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Conducting Research in a TBI Population By: Kyle Haggerty, Ph.D. Preeti Sunderaraman, M.S. Nicole K. De Luca, M.A. Learning Objectives • • • • • Why Research in TBI is Needed Measuring Outcomes in TBI The Population We Serve at Bancroft Difficulties Research Currently being Conducted at Bancroft 2 Why Traumatic Brain Injury Research is Needed 3 Traumatic Brain Injury 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. Classification of TBIs 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 Some Stats In 2010, about 2.5 million emergency department (ED) visits, hospitalizations, or deaths were associated with TBI—either alone or in combination with other injuries—in the United States. TBI contributed to the deaths of more than 50,000 people. 62.3 per 100,000 adults age 15 and over are living in the community with impairments due to brain injury. Continued 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. Causes 8 Costs 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. Common Symptoms Headaches Memory Deficits Word Finding Difficulty Fatigue Changes in Emotion Changes in Sleep Impulsiveness Concentration TBI and Mental Illness 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 Quality of Life 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. Continued Many variables have been shown to correlate with life satisfaction in individuals who have suffered TBIs. Marital Status Employment Problem Solving Executive Functioning Measuring Outcomes 14 Outcome Measures Used What measures are used depends on the setting (acute of 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 15 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 16 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. 17 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 18 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. 19 MPAI-4 MPAI-4: Ability Index • Mobility • Use of hands • Audition • Vision • Motor speech • Dizziness • Verbal Communication 20 • Nonverbal Communication • Memory • Attention/ concentration • Fund of information • Novel Problem-solving • Visuospatial abilities Continued MPAI-4: Adjustment Index • Anxiety • Depression • Irritability, anger, aggression • Pain/headache • Fatigue • Sensitivity to mild symptoms 21 • Inappropriate social interaction • Impaired self-awareness • Family/significant relationships • Initiation • Social contact • Leisure activities Continued MPAI-4: Participation Index • Initiation • Social contact • Leisure activities • Self care • Residence 22 • Transportation • Employment • Managing Money MPAI-4 Database Project • Initiative to develop an electronic national database for MPAI-4 scores • 23 Would allow different rehab centers to combine data to study changes in outcomes over the course of post-acute rehabilitation 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 • 24 Substance abuse, multiple treatment modalities, social support, etc. 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. • • • • 25 Language deficits Awareness Abstract Reasoning Memory Who We Serve 26 Who We Serve Age: Age at Injury Age Breakdowns 35 Teens 20s 30s 40s 30 25 5% 17% 20 35% 15 14% 10 5 29% 0 Teens 20s 30s 40s 50s 60s 70s 50s Who We Serve Gender and Ethnicity Ethnicity Caucasian Black/Afr. Amr. 2% 16% 82% Other Who We Serve Types of Injuries Effectiveness Quality of Life (WHOQOL-BREF) 30 Effectiveness (MPAI-4) 22.5 22 21.5 21 20.5 2011 20 2012 19.5 2013 19 18.5 18 17.5 60 Abilities 55 50 45 40 Total 35 30 25 20 2011 2012 2013 Adjustment Participation Recent Research Accepted Presentations: Eichenbaum, E., De Luca, N., Breslin, J., Brownsberger, M., Haggerty, K., Lindgren, K. (2014, Febuary). Post Traumatic Growth and Rehabilitation Outcomes in Traumatic Brain Injury. Poster submitted for presentation at Division 22’s Annual Rehabilitation Psychology Conference, San Antonio, TX. Haggerty, K., & Arigo, D. (2014, March). Social Comparison and Psychosocial Functioning in Severe Traumatic Brain Injury: A Pilot Study, Poster accepted for presentation at the 72nd Annual Scientific Meeting of the American Psychosomatic Society, San Francisco, CA. Halpern, J., Haggerty, K., Lindgren, K., & Boyer, C. (2014, March). The Relationship between Self and Team reports of Rehabilitation Outcomes in Traumatic Brain Injury. Accepted for oral presentation at the 10th World Congress on Brain Injury, San Francisco, CA. Sunderaraman, P., Haggerty, K., Zamzow, J., Lindgren, K., Ph.D. (2014, February). Exploring The Relationship Between Money Management and, Mood and Cognition in People with Chronic Traumatic Brain Injury. Poster accepted for presentation at the 42nd Annual Meeting of the International Neuropsychological Conference (INS) to be held in Seattle, WA. 32 Difficulties 33 Challenges • Significant variability between clients • Limited Power • Accuracy of self report measures? • • 34 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. Current Research 35 An Examination of the Role of Self-Compassion in a Traumatic Brain Injury Sample Nicole K. De Luca, M.A. May 22, 2013 “Y” Shaped Model of Process and Outcome in TBI/ABI Rehabilitation Self-Discrepancy & TBI/ABI Following a TBI/ABI - “loss of self” (Nochi, 1998) Memory deficits Family/friends/community views Neurological changes (Persinger et al., 1993) Perceived identity change between pre- and post injury selves Higher rates of depression and anxiety Lower quality of life (Carroll & Coetzer, 2011, Vickery, Gontkovsky, & Caroselli, 2005) TBI/ABI and Self-Compassion One single case study examined compassion-focused therapy (CFT) (Ashworth, Gracey & Gilbert, 2011) 24-year old female with a severe TBI Significant anxiety, depression and social withdrawal CFT; increasing the ‘soothing system’ and decrease the patients threat system Current Study Self-compassion as a tool in TBI/ABI rehabilitation treatment? Some support for CFT in TBI/ABI samples (Ashworth, Gracey & Gilbert, 2011) Current exploratory study aims to: Replicate findings that self-compassion is related to positive psychological outcomes in a TBI/ABI sample Address this question by examining self-compassion in the context of the “Y-shaped” model (Gracey et al., 2009) Challenges Have to exclude individuals injured before the age of 12 (identity development) Limited Power Self-Compassion Scale is once again self-report and 8th grade reading level Financial Decision Making and Acquired Brain Injury. Preeti Sunderaraman, MS PhD Candidate Drexel University Financial Decision Making Examples: Difficulty with bill payments Completing taxes Repaying mortgages Balancing the checkbook Banking Making timely and appropriate purchases Managing disability benefits Budgeting Operating the ATM machines Why study this in ABI? • • • • • • ~30% have difficulty managing Cause emotional problems – e.g., depression Impacts functioning in community Unfulfilled responsibilities ,and if capable of managing them If requires a financial guardian Vulnerable to exploitation Competency vs. Capacity Competency • Legal construct • Varies depending on state statutes E.g., North Carolina versus Nevada Capacity • Non-legal construct • Clinical decision-making • Guardianship evaluations • No standard guidelines to assess Why are there no standard guidelines? Reasons for lack of standard guidelines: • Complex & multifaceted • Depends on several cognitive abilities • Variability within this construct’s dimension– manage one versus several estates • Ongoing efforts to develop models and determine neuropsychological basis for this construct E.g., Marson and colleagues (2002, 2008, 2010) Consensus • Variability across domains • Variability within each domain • Nature and range of impairments may vary by population Few tools to assess • Financial Capacity Instrument (FCI; Marson et al, 2000) • Measure of Awareness of Financial Skills (MAFS; Cramer et al, 2004) • Financial Decision Making Questionnaire (FDMQ; Cole & Denburg, 2008) • Financial Competence Assessment Inventory (FCAI; Kershaw & Webber, 2008) Given the research topic, some practical difficulties in conducting research with TBI individuals are: I. Nature of TBI • What population of TBI should I recruit – mild, moderate, severe? A combination of 1 or 2? • At what stage of recovery should they be in – 1 year, 2 years, or more than that? • Should they be inpatients or outpatients? • Should they be employed or not? II. Recruitment Issues Should people be recruited from outpatient or from the community? From one site or several sites? Via phone or internet or flyers posters at various centers? III. Inclusion/Exclusion criteria – related to: • age (aging issues for the elderly) • number of years received rehabilitation services • presence of psychiatric issues, including depression • type of medications • type of medical complications (e.g., seizure disorder) • type of physical impairments (e.g., apraxia) • number of previous injuries – physical and cognitive • presence of developmental disabilities IV. Selection of measures To assess money management skills – subjective v/s. objective measures V. Design Cross-sectional or longitudinal: time and money considerations VI. Sample size ~30 or more than VII. Compensation: Amount of monetary compensation – may differ depending on the setting from which they are recruited. Thank You! Questions? 53