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Enid Quest John Kirwan Academic Rheumatology Unit Bristol Royal Infirmary Bristol BS2 8HW United Kingdom

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The James Lind Alliance Tackling treatment uncertainties together. University of Bristol Academic Rheumatology Unit. Taking patients’ and clinicians’ questions about the effects of treatment seriously. Rheumatoid arthritis – What have we found and what are we trying to do about it?. Enid Quest

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slide1

The James Lind AllianceTackling treatment uncertainties together

University of BristolAcademic Rheumatology Unit

Taking patients’ and clinicians’ questions about the effects of treatment seriously.Rheumatoid arthritis – What have we found and what are we trying to do about it?

Enid Quest

John Kirwan

Academic Rheumatology Unit

Bristol Royal Infirmary

Bristol BS2 8HW

United Kingdom

researchers and patients can be friends
Enid Quest

Patient Research Partner

Researchers and patients can be friends!

Academic Rheumatology Unit

Bristol Royal Infirmary, Bristol BS2 8HW, UK

researchers and patients can be friends3
Enid Quest

Patient Research Partner

John Kirwan

Professor of Rheumatic Diseases

Researchers and patients can be friends!

Academic Rheumatology Unit

Bristol Royal Infirmary, Bristol BS2 8HW, UK

agenda for our presentation
Agenda for our presentation
  • Rheumatoid arthritis (John & Enid)
  • How international standardised outcomes were devised (John)
  • How patients got into the act (Enid)
  • Differences between patients and professionals (John)
  • What we are trying to do about it in Bristol (Enid & John)
symptoms of rheumatoid arthritis
Symptoms of rheumatoid arthritis
  • Pain
  • Stiffness and ‘gelling’ after inactivity
  • Unpredictable ‘flares’ of inflammation
  • Fatigue
  • Disability
  • Psychological effects
    • anxiety
    • depression
    • helplessness
signs of rheumatoid arthritis in the joints

Swollen finger joints in early RA

Joint damage inRA of the hands

2003 2004 2005

Signs of rheumatoid arthritis in the joints
  • Swelling
    • effusions
    • soft tissue swelling
  • Warmth
  • Joint deformity
  • Reduced range of movement
  • Bony destruction
  • Crepitus
which joints are affected

Who gets RA?

Which joints are affected?
  • Men 
  • Women 
  • Children ()
  • Young 
  • Prime of life 
  • Elderly 
slide15
So…
  • Rheumatoid arthritis (RA) involves
    • Inflammation inside joints
    • Destruction of joints
  • It can also affect other parts of the body in some people
  • About 1 person in 100 will get RA
  • RA costs the country £1,200,000,000 per year
  • Severe RA shortens life
rheumatoid arthritis my experience
Rheumatoid arthritismy experience
  • Onset
    • Early symptoms
  • Diagnosis
    • Relief only rheumatoid arthritis
    • Soon replaced with the realisation that it was more serious
slide17

Rheumatoid arthritismy experience

Living with rheumatoid arthritis

Anxiety

Loss of independence soon replaced the pain and stiffness

Finding the right medication

Coping with fatigue

what did we used to do19

Different investigators rated different outcomes as important

What did we used to do?
  • Trials used a variety of outomes which were considered by a particular investigator to be important
  • Doctors do not make ‘standard’ decisions about treatment response
questioning the paradigm that doctors make standard decisions in rheumatoid arthritis
Questioning the paradigm that doctors make ‘standard’ decisions in rheumatoid arthritis….

….Helped in founding OMERACT (Outcome Measures in Rheumatology Clinical trials)

omeract
OMERACT
  • Working conference of clinicians and methodologists
  • Formed 14 years ago, meets 2-yearly
  • Seeks to identify outcomes, instruments and methods of asessing benefit in rheumatology
  • Standardised a ‘core set’ of outcome measures for rheumatoid arthritis clinical trials
  • The core set has be adopted by the regulatory agencies in USA and Europe
omeract 5 may 2000
OMERACT 5, May 2000
  • Tried to define ‘minimum clinically important difference’ for changes in outcomes
  • Realised this depends on who defines ‘important’!
  • Resolved to include patients directly as participants in future work on defining the outcomes of arthritis
patients at omeract 6

OMERACT 6

Patients at OMERACT 6
  • The OMERACT meeting of 2002
    • included 9 patients as full delegates to the meeting and
    • had a Patient Perspective Workshop as a major part of the programme….
patients at omeract 624

OMERACT 6

Patients at OMERACT 6
  • During the this conference it became evident that there was a miss-match between the views of the researchers and the patients
  • Patients soon became involved in a series of discussions and were able to attend and contribute in all sessions
patients at omeract 625

OMERACT 6

Patients at OMERACT 6
  • One stumbling block was the use of technical and medical terminology
  • A glossary has been produced by patients to enable them to be confident in their participation
patients at omeract 626

OMERACT 6

Patients at OMERACT 6
  • The openness and encouragement of the professionals at this first conference has led the way for involvement at other international conferences
  • Many patients now feel able to make presentations and contribute on many different topics.
slide27

OMERACT 6

OMERACT 6 – April 2002Patient Perspective Workshop

Research Agenda

Three areas for exploration and development

  • Novel outcomes and approaches to assessment
  • Terminology and current knowledge
  • The role of the patient
slide28

OMERACT 6

OMERACT 6 – April 2002Patient Perspective Workshop

  • An international patient panel has now been formed
  • Around 20 patients from Europe, America, Canada and Australia.
  • The panel attended the 7th conference in California in 2004, and are preparing for the OMERACT 8 in Malta in 2006.
omeract 7 may 2004
OMERACT 7 May 2004
  • Patient participation increased to 20
  • Funding underwritten to ensure patient participation
  • Patient input into three topic areas
  • Patient orientation built into programme
  • Clinical support available if needed
omeract 7 may 200430
OMERACT 7 May 2004
  • Patients have been involved in a number of research projects and discussion groups on a variety of subjects
    • Fatigue
    • Low disease activity state
    • Being an effective consumer
    • Drug safety workshops
    • The question of well-being
omeract 7 may 200431
OMERACT 7 May 2004
  • Training sessions have been held in order to help patients develop skills and the necessary confidence to participate with professionals on a level playing field.
patient perspective workshop objectives
Patient Perspective Workshop Objectives
  • Review the recent progress in the area
  • Identify requirements for further development of valid instruments
  • Delineate a research agenda which can attain these requirements
  • Enthuse participants to undertake the appropriate research
research agenda main topics
Research Agenda Main Topics
  • Fatigue
  • Well being
  • Real time assessment of symptoms
  • Incorporating patient priorities
  • Outcomes in early and late disease
reviews of the available evidence made it clear that
Reviews of the available evidence made it clear that:
  • Patients and professionals view the outcome of rheumatoid arthritis differently.
  • Many of the consequences of arthritis which patients find important to them are not measured at all, or are not included in the ‘core set’.
slide37
Patients and professionals view things differently…

…this makes a difference to our work!

slide38

Patients and professionals view the outcome of rheumatoid arthritis differently

Importance of outcomes reported by women with established rheumatoid arthritisPatricia Minnock, Barry Bresnihan (in preparation)
patient involvement in bristol
Patient Involvement in Bristol
  • Patient Advisory Group.
    • Meets every three months
    • Advised on the refurbishment of the Rheumatology Centre
    • Produced a booklet for new patients, and a yearly newsletter
    • Corresponds with other agencies regarding issues that affect patients.
patient involvement in bristol40
Patient Involvement in Bristol
  • Volunteers in clinic.
    • Meeting other patients in clinic gives the opportunity to discuss issues and offer support and encouragement.
  • Involvement in Research.
    • Patients help to make grant applications, suggest topics for research and are often the subject of research.
patient involvement in bristol41
Patient Involvement in Bristol
  • Patient Teaching Partners
    • Patients speak to groups of students to help them understand the consequences of being diagnosed with Rheumatoid Arthritis and answer questions about the affect on daily living
  • International Involvement
    • Several patients serve on an international patient panel and have made presentations at conferences around the world
patient involvement in bristol42
Patient Involvement in Bristol

Our involvement as patients and our dialogue with staff has brought about benefits for the patients, the service and the staff.

slide43

Patients and Professionals as Research Partners:

Challenges, Practicalities and Benefits

Pamela Richards1, Maarten de Wit2, John Kirwan3, Enid Quest1, Rod Hughes4, Turid Heiberg5, Sarah Hewlett3

1Bristol University Academic Rheumatology, UK, 2Dutch Arthritis Patients League, The Netherlands, 3University of Bristol Academic Rheumatology, UK, 4St Peter’s Hospital, Chertsey, UK, 5Centre Education & Skill Training, Ulleval University Hospital, Norway

Background

Most researchers do not have personal experience of arthritis

Patients’ experiences can complement researchers’ analytical skills

Effective patient involvement requires new ways of working

slide44

Patients and Professionals as Research Partners:

Challenges, Practicalities and Benefits

Methods:

The authors have been collaborating in research

Some are patient research partners or are on research steering committees

Patient Research Partners have taken an active role in OMERACT and EULAR

We reviewed our collective experience of partnership in practice

slide45

Results - Challenges and barriers encountered:

Challenges: Enabling and empowering partner participation

Barriers: Terminology, training, expense

Establishing boundaries Patient and clinician or colleagues?

Avoiding tokenism

Understanding patients’ barriers

No real contribution encouraged

Anxiety about ability to contribute

slide46

Results - Challenges and barriers encountered:

Challenges: Enabling and empowering partner participation

Barriers: Terminology, training, expense

Establishing boundaries Patient and clinician or colleagues?

Avoiding tokenism

Understanding patients’ barriers

No real contribution encouraged

Anxiety about ability to contribute

slide47

Results - Practicalities:

We have developed a philosophy of patient partner involvement based on FIRST principles

slide48

Results - Practicalities:

We have developed a philosophy of patient partner involvement based on FIRST principles

slide49

Results - Practicalities:

We have developed a philosophy of patient partner involvement based on FIRST principles

slide50

Results - Practicalities:

We have developed a philosophy of patient partner involvement based on FIRST principles

slide51

Results - Practicalities:

We have developed a philosophy of patient partner involvement based on FIRST principles

slide52

Results - Practicalities:

We have developed a philosophy of patient partner involvement based on FIRST principles

slide53

In Press

Results - Practicalities:

We have developed a philosophy of patient partner involvement based on FIRST principles

For further details see…

slide54

Conclusions

Professionals and Patient Research Partners bring different skills, values and experiences

Partnership requires effort and commitment

Providing training, support & encouragement empowers partners

Patients’ experience-based knowledge is a resource to be utilised, not wasted

slide55

Conclusions

Professionals and Patient Research Partners bring different skills, values and experiences

Partnership requires effort and commitment

Providing training, support & encouragement empowers partners

Patients’ experience-based knowledge is a resource to be utilised, not wasted

slide56

Conclusions

Professionals and Patient Research Partners bring different skills, values and experiences

Partnership requires effort and commitment

Providing training, support & encouragement empowers partners

Patients’ experience-based knowledge is a resource to be utilised, not wasted

slide57

Conclusions

Professionals and Patient Research Partners bring different skills, values and experiences

Partnership requires effort and commitment

Providing training, support & encouragement empowers partners

Patients’ experience-based knowledge is a resource to be utilised, not wasted

how do patients want us to include their perspective in outcome assessment

Measure outcomes of interest to patients

  • Incorporate patients’ values into instruments used to measure outcome
  • Incorporate patients into the research process
How do patients want us to include their perspective in outcome assessment?

Three steps to success…

omeract 6 april 2002 patient perspective workshop

OMERACT 6

OMERACT 6 – April 2002Patient Perspective Workshop

Did it make a difference?

These articulate volunteers provided important input on missing dimensions of RA outcome measurement.

The OMERACT patients believed the current core sets of RA criteria do not capture or give adequate weight to a global sense of well being, fatigue, or disturbed sleep.

Saag K. OMERACT 6 Brings New Perspectives to Rheumatology Measurement Research. (Editorial) J Rheumatol 2003; 30: 639-641

how do patients want us to include their perspective in outcome assessment65
How do patients want us to include their perspective in outcome assessment?

Three steps to success…

  • Measure outcomes of interest to patients
  • Incorporate patients’ values into instruments used to measure outcome
  • Incorporate patients into the research process
how can patients be partners in research
How can patients be partners in research?
  • Identify relevant research questions
  • Identify relevant outcomes
  • Define clinically important changes
  • Patient’s perspective built in to outcomes
  • Design and undertake research
  • Interpret results
  • Disseminate results
  • Help turn research into service developments
patient and professional views in arthritis
Patient and professional views in arthritis
  • 47% discordance of >0.25 HAQ: 15 patients rated higher than Drs, 9 rated lower Van den Ende 1995
  • 35% discordance (AIMS vs 4 point ACR). Patients and Drs rated higher and lower equally Berkanovic et al, 1995
  • Poor association between change as perceived by the patient and change as calculated by repeated questionnaires:

Correlation of r= 0.18 Fischer et al, 1995

Correlation of r= 0.28 Hewlett, 2000

patient and professional views in arthritis68
Patient and professional views in arthritis
  • Overall health - Drs rated higher; Pain - Drs rated lower; Willing to take risk - Drs rated lower Suarez-Almazor et al, 2001
  • Physical health - 42% discordance; Psychological health - 47% discordance Kwoh et al, 1992
  • In osteoarthritis GPs rated lower for disability, depression & anxiety (Kappas = 0.11 to 0.24) Memel et al, 2000
patient and professional views in arthritis69
Patient and professional views in arthritis

Some overall conclusions

  • Doctors cannot easily identify important psychological outcomes
  • Professionals and patients agree only moderately on values for disability
  • Patients place value on emotions & mental state, doctors value function & role
slide70
Patients and professionals view things differently…

…this makes a difference to our work!

o meract
OMERACT
  • Did not start the notion of seeing outcomes from the patient perspective but…
  • Has been the main stimulus to developments in this area over the last four years
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