1. Measuring Outcomes in Brain Injury Rehabilitation By: Kyle Haggerty, Ph.D.

2. Learning Objectives What is Traumatic Brain Injury (TBI) Goals of Rehabilitation Measuring Outcomes in Brain Injury Rehabilitation The Outcome Measures We Use and Why Our Results Challenges/Ideas for Future 2

3. Traumatic Brain Injury 3

4. Traumatic Brain Injury (TBI): cerebral damage that occurs after birth, and is not directly related to a developmental disorder or a progressive damaging of the brain. Traumatic brain injury refers to a specific form of acquired brain injury that is the result of a sudden trauma. Acquired Brain Injury (ABI): includes all types of traumatic brain injuries and also brain injuries caused after birth by cerebral vascular accidents (commonly known as stroke), and loss of oxygen to the brain (hypoxic brain injury). Traumatic Brain Injury

5. Traumatic brain injuries are classified by severity into one of three categories: mild, moderate, or severe. Classification into one of the three categories is usually based upon the following four criteria. Glasgow Coma score Duration of loss of consciousness Duration of alteration of consciousness Severity of post-traumatic amnesia Classification of TBIs

6. 123456 Eyes Does not open eyes Opens eyes in response to painful stimuli Opens eyes in response to voice Opens eyes spontaneous ly N/A Verbal Makes no sounds Incomprehe nsible sounds Utters inappropriat e words Confused, disoriented Oriented, converses normally N/A Motor Makes no movements Extension to painful stimuli Abnormal flexion to painful stimuli Flexion / Withdrawal to painful stimuli Localizes painful stimuli Obeys commands Glasgow Coma Scale Not part of original scale

7. MildModerateSevere Glasgow Coma score 13-159-123-8 Duration of loss of consciousness <30 Minutes>30Minutes<24Ho urs >24 Hours Duration of alteration of consciousness <24 Hours>24 Hours Severity of post- traumatic amnesia <24 Hours>24 Hours<7 Days>7 Days Classification Guidelines

8. In 2003, approximately 1.5 million Americans experienced a traumatic brain injury. Of those 1.5 million, 290,000 were hospitalized and 50,000 died. 62.3 per 100,000 adults age 15 and over are living in the community with impairments due to brain injury. Some Stats

9. Twice as many males are affected by TBI as females. Ages 15-24 and >60 are at the highest risk. Individuals in rural areas are more at risk. Continued

10. 10 Causes

11. Physical Causes Bruising/Bleeding, Tearing, Swelling, Open/Closed injuries

12. Costs of traumatic brain injury in the U. S. have been estimated to be $48.3 billion annually. Survivors cost $31.7 billion. Fatalities cost $16.6 billion. Lifetime cost per person is about $4 million. About 75% of patients with severe TBI do not return to work. About 66% require assistance with daily living. 90% report dissatisfaction with social integration. Costs

13. Prevalence rates for psychiatric disorders are high after TBI. Depression rates have been reported in 14 to 77% of patients Substance abuse 5 to 28% PTSD 3 to 27% Other anxiety disorders 3 to 28% TBI and Mental Illness

14. Life satisfaction appears to steadily decline after an individual experiences a brain injury. Injury severity has not been found to be significantly correlated with measures of life satisfaction. TBI and Quality of Life

15. Many variables have been shown to correlate with life satisfaction in individuals who have suffered TBIs. Marital Status Employment Problem Solving Executive Functioning Continued

16. Goals of Rehabilitation 16

17. Purpose of Rehab The overall goal of Rehabilitation following a TBI is to improve the person’s served functioning at home. This can be done by helping to restore a client’s physical, sensory, psychological, or cognitive abilities, or by helping them develop compensatory strategies. 17

18. Cognitive: Cognitive Rehabilitation/Neuropsychology/Speech Physical: Physical Therapy/Occupational Therapy Emotional/Adjustment: Neuropsychology Participation: Entire team Rehabilitation Focus

19. Immediate Memory Digit Span Not a Common Complaint Short Term Memory Most Common Deficit in TBI Long Term Memory Missing details due to STM loss Memory (Cog and Neuropsych)

20. Aphasia Circumlocution Hand Gestures Tip of the tongue Common due to anatomy of skull Language/Word Finding (Speech and Neuropsych

21. Ambulation/Motor (PT/OT) Difficulties with balance/walking Impairments in fine motor skills Decreased strength and stamina 21

22. Headaches Spinal Cord Injuries Ineffectiveness of Pain Medication Chronic Pain (PT/OT)

23. Brought on by large crowds, lots of noise, or information presented too quickly. Inability to process external environment Fatigue Rise in emotions Overload (Neuropsych/OT)

24. Emotions can become flat or amplified. Lack of inhibition Trouble analyzing social situations Difficulty with facial expression or tone of voice Emotions (Neuropsych)

25. Measuring Outcomes 25

26. Outcome Measures Used What measures are used depends on the setting (acute or long-term rehabilitation) Acute settings frequently use: Functional Independence Measure (FIM): An 18-item scale used to assess the patient's level of independence in mobility, self-care, and cognition Glasgow Outcome Scale (GOS) Disability Rating Scale (DRS): Measures general functional changes over the course of recovery after TBI 26

27. What about long-term? No measures are universally agreed upon Some measures frequently used include: Mayo Portland Adaptability Inventory (MPAI) Supervision Rating Scale (SRS) Community Integration Questionnaire (CIQ) Disability Rating Scale (DRS) Independent Living Scale (ILS) And many more 27

28. Difficulties What outcomes are the most significant/important? The goals of rehabilitation are individualized making it difficult to identify a universal outcome The complexity of the cases makes it difficult to make causal references Substance abuse, multiple treatment modalities, social support, etc. 28

29. Continued Questions about the accuracy of self-report Some researchers have found that in people who have suffered TBIs, self-report is not a reliable measure. Language deficits Awareness Abstract Reasoning Memory 29

30. Who We Serve 30

31. Total Number of Persons Served

32. Who We Serve Age:

33. Continued 33

34. Who We Serve Gender and Ethnicity

35. Who We Serve Types of Injuries

36. Our Measures 36

37. Standardized Measures Bancroft is a member of the Pennsylvania Association of Rehabilitation Facilities (PARF), a collaborative data collection and outcomes measurement project designed to: Enhance clinical evaluation Verify the treatment provided produces the desired outcomes Allow providers to make better decisions regarding program/service components Provide aggregate data to funders to assist with evaluation of needs and services In conjunction with our PARF colleagues, we utilize three standardized outcome measures: Mayo-Portland Adaptability Inventory (MPAI-4, Malec, J., 2005); Supervision Rating Scale (SRS, Boake, C., 2001); and most recently the World Health Organization Quality of Life Index (WHOQOL-BREF, WHO, 2004). A project to develop standardized satisfaction surveys is in progress. 37

38. Outcomes Process Data is collected annually Data collection included an annual neuropsychological assessment Entire rehabilitation team is invloved 38

39. Supervision Rating Scale Measures the level and type of supervision that a patient/subject receives from caregivers The SRS rates level of supervision on a single 13-point ordinal scale SRS ratings have shown consistent relationships with type of living arrangement and with independence in self-care and instrumental ADL 39

40. 40

41. WHOQOL-BREF The WHOQOL-BREF instrument comprises 26 self-reported items, which measure the following broad domains: physical health, psychological health, social relationships, and environment Research has found that the WHOQOL-BREF has strong psychometric properties Raw scores on the measure can range from 24 to 120, with higher scores being indicative of a higher quality of life. 41

42. MPAI-4 MPAI-4: Ability Index Mobility Use of hands Audition Vision Motor speech Dizziness Verbal Communication Nonverbal Communication Memory Attention/ concentration Fund of information Novel Problem-solving Visuospatial abilities 42

43. Continued MPAI-4: Adjustment Index Anxiety Depression Irritability, anger, aggression Pain/headache Fatigue Sensitivity to mild symptoms Inappropriate social interaction Impaired self-awareness Family/significant relationships Initiation Social contact Leisure activities 43

44. Continued MPAI-4: Participation Index Initiation Social contact Leisure activities Self care Residence Transportation Employment Managing Money 44

45. MPAI-4 Database Project Initiative to develop an electronic national database for MPAI-4 scores Would allow different rehab centers to combine data to study changes in outcomes over the course of post-acute rehabilitation 45

46. Results From Our Population 46

47. Effectiveness Supervision Rating Scale (SRS) 47

48. Effectiveness Quality of Life (WHOQOL-BREF) 48

49. Effectiveness (MPAI-4)

50. Satisfaction Key Measure Persons Served

51. Satisfaction – Persons Served

53. 53

54. Satisfaction - Families 54

55. Satisfaction – Funders, Case Managers 55

56. Recent Research Accepted Publications: DeLuca, N., Eichenbaum, E., Hartwig, A., Brownsberger, M., & Lindgren, K. (2012). MPAI-4 Depression item predicts quality of life following TBI [abstract]. Journal of Head Trauma Rehabilitation, 27(5), E20 56

57. Recent Research Accepted Presentations: DeLuca, N., Eichenbaum, E., Hartwig, A., Brownsberger, M., & Lindgren, K. (2012, September). MPAI-4 Depression item predicts quality of life following TBI. Poster presented at the 10th Annual Conference on Brain Injury of the North American Brain Injury Society (NABIS), Miami, FL Eichenbaum, E., DeLuca, N., Brownsberger, M., & Lindgren, K. (2012, February).Examining the relationship between Quality of Life and MPAI score following TBI: Preliminary results. Poster presented at Division 22’s 14th Annual Rehabilitation Psychology Conference, Fort Worth, TX Haggerty, K. (2013), Social Problem Solving among Individuals with Traumatic Brain Injury: Relationships with Quality of Life, Executive Functioning, and Community Integration. Poster presented at the annual meeting of Division 22 Rehabilitation Psychology Conference, Jacksonville, FL. 57

58. Difficulties and New Ideas 58

59. Challenges Goals related to the abilities scale in the MPAI-4 are difficult to obtain in a sub acute rehab population In general the MPAI-4 is useful for detecting significant long-term changes in functioning. Not as useful as an immediate measure of progress WHOQOL-BREF has robust findings, but still suffers from concerns over self-report. 59

60. Future Ideas Continue to explore how to measure satisfaction A specific measure of financial capacity Better measures of risk assessment 60

61. Thank You! Questions? 61

62. Contact Me Email: kyle.haggerty@bancroft.orgkyle.haggerty@bancroft.org Twitter: @DrKyleHaggerty 62