A good example of a successful project involving patient research partners is the DELAY project. The DELAY project (www.earlyarthritis.co.uk) assesses reasons for delay in GP consultation reported by patients with Rheumatoid Arthritis (RA). The project has three phases. In the first, a questionnaire assessing reasons for delay was developed and validated. The second assessed the reliability of the questionnaire over time, by administering it to people with RA at two time points. The third surveyed a large cross-sectional sample of people with inflammatory arthritis to assess the reasons for delay in GP consultation in relation to socioeconomic and demographic variables.
(click the image to view the poster in PDF format)
The DELAY patient research panel has had a lot of impact on the project itself and the development of future research. For example, the need for the RAPID project has, in part, been identified by members of the user group supporting the DELAY study.
The Rheumatoid Arthritis the Public InformeD (RAPID; http://www.birmingham.ac.uk/ra-rapid) project started in December 2012 and will initially run for two years. It will explore the perceptions of Rheumatoid Arthritis (RA) amongst members of the general public, their knowledge of RA and their reaction to the presentation of RA symptoms. At the end of the project we will have a better understanding of why people might delay in seeking medical attention when experiencing the early symptoms of RA. This will help in the development of strategies to reduce this delay, through public health interventions. RAPID is collaborative research between researchers from the University of Birmingham (Prof Karim Raza, Dr Rebecca Stack, Kanta Kumar & Dr Gwenda Simons) and the University of Keele (Prof Christian Mallen)
RAPID has an active patient research panel of around 12 people. We already had a number of meetings and consultations with members of the panel. Several important changes to documentation and research design have already occurred as a result. Members are also advising us on the content of the RAPID website.
Other tasks we hope our panel can help us with during the course of the project include:
Feedback on the questions we develop for the big survey and suggestions for additional questions.
Involvement in the development of lay summaries of the key research findings.
Developing ways of looking at how people search for information on RA and what information is available to the general public.
Input in the development of public awareness interventions.
The EuroTEAM (Towards Early diagnosis and biomarker validation in Arthritis Management) project (http://www.team-arthritis.eu/) has been funded by the European Union (FP7 Health Programme) for 4 years and started in November 2012. Through EuroTEAM, approaches will be developed to predict the onset of rheumatoid arthritis (RA) in people who do not yet have the disease. Ultimately, this will help in the development of treatments to prevent people from getting RA in the first place. The project is co-ordinated by Professors Chris Buckley and Karim Raza at Birmingham University and various members of the Rheumatology Research Group are involved in this pan-European project through a number of work packages (i.e. separate research projects). One of the work packages which involves patients and family members as research partners at Birmingham University is work package 4 (Dissemination & user integration).
Work package 4 Summary
(see also: http://www.team-arthritis.eu/wp4-dissemination--user-integration.html)
An ideal intervention in a chronic inflammatory disease such as rheumatoid arthritis (RA) would be a preventive one. In order to develop preventive strategies and therapies two key developments need to occur: (1) Biomarkers need to be identified that can be used to predict an individual’s risk of developing RA. (2) Modifiable disease mechanisms need to be identified and characterized in the early phases of disease. The key objective of the Euro-TEAM consortium is to specifically identify diagnostic biomarkers and disease mechanisms operating during the transition from health to RA.
Work package 4 of Euro-TEAM will directly involve patients and other specialists, particularly from the fields of genetics, ethics and patient and public involvement in helping to visualize and communicate risk following a positive biomarker test important objectives in work package 4 are:
1. To understand the current perspective of individuals in different pre-RA phases about:
(1) Rheumatoid Arthritis (RA); (2) the meaning and perception of “risk” and “risk assessment”; (3) the utility of predictive tests in the context of RA; (4) their willingness to undergo predictive tests for RA.
2. To develop strategies and tools for communication with and education of individuals in different pre-RA phases about: (1) the different stages of RA and the prognosis of RA; (2) the role of interacting biomarkers in prediction of the development of RA; (3) how lifestyle and behaviour factors affect the risk of developing RA and how these can / should be modulated.
3. To assess the impact of these communication and education strategies on an individual’s willingness to undergo predictive tests and their subsequent behaviour.
Access to care and treatment for patients with primary Sjögren’s Syndrome...
Primary Sjögren’s syndrome (pSS) is an autoimmune condition primarily affecting fluid secreting glands. Inflammation within the glands reduces the production of tears and saliva, therefore, the characterising symptoms of pSS are dry mouth and dry eyes. Other symptoms include joint pain, bowel problems, extreme fatigue, and sleep disturbance. This range of symptoms, particularly dryness of the eyes, mouth and vagina can be associated with complications such as eye and mouth infections, tooth decay, peripheral neuropathy and cancer of the lymphatic system occurring in 5% of patients. The needs of patients with pSS are complex, however, very little patient focus research has been conducted in this area.
The early diagnosis and treatment of pSS may be beneficial as residual glandular tissue not yet destroyed by the inflammation process can respond to medication to stimulate fluid production. Also, disease modifying drugs may be used more routinely in the future to limit the damage cause by inflammation and prevent further destruction of glandular tissue. However, evidence from other conditions (particularly rheumatoid arthritis) illustrates that disease modifying drugs work best in the earliest phases of disease. However, little is known about the length of time between symptom onset, and the patient initially accessing help for symptoms. Furthermore, little is known about how long it takes general practitioners to recognise pSS, and make referrals to specialist services including Rheumatology and dental specialists.
University Hospitals Birmingham Foundation Trust (UHBFT) currently oversees the care of more than 100 patients with pSS, in addition to patients who have developed Sjögren’s in association with other auto-immune diseases. In addition, UHBFT is increasingly being recognised as a centre of clinical excellence in pSS, and we are keen to ensure that patients with pSS receive the best care and that their priorities and needs are recognised.
The aim of our research is to explore access to care, coping strategies and ways of promoting self-management in patients with pSS. Through qualitative interviews with patients with we will explore access to care and self-management behaviours amongst people with pSS. We will also undertake a cross-sectional survey of newly diagnosed patients with pSS exploring access to care at the onset of illness
Public and patient involvement in the design and development of health services is vital, therefore, we are keen to develop our partnerships with patients and relatives.
In collaboration with our patient partners we intend to identify the priorities of patients, and the areas of research which will have the largest benefit to patients.
For more information about this project, please contact Dr Rebecca Stack
Adherence to medication in RA...
Patients’ beliefs and perceptions play an important role in shaping their decisions about starting and continuing to take medications. Several studies have documented that there are differences between individuals from different ethnic groups in the way that medications are viewed. Poor adherence to prescribed medicines is an important issue as about 40 percent of patients with chronic diseases do not take their medications as prescribed. Treating conditions such as rheumatoid arthritis (RA) with disease modifying anti rheumatic drugs (DMARDs) significantly improves clinical outcomes. Recent work from our group has investigated beliefs about medicines in RA patients of South Asian and White British origin. Compared with patients of White British origin, those of South Asian origin had more concerns about DMARDs and viewed medicines in general as being harmful and overused. Of the variables that we studied, the one that associated most strongly with a belief that medicines in general were harmful and overused and that DMARDs in particular were of concern was ethnicity. In the first part of the project we assessed whether these beliefs had an impact on adherence to medicines using quantitative approach. In this study we want to investigate the barriers to poor medication adherence using qualitative approach. Patients who took part in the 1st phase and gave permission to be contacted will be invited for an interview to explore barriers and facilitators to medication adherence. Patients will be invited for a one to one, one hour interview to discuss issues surrounding medication adherence. Interviews will be audio recorded and transcribed by the researcher.
Kanta Kumar is a doctoral research fellow and this research forms part of Kanta’s PhD work. Other projects are currently being developed. For information about this and other projects, please contact Kanta Kumar on firstname.lastname@example.org