Introduction to Person-

Centered Assessment

Karon Cook, PhDNan Rothrock, PhD

HealthMeasures User ConferenceSept 27, 2017

Why Measure Patient Centered

Outcomes?

Can you hear me now?

Patient’s Perspective

Patient ReportedOutcomes

Why HealthMeasures?

•State-of-the-science methodology to be psychometrically sound

•Based on a nationally representative samples

•Well-suited for measuring outcomes in longitudinal studies

•Translations available in many languages

•Growing bolus of comparative research

All models are wrong; the practical question is how wrong do they have to be not to be useful.

--Box and Draper, 1987, p. 74

Item Response Theory

Fredrick Lord

What’s Different about “Modern” Measurement Models?D

iffic

ulty

/Int

ensi

ty

Sad

Suicidal

Basic Idea Probability can be used to estimate where

someone is on a latent trait.

I am too tired to do errands

No Yes

low severeFATIGUE

Different Scoring Questions

• Classical: What was the sum of the item scores?• Modern:

– Given what is known about the items and how persons responded

– What is there most likely level of the symptom or outcome?

Frankly, it’s a lot of trouble

Item Response Theory

Advantages

• Adaptive testing (CAT)

• Diagnosis of item strengths and weaknesses

• Linking scores across measures and groups

• Many others.

LEARN MORE GOOGLE: karoncook YouTube, “A Conceptual Introduction to Item Response Theory”

The Measures of HealthMeasures

Available HealthMeasures

• Types of Measures• Fixed length short forms

• Profiles• Computer Adaptive Tests (CATs)• Performance-based tests of function

• Subset of item bank

• Single domain

• Off-the-shelf or custom

• Usually 4-10 items

• Collection of short forms from different domains

• Tailored: item selection based on previous responses

• Single domain

• Usually 4-6 items (range 4-12)

• Administered by trained person

• Function: cognitive, motor, sensory

Domains

PROMIS Adult Measures

HealthMeasures.net/PROMIS

PROMIS Pediatric Measures

HealthMeasures.net/PROMIS

Neuro-QoL Adult Measures

HealthMeasures.net/Neuro-QoL

Neuro-QoL Pediatric Measures

HealthMeasures.net/Neuro-QoL

ASCQ-Me Measures

HealthMeasures.net/ascq-me

NIH Toolbox Adult

NIH Toolbox Pediatric

MotorSensationCognition

NIH Toolbox Performance Tests of Function

• Executive Function

• Attention

• Episodic Memory

• Language

• Processing Speed

• Working Memory

• Audition

• Visual Acuity

• Vestibular Balance

• Olfaction

• Taste

• Dexterity

• Grip Strength

• Standing Balance

• Gait Speed

• Endurance

Example NIH Toolbox Cognition

Picture Sequence Memory Test

Lists of Measures

Search & View Measures

Selecting the Right Measure

Selecting the Right Measure

Recommended HealthMeasures

• PROMIS Profiles• PROMIS Global• Neuro-QoL short forms – neurologic conditions• ASCQ-Me short forms – sickle cell disease• NIH Toolbox batteries for Cognition, Emotion,

Motor, Sensation

Recommendations for Specific Patient Populations• Anemia• Cancer – adult &

ped• Heart Failure• Hepatitis C• Fibromyalgia• IBD• Ortho Surgery• OA & RA• Sickle Cell• Stroke• Pediatric Asthma

Preferred PROMIS Short Forms

General Guide

• Aims of assessment

• Global or specific outcomes

• Disease-specific outcomes versus universal outcomes

• Needed reliability, precise, and length

“Picking an instrument is like picking a life-partner. You can, and you should, weed out the ones that have goals that are different from yours, pay attention to empirical evidence, and remember that you will have to make compromises. The best you can do is find a good match, not a perfect one.”

Guide to Selection of Measures from HealthMeasures, p.5

Data Collection Tools

Data Collection Tools

Many PlatformsElectronic Health Records

• Epic• Cerner in dev• SMART-on-FHIR

in development• OBERD

Online• REDCap• Assessment

Center• AO Patient

Outcomes Center

• BrightOutcome

Mobile• NIH Toolbox &

PROMIS iPad Apps

• MyGiHealth

And Paper!

Important Considerations

• What data collection tools support this measure?• See Search & View Measures

• Can I support online data collection or do I need offline/mobile device access?

• Do I need languages other than English?• Do I need a score in real time?• What are my resources?

• Financial• Informatics support

Scoring Measures

Scoring Measures

1. Some data collection tools include automatic scoring a. ONLY option for NIH Toolbox Cognition, Sensation,

Motor

2. HealthMeasures Scoring Service (free!)3. Score by hand

Data Collection Tools with Automatic Scoring• REDCap

• NIH Toolbox and PROMIS iPad Apps• Assessment Center• Epic• OBERD, AOPOC

HealthMeasures Scoring Service

• Off-the-shelf HealthMeasures short forms• Short forms you create by selecting items

• Preferred over scoring manuals• More accurate (uses underlying item-level parameters

for each item and each response)• Handles missing data well

• https://www.assessmentcenter.net/ac_scoringservice

Instructions

• Download input template• Paste in raw response data• Upload• Retrieve files with scores from email

YouTube Tutorials

• Brief instructions (~ 1 min)• How to Use the HealthMeasures Scoring Service

(12 min)• PROMIS Global, PROMIS Profiles, PROMIS

Psychosocial Illness Impact (~5 min)

Scoring Manuals

• HealthMeasures.net –Calculate Scores page

Search & View Measures

Table to convert sum to scale score

Interpreting Scores

Standardized Scores• Purpose is to place scores on a similar metric

to make comparisons easier.

-3SD -2SD -1SD Mean +1SD +2SD +3SD20 30 40 50 60 70 80

Z-ScoreT-Score

What is the center?

“Score and Interpret”

Direction of Scores

Higher Means More

Higher Means Better (cognitive, motor, sensory function)

Varies by Domain

Interpretation: Important Differences

• There is no such thing as “Truth” when estimating important differences.

• Estimates only.

• Estimates reflect values, concerns, and context of the estimator.

And with that caveat. . .

Interpretation: Standard Setting

656045

77.5

72.5

67.5

62.5

57.5

52.5

82.5

47.5

42.5

37.5

32.5

Severe ProblemsMod.Mild ProblemsNo Problems

HealthMeasures.Net

Thank you!

• Funding for HealthMeasures was provided by the National Institutes of Health grant U2C CA186878

Questions?