1. SOCIAL, EMOTIONAL, AND BEHAVIORAL FUNCTIONING OF CHILDREN EXPOSED TO MEDICAL TRAUMA: A THEORY OF HARDINESS Robert B. Noll, Ph.D. Director, Child Development Unit Medical Director for Behavioral Health

2. ACKNOWLEDGEMENTS Vannatta, Gerhardt, Sheeber, Zeller, Reiter-Purtill Staff--UC Friendship Study Dahl, Szigethy, Rofey, Finder National Institute of Health American Cancer Society National Arthritis Foundation

3. RESEARCH RATIONALE Improve clinical care Theory – Stress and trauma

4. STRESSFUL/TRAUMATIC LIFE EVENTS Random versus non-random Uncontrollable versus controllable GREATEST HARM Uncontrollable, randomly occurring stressful/traumatic life events

5. IMPACT ON CHILDREN Social functioning Emotional well being Externalizing behavior (acting out)

6. IMPACT ON PARENTS AND FAMILIES Parental mental health Child-rearing Family functioning –Time management –Siblings Economic issues

7. STRESS / TRAUMA MODEL Evolutionary Behavioral Health Illness Parameters Trauma to the CNS Family Parameters Extreme Family Deprivation Child Dysfunction Childhood Chronic Illness

8. METHODOLOGY PROBLEMS Comparison groups Sampling Contextual factors Source of information Lack of longitudinal data

9. SELECTION CRITERIA FOR COMPARISONS Classmate at school Race Gender Closest date of birth

10. FAMILY DEMOGRAPHIC VARIABLES Family social prestige Family income Age of parents Number of children living at home Education of parents Marital status

11. CHILD DEMOGRAPHIC VARIABLES Age Gender Race IQ

12. PRIMARY DIMENSIONS OF SOCIAL FUNCTIONING What is the child like? Is the child liked?

13. REVISED CLASS PLAY What is the child like? 1.Popular/Leader 2.Prosocial 3.Aggressive/Disruptive 4.Sensitive/Isolated

14. ILLNESS ROLES Someone who is sick a lot Someone who misses a lot of school Someone who is tired a lot

15. SOCIAL ACCEPTANCE Is the child liked? Three Best Friends –Number of nominations –Reciprocated friendships Like Rating Scale –Overall social acceptance

16. CHILDREN’S EMOTIONAL WELL-BEING CHILDREN’S REPORT (objective and projective) –depression/anxiety –loneliness –self concept PARENT’S REPORT –depression/anxiety

17. EVALUATION OF CHILD FUNCTIONING PERSPECTIVE OF MEDICAL CHART PERSPECTIVE OF OTHERS –teachers –peers –parents (mothers and fathers) PERSPECTIVE OF SELF –questionnaires –projectives

18. DATA ANALYSIS Comparison of group means Disease severity moderatorsAge and gender as moderators

19. GENERAL SELECTION CRITERIA 8-15 years of age No full time special education Treated at CCHMC

20. CHILDREN WITH CHRONIC ILLNESS Neurofibromatosis (Type 1) Cancer (no primary CNS involvement)

21. NF1 72 identified (medical records) 66 located and agreed to participate 60 schools participated 54 children with NF and 53 COMPs participate in home-based assessment

22. NF1: DISEASE SEVERITY Overall medical severity Visibility/cosmetic involvement Neurologic involvement

23. RCP: TEACHER NOMINATIONS

24. RCP ILLNESS ROLES: PEERS ***p <.001

25. RCP: PEER NOMINATIONS

26. SOCIAL ACCEPTANCE: NF1

27. DEPRESSION AND LONELINESS

28. SELF PERCEPTIONS

30. MOTHER REPORTS * **

31. FATHER REPORTS

32. DISEASE SEVERITY: NF1 OVERALL MEDICAL SEVERITY Sick a lot (peers) Attention (mothers and fathers) VISIBILITY/COSMETIC INVOLVEMENT RA rating

33. NEUROLOGIC DISEASE SEVERITY: PEER REPORTS Social behavior –Popular-Leader [r = -.32] –Sensitive-Isolated [r =.28] Social acceptance –Reciprocated friendships [r = -.28] –Like Ratings [r = -.32]

34. NEUROLOGIC DISEASE SEVERITY: PARENT REPORTS Externalizing symptoms (M & F) Attention (M) Rhythmicity (M & F)

35. NEUROLOGIC DISEASE SEVERITY: CHILD REPORTS Depression [r =.43] Self concept: Behavior [r =.30]

36. CONCLUSIONS: CHILDREN WITH NF Social functioning Emotional well being Behavior (acting out) DISEASE SEVERITY –Major role: Neurological severity

37. SELECTION CRITERIA: CANCER No primary CNS involvement On chemotherapy –11 months since diagnosis

38. DISEASE STATUS PRIMARY DISEASE –leukemias –lymphomas –solid tumors # OF PATIENTS 34 21 17

39. CHILDHOOD CANCER: ILLNESS SEVERITY Protocols Response to treatment

40. RCP: TEACHER NOMINATIONS

41. RCP ILLNESS ROLES: PEERS

42. RCP: PEER NOMINATIONS

43. SOCIAL ACCEPTANCE: CANCER

44. SOCIAL ACCEPTANCE: NF1

45. DEPRESSION AND LONELINESS

46. SELF PERCEPTIONS

48. MOTHER REPORTS

49. FATHER REPORTS

50. DISEASE SEVERITY: CANCER Peer reports: Aggressive-Disruptive Peer reports: Like Ratings Teacher reports: Sensitive-Isolated

51. CONCLUSIONS: Children with Cancer on Chemotherapy Social functioning Emotional well being Behavior (acting out) Disease severity

52. DEPRESSION AND YOUTH WITH CANCER 2 recent review papers –DeJong & Fombonne, 2006 –Noll & Kupst, 2007 Cross sectional/longitudinal: Modest levels of depression regardless of methodology or reporting source

53. ADDITIONAL COMPLETED WORK CROSS SECTIONAL Sickle cell disease (2 studies) Hemophilia (3 site investigation) Juvenile rheumatoid arthritis Juvenile migraines Siblings of children with SCD (Hgb SS)

54. ADDITIONAL COMPLETED WORK LONGITUDINAL 2 year classroom follow ups –Cancer –Juvenile rheumatoid arthritis –Sickle cell disease

55. ADDITIONAL WORK COMPLETED NEUROLOGIC INVOLVEMENT Bone marrow transplant survivors Brain tumor survivors

56. 18 YEAR OLD FOLLOW UPS Cancer (N = 51) Sickle Cell Disease (N = 42) Juvenile Rheumatoid Arthritis (N = 29) Comparison Peers (N = 132) 79% of eligible young adults (CI) 83% of eligible comparisons

57. YOUNG ADULT EMOTIONAL WELL-BEING YOUTH REPORT -PTSD -Depression/anxiety -Self concept PARENT’S REPORT –PTSD –Depression/anxiety

58. Depression // Dissociative Symptoms

59. MOOD

60. SELF PERCEPTIONS: 18 Y/O FOLLOW UP

62. K-SADS-E (current)

63. K-SADS-E (lifetime)

64. Internalizing Symptoms: Parent Report at Age 18

65. Percentage of High School Students Who Felt Sad or Hopeless, 1999 – 2007 1 No significant change over time National Youth Risk Behavior Surveys, 1999 – 2007

66. Percentage of High School Students Who Seriously Considered Attempting Suicide, 1991 – 2007 1 Decreased 1991-2007, p <.05 National Youth Risk Behavior Surveys, 1991 – 2007

67. Percentage of High School Students Who Attempted Suicide,* 1991 – 2007 * One or more times during the 12 months before the survey. 1 No change 1991-2001, decreased 2001-2007, p <.05 National Youth Risk Behavior Surveys, 1991 – 2007

68. CONCLUSIONS: YOUNG ADULTS AND CHRONIC ILLNESS Depression Anxiety Post traumatic stress –Symptoms –Disorder Self concept

69. IF HARDINESS IS TYPICAL? WHY?

70. STRESS / TRAUMA MODEL Evolutionary Behavioral Health Illness Parameters Trauma to the CNS Family Parameters Extreme Family Deprivation Child Dysfunction Childhood Chronic Illness

72. DARWIN: ORIGIN OF THE SPECIES General evolutionary theory Evolution by natural selection Inclusive fit theory

73. EVOLUTIONARY THEORY OF STRESS/TRAUMA: KEY FEATURES Specific hypotheses –Testable model Developmental focus Role of coping or medications –Opportunities for behavioral health

74. WHY EVOLUTIONARY THEORY? Uniting topics across disciplines of behavioral science Requires an understanding of the function of behavior

75. ATTACHMENT THEORY: STRANGER ANXIETY Cognitive Developmental Social Personality Clinical (psychiatry/psychology/DBP) Neuroscience

76. FUNCTION OF THE BEHAVIOR WHY DOES IT EXIST? Origins within ancestral conditions –Humans as living fossils Adaptive significance

77. DEVELOPMENTAL CONSIDERATIONS Adolescents take risks National Youth Risk Behavior Surveys, 1991 – 2007

78. Leading Causes of Death Among Persons Aged 10 – 24 Years in the United States, 2003 National Youth Risk Behavior Surveys, 1991 – 2005

79. Leading Causes of Death Among Persons Aged 25 Years and Older in the United States, 2003 National Youth Risk Behavior Surveys, 1991 – 2005

80. CHILD/ADOLESCENT RISK TAKING BEHAVIORS Neurobiological development Risk taking –What were you thinking? Protective effect—children and teens live in the moment

81. OPPORTUNITIES FOR PEDIATRICS National Institute of Mental Health Framework for prevention science –Universal –Selective –Targeted National Institute of Mental Health. (1998). Priorities for prevention research. A national advisory council workgroup on mental health disorders prevention research. NIMH: Bethesda, MD.

82. BEHAVIORAL HEALTH SERVICES Empirically supported therapies Psychopharmacology Cognitive behavior therapies

83. PEDIATRIC SUB-SPECIALTY CARE Coping and Wellness Center (Szigethy— RO1; NIH Innovator Award) Polycystic Ovary Syndrome (Rofey--K 12) Objectives: – Improve physical health – Reduce stigma – Improve access – Remove communication barriers

84. PEDIATRIC PRIMARY CARE Child & Family Counseling Center – Partnership with CCP – Empirically supported therapies Reduce stigma Improve access Eliminate communication barriers