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.
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.
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.
Organisations
- University of the West of England, United Kingdom (Lead Research Organisation)
- University of Warwick, United Kingdom (Collaboration)
- Outcome Measures in Rheumatology Clinical Trials (OMERACT) (Collaboration)
- University of Birmingham, United Kingdom (Collaboration)
- Keele University, United Kingdom (Collaboration)
- Birmingham Arthritis Resource Centre (BARC) (Collaboration)
- University Hospital Coventry NHS Trust, United Kingdom (Collaboration)
- University of Salford, United Kingdom (Collaboration)
- Durham University, United Kingdom (Fellow)
People |
ORCID iD |
Tessa Sanderson (Principal Investigator / Fellow) |
Publications

Alten R
(2011)
Developing a construct to evaluate flares in rheumatoid arthritis: a conceptual report of the OMERACT RA Flare Definition Working Group.
in The Journal of rheumatology

Bacon PA
(2013)
Vasculitis syndromes: Vasculitis assessments--what do patients think?
in Nature reviews. Rheumatology

Bartlett SJ
(2012)
Identifying core domains to assess flare in rheumatoid arthritis: an OMERACT international patient and provider combined Delphi consensus.
in Annals of the rheumatic diseases

Bingham CO
(2011)
Identifying preliminary domains to detect and measure rheumatoid arthritis flares: report of the OMERACT 10 RA Flare Workshop.
in The Journal of rheumatology


Hewlett S
(2012)
'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.
in Rheumatology (Oxford, England)

Kirwan JR
(2011)
Patient perspective workshop: moving towards OMERACT guidelines for choosing or developing instruments to measure patient-reported outcomes.
in The Journal of rheumatology

Kirwan JR
(2009)
Progress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of life impact measures at OMERACT 9.
in The Journal of rheumatology

Sanderson T
(2010)
Patient perspective of measuring treatment efficacy: the rheumatoid arthritis patient priorities for pharmacologic interventions outcomes.
in Arthritis care & research

Sanderson T
(2012)
Exploring the cultural validity of rheumatology outcomes.
in British journal of nursing (Mark Allen Publishing)

Sanderson T
(2010)
'It's this whole picture, this well-being': patients' understanding of 'feeling well' with rheumatoid arthritis.
in Chronic illness

Sanderson T
(2015)
The moral experience of illness and its impact on normalisation: Examples from narratives with Punjabi women living with rheumatoid arthritis in the UK.
in Sociology of health & illness

Sanderson T
(2011)
Shifting normalities: interactions of changing conceptions of a normal life and the normalisation of symptoms in rheumatoid arthritis.
in Sociology of health & illness

Sanderson T
(2013)
'I'm an expert in me and I know what I can cope with': patient expertise in rheumatoid arthritis.
in Communication & medicine

Sanderson T
(2012)
Utilizing qualitative data from nominal groups: exploring the influences on treatment outcome prioritization with rheumatoid arthritis patients.
in Journal of health psychology

Sanderson T
(2010)
What outcomes from pharmacologic treatments are important to people with rheumatoid arthritis? Creating the basis of a patient core set.
in Arthritis care & research

Sanderson TC
(2011)
The impact triad (severity, importance, self-management) as a method of enhancing measurement of personal life impact of rheumatic diseases.
in The Journal of rheumatology

Sanderson Tessa
(2013)
"Would You Decide to Keep the Power?": Reflexivity on the Interviewer- Interpreter-Interviewee Triad in Interviews with Female Punjabi Rheumatoid Arthritis Patients
in INTERNATIONAL JOURNAL OF QUALITATIVE METHODS

Tugwell PS
(2011)
Domains selection for patient-reported outcomes: current activities and options for future methods.
in The Journal of rheumatology
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 |