Importance, Selection and Use of Outcome Measures. Carolyn Baum, PhD, OTR, FAOTA Allen Heinemann, PhD, ABPP (RP), FACRM

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1 Importance, Selection and Use of Outcome Measures Carolyn Baum, PhD, OTR, FAOTA Allen Heinemann, PhD, ABPP (RP), FACRM

2 Objectives 1. Understand the Changing Medical System and the Changing Focus of Assessments 2. Understand how the International Classification of Disabilities and Function ( ICF) are Changing the Measurement Approach 3. Be able to Describe Outcomes at All Levels of the ICF 4. Understand how the Delivery of Rehabilitation will Rely on Measures to Triage, Plan Care and Build New Rehabilitation Services 5. The importance of Participation 6. What Can Influence Participation 7. Relationship of Constructs to Support Participation 8. Importance of Documenting Outcomes

3 A Changing Medical System MEDICAL MODEL COMMUNITY HEALTH Patients Receive Treatment to Recover COMMUNICATE MOVE DO People Receive Services to Improve Health and Reduce Cost of Care Requires Outcome Data to Guide Interventions, Demonstrate Effectiveness of Services, and Foster Policy Decisions 3

4 International Classification of Function and Disability, WHO 2001 Health Condition (disorder or disease) Body Function & Structures Activity Participation Personal Factors Environmental Factors 4

5 International Classification of Function and Disability, WHO 2001 Health Condition (disorder or disease) Body Function & Structures Activity Participation Personal Factors Environmental Factors Current Medical System 5

6 International Classification of Function and Disability, WHO 2001 Health Condition (disorder or disease) Body Function & Structures Activity Participation Personal Factors Environmental Factors Happening Now: A Blended Medical and Community Health System 6

7 A Changing Rehabilitation Paradigm Institutional Services Community Participation TRIAGE A C U T E C A R E TREATMENT Home Health Rehabilitation Skilled Nursing Out Patient Physical Activity Fitness Center Therapeutic Pool Exercise Classes Sports Walks Social/Peer Support/Info Religious Activities Clubs Family Activities Community Activities Work/ Learning Classes Work Volunteer Rehabilitation Initiatives Focused on Participation Opportunities for mass training Learning strategies to support performance Virtual training strategies Family and patient training Assistive technology and robotics Return to work training and accommodations Driving assessment and training Relationship with Independent Living Communication strategies Centers and Vocational Rehabilitation Home assessment/management Enabling mobility, post-rehab fitness Social opportunities Self Management strategies for home, community, and work 7

8 Body Structure/ Function Motor control Motor Planning Vision Audition Mood Language Executive Control Memory Strength Flexibility (Range) Grasp/Pinch Problem Solving Executive Function Attention Awareness Sleep EXAMPLE OF ICF CONSTRUCTS TO ADDRESS CLINICAL ISSUES Medical Care ( Recovery) (Socio-cultural Care ( Compensation) Activity Participation Environment Climb stairs Mobility Lift/Carry Sit/Stand Dress/Eat Groom/Hygiene Money Management Cook /meal prep Communication, Manage meds Care of Self Care of Others Maintenance of Home Work Activities Fitness Activities Leisure/Sport Activities Community Activities Social Activities Religious & Spiritual Activities Quality of Life *Physical* Psychological*Social* Spiritual *Role Functioning * General Well-being Social Support Social Capital Assistive Technology Workplace Accommodations Natural environment Built environment Attitudes Systems

9 What is Participation? An Insider Perspective Meaningful Engagement/ Being a Part of Choice & Control Access & Opportunity Participation Values Personal & Societal Responsibilities Having an Impact & Supporting Others Social Connection, Inclusion & Membership (Hammel et al 2008) 9

10 Why is it important to document outcomes? There are several compelling reasons for documenting outcomes, particularly outcomes related to activity AND participation. These include: Meeting individual clients needs and priorities Ensuring individual s civil rights to fully participate in society post-rehab, as mandated within the Americans with Disabilities Act Responding to a growing call for activity and participation outcome document by funders and service deliverers

11 Some relevant examples for rehabilitation providers include: Centers for Medicare & Medicaid Services (CMS) funded expansion of Home & Community-based Waiver and other programs in states to provide needed services and supports to transition to or remain in least restrictive, communitybased settings, and to prevent or delay nursing home or institutional placement. These supports include equitable access to needed therapy services, assistive technology or home modifications, personal attendants, etc. (see Term-Services-and-Support/Balancing/Money-Follows-the-Person.html ) The Commission on the Accreditation of Rehabilitation Facilities (CARF) requires therapists address and document participation for any facility applying for Stroke Specialty Programs (SSP) stating that intervention should focus on community integration and participation in life roles (CARF, 2011). The Affordable Care Act of 2010 further highlights the provision of communitybased services and supports to people with disabilities and older Americans, particularly for those who would otherwise not qualify for or be able to afford such services (see for more details) 11

12 Why document participation outcomes? Participation and activity are emphasized in the ICF as important elements of health, functioning and disability. There is a growing body of research examining participation-focused interventions and their impact on health, as well as on how to rigorously assess participation outcomes. Thus we have a compelling case in rehabilitation to include participation in our outcome plans and evidencebased research. The following content provides a summary of how to assess rehabilitation outcomes across ICF categories, and how to use this information to guide evidence-based interventions in rehabilitation.

13 Additional Reasons to Focus on Participation Disability community mandate to address participation disparities Health Care focus on primary, secondary prevention Health care policy & reimbursement priorities and changing trends in delivery People that require rehabilitation often have a chronic health condition that must be managed 13

14 What supports participation in daily life? Cognition Physiology Sensory Motor Psychological Spiritual Person Factors Self Care Care of Others Maintenance of Home Work Activities Fitness Activities Leisure/Sport Activities Community Activities Social Activities Religious & Spiritual Activities Environmental Factors Social Support Social Capitol Culture Physical Environment Tools We influence outcomes by what we address and how we engage the patient in their own rehabilitation

15 What Influences Outcomes? Considerations in Our Interventions

16 Person Factors The Capacity That Supports or Limits Participation

17 Neurobehavioral Factors Sensory Olfactory Can the person smell Gustatory Can the person taste Visual Can the person see Auditory Can the person hear Somatosensory Can the person feel Motor Can the person move and perform coordinated movement 17

18 Subjects (n=54) Age: 26 to 87 years Mean = 65 (sd 14.6) Gender: Male n=28 Women n=26 Race: White n= 28 Black n= 26 Stroke Type: Ischemic n=44 Hemorrahagic n=10 Prior Stroke: n=24 (Edwards et al 2006) 18

19 Functional Impairment Battery Vision: The Lighthouse Near Visual Acuity Guide Neglect: BIT Star Cancellation Audition: Repetition of Sounds Aphasia: Frenchay Aphasia Screening Test Literacy: Slosson Depression: Geriatric Depression Scale- Short Form Testing time: Approximately minutes. 19

20 Impairment Impairment Reported: FIB Score vs Medical Record Depression Low Literacy Anomia Aphasia Cognition Audition Neglect Vision Actual Patient Performance Documented in Chart Number of Patients

21 Number of Impairments Number of Impairments Patients with Multiple Impairments % 5.5% 5.5% 5.5% 9.3% 12.9% 12.9% 16.7% Percent of Patients

22 Physiological Factors Physical Health and Fitness Strength Endurance Flexibility Inactivity Heath 22

23 Psychological and Emotional Factors Personality traits Motivational influences Interpretation of experience influences the emotional state (affect) and contributes to selfconcept, self esteem and sense of identity Self-efficacy- experiences of the past success is what allows people to view themselves as competent. 23

24 Cognition as a driver of Participation

25 Cognition Cognition is not a discipline specific issue. Cognition is the operation of the mind process by which we become aware of objects of thought and perception, including all aspects of perceiving, thinking, remembering, moving, communicating, goals setting, problem solving and doing. 25

26 Measurement of Cognition is Central to Three Aspects of Rehabilitation Understand the person s ability to process cognitive information -central to planning and implementing care The person s cognitive ability to perform tasks and activities and perform safely - essential element of discharge planning, Transferability- central to functional and community participation If cognitive issues are not resolved or the patient cannot self manage the cognitive deficits, families must understand how to manage residual cognitive impairments 26

27 Implications of Cognitive Difficulties Poor Performance Loss of Job, poor performance in school Poor Communication with Family Loss of or inability to form Relationships Poor Health Management Poor Health Poor Community Participation 27

28 What patients/clients experience cognitive loss? Head injury Stroke Spinal Cord Injury Sport injury Multiple Sclerosis Alzheimer s Disease Depression Schizophrenia Cancer COPD Cardiac Conditions Diabetes Autism Spectrum ADD Anorexia Chronic Pain

29 The Environment

30 ICF EnvironmentTaxonomy 1. Products and Technology 5. Services, Systems, and Policies 2. Natural Environment/ Human-Made Changes to Environment 4. Attitudes 3. Support and Relationships 30

31 Revised Framework Economic Quality of Life Systems Services and Policies Environmental Barriers & Supports to Participation Built and Natural Environment Social Environment Access to Information and Technology Assistive Technology 31

32 Availability of Rehabilitation Measures There are many well-developed tools at the brain, neuropsychological, behavioral, performance and participation level THE MEASUREMENT OF THE ENVIRONMENT IS STILL IN ITS INFANCY BUT A TEAM OF SCIENTISTS ARE TRYING TO CHARACTERIZE FACTORS SUCH AS ECONOMICS, QUALITY OF LIFE, SERVICES AND SYSTEMS, SOCIAL ENVIRONMENT, BUILT AND NATURAL ENVIRONMENT, ACCESS TO INFORMATION AND TECHNOLOGY AND ASSISTIVE TECHNOLOGY---ALL FACTORS THAT ENHANCE PARTICIPATION IN PEOPLE WITH NEUROLOGICAL INJURIES

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