Research Priorities in Gout: The Patient Perspective

To the Editor:

Gout is the most common inflammatory arthritis in adults¹. PubMed publications for gout increased 3-fold from 181 in 2000 to 552 in 2012, indicating an increased interest in gout. The thinking is evolving on how to set the future research agenda for gout. The creation of the Patient-Centered Outcomes Research Institute (PCORI), a public-private partnership for funding clinical and patient-oriented research in the United States (www.pcori.org/research-we-support/priorities-agenda/), is an example of this change. PCORI recommends the involvement of patients at every stage of the research activity, including the selection of the research question. Outcome Measures in Rheumatology Clinical Trials (OMERACT), an international consortium of researchers and methodologists, pioneered active patient involvement in the development of disease outcome measures more than a decade ago (www.omeract.org). Including all the involved parties in the research is the way of the future, yet patient participation in prioritizing and conducting research is limited. To our knowledge, there are no studies of patient input into research-agenda setting for gout. Therefore, we aimed to perform a qualitative study and asked patients with gout what research should be done on that topic.

Patients of our community-based outpatient clinic who had an International Classification of Diseases, ninth revision, common modification code for gout (274.xx) during 2011–2012 were invited to participate in a nominal group. We used the nominal group technique (NGT) and asked a single question to 2 patient groups: “If you were a medical researcher, what area of gout would you focus on?”

The NGT is a variant of traditional focus group methods. It is aimed at developing an inclusive list of issues related to a specific question and then soliciting feedback on the relative importance of these lists through rank-ordering procedures^2,3,4. The NGT approach promotes more even participation rates compared to a focus group with an equal weighting of the input from all participants. Patients noted their responses independently on a worksheet, nominated each gout-related research question, then elaborated on, discussed, and consolidated the responses. Patients chose their top 5 responses and gave them individual rank scores from 1 to 5 (higher score indicating the top choice). These scores were aggregated for group rank order of the questions, with higher scores representing the highest-ranked research questions. The Institutional Review Board at the University of Alabama at Birmingham approved the study.

Two nominal groups were conducted with 13 patients (28 patients were invited), of whom 10 patients were African Americans and 3 white; 6 men and 7 women. Mean age was 63 years (SD 10). Patient groups identified and ranked these gout research questions (Figure 1). The top 3 research questions were as follows for group 1: How does the diet affect gout? What is the effect of different medications used for the treatment of gout? What role do genetics play in the risk for gout? Comment/questions for group 2: More research is needed into pain and swelling associated with gout. What is the role of food, supplements, and vitamins in causing gout? What is the comparative effectiveness of gout medications?

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Figure 1.

Identification of themes by the nominal groups.

In comparison, a recent UK gout study (with no gout patient involvement) identified 4 research priorities: Whether colchicine or nonsteroidal antiinflammatory drug prophylaxis is required when titrating urate-lowering therapy; the optimal dose of colchicine in acute gout; the optimal target for uric acid level; and the effectiveness of nonpharmacological interventions in gout management⁵. All but 1 priority focused on pharmacological interventions. Patients in our study identified priorities that were somewhat different from those reported by gout researchers. Three major differences were noted.

First, patients selected several research questions that were linked to the burden of gout on patients’ lives (pain, swelling, disability), which were not listed as research priorities by researchers. This finding shows that different people bring complementary perspectives that enrich and broaden the clinical research agenda related to gout, a very painful, symptomatic disease. Second, patients were interested in promoting research to prevent gout, which was very encouraging. Third, the role of diet or dietary supplements in gout ranked among the top 2 priorities by both patient nominal groups. Their interest in diet and supplements for disease management was also reflected in additional research questions (what causes uric acid to build up in your body? etc.). This finding confirmed a keen interest in diet and dietary supplements among patients. Comparative effectiveness research of pharmacological treatments was a priority for both patients and researchers.

A key limitation of our study was a small sample size. Because of our focus and purposeful oversampling for racial minorities that are usually not studied, the findings may not be generalizable to all patients with gout. Another limitation was that some research questions chosen by patients, such as the role of diet in gout, and differences in mediation efficacy and side effects, suggested the need for more patient education rather than research. The main strengths of our study were a focus on the patient perspective and the use of NGT methodology that allowed ranking of priorities. Our study adds new knowledge to the previous priority-setting exercises that included researchers only⁵ and to the qualitative research in areas such as patient knowledge, beliefs, and treatments^6,7,8.

Our study highlights the priorities for gout research as set by patients. Findings suggest that patients can provide a unique perspective in setting the research agenda. Our findings must be interpreted considering study limitations, including small sample size and generalizability challenges. Researchers and funding agencies should now take these priorities into consideration while setting a future research agenda.