Lessons Learned from measuring what matters · Disease Questionnaire-CRQ (1987) SMAF ( 1988) Berg...
30
LESSONS LEARNED FROM MEASURING WHAT MATTERS Nancy E. Mayo BSc(PT) PhD Nov 2013
Transcript of Lessons Learned from measuring what matters · Disease Questionnaire-CRQ (1987) SMAF ( 1988) Berg...
LESSONS LEARNED FROM MEASURING WHAT MATTERS
Nancy E Mayo BSc(PT) PhDNov 2013
Why Measure
Discriminate (screening measures)
Evaluate
Predict
Kirshner B Guyatt GH A methodologic framework for assessing health indices J Chronic Dis 1985 3827-36
Understand and to fix (Lord Kelvin)
(Canrsquot understand what you cannot measure and you cannot fix what you cannot understand)
What matters
Kerr White and the 5 Drsquos
Death
Disease
Discomfort
Disability
Dissatisfaction
(Destitution)
White KL Discussion of An Historical View of Teaching of Medical Care Administration American Journal of Public Health and the Nations Health 1969 59(Suppl 1)61-66
What matters To whom
Outcomes Stakeholders
Mortality
Morbidity
Disability
Satisfaction
Cost
QOL
Patient person client
Clinician
Family
Society
Whatrsquos Canada got to do with this
Long history of measurement
Strong roots in measures for rehabilitation
Disease-specific measures primarily
Single public payer for health care may be impetus for evaluating outcomes
Canadian eh
McGill Pain Scale (1971)
Spitzer index (1981)
Self rated health ( 1982)
WOMAC ( 1982)
6MWT (1985)
RNL ( 1987)
Chronic Respiratory Disease Questionnaire-CRQ (1987)
SMAF ( 1988)
Berg Balance Scale (1989)
IBDQ (1989)
PRO Non-PRO ProxyClinician
Canadian eh
COPM (1991)
GAS (19681992)
TEMPA (1993)
CMSA (1994)
Fatigue Impact Scale (1994)
Disability Assessment in Dementia (1994)
Pain Catastrophizing Scale ( 1995)
Activities Balance Confidence (ABC) (1995)
HUI (1996)
Toronto Extremity Salvage Score (TESS) (1996)
DASH (1996)
Quebec Back Pain Disability Scale (1996)
MHAVIE (1996)
McGill QOL (1997)
STREAM (1999)
LEFS (1999)
PRO Non-PRO ProxyClinician
Canadian eh
LIFE-H (2002)
MQE (2002)
PBSI (2003)
MOCA (2005)
Early Physical Function Post-Stroke (EPF-3d) (2009)
Manitoba IBD Index (2009)
Functional Recovery Stroke (F3m) (2009)
GDS-Stroke (2010)
Stroke Arm Ladder (2011)
PBMSI (2013)
B-CAM (2013)
PRO Non-PRO Both
LESSONS LEARNED IN DEVELOPING 37 MEASURES
New and Old Terminology
PRO ldquoany report of the status of a patientrsquos health condition that comes
directly from the patient without interpretation of the patientrsquos response by a clinician or anyone elserdquo
Non-PRO - ClinRO Physical Performance
Directly measured (6MWT Barthel Index) Self-reported (Barthel Index) Proxy-reported (Barthel Index)
Physical exam Clinician assessed (APGAR)
Non-PRO - ObsRO Behaviour
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Why Measure
Discriminate (screening measures)
Evaluate
Predict
Kirshner B Guyatt GH A methodologic framework for assessing health indices J Chronic Dis 1985 3827-36
Understand and to fix (Lord Kelvin)
(Canrsquot understand what you cannot measure and you cannot fix what you cannot understand)
What matters
Kerr White and the 5 Drsquos
Death
Disease
Discomfort
Disability
Dissatisfaction
(Destitution)
White KL Discussion of An Historical View of Teaching of Medical Care Administration American Journal of Public Health and the Nations Health 1969 59(Suppl 1)61-66
What matters To whom
Outcomes Stakeholders
Mortality
Morbidity
Disability
Satisfaction
Cost
QOL
Patient person client
Clinician
Family
Society
Whatrsquos Canada got to do with this
Long history of measurement
Strong roots in measures for rehabilitation
Disease-specific measures primarily
Single public payer for health care may be impetus for evaluating outcomes
Canadian eh
McGill Pain Scale (1971)
Spitzer index (1981)
Self rated health ( 1982)
WOMAC ( 1982)
6MWT (1985)
RNL ( 1987)
Chronic Respiratory Disease Questionnaire-CRQ (1987)
SMAF ( 1988)
Berg Balance Scale (1989)
IBDQ (1989)
PRO Non-PRO ProxyClinician
Canadian eh
COPM (1991)
GAS (19681992)
TEMPA (1993)
CMSA (1994)
Fatigue Impact Scale (1994)
Disability Assessment in Dementia (1994)
Pain Catastrophizing Scale ( 1995)
Activities Balance Confidence (ABC) (1995)
HUI (1996)
Toronto Extremity Salvage Score (TESS) (1996)
DASH (1996)
Quebec Back Pain Disability Scale (1996)
MHAVIE (1996)
McGill QOL (1997)
STREAM (1999)
LEFS (1999)
PRO Non-PRO ProxyClinician
Canadian eh
LIFE-H (2002)
MQE (2002)
PBSI (2003)
MOCA (2005)
Early Physical Function Post-Stroke (EPF-3d) (2009)
Manitoba IBD Index (2009)
Functional Recovery Stroke (F3m) (2009)
GDS-Stroke (2010)
Stroke Arm Ladder (2011)
PBMSI (2013)
B-CAM (2013)
PRO Non-PRO Both
LESSONS LEARNED IN DEVELOPING 37 MEASURES
New and Old Terminology
PRO ldquoany report of the status of a patientrsquos health condition that comes
directly from the patient without interpretation of the patientrsquos response by a clinician or anyone elserdquo
Non-PRO - ClinRO Physical Performance
Directly measured (6MWT Barthel Index) Self-reported (Barthel Index) Proxy-reported (Barthel Index)
Physical exam Clinician assessed (APGAR)
Non-PRO - ObsRO Behaviour
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
What matters
Kerr White and the 5 Drsquos
Death
Disease
Discomfort
Disability
Dissatisfaction
(Destitution)
White KL Discussion of An Historical View of Teaching of Medical Care Administration American Journal of Public Health and the Nations Health 1969 59(Suppl 1)61-66
What matters To whom
Outcomes Stakeholders
Mortality
Morbidity
Disability
Satisfaction
Cost
QOL
Patient person client
Clinician
Family
Society
Whatrsquos Canada got to do with this
Long history of measurement
Strong roots in measures for rehabilitation
Disease-specific measures primarily
Single public payer for health care may be impetus for evaluating outcomes
Canadian eh
McGill Pain Scale (1971)
Spitzer index (1981)
Self rated health ( 1982)
WOMAC ( 1982)
6MWT (1985)
RNL ( 1987)
Chronic Respiratory Disease Questionnaire-CRQ (1987)
SMAF ( 1988)
Berg Balance Scale (1989)
IBDQ (1989)
PRO Non-PRO ProxyClinician
Canadian eh
COPM (1991)
GAS (19681992)
TEMPA (1993)
CMSA (1994)
Fatigue Impact Scale (1994)
Disability Assessment in Dementia (1994)
Pain Catastrophizing Scale ( 1995)
Activities Balance Confidence (ABC) (1995)
HUI (1996)
Toronto Extremity Salvage Score (TESS) (1996)
DASH (1996)
Quebec Back Pain Disability Scale (1996)
MHAVIE (1996)
McGill QOL (1997)
STREAM (1999)
LEFS (1999)
PRO Non-PRO ProxyClinician
Canadian eh
LIFE-H (2002)
MQE (2002)
PBSI (2003)
MOCA (2005)
Early Physical Function Post-Stroke (EPF-3d) (2009)
Manitoba IBD Index (2009)
Functional Recovery Stroke (F3m) (2009)
GDS-Stroke (2010)
Stroke Arm Ladder (2011)
PBMSI (2013)
B-CAM (2013)
PRO Non-PRO Both
LESSONS LEARNED IN DEVELOPING 37 MEASURES
New and Old Terminology
PRO ldquoany report of the status of a patientrsquos health condition that comes
directly from the patient without interpretation of the patientrsquos response by a clinician or anyone elserdquo
Non-PRO - ClinRO Physical Performance
Directly measured (6MWT Barthel Index) Self-reported (Barthel Index) Proxy-reported (Barthel Index)
Physical exam Clinician assessed (APGAR)
Non-PRO - ObsRO Behaviour
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
What matters To whom
Outcomes Stakeholders
Mortality
Morbidity
Disability
Satisfaction
Cost
QOL
Patient person client
Clinician
Family
Society
Whatrsquos Canada got to do with this
Long history of measurement
Strong roots in measures for rehabilitation
Disease-specific measures primarily
Single public payer for health care may be impetus for evaluating outcomes
Canadian eh
McGill Pain Scale (1971)
Spitzer index (1981)
Self rated health ( 1982)
WOMAC ( 1982)
6MWT (1985)
RNL ( 1987)
Chronic Respiratory Disease Questionnaire-CRQ (1987)
SMAF ( 1988)
Berg Balance Scale (1989)
IBDQ (1989)
PRO Non-PRO ProxyClinician
Canadian eh
COPM (1991)
GAS (19681992)
TEMPA (1993)
CMSA (1994)
Fatigue Impact Scale (1994)
Disability Assessment in Dementia (1994)
Pain Catastrophizing Scale ( 1995)
Activities Balance Confidence (ABC) (1995)
HUI (1996)
Toronto Extremity Salvage Score (TESS) (1996)
DASH (1996)
Quebec Back Pain Disability Scale (1996)
MHAVIE (1996)
McGill QOL (1997)
STREAM (1999)
LEFS (1999)
PRO Non-PRO ProxyClinician
Canadian eh
LIFE-H (2002)
MQE (2002)
PBSI (2003)
MOCA (2005)
Early Physical Function Post-Stroke (EPF-3d) (2009)
Manitoba IBD Index (2009)
Functional Recovery Stroke (F3m) (2009)
GDS-Stroke (2010)
Stroke Arm Ladder (2011)
PBMSI (2013)
B-CAM (2013)
PRO Non-PRO Both
LESSONS LEARNED IN DEVELOPING 37 MEASURES
New and Old Terminology
PRO ldquoany report of the status of a patientrsquos health condition that comes
directly from the patient without interpretation of the patientrsquos response by a clinician or anyone elserdquo
Non-PRO - ClinRO Physical Performance
Directly measured (6MWT Barthel Index) Self-reported (Barthel Index) Proxy-reported (Barthel Index)
Physical exam Clinician assessed (APGAR)
Non-PRO - ObsRO Behaviour
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Whatrsquos Canada got to do with this
Long history of measurement
Strong roots in measures for rehabilitation
Disease-specific measures primarily
Single public payer for health care may be impetus for evaluating outcomes
Canadian eh
McGill Pain Scale (1971)
Spitzer index (1981)
Self rated health ( 1982)
WOMAC ( 1982)
6MWT (1985)
RNL ( 1987)
Chronic Respiratory Disease Questionnaire-CRQ (1987)
SMAF ( 1988)
Berg Balance Scale (1989)
IBDQ (1989)
PRO Non-PRO ProxyClinician
Canadian eh
COPM (1991)
GAS (19681992)
TEMPA (1993)
CMSA (1994)
Fatigue Impact Scale (1994)
Disability Assessment in Dementia (1994)
Pain Catastrophizing Scale ( 1995)
Activities Balance Confidence (ABC) (1995)
HUI (1996)
Toronto Extremity Salvage Score (TESS) (1996)
DASH (1996)
Quebec Back Pain Disability Scale (1996)
MHAVIE (1996)
McGill QOL (1997)
STREAM (1999)
LEFS (1999)
PRO Non-PRO ProxyClinician
Canadian eh
LIFE-H (2002)
MQE (2002)
PBSI (2003)
MOCA (2005)
Early Physical Function Post-Stroke (EPF-3d) (2009)
Manitoba IBD Index (2009)
Functional Recovery Stroke (F3m) (2009)
GDS-Stroke (2010)
Stroke Arm Ladder (2011)
PBMSI (2013)
B-CAM (2013)
PRO Non-PRO Both
LESSONS LEARNED IN DEVELOPING 37 MEASURES
New and Old Terminology
PRO ldquoany report of the status of a patientrsquos health condition that comes
directly from the patient without interpretation of the patientrsquos response by a clinician or anyone elserdquo
Non-PRO - ClinRO Physical Performance
Directly measured (6MWT Barthel Index) Self-reported (Barthel Index) Proxy-reported (Barthel Index)
Physical exam Clinician assessed (APGAR)
Non-PRO - ObsRO Behaviour
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Canadian eh
McGill Pain Scale (1971)
Spitzer index (1981)
Self rated health ( 1982)
WOMAC ( 1982)
6MWT (1985)
RNL ( 1987)
Chronic Respiratory Disease Questionnaire-CRQ (1987)
SMAF ( 1988)
Berg Balance Scale (1989)
IBDQ (1989)
PRO Non-PRO ProxyClinician
Canadian eh
COPM (1991)
GAS (19681992)
TEMPA (1993)
CMSA (1994)
Fatigue Impact Scale (1994)
Disability Assessment in Dementia (1994)
Pain Catastrophizing Scale ( 1995)
Activities Balance Confidence (ABC) (1995)
HUI (1996)
Toronto Extremity Salvage Score (TESS) (1996)
DASH (1996)
Quebec Back Pain Disability Scale (1996)
MHAVIE (1996)
McGill QOL (1997)
STREAM (1999)
LEFS (1999)
PRO Non-PRO ProxyClinician
Canadian eh
LIFE-H (2002)
MQE (2002)
PBSI (2003)
MOCA (2005)
Early Physical Function Post-Stroke (EPF-3d) (2009)
Manitoba IBD Index (2009)
Functional Recovery Stroke (F3m) (2009)
GDS-Stroke (2010)
Stroke Arm Ladder (2011)
PBMSI (2013)
B-CAM (2013)
PRO Non-PRO Both
LESSONS LEARNED IN DEVELOPING 37 MEASURES
New and Old Terminology
PRO ldquoany report of the status of a patientrsquos health condition that comes
directly from the patient without interpretation of the patientrsquos response by a clinician or anyone elserdquo
Non-PRO - ClinRO Physical Performance
Directly measured (6MWT Barthel Index) Self-reported (Barthel Index) Proxy-reported (Barthel Index)
Physical exam Clinician assessed (APGAR)
Non-PRO - ObsRO Behaviour
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Canadian eh
COPM (1991)
GAS (19681992)
TEMPA (1993)
CMSA (1994)
Fatigue Impact Scale (1994)
Disability Assessment in Dementia (1994)
Pain Catastrophizing Scale ( 1995)
Activities Balance Confidence (ABC) (1995)
HUI (1996)
Toronto Extremity Salvage Score (TESS) (1996)
DASH (1996)
Quebec Back Pain Disability Scale (1996)
MHAVIE (1996)
McGill QOL (1997)
STREAM (1999)
LEFS (1999)
PRO Non-PRO ProxyClinician
Canadian eh
LIFE-H (2002)
MQE (2002)
PBSI (2003)
MOCA (2005)
Early Physical Function Post-Stroke (EPF-3d) (2009)
Manitoba IBD Index (2009)
Functional Recovery Stroke (F3m) (2009)
GDS-Stroke (2010)
Stroke Arm Ladder (2011)
PBMSI (2013)
B-CAM (2013)
PRO Non-PRO Both
LESSONS LEARNED IN DEVELOPING 37 MEASURES
New and Old Terminology
PRO ldquoany report of the status of a patientrsquos health condition that comes
directly from the patient without interpretation of the patientrsquos response by a clinician or anyone elserdquo
Non-PRO - ClinRO Physical Performance
Directly measured (6MWT Barthel Index) Self-reported (Barthel Index) Proxy-reported (Barthel Index)
Physical exam Clinician assessed (APGAR)
Non-PRO - ObsRO Behaviour
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Canadian eh
LIFE-H (2002)
MQE (2002)
PBSI (2003)
MOCA (2005)
Early Physical Function Post-Stroke (EPF-3d) (2009)
Manitoba IBD Index (2009)
Functional Recovery Stroke (F3m) (2009)
GDS-Stroke (2010)
Stroke Arm Ladder (2011)
PBMSI (2013)
B-CAM (2013)
PRO Non-PRO Both
LESSONS LEARNED IN DEVELOPING 37 MEASURES
New and Old Terminology
PRO ldquoany report of the status of a patientrsquos health condition that comes
directly from the patient without interpretation of the patientrsquos response by a clinician or anyone elserdquo
Non-PRO - ClinRO Physical Performance
Directly measured (6MWT Barthel Index) Self-reported (Barthel Index) Proxy-reported (Barthel Index)
Physical exam Clinician assessed (APGAR)
Non-PRO - ObsRO Behaviour
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
LESSONS LEARNED IN DEVELOPING 37 MEASURES
New and Old Terminology
PRO ldquoany report of the status of a patientrsquos health condition that comes
directly from the patient without interpretation of the patientrsquos response by a clinician or anyone elserdquo
Non-PRO - ClinRO Physical Performance
Directly measured (6MWT Barthel Index) Self-reported (Barthel Index) Proxy-reported (Barthel Index)
Physical exam Clinician assessed (APGAR)
Non-PRO - ObsRO Behaviour
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
New and Old Terminology
PRO ldquoany report of the status of a patientrsquos health condition that comes
directly from the patient without interpretation of the patientrsquos response by a clinician or anyone elserdquo
Non-PRO - ClinRO Physical Performance
Directly measured (6MWT Barthel Index) Self-reported (Barthel Index) Proxy-reported (Barthel Index)
Physical exam Clinician assessed (APGAR)
Non-PRO - ObsRO Behaviour
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Measures can contain elements of PRO and Non-PRO Source of information on the construct is
irrelevant to the measurement of the construct
Measures of physical function and cognition can easily combine PRO and Non-PRO items and introduce flexibility in measurement Early Physical Function Post-Stroke (EPF-3d)
Functional Recovery Stroke (F3m)
Stroke Arm Ladder
B-CAM
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Response shift Physical Function
Construct RS Potential
Non-PRO
Performance Units (m msec etc)limitation need for assistancesupervision)
NO
Self-reported Limitation NO
Observer reported Limitation NO
PRO Difficulty YES
Barclay-Goddard R Lix LM Tate R Weinberg L Mayo NE Health-related quality of life after stroke does response shift occur in self-perceived physical function Arch Phys Med Rehabil 2011 Nov92(11)1762-9
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
CANADA EARLY ADOPTER OF WHO INTERNATIONAL CLASSIFICATION OF FUNCTION (ICF)
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Body function Impairments
Body functions are physiological functions of body systems including psychological functions
Impairments defined in terms of problems with
PRO level impairments are synonymous with symptoms
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Activity Activity Limitation
Activities that are normal for any person
Limitation is defined in terms of Capacity (what they can do) ClinRO ObsRO
Includes concept of assistance or supervision
PRO overestimates capacity
Performance (what they do do) ClinROObsRO Includes concept of assistance or supervision
PRO overestimates performance
Difficulty PRO Susceptible to response shift
MEASURE CAN DO DOES DO amp DIFFICULTY
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Participation Participation restrictions
Takes societal point of view on roles interpersonal relationships major life areas
(education work and economic life) and community social and civic life
Specifics defined by the person Eg Work is societal perspective but person defines
their particular job
Performance Frequency duration
Satisfaction with
Productivity (work)
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
ICF provides an international common language and universal conceptual framework for describing functioning disability and health
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Indicates WHAT Not HOW to measure
H e a lth c o n d itio n
(d is e a s e tra u m a )
E n viro n m e n ta l
fa c to rs
P e rs o n a l
fa c to rs
C o n te x tu a l fa c to rs
T h e b io p s yc h o s o c ia l m o d e l o f fu n c tio n in g a n d d is a b ility
A c tiv ityB o d y fu n c tio n
a n d b o d y s tru c tu reP a rtic ip a tio nP a rtic ip a tio n
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Lessons Learned
ICF components need different
Conceptual approaches (models)
Therefore different types of measures
Impairments ndash Symptoms
Frequency Duration Intensity Impact
First 3 may be formative
Impact may be reflectivemay be formative
Do not easily go together in one measure
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Lessons Learned
Activity Participation
Likely reflective ndash true latent ndash model
Fix the construct the items will change
Hierarchical by definition
People move up and down the ldquoladderrdquo
Suitable for RaschIRT approaches to creating total scores
Likely formative ndashcomposite measure
Items form the construct
A count of the number of family and societal roles the person takes on is a good representation of participation
Not suitable for RaschIRT
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Not everything can be added up
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
WESTERN ONTARIO ANDMCMASTER UNIVERSITIESOsteoarthritis Index(WOMAC)
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
Nottingham Health Profile
Joint mobilityMobility (general)Muscle power StrengthPainStability of jointsEmotional functionEngergy amp Drive functionsGait AmbulationStiffnessMuscle enduranceSexual functionsSleep
SF-36
INSTRUCTIONS This survey asks foryour views about your health Thisinformation will help keep track of howyou feel and how well you are able todo your usual activities
Answer every question by markingthe answer as indicated If you arunsure about how to answer a
question please give the best answer you can
HealthStatus Measures
Mapping
ICF ~ Content Validity
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Examples
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Patient Clinician Family
Morbidity
Presence and severity of diseases
Impairments
Symptoms (whatfrequencyduration intensity impact)
Physiological function cells tissues organs or markers there of macro and micro structure of cells tissues organs
Behaviour (what frequency duration botherimpact on familycaregivers)
What matters - To whom
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Patient Clinician Family
Activity Limitations (mobility self-care)
Satisfaction withDifficulty withImportance ofPriority
Capacity to Capacity toPerformance in
What matters - To whom
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Patient Clinician Family
Participation restrictions
WhatFrequency and durationSatisfaction withDifficulty withImportance ofPriority
WhatFrequency and durationPerformance
WhatFrequency and duration
Health
Perceived health Health status No data (both)
What matters - To whom
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Patient Clinician Family
Quality of Life
ComponentsShortfallsImportancePriorities
Global SymptomsActivityParticipation
Society
Personalized measures Single Index QALY
Standardized Index
What matters - To whom
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
Summary
Measurement needs considerable thought
If we do not get the measurement correct the rest will be flawed Understanding and fixing
One size may not fit all Personalized measures
One measure may not capture all that is relevant Need statistical methods for multiple outcomes
Not all things can be added up
Different constructs have different conceptual models Formative (symptoms participation health status) Reflective (true latents)
One size may not fit all
One size may not fit all
![Full page fax print - COnnecting REpositoriespengadunan getah (Nasir dan Ratnam, 1989: Baker et at. , 1974: Nastr dan Choo, 1989). Suatu pro]ek penyelidikan untuk menghasiåkan geiah](https://static.fdocuments.us/doc/165x107/5f28637d59ed1835240e2b09/full-page-fax-print-connecting-repositories-pengadunan-getah-nasir-dan-ratnam.jpg)
