patient reported outcomes why are they important

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Patient Reported Outcome Measures provide an insight from the patient's perspective of the impact of diasease and treatment on their health and quality of life.

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Patient Reported Outcomes – What are they & why are they

important?Dr Keith Meadows

DHP Research & Consultancy Ltd

Overview

• The new policy context

• What are outcomes?

• How can outcomes be measured?

• What are the opportunities that PROM data presents?

• What More Needs to be done to Improve Outcome Assessment & Feedback?

The New Policy Context

“Despite a century of developments in medical technology, and vast improvements in the ability of medical science to prevent, diagnose and treat disease and ill health, attempts to measure the outputs of health care in terms of their impact on patients’ health have not progressed beyond Florence Nightingale’s time.”

Getting the most out of PROMs Kings Fund 2010

A Fundamental Shift in Focus – The Policy Context

• Darzi Review – “ High Quality for All”

• NHS White Paper - Liberating the NHS Equity and excellence: Liberating the NHS

• Appraisal of new technologies (FDA, NICE) PRO data is now common place in the evaluation of new technologies

• April 2009 - Routine measurement of PROMs pre/post elective surgery (DH PROMs Programme)

• 2010 - DH Long Term Conditions PROMs Programme - 6 LTCs in feasibility study: Asthma; COPD; Diabetes; Epilepsy; Heart Failure; Stroke

… the NHS will be the first health care system in the world to measure what it produces in terms of health, rather than in terms of the production of health care.Getting the most out of PROMs Kings Fund

What are Outcomes?

Health Outcomes – A definition

“Outcomes, by and large, remain the ultimate validation of the effectiveness and quality of medical care." Avedis Donabedian 1966

The ultimate measure by which to judge the quality of medical effort is whether it helps patients (and their families), as they see it.Berwick 1997

But!!

“Different perspectives on outcomes need to be acknowledged. For instance, patients, carers and clinical staff may have different views of what outcomes are important, how you would measure them, and even which were desirable”

Long A, Jefferson J 1999

Levels of Outcomes

• Micro – Outcomes for an individual patient

• Messo – Outcomes for groups/samples of patients

• Macro – Outcomes for the whole population

Sources of outcome

Patient Outcome Assessment

Clinician reported CaregiverPhysiological Patient reported

What are PROMs?

Definitions

• Patient reported outcomes (PROM’s) are outcomes known only to the patient

• Patient reported outcome measures (PROM’s) are tools we use to measure patient outcomes

Why consider the patient’s perspective?

If quality is to be at the heart of everything we do , it must be understood from the perspective of the patient’

‘Just as important (as clinical measures) is the effectiveness of care from the patient’s own perspective which will be measured through patient-reported outcome measures’

Next Stage Review 2008

And also…

• Patients know better – ‘We know little of the clinical outcomes of NHS services from the patient’s perspective. PROM’s fill this gap’ DH 2007

• Clinical outcomes not always related to how the patient feels

• Patients like to be asked

• NHS White Paper

Variations on a theme

• Health status

• Health-related quality of life (HRQoL)

• Well-being

• Health outcomes

• Quality of life

• Satisfaction

How can Outcomes be Measured?

Generic and condition specific - strengths and weaknesses

Generic

• Suitable for the general population

• Comparisons with other conditions/disease groups

• Content may be redundant for certain condition/illnesses

• Not sensitive to detecting disease-specific issues

Condition-specific

• Specific to disease group

• Sensitive to detecting clinically significant changes

• Content relevant to target group

• Cannot compare with general population

Index v Multidimensional

• Overall score (but can be graded)

• Less information

• ?Easier to score

• Appropriate for cost-benefit analysis

• Provides a profile

• Reflects the important/different components of the illness

• Provides more information

• Can be long

What are the opportunities that PROM data presents?

PROM Stakeholders

GovernmentCharities

Professional bodies

Providers

Patients

Commisioners

Health care professionals Pharma

PROMs

What can PROM’s tell us?

• Which is the best treatment for the condition?

• Is one subgroup of the population sicker than the others?

• Is an individual patient’s condition getting better?

After Coulter A 2008

Some specific applications

• Personalised care planning

• Self-assessment

• Annual review

• Informed decision making • Population health

General applications

• Measurement of the patient’s health status or health-related quality of life (HRQoL) at a single point in time

• PROMs are used to derive measures of the outcomes of specific interventions.

• Changes in health status or HRQoL at two different points in time (e.g. before and after an operation) can be used to derive a measure of the impact of health care interventions.

• Certain PROMs suitable for purposes of economic evaluation (e.g., estimation of quality-adjusted life years – QALYs)

Hypothetical example of benefits of treatment

25 30 45 50 55 60 65 70 75

Anxiety summary score (higher scores better health)

Pre-treatment

3 months later

People of similar age & treatment UK sample

Linking PROM Research, guidelines & Routine practice

Guidelines based on

research outcomesRoutine practice

Research using PROMs

Some Caveats

Some Practical Issues

• Resources and staff time need to be set aside for training and receiving feedback

• Resources and personnel to analyse and present outcomes, case-mix and, where available, intervention data to clinical teams

Principles in Routine Measurement of Health Outcomes

• All three dimensions (context, intervention as well as outcomes) must be measured in order to understand outcomes data

• The reliability & validity of any measure of health status must be known so that their impact on the assessment of health outcomes can be taken into account

• Data collected must be fed back to maximize data quality, reliability and validity.

What More Needs to be done to Improve Outcome

Assessment & Feedback?

What needs to be done to improve outcome assessment and feedback?

• Ensure instruments, data collection and analysis is highly credible

• Data must be relevant

• Data collection affordable and practical to collect and not affect the care process

• Instrument validity and reliability

• Feedback useful & relevant to different users and decision making

• Develop & support processes for users to act on information

Some Key Questions• How can we best embed PROMs into the decision making process?

• What are the practical issues to overcome?

• Do PROMs tell us everything we need to know?

• How can we combine PROM data with other clinical data?

• Do clinicians ‘want’ or ‘believe’ in PROMs?

• What are the most effective ways to provide feedback?

PROM Research Priorities(PROMs Identifying UK Research Priorities- MRC Workshop 2009)

• Define the most appropriate domains within PROMs

• To address gaps in the currently available PROMs

• Develop guidelines for the use of PROMs in research

• Understand the impact of changes in PROMs on health functioning

Summary

• Culture shift towards the use of PROMs

• Potential gains from PROMs can be substantial but:

- Instruments and methods of data collection must be credible

- Analysis and feedback must be relevant and specific to the different needs

- A lot of challenges remain

AddendumAn Example from Diabetes

The Diabetes Health Profile (DHP)

A diabetes specific self-completion questionnaire for measuring the psychological and behavioural impact of living with diabetes for people with diabetes 18 years and older.

Completed by nearly 8,000 patients across the UK and Europe.

What does the DHP measure?

The sub-clinical psychological and behavioural problems experienced by people who live with diabetes - which often go undetected in a clinical setting but, nevertheless can have a significant impact on wellbeing and management of the disease.

Diabetes Health Profile Conceptual Model© DHP Research & Consultancy Limited 2010© DHP Research & Consultancy Limited 2010

Impact

Management Treatment Symptoms Diet Complications

Diabetes

Emotional Behavioural

Anxiety MoodLimitations in

Social/workfunctioning

Eating behaviour

DHP

What does the DHP Measure?

Psychological distress

Barriers to

activity

Disinhibitedeating

dysphoric mood, irritability, feelings of hopelessness

anxiety, perceived impairment, restrictions in activity

Lack of eating restraint, eating in response to emotional arousal and

external food cues

Two versions of the DHP

DHP-1818-items

DHP-132-items

Type1 and insulin requiring

Type 1 & Type 2 including tablet, diet

DHP-18 Conceptual Framework

Psychological distress

Lose temper/shout

Moody due to diabetes

Lose temper over testing

Lose temper over small things

More arguments at home

Days tied to meal times

Food controls life

Difficult staying out late

Worry about colds and flu

Get edgy when nowhere to eat

Don’t go out when sugars are low

Depressed due to diabetes

Worry going into busy shops

Eat to cheer self up

Hard saying no to food

Eat extra when bored/fed up

Not so many nice things to eat

Easy to stop eating

Barriers to activity

Disinhibited eating

How is the DHP scored?

Items scored using 4-point Likert type scale (range 0-3)

Standardised subscale scores 0 (no dysfunction) thru 100 (max dysfunction)

Standardised populations means

DHP-18 - Description of very high and very low BA, PD and DE scale scores

Scale Very high Very low

PD Frequent and or substantial emotional distress including dysphoric mood, irritability and externally directed hostility

None or little experienced lowered mood or feelings of expressed hostility

BA Very significant levels of anxiety restricting behaviour and perceived limitations in social/role activities

Little or absence of restricting anxiety or perceived limitations in social/roles

DE Substantial and or frequent levels of eating in response to food cues and emotional arousal. Excessive eating.

Absence of eating in response to food cues and or emotional arousal. No excessive eating.

If you would like to discuss how DHP Research can help you to use and analyse Patient Reported Outcomes for healthcare, pharmaceutical or biotech, or would like more information on the DHP, please get in touch.

Email: kmeadows@dhpresearch.com

Mobile: +44 (0) 796 022 8124

Tel: +44 (0) 208 467 3739

Website: www.dhpresearch.com

Linkedin: http://url.ie/92wf

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