Gout is a chronic disease affecting more than 9.2 million adults, or approximately 4% of the population in the United States alone [1]. Gout is caused by hyperuricemia with resultant monosodium urate crystal deposition and development of tophi in peripheral joints and soft tissues [2]. This disease has substantial impacts on physical function, with persons living with gout experiencing severe pain and distress from arthritic flares [2], multiple types of disabilities [3, 4], and increased occurrence of systemic comorbidities, including hypertension [5,6,7], chronic kidney disease [5, 7,8,9], and cardiovascular disease [5, 8, 10, 11]. Additional impacts include decreased work productivity [12], increased health care costs [12], and decreased quality of life (QoL) [13,14,15]. The physical distress of gout particularly affects QoL, especially with increased frequency of attacks and intensity of pain during and between attacks [14, 15]. More recently, the association between gout and negative mental health (e.g., anxiety, depression) and its effects on QoL for patients has come to light. A recent meta-analysis identified associations between depression and anxiety with gout, with a call for more research focusing on mental health outcomes in patients following a gout diagnosis [16].

Growing evidence strongly supports a genetic component in hyperuricemia and gout pathogenesis [17,18,19,20,21], but gout is still predominantly viewed as a “lifestyle” disease [22, 23]. The perception that poor dietary and lifestyle choices are the primary causes of gout deepens the social stigma surrounding the disease and heavily contributes to poor medical management and negative patient experiences in the health care setting [22,23,24], as well as overall reduced QoL [13, 15, 25]. A recent study [22] compared rheumatologists’ perceptions of disease contributors in patients with gout vs. rheumatoid arthritis (RA). Rheumatologists perceived patient behavior, diet, body mass index, and treatment nonadherence to be significantly greater contributing factors in gout management than in RA management. Rheumatologists perceived their patients with gout as being largely responsible for their condition, less compliant with medications, and less likely to benefit from therapies. Further, rheumatologists did not think differently about their patients with controlled and uncontrolled gout, suggesting a gout-specific bias that is independent of disease severity [22].

Pain is the most predominant and severely debilitating gout symptom, and it has been shown that patient perception of greater pain severity during and between flares is directly associated with increased stigma; it is thus patients who are the most disabled by gout-related pain who are likely to experience greater stigma and subsequent impact on their psychological well-being [24, 26]. Therapies exist that can mitigate painful flares and the resultant mental and emotional impacts; however, various factors can reduce patient adherence to interventions.

Maintaining serum urate levels below 6 mg/dl reduces the occurrence of acute gout flares. Although oral urate-lowering therapies (ULTs) are effective in most gout cases, they are widely underdosed due to a variety of factors. At the patient level, poor compliance can result from shame around having gout and from inadequate education surrounding the cause of gout [22,23,24]. At the provider level, physicians are not always consistent in their adherence to current guidelines and management approaches [27, 28], particularly with regard to adjustments to interventions when treatment goals are not met (i.e., clinical inertia) [29, 30]. This undertreatment of gout can lead to uncontrolled disease that is refractory to oral ULTs. As a result, patients with gout often seek ambulatory facilities when in pain with flares, which may cause additional negative emotional responses and dissatisfaction with their care.

Proactive management refers to outpatient-delivered care aimed at addressing the underlying cause of a disease to reduce or fully eliminate the need for symptomatic management in the context of a long-term, preventative treatment plan. In contrast, reactive management refers to urgent or emergency care in response to concerning/bothersome symptoms after they present. Suboptimal management of gout leads to both emotional and physical distress [14,15,16].

The objective of the current study was to characterize aspects of the gout experience, as discussed in posts and comments on social media, which might reveal different emotional and mental states. Specifically, we sought to understand how different approaches to gout management (i.e., reactive vs. proactive management) could facilitate different mental and emotional health outcomes.

Listening to, understanding, and interpreting the patient experience are essential aspects of effectively addressing the needs of individuals within a particular community. In recent years, social media platforms dedicated to specific disease communities have offered an outlet for those living with a particular condition to seek out resources and express their personal experiences. Social media listening (SML) has been used to analyze these real-world data to amplify patient voices and understand the impact of the disease on their daily lives [31]. Previous SML studies have offered insights into various aspects of the disease experience, including the diagnostic process, treatment perceptions, and impacts on QoL [31,32,33,34], which are not easily captured using traditional approaches. Natural language processing (NLP) is a subfield of artificial intelligence (AI) focused on understanding human language. Here, we employed an NLP analytics engine to identify prevalent terms and concepts in social media data. A priority in selecting social media communities for this study was capturing a large and diverse range of perspectives. To this end, two active social media communities were selected from two of the largest social media networks used today: Facebook and Reddit. Both outlets are used by billions of people from around the world, with millions of groups dedicated to specific topics (these topic-centered communities are called Facebook groups and subreddits, respectively). The engine was applied to self-reported Facebook and Reddit conversations on gout to hear about and report experiences directly from patients with gout and their communities.