When it comes to gout, it’s common for patients to not always follow their doctor’s advice. This is especially alarming because gout is a painful chronic condition that can seriously affect a person’s quality of life. Despite the availability of affordable and highly effective treatments, an alarming 56% of gout patients are not taking their prescribed medications. In order to understand why, our research team at CreakyJoints recently conducted a study to see if there was a difference in how patients and doctors think and talk about gout and its management.
We wanted to know: Does the language used online to discuss gout and treatment differ between patients and health professionals?
It turns out, yes. Our study revealed that patients living with gout focus more on food and diet, whereas medical professionals focus more on medical causes and pharmaceutical treatment. This is important because it indicates that many gout patients may not fully understand that gout is a chronic condition and that changes in diet alone cannot address it.
Comparing Medical Websites vs User-Generated Content
We discovered this by analyzing content from professional medical websites (like WebMD and Mayo Clinic) and comparing them to websites with user-generated content, like Reddit and patient blogs. We wanted to see if there were differences in the types and frequencies of words used by professionals versus patients and whether these difference indicated divergent thinking about gout.
We saved 205 professional medical webpages from WebMD, Mayo Clinic, and Gout and Uric Acid Education Society, 337 gout blogs from patient.com, and 687 posts from a gout subreddit. After processing and cleaning, we analyzed all of this content using a text analysis program called LIWC2015 that was developed by Dr. James Pennebaker, social psychologist at the University of Texas at Austin.
What We Discovered: Patients talk about lifestyle and diet. Doctors talk about disease and medication.
Our LIWC analysis helped us make two important, statistically significant findings:
- The professional medical websites had a greater health focus. They used words like doctor, pain, and disease more frequently than the user-generated websites. The user-generated websites had a greater focus on ingestion (i.e. food/drinks). They used words like eat, sweet, and feed more frequently than the medical websites.
- The professional medical websites used more risk-oriented language. They used words like lose, lack, and worse more frequently than the user-generated websites. The patient blogs and Reddit posts were more reward-oriented. They focused on potential benefits of treatment and prevention. Words like optimistic, success, and good were used more frequently.
The word cloud in Figure 1 shows the 30 most common words in each type of website based on frequency.
Why is this important for you?
It’s a common myth to believe that diet and lifestyle alone can manage gout. As a matter of fact, 1 in 3 gout patients incorrectly believe gout can be completely avoided by eliminating certain foods.
According to Dr. N. Lawrence Edwards, a rheumatologist and chairman of Gout & Uric Acid Education Society, “Physicians all too often see patients who believe they can successfully manage their gout with diet alone. But even with extremely rigid diet restrictions, most gout patients will only be able to lower their uric acid levels slightly—not nearly enough to achieve a healthy level to control flares and reduce risk for long-term damage.”
More research is needed to determine the most effective ways to encourage patients to seek treatment beyond diet and lifestyle changes. “We need to get the word out that there are many highly effective and affordable drugs to treat gout,” says Dr. W. Benjamin Nowell, Director of Research at CreakyJoints. “Perhaps our popular notion from the middle ages that gout is a disease of kings due to rich foods is so vivid that it gets in the way of thinking of gout as a form of arthritis. Gout is a chronic condition. Although uric acid levels are affected somewhat by diet, making changes in what we eat or drink are not really going to improve the main problem: too much uric acid in the blood.” Nowell and his colleagues at CreakyJoints and the University of Texas at Austin have more work planned in this area.
The results of this study were first presented at the American College of Rheumatology (ACR) Annual Meeting 2017, the largest global rheumatology medical conference. Rheumatologists and researchers from across the world meet to discuss clinical pathways, treatments and research. See the full abstract here.
Participating in Future Studies
If you are diagnosed with gout or another musculoskeletal health condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first ever patient-led, patient-centered research registry for joint, bone and inflammatory skin conditions.