Measuring the Outcomes of Stroke Rehabilitation Results of a Canadian Stroke Strategy/Heart and Stroke Foundation National Consensus Panel

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Measuring the Outcomes of Stroke Rehabilitation Results of a Canadian Stroke Strategy/Heart and Stroke Foundation National Consensus Panel Objectives By the end of this presentation should be able to: 1. Identify three reasons for selecting a core set of rehabilitation outcome measures for Canada 2. Name psychometric issues that must be considered when selecting responsive outcome measures 3. Name some important consensus based measures of Stroke Rehabilitation outcomes using the International Classification of Functioning framework 4. Recognize stroke rehabilitation system performance indicators that could be used at their organization Page 1

Partners Canadian Stroke Network Canadian Stroke Strategy Heart and Stroke Foundation of Ontario Planning Group Mark Bayley Patty Lindsay Nicol Korner Bitensky Johanne Desrosiers Alison MacDonald Sharon Wood- Dauphinee Robert Teasell Katherine Salter Jeff Jutai Laurie Cameron Nancy Deming Page 2

Why an expert panel? Evidence from a survey of wide variability ab in use of outcome tools and assessment measures Stroke Rehabilitation Evidence Based Review has identified a large number of assessment tools used in stroke Canadian Stroke Strategy- Evaluation of the status of stroke care in Canada ada Stroke Rehabilitation services could be enhanced by use of standardized outcomes to identify professional training needs, lack of resources and other systemic issues. Objectives of the Consensus panel 1. Using the International Classification of Functioning to prioritize a set of outcome measures in the domains of body structure and function, activity and participation that could be used to evaluate the outcomes of stroke rehabilitation in Canada 2. Identify preliminary indicators of performance of of stroke rehabilitation process Page 3

Background Information Considerations for selecting Responsive Outcome Measures International Classification of Functioning Overview of Findings from Stroke Rehabilitation Evidence Based Review Survey of Canadian Clinicians Considerations for Selecting Responsive and Interpretable Outcome Measures Your stroke team indicates they want to measure the outcomes of their patients. What are the considerations in selecting measures? Page 4

Ideal Measures for Outcomes You need a well developed evaluative measure with strong psychometric properties for use in clinical practice. -An evaluative measure assesses an individual or group at baseline and again at one or two points, usually to determine if change has occurred. It needs to be responsive to reflect change in patient status when it occurs. General Considerations Is there a cost associated with use of the measure? How long does it take to complete / administer the measure? How much equipment is required? Is the measure available in the language of the patient? Can it be completed by a proxy (family member, health professional)? Page 5

Consider the Content of the Measure On inspection, does the measure look as if it includes all important areas? - Determine how it was developed; who contributed? Do the items look appropriate for your patients and do you think that most patients will change on many items? - Check the response options: VASs; dichotomous; several ordinal categories. How many is enough? This has impact on reliability and responsiveness. What are important Psychometric properties of Measures? Page 6

Reviewing Reliability Reliability: the degree to which A measure is free from random error The observed score is different from the true score Types of Reliability **Stability test-retest (longitudinal) Inter- and Intra-rater Assessed by correlation coefficients: Cronbach s alpha, Intra-class Correlation Coefficient (ICC), Kappa or Weighted Kappa (K or WK) etc. Page 7

Verifying Validity Validity: the extent to which a measure really measures what it claims to measure Reflects an absence of both random and systematic error (bias) Not an all or none property rather a matter of degree Types of Validity Content Criterion-Related - Concurrent (SIS; FIM, Barthel: SF-12; SF-36) - Predictive (BBS; falls) Construct - Convergent (RNL; QOL) - Discriminant (divergent) (Zung; MCS & PCS) - *Known Groups (discriminative) - *Longitudinal (correlate change scores) Page 8

Responsiveness What is it? Unlike reliability and validity it is not a traditional psychometric property. How is it defined? Many ways / no consensus. How is it evaluated? Even more ways. Terwee et al Qual Life Res 2003;12:349-62 How should it be reported? Quantitatively. How should it be interpreted? Two main approaches. What are we trying to measure? Meaningful change to patient, to health professional, to payer Minimal Clinically Important Difference (MCID) (MID) Page 9

Minimal Clinically Important Difference (MCID) (MID) - the smallest difference in score in the domain of interest which patients perceive as beneficial... Jaeschke et al. Controll Clin Trials. 10:407-15, 1989 Interpretation of Change Interpretability means the capacity to assign a qualitative meaning to a quantitative score. Ware & Keller. Quality of life and Pharmacoeconomics in Clinical Trials, Lippencott Raven, 1996:445-60. This score can be at a single point in time or one that reflects change over time. Page 10

Today we have estimates of MCID values for many measures but few for stroke measures* *Berg Balance Scale (0-56) 6 points *2 minute Walk Test 19 m Lower Ext. Functional Scale (0-80) 9 points *Box and Block Test 7 blocks *6 Minute Walk 54m (95% CI 33-71m) *SF-36: 8 Scales (0-100) ~3-6 points *Sickness Impact Profile (0-100) ~3-5 points *Stroke Impact Scale (0-100) ~10-15 points Summary Need to consider all the factors Reliability Validity Responsiveness Page 11

What domains should we measure in Stroke patients? International Classification of Functioning ( Health condition) Body Functions & Structure Activity Participation Environmental Factors Personal Factors WHO International Classification of Functioning and Disability, ICF (International Classification of Impairments, Disabilities and Handicaps, ICIDH) Page 12

ICF Brief Core Set for Stroke ICF component ICF code ICF category title Body functions b110 86 b114 82 b730 75 b167 50 b140 25 b144 Body Structures s110 7 s730 Consciousness functions Orientation functions Muscle power functions Mental functions of language Attention functions Memory functions Structure of brain Structure of upper extremity Structure of Lower extremity ICF Brief Core Set for Stroke Activities and participation Walking Speaking Toileting Eating Dressing Communicating-receiving spoken messages Environmental Factors Immediate Family Health Care providers Health Care System Page 13

What measures are commonly used in the literature? t Stroke Outcome measures in SREBR 1968-2004 Total number of outcome citations = 1105 Large number of authors created own study specific outcomes = 175 Physical assessments not using a single standardized scale = 178 citations Citations of previously published scales= 752 Only 35 previously published assessment scales were cited 5 or more times Page 14

Most often cited outcomes 1968-2004 No. of citations BI 98 Timed walk assessments (varying times & distances) 44 Fugl-Meyer Assessment of Stroke Recovery 38 FIM 29 Modified Ashworth Scale 23 Nottingham EADL 19 Nottingham Health Profile 16 MMSE 15 Frenchay Activities Inventory 15 SF-36 15 Motor Assessment Scale 14 HADS 12 Action Reach Arm Test 12 Rankin Handicap/modified difi d Rankin/Oxford Handicap 11 GHQ-28 10 Rivermead Mobility Inventory 10 Motricity Index 9 HRSD 9 PICA 9 Berg Balance Scale 9 9-hole peg test 9 Scandinavian Stroke Scale 8 Brunnstrom scale 7 What measures are Canadian Clinicians using? Nicol Korner Bitensky et al surveyed about 1800 rehabilitation clinicians in Canada by telephone Asked to answer scenarios concerning typical stroke patients Asked about what measures they used Page 15

PT Ambulation/Mobility Assessments % 140 120 100 80 60 40 20 0 6 Minutes Walk Test 10 Minute Walk Test Ambulatio tion + Mobility + Walking 2 Minute Walk Test ElderlyMobility Scale 3 Minute Walk Test 5m Walk Test 10m Walk Test Timed Walking Speed Test Dynamic Gait Index 1 Minute Walk Test Duke Mobility TUG Community Rehab Acute Depression/Mood Across Disciplines 60 50 40 % 30 20 10 0 Nottingham Health profile Beck Depression Scale Sadness Scale Geriatric Depression Scale Emotional/Depression SLP PT OT Page 16

PT Use of Balance Assessments Percentage 180 160 140 120 100 80 60 40 20 0 Berg Balance Scale Community Mobility TInnetti Balance Equitest Romberg PASS Balance master balance sitting /standing balance Hierarchial Balance and Mobilty Force platform sit-to-stand Timed Standing Balance Foam and Dome Community Rehab Acute Speech/Language Assessments 120 100 % 80 60 40 20 0 Community Rehab Acute Page 17

OT Use of Visual Perception Assessments 80 70 60 50 % 40 30 20 10 0 MVPT Rivermead BIT Rivermead Perceptual Single letter cancellation Star Cancellation Test Visual Perception OSOT Perceptual Battery Neglect Perception Clock Drawing Test Test of Everyday Attention MVPT-3 Bell's Test TVPS perceptual Hooper Visual Organization Frosting Spatial 3D or 2D Block Design Visual Perception Index BIVAPA Community Rehab Acute OT Use of Cognitive/Memory Assessments % 80 70 60 50 40 30 20 10 0 Community Rehab Acute Page 18

Summary of Survey findings Inconsistent use of measures Frequently used only at admission and not at discharge Not necessarily using measures tested for responsiveness Consensus Panel Principles for selection Tried to select measures that worked across the continuum Can be interprofessional administration Can be administered in reasonable time at beginning and end of Rehabilitation Minimize cost of training Ideally available in English and French. Page 19

Consensus Process Divided panel into small groups Technique de Recherche D Information par Animation d un Groupe D experts (TRIAGE) by Desrosiers was used all the proposed tools are written on cardboard cards a number of headings are placed on the wall including MEMORY, CANDIDATES,, WASTE BASKET, REFRIGERATOR, VETO AND SELECTION. Sort the tools into the categories and narrow the selections Summary of Body, Function and structure Tools Measures of Stroke Severity- Orpington or NIHSS Medical Comorbidities Charlson Upper Extremity Structure and Function- Chedoke McMaster Stroke Assessment Lower extremity- Chedoke McMaster Stroke Assessment Spasticity Modified Ashworth Scale Alternate use the spasticity subscale of CMSA Page 20

Summary of Body, Function and structure Tools Visual Perception- Comb and Razor( interdisciplinary admin) Behavioural Inattention Test ( Sunnybrook NAP) Line Bisection ( Unilateral Spatial Neglect) Alternates- Rivermead, OSOT and MVPT Language Screening in Acute and followup» Frenchay Aphasia Screening Test ( FAST) Impairment» Boston Diagnostic Aphasia Assessment (homework) Speech Intelligibility Tool- none used in the literature Summary of Body, Function and structure Tools Cognition- Screening» SCORE team Recommended MMSE and Line Bisection + Semantic fluency but not useful in rehabilitation followup» Initial selection Cambridge (CAM-COG) Page 21

Summary of Body, Function and structure Tools Depression- -Hospital Anxiety Depression Scale (SCORE Screening tool) -stroke Aphasic Depression Questionnaire Alternates -?Geriatric Depression Scale -? Beck Depression Scale -?PHQ-9 Activity Assessment Scales Upper Extremity- Chedoke Arm and Hand Activity Inventory Box and Block Nine Hole peg test Lower extremity- Chedoke inventory Timed up and Go 6 minute Walk test Alternate- Rivermead Mobility index Balance- Berg Balance Scale Page 22

Activity Assessment Scales Functional Communication- Amsterdam(ANELT) Alternate- ASHA-Functional Assessment of Communication of Activities of Daily Living (ASHA- FACS) Consultation Required with Aphasia experts Activity Assessment Scales Activities of Daily Living- -Functional Independence Measure (FIM) - Request CIHI-NRS to calculate Barthel Index from the FIM for comparison with European research Instrumental t Activities iti of Daily Living-i -Reintegration to Normal living Index (RNL)( self- report) -Life H-Leisure Section Page 23

Participation -Stroke Impact Scale - Reintegration to Normal Living Index What is the difference between a rehabilitation outcome measure and a process indicator? Page 24

Components of Rehab for Evaluation Process measures explored for: Acute care Inpatient rehab Day hospital Ambulatory setting Home-based care Community programs Process Measures Some Common Indicators of Access Days waiting to enter stroke rehabilitation program all settings Days waiting for access to outpatient and community services by provider type Types of therapy services and providers Duration and intensity of services by provider type ALC Days waiting to be discharged from inpatient rehab Distribution of rehab patients by FRG Length of stay in rehab setting Page 25

Acute Care Rehab provided in inpatient acute care setting during early days after admission Time to assessments for rehab potential and needs Intensity and duration of rehab services by provider type Standardized tool scores for assessment and functional outcomes Time between referral for rehab and transfer to rehab services Referral rates for community-based rehab Inpatient Rehabilitation Intensity and duration of rehab services by provider type Stroke unit number of patients treated on stroke rehab units Documentation of rehab plan e.g. task specific therapy Details about environment Patient education Page 26

Rehab provided in day hospitals, outpatient ambulatory, and other community settings Time to assessments for rehab potential and needs Time from referral to commencement of therapy Intensity and duration of rehab services by provider type Standardized tool scores for assessment and outcomes Details about environment Patient education Social support Primary care utilization Fitness to drive Caregiver burden Vocational assessments Some Cautionary Tales Electronic stroke Referral service used in acute care for referral to rehab the Alpha FIM Charlson Comorbidities Chedoke Challenges in training all staff, staff turnover, trusting the measure SCORE project uses five outcome measures FIM, Box and Block, 6 minute Walk test, Chedoke arm and Hand inventory, Chedoke McMaster Stroke Assessment and Euroqol-5D Challenges in completion. Page 27

Some Thoughts on Choosing Outcomes Less is More avoid the temptation to want to answer all the questions on your first attempt Consider the time in administration Consider the time to train people Consider how much equipment is needed Consider whether it will change your practice Some Thoughts on Choosing Outcomes Pick tools that are transdisciplinary if possible Think about who is going to use the Results of all your work in collecting outcomes Is this for you as a clinician to plan your practice? Do you want to show those administration people that you make a difference? Do you want to show the fundors that you make a difference ( What do you think they are interested in?) Page 28

Clinical vs Process measures Do you want to measure team or program operations or are you interested in patient recovery Is there an efficiency issue that needs to be measured Objectives By the end of this presentation should be able to: 1. Identify three reasons for selecting a core set of rehabilitation outcome measures for Canada 2. Name psychometric issues that must be considered when selecting responsive outcome measures 3. Name some important consensus based measures of Stroke Rehabilitation outcomes using the International Classification of Functioning framework 4. Recognize stroke rehabilitation system performance indicators that could be used at their organization Page 29

Conclusions 1. A core set of rehabilitation outcome measures for Canada is required as there is variability in current practice, need to consistently evaluate system and compare across provinces in Canadian Stroke Strategy 2. issues that must be considered when selecting responsive outcome measures include the reliability, validity and responsiveness of the measure. These properties can now be estimated quantitatively Conclusions 3. Good quality Stroke Rehabilitation outcomes can be identified for all aspects of the the International Classification of Functioning i.e. Body Structures and Function, Activity and Participation 4. System performance indicators are measures of how groups of patients are managed and involve measures of quality and efficiency of care Page 30

Next Steps Dissemination through the Canadian stroke Strategy and Ontario Stroke System Discussions with CIHI National Rehabilitation Recording System to adopt measures Page 31