Introduction to Patient-Reported Outcome Measures

8/14/2019 Introduction to Patient-Reported Outcome Measures

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Patient Reported Outcome

Measures

Dr Justin Whatling

2009

Visiting ProfessorCentre for Health Informatics &Multiprofessional Education

Routine Health Outcomes Ltd

Clinical Director

Routine Health Outcomes Ltdmeasuring health


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Agenda

Introduction to PROMs

Case studies

BUPA Case Study

howRU Case Study

Health utility exercise


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Measuring health

Healthcare here foronly 2 reasons

Live longer

Improve quality of life

Yet we only routinelymeasure mortality

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Adding Years to Life and Life to Years


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Renewed interest

Routine HealthOutcomes Ltd

Linking revenue to outcomes showsthat DH is serious

Payment to hospitals for services is

being linked to patient-reportedexperiences and outcomes as oneway of driving improved quality andpatient-focus across the NHS

HM Government. Working Together PublicServices on Your Side. London: HMSO, March

2009

High Quality Care for All

If quality is to be at the heart of everything we do, itmust be understood from the perspective of the

patient.

Just as important [as clinical measures] is theeffectiveness of care from the patients ownperspective which will be measured throughPROMs

Darzi. High Quality Health For All: NHS Next Stage Review Final Report.London: Department of Health, 2008

The ultimate measure by which tojudge the quality of a medical effortis whether it helps patients (andtheir families) as they see it.

Donald Berwick, BMJ 1997


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Outcomes

Adapted from FDA/ Harmonisation meeting 16/02/01. Rockville MD


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What are PROMs

PROMs are questionnaire tools that measure patients health status

Measuring the same questionnaire over time enables comparison and change inhealth status to be assessed

Change in health status can be assessed against patient progress or healthinterventions received

Main types

Health Related Quality of Life, HRQL patients evaluation of the impact of a health condition and its treatment on relevant

aspects of life

Health Utility a cardinal measure of the preference for, or desirability of, a specific level of health status

or specific health outcome

Quality of life is subjective..

Given its inherently subjective nature, consensus was quickly reached that quality of life

ratings should, whenever possible, be elicited directly from patients themselves. NeilAaronson 1996


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From research to practice

Outcomes research seeks to understand the end resultsof particular healthcare practices and interventions.(Agency for Health Care Quality and Research, US Dept of Health and Human Science)

Outcomes management is the enhancement ofphysiologic and psychosocial patient outcomes throughdevelopment and implementation of exemplary healthpractices and services driven by outcomes assessment.(Wojner AW, President Health Outcomes Institute)


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Something

for everyone

Patients and families What is the likely outcome and recovery

path?

How am I doing?

What should I spend my personal healthbudget on?

Does my clinician really understand howI am feeling?


Commissioners Is this population group better than thatone?

Is there any difference in outcomebetween care providers?

How can we allocate resources to

achieve better value for money?

Clinicians Has this patients condition changed for

better or worse?

Am I missing something that is really

important for the patient?

How do my results compare withothers?

Support revalidation

Managers How do our results compare withothers?

What are we doing that provides little orno benefit?

How can we evaluate cost-saving

innovation to check that quality doesnot suffer?

Research What is the best treatment for this

condition?

What is the cost-effectiveness of an

intervention


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Outcomes Transparency

TheVirtuous

Circle


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PROM tools

Dimension specific

Single dimension such as function or pain e.g. Hospital anxiety and depression scale (HADS), McGill PainQuestionnaire

Disease/ Condition specific

Single condition

Thousands of specialised instruments

e.g. Arthritis Impact Measurement Scale (AIMS), Parkinson'sDisease Questionnaire (PDQ-39)

Generic

All conditions, all care settings

Relatively few instruments

e.g. Short Form-36, Sickness Impact Profile, EQ-5D


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History of Generic PROMs

First Generation (1968-1988) Measure health service output

Clinician as the rater

e.g. Rosser, Williams, RAND

Second Generation (1988-2008)

Clinical trials of pharma products, research

Patient as the rater

e.g. SF-36, SF-12, EQ-5D, HUI

Third Generation (2008-)

Routine use at point of care

e.g. howRU



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Measuring routine outcomes


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Beyond discrete surgical interventions

Routine health outcomes capture required

Scalable solutions required


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Approach

Objective fit for routine use

Quick and simple

Appropriate technology

Deliver value to care professionals and consumers New

Learn from mistakes of others

Limited evidence base so far Generic

Multiple conditions & care settings health care, social care, wellbeing, work


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Pain or discomfort

Feeling low or worried

What matters to us as patients

Limited in what you can do

Dependent on others



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howRU


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Length in words



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Early Validation Study

Patients with 21 long term conditions

Telephone survey

Summer 2008 (beta version phone script) 2,908 subjects

Picker Institute

Comparison with SF-12



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howRUPhone Script (beta version)

Wed now like to ask about how you are feeling today and how much you can do.

How are you today. do you have any of the following:

Symptoms, such as pain?none; slight; quite a lot; extreme.

Feeling low or worried?

none; slight; quite a lot; extreme.

Limited in what you can do?


Dependent on others?



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Correlation 0.99


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Correlation 0.97


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Psychometric properties Good internal structure, howRU

Item pair correlations are significant at the 0.01 level (2-tailed)

Average inter-item correlation is 0.50, at top end of the expected range

Suggests that the howRU dimensions are not independent and measure different aspects ofthe same underlying continuum

Support for a single summary score, howRU The correlations between each item and the aggregate howRU score have a mean of 0.61,

which are substantial and suggests that a single summary score is appropriate to use

Principal factor analysis of the howRUitems using maximum likelihood extraction suggeststhat a single latent dimension underlies these items

Supported by Cronbachs alpha, which is 0.8 (expect 0.7-0.9)

Good correlation with SF-12 Physical howRU dimensions are more highly correlated with PCS (mean 0.66), than with

MCS (mean 0.32) Mental howRU dimension is more highly correlated with MCS (0.59) than with PCS-12 (0.33)

The correlation between the aggregate howRUscore with the aggregate SF-12 score (sum ofPCS-12 and MCS-12) is 0.81

Exploratory principal components analysis: the component loadings suggest that howRUphysical dimensions together with PCS-12 load substantially onto one component, and that

howRU mental dimension and MCS-12 load onto the second (orthogonal) component.


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howRUProperties

Universal

All conditions, all care settings Takes almost no time

Seconds not minutes

Improves patient care helps patients and clinicians in routine use

Integrate with IT systems

Record linkage and risk adjustment

Easy to understand results

Simplicity


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Health Economics

Comparing different allocations

What should we spend our money on Wheel chairs?

Cancer screening?

Can measure cost of inputs but not outputs cantput an economic value on healthcare

So we use cost-effective analysis

Measure costs and outcomes

Cost per outcome


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Quality Adjusted Life Years (QALY) Outcomes must be comparable

Disease specific outcomes are incompatible and onlyallow comparisons within a disease area Generic outcome are compatible and allow

comparisons between disease areas Best outcome we currently have is QALYs

Multiply life years with a quality of life index Perfect health 1.0 to death 0.0

Then can establish the Cost per QALY This is the metric used by NICE Stated range 20,000 - 30,000 per QALY


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QALY Example

A new wheelchair for elderly (iBOT) Increases quality of life = 0.1 10 years benefit

Extra costs: $3,000 per life year

QALY = Y x V(Q) = 10 x 0.1 = 1 QALY Costs are 10 x $3,000 = $30,000

Cost/QALY = $30,000/QALY

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Cost per QALY league tableIntervention / QALY

GM-CSF in elderly with leukemia 235,958EPO in dialysis patients 139,623

Lung transplantation 100,957

End stage renal disease management 53,513Heart transplantation 46,775

Didronel in osteoporosis 32,047

PTA with Stent 17,889

Breast cancer screening 5,147

Viagra 5,097

Treatment of congenital anorectal malformations 2,778

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How to measure utility

Ask the patient or members of the public?

Quality of life is subjective.. Given its inherently subjective nature, consensuswas quickly reached that quality of life ratings

should, whenever possible, be elicited directly frompatients themselves. Neil Aaronson 1996

VAS scores wheelchair patients 8.0, view of healthcontrols 8.3 (Scan J Rehab Med 1985)

Is health a consumer market where consumervalues count?


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How to measure utility

Indirect utility assessment

HUI, EQ-5D, SF-6D leading but with differentstrong and weak points

More states better sensitivity, large number of

health states requires statistical techniques Direct utility assessment

Standard Gamble, Time Trade Off, Person Trade

Off, Visual Analogue Scale


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Finally

Patient Reported Outcome Measures have multiplepractical uses, all driving to help improve the quality andcost-effectiveness of service provision to patients

Along with clinical outcomes and patient experience,they are an important piece of the healthcare jigsaw andas such are fundamental to health system transformation

www.routinehealthoutcomes.com

[email protected]

Introduction to Patient-Reported Outcome Measures

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