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

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.

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.