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

Spinal stenosis is a narrowing of the spinal canal that may compress the dural sac, spinal cord, or nerve roots [1‐3], 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 [14‐17]. 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.

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.

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 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 [33‐36]. 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 [44‐46]. Since concomitant spinal stenosis and depression can jeopardize patient's psychological and physical wellbeing in the long run even after spine surgery [46‐48], 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 [49‐51]. 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, 60‐65].

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.

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.