THE ESSENTIAL BRAIN INJURY GUIDE

Transcription

1 THE ESSENTIAL BRAIN INJURY GUIDE Outcomes Section 9 Measurements & Participation Presented by: Rene Carfi, LCSW, CBIST Senior Brain Injury Specialist Brain Injury Alliance of Connecticut

2 Contributors Kimberly Bellon, BSW, CBIS Pamela D. Sherron Targett Paul Wehman, PhD Jerry Wright, MS, CBIST

3 Certified Brain Injury Specialist Training Presented by Brain Injury Alliance of Connecticut staff: Rene Carfi, LCSW, CBIST, Senior Brain Injury Specialist & Bonnie Meyers, CRC, CBIST, Director of Programs & Services This training is being offered as part of the Brain Injury Alliance of Connecticut s ongoing commitment to provide education and outreach about brain injury in an effort to improve services and supports for those affected by brain injury.

4 ACBIS Exam Study Outline Measurements Definitions of reliability, validity, and widely accepted Measures early after injury Measures used in acute rehab Measures in post-acute rehab Measures for rating participation Required aspects of outcomes tools Common data elements Keep an eye out for this

5 Outcome Measurement Chapter 23

6 Learning Objectives Be able to describe the importance of outcome measurement in rehabilitation Be able to articulate the minimum number of measurements needed to show the effectiveness of an intervention Be able to discuss the 4 measures used in acute rehabilitation Be able to explain the difference between validity and reliability of a specific instrument Be able to summarize the rationale behind certification requirements associated with use of specific measures Be familiar with the 4 measures used in post-acute settings or in the community Gain an understanding of specialty instruments used to measure quality of life Be able to give an example of measures appropriate to assess changes in individuals with the most severe impairment Be able to identify web resources to access instruments for outcome measurement in rehabilitation

7 Measurement Definition: The assignment of numbers to objects or events Why is measurement important? To accurately record change and treatment effectiveness To describe individuals to providers both within and between facilities to better meet their needs Measurement drives best practice Measurement help shape treatment plans Improved measures suggest the chosen treatment is effective Consider changing the treatment if measure worsens Cognitive and behavioral issues can be especially difficult to describe Brain injury affects people in a variety of ways, necessitating a variety of measurement tools

8 Some Measures Predict Outcomes If 90% of individuals scoring X upon admission achieve a score of Y at discharge we can set appropriate goals Drive reimbursement and length of stay Researchers require measurement to develop best practice

9 Reliability, Validity, & Widely Accepted Reliability: A reliable measure is one that measures consistently when applied to different individuals, at different times, and in different situations. It refers to the repeatability and consistency of a measure. Validity: The degree to which an instrument actually measures that which it is intended to measure; for example, the FIM (Functional Independence Measure) is a valid measure of functional ability and level of assistance, but it would not be a valid measure of life satisfaction or depression. Widely Accepted: Instruments that have withstood substantial rigor in the scientific community and are endorsed for use without being subject to question.

10 Home Grown Measures Historically, measurements specific to brain injury are lacking Many providers developed their own or applied measurements designed for other populations Without proper development and testing these seemingly useful measurements can be highly flawed and misguide treatment Not consistent across facilities or settings Not reliable or valid

11 Measurement Basics Minimum of 2 measurements required: Baseline (before treatment) After treatment Time 1: a woman receives a score of 1 on the Auditory Function Scale of the JFK Coma Recovery Scale- Revised; startles to sound Intervention: the individual is prescribed medication to stimulate recovery Time 2: Two weeks later the individual receives a score of 3; indicating that he/she moves to verbal command in a reproducible manor

12 Measurement Basics Psychometrics Branch of psychology which studies the design, qualities, administration, and interpretation of tests for the measurement of psychological concepts such as intelligence, emotions, and personality traits Includes concepts such as reliability and validity of tests All providers must consider the psychometrics of measurements to ensure they are using quality measures

13 Measurement Basics Standardized Assessment A test given in the same way to all individuals This allows for comparison of scores between individuals Functional Typically refers to daily activities and occupations of daily life such as dressing, eating, operating a telephone, cooking, etc. Likert Scale Commonly used for questionnaires Scored on how much the individual agrees with each statement (typically: agree somewhat agree disagree )

14 Considerations When Choosing a Measure Reliability Validity Timing Cost Expertise & Training Common Data Elements

15 Choosing a Measure Reliability Reliability speaks to a measurements consistency When a measure is reliable you can expect similar results when two providers administer the assessment A reliable measure is consistent when used for different individuals When a measure is reliable you can expect similar results across facilities

16 Choosing a Measure Validity A valid outcome assessment measures what it claims to measure For example, the Level of Cognitive Functioning Scale (often referred to as the Rancho scale) is a valid measure of gross cognitive level; it would not be a valid measure of quality of life

17 A measure must have good reliability and validity Reliable; Not Valid Low Reliability; Low Validity The proximity of the red dots show the consistency of scoring on this measure (i.e., reliability) The green bullseye represents the construct being measured (i.e., validity) Not Reliable; Not Valid Reliable; Valid

18 Choosing a Measure Timing Early Measures Glasgow Coma Scale Abbreviated Injury Scale Loss of Consciousness JFK Coma Recovery Scale Revised Measure of Post-Traumatic Amnesia Glasgow Outcome Scale, Extended Scale Acute Measures Functional Independence Measure Disability Rating Scale Level of Cognitive Functioning Scale Post-Acute Measures Craig Handicap Assessment and Reporting Technique Mayo Portland Adaptability Inventory The Participation Assessment with Recombined Tools - Objective

19 Choosing a Measure Timing If a test is given at the wrong time you may run into ceiling or floor effects Floor Effect assessment is too challenging and many will receive lowest score possible Ceiling Effect assessment is too easy and many will receive highest score possible Example of Floor Effect An individual in a minimally conscious state will receive a scores of zeros (the activity does not occur) and ones (total assistance required) for all items Example of Ceiling Effect When assessing individuals living independently and working full time with minimal external supports you would expect them to score 7 on the Rancho scale

20 Choosing a Measure Cost Some measures are in the public domain available for use at no cost Other may require purchase of kits, items, manuals, and/or scoring sheets which need to be replenished Some measures require space and other environmental factors which can add cost How much time is required to administer the measure?

21 Choosing a Measure Expertise & Training Some measures require academic degrees, experience, and/or specific training References: The Center for Outcome Measurement in Brain Injury (COMBI) Testing Manuals Some measures can be completed by the individual being tested or a proxy such as a caregiver

22 Choosing a Measure Common Data Elements How widely accepted the measurement is in the field of brain injury? Standard set of measures for brain injury Consensus of hundreds of experts in rehabilitation for brain injury National Institute of Neurologic Disorders and Stroke as part of the National Institutes of Health

23 Examples Measures: Acute Measures Used Early After Injury Scores range between 3 and 15 with lower scores representing more severe injury There are three components to the GCS: Eye opening The Glasgow Coma Scale Verbal response Motor response The GCS is a widely used measure of level of consciousness, which also serves as an indicator of severity of brain injury While the scale has great utility in the assessment of consciousness level, the scale s descriptions are going out of favor due to the use of the word mild This measure is often used at the scene of the injury, in emergency room settings, and in acute care It is useful for trends in a patient s condition It is not useful as a predictor of long-term outcomes

24 Examples Measures: Acute Setting The Rancho Los Amigos Level of Cognitive Functioning Scale Used for assessment of cognitive function of people with a brain injury post-coma

25 Examples Measures: Post Acute Setting The Mayo-Portland Adaptability Inventory (MPAI) The MPAI was primarily designed to: Assist in the clinical evaluation of people during the post-acute period following acquired brain injury Assist in the evaluation of rehabilitation programs designed to serve these people The MPAI has 3 subscales: Abilities Adjustment Participation Less Disability More Disability If a patient has a t-score of 75 on the abilities scale, it indicates a higher level of disability, and indicates that 74% of others with a brain injury (from a normative sample) have a better score (and to some degree less disability) If a patient has a t-score of 35 on the abilities scale, it indicates a lower level of disability, and indicates that 34% of others with a brain injury have a better score

26 Specialty Measures Quality of Life Measures World Health Organization (Quality of Life Scale) Measures of Neuropsychological Functioning Detailed testing used to describe a wide variety of brain functions Requires considerable skill and training Often requires advanced academic degrees (clinical neuropsychologists, school psychologists) Measures of Depression Beck Depression Inventory Patient Health Questionnaire Measures of Anxiety Anxiety is a common issue in brain injury Post traumatic stress disorder and obsessive compulsive disorder are common and strongly related to anxiety Family Functioning Brain injury can be life-changing for the family unit Pediatrics

27 Web Resources The Center for Outcome Measurement in Brain Injury (COMBI) at - Multicenter collaborative project providing information for many common outcome and assessment measures Rehabilitation Measures Database at includes information on many measurements used for brain injury NINDS Common Data Elements at aims to standardize research data collection

28 Participation Chapter 25

29 Learning Objectives Be able to articulate the primary outcome of rehabilitation Be able to distinguish between activities and participation Be able to identify the 3 tools used to measure participation Be able to explain the concept of community enfranchisement

30 World Health Organization s (WHO) Biopsychosocial Model The WHO biopsychosocial model extends beyond contemporary models (where characteristics of the person and the health condition are emphasized), by taking into account the interaction of biological, psychological, social and cultural factors to explain disease or disability Participation is a critical component of the WHO s International Classification of Functioning, Disability and Health (ICF) biopsychosocial model

31 World Health Organization s (WHO) Definitions: Participation Term to describe engagement in social roles Previously called community integration or the converse handicap A critical component of the WHO International Classification of Functioning, Disability and Health (ICF) biopsychosocial model Disability A reflection of the interaction between the effects of the health condition, the environmental context, and personal factors (WHO)

32 ICF Classifications (International Classification of Functioning) Activities are the execution of a task Participation is the involvement in life situations Activity limitations occur if someone is unable to fully execute a task Participation restriction is the lack of full engagement in a life situation

33 Domains of the ICF Learning and applying knowledge General tasks and demands Communication Mobility Self-care Domestic life Interpersonal interactions and relationships Major life areas Community, civic, and social life

34 Current Knowledge Ideal participation can vary across stakeholder Objective measures of participation can provide a metric for rehab outcomes, determine the efficacy of treatment, and identify barriers to participation Many measures assess the extent to which a person engages in social, productive, recreational and other community based activities Measurement of the individual s satisfaction with participation is important Participation is considered one of the primary outcomes of rehab

35 Measures of Participation CHART-SF Craig Handicap Assessment and Reporting Technique-Short Form (CHART-SF) Objective measure of a person s engagement in roles in society Subscales include Physical independence Mobility Occupation Social integration Economic self-sufficiency Cognitive independence

36 Measures of Participation Mayo Portland Adaptability Inventory 4 - Participation Index Subscale of the Mayo Portland Adaptability Inventory-4 Designed to track post-acute rehab outcomes in adults and children with TBI Includes 8 items Initiation Social contact Leisure & recreational activities Self-care Residence Transportation Work or school Money management

37 Measures of Participation PART-O Participation Assessment with Recombined Tools-Objective Measures frequency of engagement or involvement with an activity Input was gathered from persons with TBI, family, advocates, and researchers to classify 3 domains: Out and About Productivity Social Relations

38 Future Directions A clear, operational definition of Participation has yet to be agreed upon The extent to which a person feels they have control over their level of participation, feels a part of the community, and feels valued, also known as community enfranchisement, is currently being studied Future research should also focus on ways to improve effectiveness of interventions related to participation

39 D T H EEN 39

40 Q & A

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