An exploratory study to understand how people use Twitter to share experiences or information about spinal stenosis

Background Spinal stenosis is a narrowing of the spinal canal that may compress neurological tissues resulting in pain and disability. Although previous qualitative studies have solicited data regarding the life experience of patients with spinal stenosis or their opinions on relevant non-surgical treatments, their data was collected from participants in a controlled setting. Therefore, it remains unclear whether patients’ or caregivers’ concerns/opinions about spinal stenosis would be different in a non-experimental environment. Since Twitter is a popular online platform for people to share information and interact, it may reveal people’s thoughts and attitudes about spinal stenosis. This study aimed to identify tweets that are related to spinal stenosis on Twitter, and to categorize them into common themes. Methods A social media monitoring and analysis software program (TalkWalker) was used to search relevant tweets using the keywords 'spinal stenosis' and 'stenosis' between 29 May 2019 and 24 June 2020. Two independent reviewers screened and conducted content analysis of the tweets and classified the tweets into different themes. Results Of 510 identified tweets, 362 tweets met the selection criteria. Five themes were identified: (1) compromised physical, psychological, and social wellbeing (n = 173); (2) diverse treatment options (n = 69); (3) coping strategies (n = 30); (4) dissemination of scientific information (n = 86); and (5) health policy (n = 4). Most of the tweets revealed negative impacts of spinal stenosis on patients' physical and psychosocial wellbeing. People with spinal stenosis shared their experiences and sought helps from others, while some people used Twitter to disseminate relevant information and research findings. Conclusions This is the first study exploring Twitter using an online analytical tool to identify themes related to spinal stenosis. The approach not only helps understand people’s concerns about spinal stenosis in an uncontrolled environment, but also can be adopted to monitor influences of diseases or public health education on Twitter users.


Introduction
Spinal stenosis is a narrowing of the spinal canal that may compress the dural sac, spinal cord, or nerve roots [1][2][3], leading to various neurological signs and symptoms [4].
Spinal stenosis can be classified as cervical, thoracic, and lumbar spinal stenosis [5,6]. While thoracic stenosis is relatively uncommon in adults, cervical and lumbar spinal stenosis are more prevalent. A cadaveric study found that cervical spine stenosis was present in 4.9% (23 out of 469 specimens), 6.8% (15 out of 220 specimens) and 9.0% (six out of 66 specimens) of donors aged 18 years or above, people aged 50 years or older, and people aged at least 70 years, respectively [5]. Likewise, lumbar spinal stenosis is common and is the leading cause of spinal surgery for patients aged over 65 years [7]. A recent systematic review revealed that the pooled prevalence of lumbar spinal stenosis based on radiological criteria was 38% in the general population (mean age: 53 years, range: 32-93 years), and 32% in patients from secondary care (mean age: 52 years, range: 19-95 years). Similarly, the mean prevalence of clinically diagnosed lumbar spinal stenosis was 11% in the general population (mean age: 62 years, range: 19-93 years), and 39% among patients from mixed primary and secondary care (mean age 65 years, range: 20-96 years) [8].
Depending on the severity of nerve root and/or cord compression, cervical spinal stenosis may cause neck pain and/or neurological signs (e.g., numbness, tingling or weaknesses in upper and lower limb muscles) [9], while lumbar spinal stenosis may cause neurogenic claudication after prolonged walking or standing [10]. Although these symptoms may be temporarily alleviated by changing positions (e.g., sitting or lumbar flexion in people with lumbar spinal stenosis) [11], persistent symptoms would compromise patients' daily activities and increase their risk of falls [11]. Severe spinal stenosis may also cause bowel and/or bladder dysfunction. Conservative treatments (e.g., medications, supervised exercises, manual therapy, etc.) are the first-line treatments for patients with mild to moderate symptoms [12]. If symptoms worsen after 2-3 months of conservative treatments, surgical interventions may be considered [13].
Although prior qualitative research has attempted to understand the lived experience of patients with lumbar spinal stenosis or their opinions regarding conservative treatments for spinal stenosis, their findings were limited by collecting data from a small group of participants recruited from one or two clinics, or clinical trials [14][15][16][17]. Their findings might not include opinions from other stakeholders (e.g., caregivers). Further, these studies might be subject to selection or recall bias [14,18,19]. Therefore, it remains unclear whether patients' or caregivers' concerns/opinions about spinal stenosis may differ in a non-experimental environment. Given that it is not uncommon for some patients with chronic conditions (e.g., spinal stenosis) to share their experiences/ frustrations on social media in real time, social media may be a potential new platform to solicit information from patients or caregivers regarding spinal stenosis that cannot be obtained from traditional methods.
Of various social media (Facebook, Instagram, Tik Tok, etc.), Twitter is a real-time microblogging platform for users to share and interact with one another. Unlike Facebook where most conversations/interactions are private, Twitter is an open platform that allows all users to view others' tweets and connect with likeminded people. Tweets on Twitter can be shared (retweeted), commented on, or liked by others. Twitter had 290 million monthly active users globally in 2019 [20]. Twitter is deemed to be a low cost real world platform for researchers to estimate the impacts of diseases on different aspects of target or unselected populations [21,22]. Additionally, Twitter provides a unique opportunity for researchers to communicate and cooperate across disciplines, as well as disseminate research findings globally [23,24]. Information solicited from such a platform may guide future research [25,26].
Given the above, it is conceivable that Twitter may contain useful information related to spinal stenosis that has never been explored. As such, the current study aimed to: (1) understand types of spinal stenosis-related information on Twitter; and (2) evaluate Twitter users' perspectives regarding spinal stenosis.

Study design
A mixed method quantitative and qualitative content analysis was used to evaluate Tweets written in English.

Talkwalker
A real-time social media monitoring and analysis software program, Talkwalker Quick Search (Talkwalker, Luxembourg, Luxembourg), was used to identify relevant tweets. Talkwalker can analyze activities and behaviors of anonymous target groups or users on various social media (Facebook, Twitter, Maipo, etc.), search for the most relevant information on pertinent topics, obtain relevant news from anonymous users, list the post time with the content's links, track brand images, identify emerging trends on social media in real-time, and use artificial intelligence algorithms to directly download the relevant information [27].
Tweets containing the keywords "stenosis" or "spinal stenosis" posted between May 29, 2019 and June 24, 2020 were identified by TalkWalker Quick Search (Talkwalker, Luxembourg, Luxembourg). The identified tweets also contained embedded information such as tweet types, original tweet links, the number of followers, retweets, etc. These were then downloaded as an Excel file. The related attributes of those searched tweets are listed in Table 1.

Selection of eligible tweets
A reviewer (LL) screened for eligibility of the identified tweets. Tweets were included for analysis if they were written in English and were related to spinal stenosis or associated treatments in humans. For example, tweets concerning impacts of spinal stenosis on physical or psychosocial wellbeing (e.g., sports participation) of users or users' friends were included. Other inclusion criteria included: treatments or coping strategies related to spinal stenosis; scientific literature related to spinal stenosis; or policies related to patients with spinal stenosis. Tweets were excluded if they: (1) only mentioned spinal stenosis among many other diseases; (2) described symptoms (e.g., lower limb numbness) that were unrelated to spinal stenosis; (3) were advertisements, marketing campaigns, or identical tweets posted by different user accounts.
For tweets with ambiguous contents, the original tweets and relevant tweet sources/websites were browsed. A second reviewer (AW) counterchecked the content independently. Any disagreements between the two reviewers were resolved by discussion. Persistent disagreements were planned to be resolved by consulting a third reviewer (GK), but it was not needed in the current study. Twitter users who posted those tweets were not contacted.

Analysis of the included tweets
The number of "likes" per tweet, and the overall engagement rate of all included tweets (i.e., the total number of people liked, retweeted, or gave comments to the included tweets after viewing them) were retrieved from Talkwalker. Additionally, the current study adopted a sixstep thematic analysis to analyze the tweets and classify different tweets into themes [28]. The six steps include: (1) data familiarization; (2) generating initial codes; (3) searching potential themes; (4) reviewing themes; (5) determining theme names, and (6) finalizing the result [28]. A reviewer (LL) analyzed the contents of the included tweets, evaluated the interactions among users (e.g., hosts and followers). A user who follows another user account is defined as a follower, and the original tweets published by a host will appear in the "Home" timeline of the follower. The reviewer (LL) also reviewed the links posted in the tweets to determine major content themes. The reviewer first familiarized herself with 50% of the included tweets to generate the initial codes and respective definitions in a codebook, and searched for potential themes. The codes and themes were continuously reviewed and refined until all tweets were analyzed. The codebook was used to categorize relevant tweets into a specific theme. Some tweets could be categorized into more than one code. Each tweet was evaluated in an iterative manner to ensure consistent coding into different themes. A second reviewer (AW) independently verified the classification of tweets and themes.

Results
A total of 510 tweets were identified from Talkwalker. One hundred and ninety-one tweets were excluded. Specifically, 84 tweets only mentioned the term "spinal stenosis", 15 tweets were unrelated to spinal stenosis, and 49 tweets were advertisements (e.g., promotion of products or medical doctors). Therefore, 362 tweets from five continents (North America = 306; Europe = 35; Asia = 15; Africa = 4; Australia = 2) were used for data analysis. The number of "likes" per tweet ranged from 0 to 419 (the average number of "like" was 8.34; 159 tweets was not "liked" by anyone). The engagement rate of the 362 tweets was 0.02% (3,861 engagements out of 22,293,674 views). Three types of Twitter users were identified from the included tweets: (1) patients with spinal stenosis who shared their stories, feelings, and treatment experiences; (2) users who commented on other people with spinal stenosis (e.g., athletes, relatives, or friends); and (3) clinicians or researchers who disseminated the latest research findings regarding spinal stenosis.

Main themes of tweets
From 362 included tweets, five themes were identified: (1) physical and psychosocial impacts of spinal stenosis (n = 173); (2) treatments for spinal stenosis (including medications, injection, and surgeries) (n = 69); (3) seeking help from others (n = 30); (4) evidence-based information from research or scientific information (n = 86); and (5) health policy (n = 4) ( Table 2). Table 3 lists some representative samples of tweets that were related to physical impacts of spinal stenosis on Twitter users, or their family or friends. Pain was the most frequently mentioned symptom in patients' tweets (49 tweets). Pain was reported at different body parts,  including lower back and legs: "…I suffer from severe spinal stenosis … I'm in pain 24/7 even on very strong pain meds and nerve meds …" Many people with spinal stenosis also expressed difficulty in walking, which led to altered walking patterns (e.g., a waddling gait) or becoming wheelchair bound (16 tweets; Table 3). Importantly, some of them reported having experienced falls:"…I have spinal stenosis and it affects my mobility and cause me to fall …." Additionally, some users complained about reduced body height (Table 3).

Psychological impacts
Fifty included tweets were related to the impacts of spinal stenosis on the Twitter users' emotion. Table 4 lists some representative tweets from the first-and thirdperson perspectives. Most tweets indicated negative impacts of spinal stenosis on their psychological make up. Depression, anxiety, and other negative emotions were mentioned in multiple tweets related to spinal stenosis (Table 4). Importantly, one tweet mentioned that the user was having severe depression because of spinal

Impacts on social roles
Spinal stenosis affects patients' social roles. As it is difficult for some patients with spinal stenosis to stand for a prolonged period, one Twitter user complained that he could not cast his vote in person because he could not stand in a queue. Further, some patients with spinal stenosis could not work, while others were fired, ended their careers, or were forced to retire (33 tweets) ( Table 4). For instance, 18 tweets were related to athletes in professional baseball (n = 7), American football (n = 5), wrestling (n = 5), and basketball teams (n = 1) who were forced to stop their practice or careers due to spinal stenosis.

Theme 2: treatments for spinal stenosis
Different treatments for spinal stenosis (e.g., medications, surgeries, injections, and physiotherapy) were mentioned in the included tweets (Table 5). Kratom was the most frequently mentioned medication. Specifically, 16 tweets from multiple Twitter accounts stated that Kratom reduced 75 percent of patients' pain. However, given the similarity of these tweets, the finding should be interpreted with caution because these tweets might be originated from spam accounts or people sponsored by a company. Overall, all spinal stenosis-related medications posted on Twitter were about painkillers. Spine surgery was the second most mentioned treatment in the included tweets. Diverse surgical approaches (e.g., radio ablation, anterior cervical discectomy and fusion, or lumbar decompression) were mentioned although some tweets did not specify the type of surgery (  (Table 5).
Other treatments or self-management methods were posted on Twitter. These interventions including specific mattresses, pillows, or conservative treatments (e.g., transcutaneous electrical neurostimulation, hot tub, hot water jets, and massage) ( Table 5). Additionally, yoga, farm work, and stretching have also been mentioned for managing spinal stenosis (Table 5).

Theme 3: seeking assistance from others
Given the negative impacts of spinal stenosis on various facets of patients' life, people with spinal stenosis sought supports or assistance from other Twitter users (Table 6). Eleven tweets sought financial help from other Twitter users. Nine users asked for medical information related to spinal stenosis. Some users asked for prayers (n = 4) or social support (n = 4). Table 7 lists six types of tweets related to scientific information of spinal stenosis (83 tweets). They included hyperlinks to journal articles, websites, PowerPoint files, YouTube videos, or discussions. Some tweets were linked to comprehensive overviews of spinal stenosis (including definition, pathology, diagnosis, medication, prevalence, nonsurgical and surgical treatments, surgical procedures, rehabilitation, and the risk of surgery). Twentyfour tweets were related to relevant journal articles (e.g., systematic reviews, meta-analyses, case-control studies, clinical trials, or validation of some spinal stenosis questionnaires). Another 24 tweets shared information or hyperlinks of different online articles regarding the pathology or development of spinal stenosis, and treatments for spinal stenosis. Six tweets shared hyperlinks of relevant YouTube videos or PowerPoint slides (Table 7).

Theme 5: health policy
Four tweets mentioned medical benefits, and three were related to asking the then U.S. President, Mr. Donald Trump, to sign the Emergency Funding Bill to mitigate the impacts of spinal stenosis on their lives: "President Trump, please get congress to pass and you sign "The Emergency Money for The People Act" sponsored by Tim

Discussion
This is the first study to evaluate the impacts of spinal stenosis on people through the content analysis of tweets. Twitter users repeatedly mentioned the negative impacts of spinal stenosis on their physical and psychosocial wellbeing. Some patients even tweeted suicidal thoughts because of spinal stenosis-related pain. Our results reveal that Twitter is a broadcasting and communication platform for laypersons to solicit information related to spinal stenosis, or for academics/healthcare professionals to disseminate research findings or credible medical information regarding spinal stenosis and related * All tweets started with a sentence stating that Kratom relieves 75% of pain (n = 16). The second half of the tweets might mention not using a walker and a wheelchair (n = 1); or able to walk or bike, even rock climbing (n = 2); bike or walk (n = 1); or rock climbing (n = 1) treatments [29,30]. Although users can garner relevant information on Twitter, they should be cautious and not automatically accept the information as being credible. For example, 16 very similar tweets stated that kratom was a drug approved by the Food and Drug Administration that reduced pain originated from spinal stenosis or other diseases by 75% (Table 5). However, the US Food and Drug Administration in fact warns people not to use kratom because it contains psychoactive compounds that are similar to opioids and may increase the risk of addiction [31]. Therefore, information gathered from Twitter should perhaps be better used as a discussion starter with appropriately informed healthcare providers. The analysis of tweets allows researchers and clinicians to understand the diverse feelings or thoughts of Twitter users in a non-experimental setting. Unlike structured patient experience surveys that usually ask patients about their prior healthcare experiences after some time [32], Twitter users can tweet their thoughts, feelings, or experiences about treatments or diseases at anytime, or from anywhere. Some of these tweets may have less recall bias. In fact, sentiment analysis of social media has long been adopted to understand people's opinions or feelings about services, events, or products [33][34][35][36]. Therefore, the tweet analysis may provide a new avenue to understand the concerns and thoughts of target populations, which may not be obtained from traditional surveys. These findings may help identify research gaps and inform future research directions. This approach may be very useful for diseases with low prevalence or for situation where researchers have difficult in soliciting opinions (e.g., under a pandemic situation).
Prior research has shown that patients with spinal stenosis have a poor quality of life, lower participation in daily activities, and limited ability to stay at work [37,38]. The job satisfaction of patients with lumbar spinal stenosis is known to be significantly lower than healthy individuals [39]. Our findings concurred that Twitter users frequently mentioned negative impacts of spinal stenosis on work (e.g., inability to work, being fired, and early retirement). Some Twitter users also tweeted that certain elite athletes needed to suspend their usual practice or even end their career because of spinal stenosis. This finding agrees with prior research that athletes with spinal stenosis have a shorter career length than their healthy counterparts [40,41]. Given the potential negative physical and psychological consequences of spinal stenosis, proper patient education is warranted to meet these patients' desire for understanding the pathology, self-management techniques, conservative and surgical treatments, which can help inform their decision-making [14,42]. Pain was the most common symptom in patients' tweets. Pain is the common reason for people with spinal stenosis to have decreased mobility and social participation [43]. Alarmingly, our analysis revealed that two patients had indicated potential suicidal thoughts because of pain, which has not been mentioned in previous research. Although speculative, this finding may be attributed to depression. It is known that approximately 20% of patients with lumbar spinal stenosis have clinically significant depression [44]. Many Twitter users also mentioned depression and other negative emotions in their tweets. It is possible that chronic pain, poor life satisfaction, and difficulties in coping with spinal stenosis may increase the risk of developing depression in patients with spinal stenosis [44][45][46]. Since concomitant spinal stenosis and depression can jeopardize patient's psychological and physical wellbeing in the long run even after spine surgery [46][47][48], future studies should investigate the effectiveness of multimodal approach in managing patients with concurrent spinal stenosis and depression. Clinicians should also be aware of mental health problems in these patients so as to provide timely management/referral.
Many patients with spinal stenosis seek relevant medical information through Twitter because they desire to have reassurance or helpful information (e.g., treatment options) for their conditions [49][50][51]. Patients with spinal stenosis or other diseases often seek help from relatives and friends to deal with their stresses and concerns [52]. The COVID-19 outbreak and social isolation that came with it, negatively, affected many patients with chronic diseases [53,54]. Social media has become an essential platform for the public to access information and communicate with others instantly [55,56]. Our results lend support to the notion that people with diseases want to learn from other patients' personal experiences, including treatment experiences [57]. Additionally, some Twitter users used hashtags to draw attention and connect with likeminded people. Our findings highlight that Twitter is an instant and inclusive online platform that allows users to proactively get involved in their inquiry process [58] and/or to express their feelings, or curiosity.
Additionally, some people with spinal stenosis used Twitter to seek prayers, social support, attention, and welfare. Financial need was the most common reason for people with spinal stenosis to seek help on Twitter. Prior research has reported that spinal stenosis may lead to job interruption, and high medical and hospitalization expenses, which may impose heavy economic burdens on patients and their families [59,60]. Our findings concur that some patients with spinal stenosis may face high treatment costs, require frequent medical visits, and need to seek financial supports. Although our results cannot be generalized to all patients with spinal stenosis, it underscores the importance of proper social welfare support, reasonable healthcare costs, effective diagnosis and treatments, as well as sharing decision making for patients with spinal stenosis [10,[60][61][62][63][64][65].
The current study shows that Twitter can be used to provide relevant stakeholders (e.g., medical practitioners, policy makers, and researchers) an opportunity to better understand the needs and thoughts of target patients, to disseminate evidence-based information, and to formulate new research questions. For example, our analysis showed that some patients with spinal stenosis might have some suicidal thoughts, which has not been mentioned in prior research. Further, policymakers should recognize the negative physical and psychological impacts of spinal stenosis, and develop relevant policies to alleviate these impacts on patients. Our results also reveal that some academics chose to disseminate research findings, while many patients desire to read credible disease-specific information. This finding highlights that social media can be an inexpensive alternative platform to educate patients and conduct research globally. It may also be used to detect/monitor public health emergencies that may not be achieved by traditional data collection methods (e.g., questionnaires) [66]. That said, Twitter can only be an adjunct approach to supplement traditional methods in data collection and knowledge translation.
The current study has several limitations. First, it is impossible to know the detailed demographics of Twitter users [67]. The gender and occupational information were estimated based on artificial intelligence algorithm in Talkwalker, which may limit its generalizability. Second, there was a possible selection bias of younger Twitter users. It was estimated that only 0.3% of Twitter users in England were 60 years or older [68], whereas approximately 67.5% of Twitter users were ages between 16 and 22 years [68]. That said, our content analyses revealed that the physical and psychological impacts of spinal stenosis shared by Twitter users were comparable to those reported by patients with spinal stenosis in prior research [37,38,43]. It suggests that Twitter users tweeting about stenosis are a representative sample of such patients. Future studies can use specific search terms on the Talkwalker to identify specific age groups to evaluate the differential influences of spinal stenosis on people at different ages. Third, our findings cannot be generalized to all countries (e.g., China or low-income countries), where Twitter is unavailable for political or technical reasons. Future research should consider analyzing results from other social media (such as Maipo) or using traditional paper-based questionnaires to reach out to these populations. Fourth, the current study only analyzed tweets posted between 29 May 2019 and 24 June 2020. Future studies should analyze tweets over a longer period to improve the representativeness of findings and to monitor the trend of health information seeking on Twitter.
That said, the current proof of concept study has laid the foundation for future health analytic research in various social media platforms. Fifth, the current study used a general term 'spinal stenosis' as the keyword to search for relevant tweets. However, the causes and progression of traumatic cervical spinal stenosis differ from those of degenerative lumbar spinal stenosis. Future studies should use more specific search terms to identify tweets from target populations for analysis.

Conclusions
The content analysis of tweets reveals that at least for people who tweet about their spinal stenosis, the condition appears to have substantial negative impacts on physical and psychosocial wellbeing in people with the disease. Our results indicate that Twitter users use the platform to seek health information and assistance from others. Similarly, researchers and healthcare professionals use Twitter to disseminate information regarding spinal stenosis although the effectiveness of this dissemination approach remains unclear. Overall, Twitter can be a novel channel for researchers to understand the impact of different diseases on various aspects of patients, conduct research (e.g., online surveys), and disseminate research findings.