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Proactive disease management could result in more positive emotional and mental experiences in patients with gout.
An analysis of social media conversations revealed patients with gout may reduce mental and emotional distresse when their condition is managed in a proactive and long-term approach, rather than a reactive one, according to a study published in Rheumatology and Therapy.1
“Listening to, understanding, and interpreting the patient experience are essential aspects of effectively addressing the needs of individuals within a particular community,” wrote co-lead investigator Maurice Flurie, PhD, associated with the TREND community, and colleagues. “A unique aspect of examining gout-related social media conversations is the ability to better understand the intersection of clinical management and emotional impacts in the gout community.”
Social media groups dedicated to specific disease communities have given patients a platform to express their experiences and seek out important resources. Social media listening (SML) has been developed to evaluate these real-world data to understand the impact of the disease on a patient’s daily life. Previous studies have used this technique to analyze the aspects of the disease experience, including quality of life, treatment perceptions, and the diagnostic process, to uncover what matters most to these patients.2
Investigators evaluated 2 social media sources (a Facebook group: The Gout Support Group of America, and a public subreddit: r/gout) using natural language processing techniques to compare the general sentiment and emotional language linked to both proactive and reactive management of gout. More than 120,000 posts, comments, submissions, and replies were included in the assessment.
Conversations with a high likelihood of discussing disease management were identified. These conversations were then categorized by management type—either proactive or reactive. Proactive experiences were defined as treating the underlying causes of the disease, while reactive experiences were focused on treating the symptoms as they arise. The polarity, either positivity or negativity, of the language and emotions of statements given by patients with gout was evaluated according to management type.
Approximately 1 in 4 statements had a high probability of discussing disease management. Reactive management (urgent and emergency care) was mentioned in 0.5% of statements (approximately 1 in 200), while proactive management (outpatient-delivered primary care) was mentioned in 0.6% (approximately 1 in 150). A total of 520 reactive management statements and 654 proactive management statements were identified.
Results indicated the effect of statements was stratified by disease management type, where proactive management included more positive language when compared with reactive management.
Reactive management was associated with a significantly larger proportion of negative words (59%) when compared with proactive management (44%). Proactive management had a significantly more positive mean polarity when compared with reactive management statements (mean standard deviation [SD], .19 [.21] vs .02 [.26], respectively; P <.001).
Reactive statements were also more likely to use the word “fear,” whereas proactive statements were more likely to include the word “trust.” In turn, investigators believe proactive disease management could result in more positive emotional and mental experiences in this patient population. They also encourage the use of educational resources to learn more about and adhere to a proactive management approach.
Investigators noted as this is one of the first SML studies focused on the mental and emotional experiences of patients with gout, findings should be interpreted with caution. Additionally, they were unable to analyze the degree to which certain populations were represented or underrepresented in the study, which may impact generalizability.
“Proactive management can, in addition to better pain control, result in reduced negative mental states and empower patients with increased confidence and trust in the health care system,” investigators concluded. “Driving more gout care to proactive settings could result in less-reactive flare-associated patterns of care with broad impacts on their overall emotional state as well as comorbidities and perceived stigma.”