 4, 7 6, 613, 0 4, 2 Dr or health care provider Mother or father INT 2, 7 47. 5* 2, 810, 6 36. 4* Teacher or school councelor/nurse Other DEV 65, 6 2. 3* 0% 20% 40% 7, 9 10, 713. 5* 60% Neither (concern or condition existed before/at birth) 80% 100% 120% * Estimates are significantly different compared with ASD 12

Type of Doctor/Health Care Provider Who First Diagnosed Condition ASD INT DEV 80% 57. 5* 60% 49. 9* 37. 8 47. 2 35. 0* 24. 8* 20% 8. 7 9. 8 15. 3* 6. 3 5. 3 2. 4* 0% Medical Dr/Provider Mental Health Professional School/community Multidisciplinary health care team professional * Estimates are significantly different compared with ASD 13

Selected Health Care Services Currently Used ASD 80% 60% 70. 6 75. 2 INT DEV 71. 3 49. 8* 40% 67. 9* 55. 9 47. 2* 45. 2* 37. 3* 39. 6 19. 4* 20% 22. 9* 0% Speech or Language Therapy Social Skills Training Occupational Therapy * Estimates are significantly different compared with ASD Behavior Intervention/ Modification 14

CSHCN Who Received Early Intervention Services Before Age 3 80% 61. 2* 60% 44. 5 40% 29. 7* 20% 0% ASD INT * Estimates are significantly different compared with ASD DEV 15

Adequacy of Health Insurance Coverage for Needed Health Services ASD 33, 0 66, 1 2, 8 INT 33, 2 66, 2 2, 6 DEV 21. 5* 0% 20% 74. 0* 40% 60% Insurance covered all needed services Insurance did not cover all needed services Uninsured 4, 5 80% * Estimates are significantly different compared with ASD 100% 16

CSHCN Who Ever Wandered Off or Became Lost in Past Year 40% 33. 9 30% 23. 7 22. 3* INT DEV 20% 10% 0% ASD * Estimates are significantly different compared with ASD 17

Parental Perception: Parent/Guardian Definitely Agree ASD INT DEV 40% 28. 4 30% 26. 2 17. 8 20% 13. 3 11. 1 10% 30. 9 13. 0 12. 6* 7. 3 0% I have the power to Condition is a mystery When I think about change child's to me child's condition I get condition upset * Estimates are significantly different compared with ASD 18

CSHCN’s Emotion, Concentration or Behavioral Difficulties Burden Family ASD 37, 9 60, 3 1, 8 Not at all/ a little INT 43, 9 42. 8* 13. 3* A lot/ a great deal Has no difficulties DEV 49. 6* 0% 20% 40. 9* 40% 60% 80% * Estimates are significantly different compared with ASD 9. 5* 100% 19

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. l l Data files and supporting materials are publicly available for anyone to use. Pathways data can be linked to the 2009 -2010 NSCSHCN. 20

How to Access Pathways Data The Pathways home page is located at: www. cdc. gov/nchs/slaits/spds. htm l 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/ 21

Now Available… Data Brief titled, “Diagnostic History and Treatment of School-Aged Children with Autism Spectrum Disorder and Special Health Care Needs” on May 24 th, 2012. www. cdc. gov/nchs/products/databriefs. htm 22 22

Contact Info SLAITS@CDC. GOV Visit us at: www. cdc. gov/nchs/slaits. htm 23