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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
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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 • 2000-2007 (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