Long-Term Outcome > TBI: Three Models Mary Pepping, Ph.D., ABPP-CN Professor, Dept. of Rehabilitation Medicine University of Washington Medical Center

Severe TBI: What Is It? Caused by blow to head or severe acceleration-deceleration injury Length of coma > 24 hours Glasgow Coma Scale < 9 Length of Post-Traumatic Amnesia (PTA) > 1 week Time to follow commands > 24 hours

Other indicators of severity Brain contusion Brain hemorrhage Skull fracture Brain swelling Shear injury Infection

What is long-term psychosocial outcome? Level of function achieved & maintained in a range of real-life roles and settings > 5-10 yrs Activities of daily living (ADLs) School Work Productive activity Family, friends, relationships Leisure

The challenges of objective measurement What outcomes should we measure? How do we best define/measure them? How can we be sure the groups of patients are comparable? Why has return to work been used so often as “the gold standard?”

What about indirect measures? Level of caregiver burden Degree of social isolation for patients and families Incidence of stress, decreased mental health, and alcohol problems among families of survivors Drug and alcohol abuse in survivors Chronic depression, anxiety, loneliness Economic impact

Long-term outcome stats Thomsen - Scandinavian study 10 years post injury Severe TBI 1/3 obtained and maintained paid employment after inpatient rehabilitation 2/3 not working at 10 years post-injury (Note: what are non-TBI work rates?)

Comprehensive Interdisciplinary Neuro-Rehab Early 1980s (Ben-Yishay; Prigatano) 34% back to work after intensive rehab Late 1980s (e.g., Prigatano) Introduction of work trials = 50% RTW Mid 1990s (Klonoff, Pepping & Grant) 60% RTW (Klonoff, et al) > 80% RTW or productive activity

Disincentives for RTW Disability income Lack of acceptance of change in skills Current earning power Litigation, depending on patient Worries about maintaining employment Concerns about health insurance Family needs and pressures

Three Models Rehab Without Walls Home and Community Model Intensive Outpatient Neuro-Rehab Barrow Model; UWMC Model Supported Employment Projects with Industry; Co-worker coaches

Rehab Without Walls Strengths Therapies delivered in home: no travel logistics Rapid access to treatment Clinical coordinator for each patient Interdisciplinary team Highly functional therapy focus Strategies developed and taught where they will be used Regular involvement of family

Rehab Without Walls Weaknesses No group treatment opportunities for patients or their families Vocational counselors and other specialty services tend not to be part of the core team and program Cost of program Does not accept Medicare or Medicaid

Intensive Outpatient NRP Strengths Full range of clinic based rehab services, e.g., OT, PT, SP, Neuropsychology, Psychology, Vocational Counselors, Therapeutic Rec, Social Work, Rehab Medicine physicians (physiatrists) Specialties: Job Stations, Assistive Technologies, Certified Driving Evaluators, specialty MD care Treatment groups for patients and families Research opportunities, e.g., exercise study Access to continuing education presentations Most or all insurances accepted

Intensive Outpatient NRP Weaknesses How well will treatments generalize to home and community? Transportation can be a challenge for patients and families How long does it take to get admitted and seen for treatment or specialty care?

Supported employment model Strengths Direct treatment and support for work- related goals and needs Use of peer job coaches Capitalizes upon patient’s desire to be back to work = a major motivator for use of strategies and improved behavior Patient is earning money and feels more normal and less isolated

Supported employment model Weaknesses Has a more limited treatment focus so that other important personal/family problems > TBI may not get addressed Patient needs to be ready for return to work process, e.g., aware and accepting of new status It is not clear to what extent compensations learned for one job will generalize to other jobs

How are these models doing? With good “matching” of patient to experienced programs, outcomes are strong in all models, e.g., 60-90% We have learned from our failures, e.g., why don’t people with potential RTW > TBI? The importance of volunteer work Formal and informal follow-up Added help at major transitions

Long term needs we don’t yet address well Post-program support for families Respite Quality of their work and personal lives Economic advisors Psychotherapeutic support Friendships and intimate relationships for people who survive severe TBI Telephone and internet based supports