Approximately 15 million people in the US have chronic obstructive pulmonary disease (COPD) and millions more are thought to have it but have yet to be diagnosed.
This lung disease includes the conditions emphysema and chronic bronchitis, and is a leading cause of both disability and death in the country. It manifests as inflammation and damage to the lung’s tissues and air sacs, which cause significant breathing problems among patients. Unfortunately, COPD gets worse with time.
How are patients and HCPs using TikTok and Facebook to share the realities of this disease?
The Trends Section provides an overview of some of the most recent and relevant topics that relate to particular health conditions.
It features a selection of the topics that have the fastest growing Google search interest across the last three months, and reflects the inquiries of patients, healthcare providers, scientists, and others who are invested in the topic.
This is valuable to understand people’s interests and concerns at the present moment, and often include the U.S. states that have the highest interest in a topic.
Quilt.AI brings these trends to life through an analysis that incorporates both cultural and scientific lenses.
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Search interest for COPD end stage grew by 50% in the last 3 months, from May 2022 to July 2022.
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There has been an increase in searches for end-stage COPD over the past three months. According to the CDC, more than 16 million Americans have chronic obstructive pulmonary disease (COPD), a group of lung conditions that includes emphysema and chronic bronchitis. This lifelong respiratory disease gets progressively worse, and causes inflammation and damage that can affect airflow and lead to breathing difficulties.
At the end stage of COPD, people might experience shortness of breath, delirium, fatigue, sleep difficulties, psychological challenges and even chronic respiratory failure. Most COPD patients are not looking for invasive treatment options, but ways to improve their quality of life. Interventions may include: medications (bronchodilators, steroids, and pain relievers), pulmonary rehabilitation, and mental health support.
Healthy lungs are an essential part of the respiratory system. They allow fresh oxygen to enter the body and remove waste gases, such as carbon dioxide. Many people with COPD turn to dietary supplements and herbal medicine, as well as conventional Western medicine, to treat lung disease. The most commonly seen are n-acetylcysteine, ginseng, and vitamin D.
There has been a 130% increase in searches for lung support supplements in the last 3 months. This may be due to the growing overall interest in alternatives to Western medicine. Many people are turning to such options to treat their diseases, COPD among them. Given the prevalence of social media in everyday life and the amount of people sharing their stories, patients are perhaps increasingly inclined to try supplements and vitamins seen on these platforms to help treat their COPD.
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Search interest for Lung support supplements grew by 130% in the past 3 months, from May 2022 to July 2022
Search interest for MAC lung disease grew by 219% in the last 3 months, from May 2022 to July 2022.
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MAC lung disease is an infection caused by a group of bacteria called Mycobacterium avium complex (MAC). COPD is one of a handful of factors that can increase the risk of developing MAC infection. MAC bacteria naturally reside in soil and water, and stirring up soil or dust can make the bacteria airborne. The infection is treated with multiple rounds of antibiotics.
There has been a 219% increase in searches for MAC lung disease in the last 3 months. This increase may be associated with the seasonal changes in many parts of the US. As the weather gets warmer, more people tend to go outside to garden or work with soil, increasing their exposure to MAC. It is likely that people were searching for the two conditions together to understand how they are related.
Marijuana has recently overtaken tobacco as the most commonly smoked substance in the US, and there has been a great deal of buzz about the medicinal benefits of marijuana leading up to this finding. The constituents of marijuana smoke are similar to those of tobacco smoke. Given these similarities, there is concern that the health risks of regular marijuana smoking may be similar to those of habitual tobacco smoking. COPD, which is associated with high morbidity and mortality, is among those risks.
There has been a 16% increase in searches for “can marijuana cause COPD.” This increase may be due to the growing popularity of the use of medicinal and even recreational marijuana. As marijuana use continues to rise, it is likely that its use will present a growing concern among people with COPD.
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Search interest for can marijuana cause COPD grew by 16% in the past 3 months, from May 2022 to July 2022.
Search interest for covid and COPD grew by 12% in the last 3 months, from May 2022 to July 2022.
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The danger COVID-19 poses to people with COPD is predictable as the world has witnessed that those with chronic lung and inflammatory conditions tend to experience COVID-19 more severely. Research has confirmed that COPD puts one at higher risk of getting seriously sick if infected with the COVID-19 virus. The mortality rate for those with COPD and COVID is 15%, compared with 4% for those with COVID but without COPD.
There was a 12% increase in searches for COVID-19 and COPD seen in the last 3 months. As COVID-19 rates spiked in the US, there has been an associated spike in patients searching for COPD and COVID-19 together.
The Culture Section highlights emerging cultural trends, new products, and notable dialogue about a variety of health conditions. The purpose of this section is to zoom in on what has been happening within the cultural and professional landscape of a particular health condition–stories that are often missed by quantitative searches.
By featuring influential social media items, patient discourse, professional dialogue, product innovations, and impactful news items, this section illuminates the lived experiences of many patients, while also providing a snapshot of the developments happening around them.
Here, Quilt.AI offers a detailed and nuanced perspective of what is new and what is meaningful.
Both COPD patients and family members are using TikTok to publicly share how difficult daily life is with the disease. These videos typically show them struggling to breathe or complete daily tasks.
Besides shortness of breath and cough, COPD comes with many lifestyle and mental health challenges – challenges that are often unknown to those who don’t suffer from the condition.
Several TikTokers have shed light on these ‘dark sides’ as an effort to raise empathy and awareness for those with COPD. Challenges related to COPD include feelings of frustration, depression, and fear. Videos talking about these challenges have provoked strong emotion from viewers, and have encouraged even more COPD patients to share their stories in the comments section.
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People are posting videos about themselves or loved ones with COPD on TikTok in an effort to encourage people to stop smoking. Sometimes, these videos are tributes to family members who have passed away.
These videos ask viewers to learn from the mistakes of others who had to face a preventable battle with COPD. Underscoring the fact that smoking is one of the causes of COPD, these videos sometimes include the #quitnow or #quitsmoking hashtags.
Using the hashtag #COPD, HCPs and others who are invested in various health topics have utilized TikTok to offer advice to COPD sufferers.
Most notably, breathing coach Elizabeth Moffett (@thebreathingcoach) has a video that outlines the warning signs of a COPD exacerbation; this video has been viewed 3.2K times.
Another recent video features her explaining the top 5 causes of shortness of breath for those with COPD, which might be useful to patients as they navigate their medical challenges with their healthcare team.
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As COPD is a progressive, life-limiting condition, many people with the condition and their loved ones are turning to social media to gain perspective on what to expect as the disease progresses.
Palliative care physician Dr. Samantha Winemaker is one of the most prominent palliative care voices on TikTok. Based in Canada, her content speaks to a North American (and often global) audience. She has one of the most viewed recent TikTok videos on the progression of COPD; it has been viewed 121.2K times since it was posted on June 20.
Hospice Nurse Penny (@hospicenursepenny) addresses many end-of-life and hospice care questions, and her video about what to expect with COPD specifically has been viewed 42.5K times.
Both practitioners have accessible communication styles that outline what dying with COPD looks like. These videos provide valuable guidance, esp. to the loved ones of those with COPD, on how to prepare for the sad but inevitable end.
There is a very active COPD community on Facebook with 2.8K members from the US and across the globe. It functions mainly a patient support community, and occasionally shares news about developments related to the condition. Members regularly post relatable memes that tap into their shared challenges in daily life, as well as a great deal of humorous posts and memes.
COPD has a disease trajectory characterized by a gradual decline with some serious exacerbations that can often end in unexpected death. Thus, COPD is a very scary condition to have. These types of online communities offer much-needed understanding and support to patients.
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