Qualitative research in RA

A crucial part of the evidence base This editorial refers to ‘ “I'm hurting and 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’, by Sarah Hewlett et al., doi:10.1093/rheumatology/keq455, on pages 69–76. Qualitative methods have been used in health-care research since the 1970s, but their origin dates back to early 15th- and 16th-century anthropological studies. In 2006, Ong and Richardson [1] wrote an editorial in this journal describing the important contribution of qualitative research to musculoskeletal health. In addition to understanding patients’ experiences, they discussed how qualitative methods are used to understand processes, evaluate policy, explore patient–clinician relationships and, increasingly, to complement quantitative methods. In this issue of Rheumatology, Hewlett et al. [2] describe the findings of an international collaborative qualitative study involving patients with RA. The Hewlett study elegantly highlights three important themes: first, the specific findings and their relevance to clinical practice in supporting patients with RA; secondly, the potential importance of qualitative research as part of the evidence underpinning clinical practice; and thirdly, the potential for international collaboration in such research. ‘Flare’ is a term many clinicians use in day-to-day practice without a second thought. Although the researchers defined it as ‘an exacerbation of symptoms sufficient to consult for a review of medication’, study patients described an array of experiences ranging from minor to severe. Indeed, health-care practitioners may consider flare as requiring intervention, but in some accounts it is described as manageable and expected. Hewlett et al. [2] report that some clinicians at OMERACT 9 alluded to flare as a unidimensional increase in synovitis, but the study demonstrates that patients perceive a far more complex process involving reduced cognition and social participation as well as stiffness, loss of function and fatigue. As the authors point out, research in back pain has highlighted commonly used terminology with different meanings to patients and clinicians [3]. Parallels can be drawn in other chronic musculoskeletal conditions. In OA, for example, the term ‘wear and tear’ is used almost universally; this term could have several different connotations, but patients’ understanding of it has not been explored fully. Hewlett et al. make the important point that the study findings are not compatible with using the inverse DAS improvement criteria to measure flare, given that a very minor exacerbation of symptoms may be interpreted as flare, in contrast to large changes necessary to perceive improvement. In addition, the study describes how the global visual analogue scale (VAS) may be downplayed by patients, who interpret it as representing a measure of how they are coping with disease rather than the global effect of arthritis on them, resulting in a potential underestimation of disease activity. This is in contrast to previous validity issues highlighted with DAS-28, which concern how this composite score can overestimate RA activity, for example, in secondary OA or FM [4]. The patient interpretation of VAS may shed light on the well-recognized phenomenon of clinicians writing in patient notes ‘doing well’ or similar, when in reality, the patient continues to accrue joint damage and lose function; if the patient is coping they may be uncomplaining in clinic. This study also has an important patient education message. The authors defined flare for the participants as the point at which you want your medication reviewed. One could infer that the participants in the study were a selected group with high levels of knowledge about RA and good self-management skills. The quotes presented illustrate a wide range of self-management strategies and that help was sought when symptoms could no longer be contained. What about the patients who do not seek help when flaring? How can clinicians identify the patients less likely to seek help? Qualitative research is best placed to explore the needs of this hard-to-reach patient group. Qualitative research has a crucial role to play in influencing clinical practice, by shedding light on patient experience. For example, Donovan and Blake's innovative study of consultation tapes and interviews revealed that typical patterns of reassurance in arthritis were often not effective, as patients interpret reassurance in the context of their own views and perceptions rather than as intended by the clinician [5]. Increasingly, qualitative methods are integrated closely with different stages of quantitative research: in study design, sampling or analysis [6]. Recently, qualitative research has developed a further important role in exploring the reasons for large gaps between research evidence and practice, often by unpicking the barriers and challenges to implementation of new guidelines or evidence. Van Tuyl et al. [7] shed light on reluctance to prescribe triple therapy for RA, uncovering that it was clinicians who mistakenly assumed patients would react negatively to such a regimen, whereas the patients asked (in this study) were very positive about aggressive treatments. International collaboration in qualitative research is unusual, but examples do exist [8]. This collaboration across countries may lull the quantitative reader into a false sense that this represents a quality measure. Certainly, the purposive nature of the sample, the breadth of backgrounds of the researchers (including a patient) conducting the analysis and the clear description of the analysis all act to enhance the trustworthiness of the data in this study. While the term generalizability is usually associated with quantitative research, the transferability of qualitative findings may be enhanced with a purposive sample from different societies. However, qualitative research tends to be oriented to the context and social world of the participants [9] and in a wide sample, rich accounts or thick description may be lost. For example, the authors report no difference in responses across nationalities, but one wonders if differing views and descriptions about flares may have existed in the data, especially given the disparity in the groups of patients from each country, e.g. American patients had a greater use of biologics and lower DAS. However, we practise in the context of increasing globalization of health care, with international randomized controlled trials, wider adoption of DAS and moves to standardize RA guidelines, e.g. for biologics, across countries; the need for more international collaboration in rheumatology research is clear. In summary, Hewlett et al. illuminate the patient perspective of flare, which has relevance for clinicians’ day-to-day practice and for patient education programmes. The study also acts as an important foundation on which to develop outcome tools that measure flare; an example of how qualitative research can inform clinical practice, the design and interpretation of quantitative studies and health policy. Continuing challenges include ensuring that, first, high-quality studies are performed addressing important questions and secondly, that the results of such studies do influence practice. Disclosure statement: The authors have declared no conflict of interest.