Importance, Selection and Use of Outcome Measures

1. Importance, Selection and Use of Outcome Measures Carolyn Baum, PhD, OTR, FAOTA

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

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

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

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

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

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

8. EXAMPLE OF ICF CONSTRUCTS TO ADDRESS CLINICAL ISSUES Medical Care ( Recovery) (Socio-cultural Care ( Compensation) Environment Participation Body Structure/ Function Activity Environment • Motor control • Motor Planning • Vision • Audition • Mood • Language • Executive Control • Memory • Strength • Flexibility (Range) • Grasp/Pinch • Problem Solving • Executive Function • Attention • Awareness • Sleep • Climb stairs • Mobility • Lift/Carry • Sit/Stand • Dress/Eat • Groom/Hygiene • Money Management • Cook /meal prep Communication, • Manage meds • Social Support • Social Capital • Assistive Technology • Workplace Accommodations • Natural environment • Built environment • Attitudes • Systems • 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

9. Respect & Dignity (Hammel et al 2008) What is Participation? An Insider Perspective

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, community-based 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 http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-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 community-based 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 http://www.healthcare.gov/law/full/index.html for more details)

12. 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 evidence-based 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. Why document participation outcomes?

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

14. What supports participation in daily life? Person Factors Environmental Factors Self Care Care of Others Maintenance of Home Work Activities Fitness Activities Leisure/Sport Activities Community Activities Social Activities Religious & Spiritual Activities Cognition Physiology Sensory Motor Psychological Spiritual 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

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)

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 25-30 minutes.

20. Actual Patient Performance Documented in Chart

21. Number of Impairments

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

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

24. Cognition as a driver of Participation

25. Cognition Cognition is not a discipline specific issue. Cognition isthe 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.

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

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

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

29. The Environment

30. ICF EnvironmentTaxonomy

31. Revised Framework Environmental Barriers & Supports to Participation

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