Background Advances in the rheumatology treatments rely on recruitment and retention of patients to clinical trials. National surveys reflective of the UK population by the National Institute of Health Research and the Association of Medical Research Charities in 2011 and 2012 demonstrated that the UK public regarded clinical research as highly important. We wanted to assess how research was perceived amongst our rheumatology patients taking DMARDS.
Objectives To assess how research was regarded amongst rheumatology patients.
To assess patient willingness to take part in various types of research.
To identify barriers to taking part in research.
To raise awareness of rheumatology research and its potential benefits.
Methods An anonymous 19 point questionnaire was devised based on previous national questionnaires regarding perceptions of research. The questionnaire was sent to all 1568 rheumatology patients who were registered on a system for monitoring the blood tests of patients taking DMARDS.
Results 575 replies were received. 53% of patients were aware that research took place in our hospital. 98% stated that research was very important or fairly important. No respondents felt that it was not important at all and only 0.3% felt that it was not very important. 93% thought that their local NHS should be either required or encouraged to support research.
The majority of patients would consider taking part in research that involved trailing a new medicine or treatment (59%), having a blood test (90%), talking to researchers about their condition or family history (82%) or allowing researchers to review their records (79%). 72% of patients would be willing to come to hospital for extra visits to take part in a research programme.
Barriers included time (49%), costs (23%), effort (16%) and fear of hospitals (7%). Patients’ greatest concerns regarding research were the potential side effects of treatment (66%).
84% of patients felt that taking part of research could be beneficial including increased monitoring of the condition (67%), access to new treatments (68%) and increased education (64%).
Conclusions Our cohort of rheumatology patients taking DMARDS were willing to take part in research and felt that research was important. Half the patients were unaware that research took place in our department. A third of patients felt unable to attend hospital for the extra appointments that would be involved. Rheumatology patients have positive attitudes towards research and need to be made aware of research opportunities.
UK Clinical Trials Gateway: Public and Patient Survey 2012, National Institute for Health Research
Public support for research in the NHS, Ipsos MORI poll topline results, Association of medical research charities 2011
Disclosure of Interest None Declared