The terminology used to describe gout in the medical literature is vague and sometimes confusing, new research finds.
The study isn't the first to suggest that gout-related language needs an overhaul, but it is the first to take a quantitative look at how researchers use terms. Inconsistently, it turns out: "Gout" in the medical literature is used to mean everything from the underlying condition of uric acid build-up to painful flares to tophaceous presentation, researchers reported in September in the journal Arthritis Care and Research.
Meanwhile, terms like "mild gout," "moderate gout," and "severe gout" are ambiguous because it's not clear whether they refer to the severity of a gout flare or to actual joint damage.
Language matters. As research on health literacy has established, patients frequently leave the doctor's office with a grasp on less than half of the information imparted. Doctors tend to overestimate their patients' understanding of medical terminology, and gaps in communication can lead to problems adhering to a treatment plan, according to a 2006 article in the Journal of General Internal Medicine. In one 2005 study, only 18 of 43 English-speaking patients discharged from a New York hospital could accurately state their diagnosis, and just 12 knew all of the medications they'd been prescribed. A 2008 study in the journal PLOS ONE highlights the influence of word choice. In that study, students who heard medicalized terms for a condition instead of lay language (myocardial infarction versus heart attach, for example), viewed the medical terms as signifying a more serious condition (mean of 4.95 (SE=0.27) versus 3.77 (SE=.24) on a 10-point scale).
Gout has long been plagued by imprecise language even among medical professionals, University of Florida rheumatologist N. Lawrence Edwards and colleagues wrote in their new paper. In one of the oldest written references to the disease, in Latin, it's referred to as "the gout that is called podagra or arthritis" — a trio of terms to describe a single disorder.
Edwards and his colleagues gathered all gout-related open-access papers published on PubMed between May 2003 and May 2013 and hand-picked nearly 400 more papers on the topic. They then conducted a linguistic analysis of the resulting 2,590 articles to determine how specific gout-related terms were used.
They found "gout" most often co-occurred with the word "flares," appearing together 1,239 times. (For comparison, if the terms had occurred together by chance, they would have co-occurred a mere 61.6 times.) "Gout" also frequently co-occurred with the words "acute," "hyperuricemia," "patients," "chronic," "management," "flare," "tophaceous" and "attacks."
"[T]his single term, gout, conveys at any given time one or all of these meanings, including hyperuricemia with crystal deposition, acute gout, intercritical gout and chronic gout," the researchers wrote.
Researchers also frequently misused terms. Though serum urate is the majority of the substance of interest in blood tests, the literature contained more references to serum uric acid.
In some cases, the literature suggested a sort of ad hoc consensus on what the proper term should be. "Excretion," for example, was the term most frequently associated with gout and the decrease of serum urate levels in the blood, the researchers found, beating out "clearance" and "elimination." Excretion is also appropriate because it signals the work of the kidneys rather than the bowel, they wrote. Terms describing successful gout treatment, however, were lacking. In particular, researchers rarely discussed treatment targets or defined clinically feasible serum urate levels.
Suggesting standardized terms was outside of the scope of the article, the researchers wrote, but they hope to start a dialogue. To start, they wrote, referring to gout "flares" is likely more accurate than gout "attacks," because "flare" better communicates the sense of an intermittent worsening of an ongoing disease. Treatment language, they wrote, should center around the notion of remission rather than cure, and more attention should be paid to identifying ways to talk about successful management of gout.
Adherence to pharmaceutical treatments is also particularly challenging in gout, in part because patients are often underinformed about the importance of long-term urate-lowering therapy (ULT). Patients are frequently prescribed a fixed dose of ULT that may not be enough to lower serum urate levels to a healthy target, and they often don't receive anti-inflammatories or colchicine to prevent future flares, researchers wrote in 2012 in the journal Annals of the Rheumatic Diseases. If further flares ensue, patients may quit their medications, in part because they aren't informed about the reason long-term ULT is needed. The paper, which shared an author (Fernando Perez-Ruiz of the Hospital Universitario Cruces in Vizcaya, Spain) with the new work on gout linguistics, also argued for better communication to combat the stigma of gout. Too many see the disease as the self-inflicted ailment of the obese and drunk, the authors wrote, a misconception that dates back to the days when monarchs were the most famed gout sufferers.
In the new paper, Edwards, Perez-Ruiz and their colleagues made a similar point: Fixing how doctors talk about gout can help patients get better treatment.
"Refining medical language, regardless of category, is a daunting challenge with many considerations to be weighed, including clinician preferences, patient preferences, current scientific knowledge of the disease state, the current preferred language of the category, and others," Edwards and his colleagues wrote. "But we argue it is a necessary one and one which, if done correctly, can maximize clinical applicability, patient understanding, and ultimately, improve suboptimal outcomes."
1. A computational lexical analysis of the language commonly used to describe gout. N. Lawrence Edwards MD, Robert Malouf PhD, Fernando Perez Ruiz MD PhD, Pascal Richette MD, Siobhan Southam & Matthew DiChiara. Accepted Article, DOI: 10.1002/acr.22746
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4. The Role of Medical Language in Changing Public Perceptions of Illness. PLOS ONE. 2008; 3(12):e3875. Published online 2008 Dec 8. DOI: 10.1371/journal.pone.0003875
5. Gout: why is this curable disease so seldom cured? Doherty et al. Ann Rheum Dis. 2012 Nov;71(11):1765-70. doi: 10.1136/annrheumdis-2012-201687. Epub 2012 Aug 3.