Understanding rheumatoid arthritis patients' prioritisation of treatment outcomes and formation of global well-being

Lead Research Organisation: University of the West of England
Department Name: Faculty of Health and Life Sciences

Abstract

Rheumatoid arthritis (RA) is a disease that can be disabling as a result of painful, swollen joints, joint deformity, fatigue, and unpredictable inflammation. The condition is commonly diagnosed between 30 and 50 years, and can impact severely on home and work life.
Assessment of the effectiveness of treatments for RA is dominated by doctors‘ and nurses‘ opinions, and the patients‘ perspective is minimal. The research aims to ensure that changes which are important to patients are routinely assessed in research and clinical settings. In rheumatology, there is limited research on the effect of cultural issues on health care for RA. The new study will begin to address this by examining the different socio-cultural perceptions of RA in Punjabi speaking patients, and how these may impact on their health care, with a long-term view of conducting a large cross-cultural study with different ethnic minority groups.
The researcher was trained in the social sciences and uses both qualitative and quantitative methods. Two patients will collaborate in the research team meetings.
Through engagement with the media and policy makers, the research outcomes will lead to an improvement in health professionals‘ understanding of patients‘ priorities in RA, and in patients‘ decisions about treatment options.

Technical Summary

Aims
The aims of the doctoral research were 1) to explore the meaning of treatment outcomes such as well-being in rheumatoid arthritis (RA), and 2) to develop a patient generated ‘core set‘ of important treatment outcomes. The new study in the Fellowship will build on this research by exploring the same issues in relation to a different ethnic group.

Objectives
In the doctorate, the objectives were to 1) create a model of well-being in RA, 2) elicit important treatment outcomes, 3) enable patients to prioritise them, and 4) create a core-set of outcomes that would represent the patient perspective and enhance the existing professional core-sets. The objectives of the new research would be to 1) explore what well-being means for a contrasting ethnic group, and 2) determine how their priorities for treatment outcomes differ from white patients with RA.

Design
The doctorate used mixed methods: in-depth interviews, nominal groups, and a postal survey. Purposive sampling was used for the qualitative research to ensure a diversity of disease duration, disease activity, and medication type. Participants for the postal survey were recruited through three NHS sites and the National Rheumatoid Arthritis Society. The new exploratory study will use interviews with Punjabi speaking RA patients in Coventry, Barnsley and Bristol. User involvement will continue with the existing patient research partner (PRP) and a Punjabi speaking PRP will be recruited.

Methodology
A Grounded Theory approach was used during the PhD in order to develop and test theory on the meaning of well-being in RA, and because Grounded Theory was appropriate for creating an integrated mixed methods study. A narrative analysis will be used in the new study.

Scientific and medical opportunities
The review of well-being in long term conditions, and the model of well-being in RA, will update the social science literature on an important concept in health research.

The patient core-set willble the inclusion of treatment outcomes that are important to patients in clinical trials as part of the Outcome Measures in Rheumatology Clinical Trials (OMERACT) patient perspective focus. The doctoral data will also contribute to the standardisation of the international visual analogue scales used in assessing disease activity in RA.

The new study will explore whether Punjabi speaking patients with RA have different socio-cultural perceptions of well-being in relation to a chronic condition and different priorities for treatment, and may provide evidence for the need for further work with other ethnicities.

Publications

10 25 50

 
Description Invitation to speak
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Arthritis Research UK feasibility study grant
Amount £24,459 (GBP)
Organisation Versus Arthritis 
Start 07/2011 
End 06/2012
 
Description OMERACT travel fellowship
Amount £850 (GBP)
Organisation The European League Against Rheumatism (EULAR) 
Sector Charity/Non Profit
Country Switzerland
Start 05/2010 
End 06/2010
 
Title Interview data 
Description Interview data collected with Punjabi-speaking female patients with rheumatoid arthritis, aiming to identify priority treatment outcomes, patterns of normality and access issues 
Type Of Material Database/Collection of Data/Biological Samples 
Provided To Others? No  
Impact Data still being collected 
 
Description Birmingham Arthrtis Resource Centre 
Organisation Birmingham Arthritis Resource Centre (BARC)
Country United Kingdom 
Sector Academic/University 
PI Contribution Previous articles from MRC award led Professor Paul Bacon to request a collaboration on an evaluation of the BARC service on coping and I will be leading focus groups to this effect
Collaborator Contribution Gaining funding for above project
Impact Too early
Start Year 2013
 
Description Important outcomes to Punjabi rheumatoid arthritis patients 
Organisation University of Birmingham
Country United Kingdom 
Sector Academic/University 
PI Contribution Acquired funds and lead research project.
Collaborator Contribution Provided access to participants through honorary contracts with local hospitals, and contributed to data collection and analysis of interviews.
Impact One article published, two under review. Planning to apply for funds on future collaborative project.
Start Year 2009
 
Description OMERACT Definition of Flare working group 
Organisation Outcome Measures in Rheumatology Clinical Trials (OMERACT)
Country Canada 
Sector Learned Society 
PI Contribution Conducted focus groups in UK, co-ordination of patient delphi
Collaborator Contribution Knowledge exchange with regards to cross-cultural research issues
Impact Hewlett S, Sanderson T, May J, Alten R, Bingham III CO, Cross M, March L, Pohl C, Woodworth T, Bartlett S. "I'm hurting, I want to kill myself": Rheumatoid arthritis flare is more than a high joint count - an international patient perspective on flare where medical help is sought. Rheumatology 2011 (in press) Multi-disciplinary: medical, sociology, psychology
Start Year 2010
 
Description Treatment outcomes for Punjabi rheumatoid arthritis patients 
Organisation University Hospitals Coventry and Warwickshire NHS Trust
Department Rheumatology Department
Country United Kingdom 
Sector Hospitals 
PI Contribution Acquired funding and lead research.
Collaborator Contribution Provided access to participants.
Impact One article published (2012) and two under review.
Start Year 2009
 
Description Work Attitudes and Vocational Support in Musculoskeletal Conditions 
Organisation Keele University
Department Research Institute for Primary Care and Health Sciences
Country United Kingdom 
Sector Academic/University 
PI Contribution Leading on grant application
Collaborator Contribution Co-applicant providing expertise on work and participation in musculoskeletal conditions
Impact Application to be submitted February 2013
Start Year 2012
 
Description Work Attitudes and Vocational Support in Musculoskeletal Conditions 
Organisation University of Salford
Country United Kingdom 
Sector Academic/University 
PI Contribution Leading application
Collaborator Contribution Co-applicant providing expertise on vocational rehabilitation
Impact Grant application due Febuary 2013
Start Year 2012
 
Description Work Attitudes and Vocational Support in Musculoskeletal Conditions 
Organisation University of Warwick
Country United Kingdom 
Sector Academic/University 
PI Contribution Leading on grant application
Collaborator Contribution Co-applicant providing expertise on ankylosing spondylitis
Impact Grant application deadline of Febuary 2013
Start Year 2012
 
Description Arthritis Today newsletter article about study results 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Primary Audience Participants in your research and patient groups
Results and Impact Newsletter went out to all of Arthritis Research UK members

None known
Year(s) Of Engagement Activity 2010