Posts and categories

We analysed 359 questions in 287 posts by 213 individuals. The majority of individuals (171/213, 80.3%) submitted a single post. The mean number of posts per individual was 1.34 (range 1–8). For most posts, it was not possible to determine disease duration of gout, but a new or very recent diagnosis was mentioned by 41/213 (19.2%) users. A wide range of questions arose. The single most common category was about uncertainty of diagnosis (22.3% questions), with management categories (questions about medication, dietary advice, non-pharmacological management, and non-specific management) also common (Table 1). Questions about financial issues, information sources, and perceptions of gout were less common. Notably, only 10/359 (2.8%) questions were about serum urate levels.

Table 1 Categories (% questions) Full size table

Questions related to uncertainty about symptoms

The most common single category was uncertainty about symptoms. Within this category, there were three main sub-categories; uncertainty about the diagnosis of gout, atypical gout symptoms, and the timeline of disease. Examples of questions are shown in Table 2. Some community users described a course of illness different from the ‘classical’ presentation of gout, including lack of redness or swelling, prolonged symptoms, or presentation of arthritis in atypical joints, which raised uncertainty about the diagnosis. Questions about the timeline of disease, including the duration and temporal pattern of flares, were also posted, including questions about the duration of a single flare and the likelihood of having further flares after the first flare.

Table 2 Questions related to uncertainty about symptoms Full size table

Questions about medications

Questions about medications was the next most common category. There were 55 (15.3%) questions about medications. These included questions about specific named drugs, most commonly allopurinol (33 questions) and colchicine (15 questions). Questions about medications were generally cautious or negative, with key sub-categories of medication side effects, risk of flares after starting urate-lowering therapy, and deciding whether to start urate-lowering therapy. Community users experiencing flares posted questions about medications for flare treatment in real-time. Examples of questions are shown in Table 3. Additional questions related to specific drug dosing (primarily related to allopurinol and colchicine), selection of specific urate-lowering drugs, when to start urate-lowering therapy, the need for anti-inflammatory prophylaxis therapy, and drug interactions.

Table 3 Questions about medications Full size table

Questions about diet

There were 44 (12.3%) questions about dietary management. Sub-categories were questions about general dietary strategies, effectiveness of dietary changes as a management strategy, choice of alcoholic beverage, and the best weight loss strategies for people with gout. Examples of questions are shown in Table 4. There were also questions for specific advice about the value of many different foods, including yellow cheese, tart cherry, coffee, ostrich or emu meat, potato chips, rice, clams, and kombucha (fermented seaweed drink).

Table 4 Questions about diet Full size table

Questions about non-pharmacological therapies

There were 37 (10.3%) questions about non-pharmacological management, including questions about the benefits of supplements, the role of activity during flares, choice of footwear, and topical treatments during a flare. Less frequent questions related to exercise strategies, devices and mobility aids during walking, and the value of blood donation or sex to improve gout.

There were 13 questions that specifically related to supplements. These supplements included curcumin, theracurmin, multivitamin, black cherry, vitamin C, “enzyme” supplements, herb gel, and alkaline water. Questions about several supplement combinations marketed for urate or gout were also posted including: ‘Gouch’ (includes cherry extract, ginger, quercetin, boerhavia, and couch grass), celery seed extract, stinging nettle root, ‘Urcinol’ (includes banana leaf, acai fruit extract, bicarbonate of soda, yucca root, turmeric, milk thistle, artichoke leaf, and celery seed), and ‘Uric Acid Support’ (includes vitamin B complex, vitamin C, tart cherry, quercetin, and vitamin E, turmeric, bromelain, and grape seed extract).

Non-specific questions about gout management

There were 37 (10.3%) non-specific questions regarding gout management posted. These questions often included a detailed narrative about the course of the person’s experience, with a question requesting general advice from the community (for example, a detailed narrative of >500 words about the person’s previous experience, followed by “Really open to suggestions... for anything, really…… I also know so little about gout, so any information is good information, tbh.”). Requests for non-specific advice were also made during the initial flare of disease (“First attack, too late in the evening to go to the doctor. What can I do to relieve symptoms right now?”)

Less frequent questions

A number of other categories were less frequently observed, with <10% questions per category (Table 1). These categories included questions about triggers, biological causes of gout, and serum urate testing. Questions about serum urate testing included the role of portable monitors for serum urate testing at home and interpretation of an individual’s serum urate results. There were some requests for social support (“I’m 30 years old, and pretty upset that I may have to give up two of my favorite hobbies... Can someone help talk me down a bit?”), and questions about financial and employment issues such as negotiating health insurance systems, disclosure of the condition to an employer, and the ability to work once a diagnosis of gout has been made. There were also questions about sourcing of expensive medications (“They gave me a script for colchicine and i don't have insurance. ….. Any idea on how to get more in the future for cheaper?”). Questions about reliable information primarily related to electronic sources or apps that can be used to help manage gout.