What matters most to cerebral aneurysms patients: A digital analysis of 1127 social media posts

Abstract

Introduction

Social media serves as a way for patients to post about their condition online, as well as for healthcare providers to disseminate information. Intrinsic bias exists exist when patients are given surveys by physicians or healthcare providers. We aim to investigate patient-centered social media posts regarding cerebral aneurysms on Instagram, Twitter, and TikTok.

Methods

Posts that included “brain aneurysm”, “#brainaneurysm”, “#brainaneurysmsurvivor”, and “#aneurysmsurvivor” were queried on Instagram, Twitter, and TikTok. Any posts unrelated to the patient experience were excluded. Five hundred and fourteen Instagram posts, fourty tweets, and five hundred seventy three TikTok posts about the patient experience were identified. Posts were coded for the relevant themes related to their experience with the disease.

Results

Most posts made online were by women (892, 82.1%). Patients made the post most of the time (776, 67.5%), while other individuals posted less often (420, 36.5%). The most common themes on Instagram were survival (475, 87.3%), spreading positivity (385, 70.77%), and recovery/rehabilitation (329, 60.5%). TikTok users most often referred to survival (573, 97.1%), raising awareness (464. 78.6%), and spreading positivity (414, 70.2%). Patients were more likely to discuss pre-operative pain (p = 0.0382), postoperative pain (p < 0.0001), invisible illness (p = 0.0130), humor (p = 0.0028), recovery (p < 0.0001), angiograms (p < 0.0001), and resiliency (p < 0.0001) when compared to other individuals posting about a patients' experience.

Conclusion

Patients often focus on different aspects of their care than do other individuals. This may be useful for physicians discussing treatment plans and prognoses with the patient and their families.

Keywords

Instagram Twitter TikTok social media patient perception neurosurgery

Introduction

Social media has an ever-growing role in modern society and healthcare, as over 70% of Americans use it daily.¹ Patients often use social media to enhance their mental wellbeing by forming quasi-support networks.² It allows individuals and their families to discuss their experiences online, and reach out to other individuals for support regarding their treatment.² Patients often report feeling lonely when no one in their personal life has the same condition, and social media allows patients with rarer conditions to reach out to one another, and find an online support system.^2,3 It is also used widely among healthcare organizations to advertise their services, disseminate research, and educate patients, medical students, residents, and fellows.⁴ Both the Congress of Neurological Surgeons and the American Association of Neurological Surgeons have vibrant social media platforms. Social media is also widely used among many academic neurosurgeons, such as the Chairs of notable institutions such as the Mayo Clinic, University of Toronto, Massachusetts General Hospital, and more.⁴ Medical journals such as the Journal of Neurosurgery, Neurosurgery, Journal of NeuroInterventional Surgery, and Interventional Neuroradiology disseminate research to physicians and patients via social media. The widespread usage of social media in the healthcare field makes it an essential tool for practitioners to properly understand the modern health landscape.

Physicians often obtain feedback from their patients through surveys administered in an outpatient clinic or during a patient's stay in a hospital.^5,6 Patients may have a social desirability bias, where they minimize their negative feelings to be seen as more likable by their care team.⁶ Additionally, the limited time spent between the patient and their physician may not be enough for the patient to fully disclose their feelings regarding their condition and care.⁶ However, social media has been seen to serve as a platform for patients to discuss their condition online. Studies have shown that patients have utilized social media to discuss a broad array of health conditions they may have, such as cerebral cavernous malformations, brain tumors, scoliosis, and more.^5,7–9 This study aimed to investigate patient-centered social media posts regarding cerebral aneurysm treatment.

Methods

Social media outlets were queried to find posts relating to patient experience of cerebral aneurysm treatment. Instagram, TikTok, and Twitter were selected as social media platforms to obtain posts. The increased privacy settings with Facebook limited its utilization for data collection.

Social media outlets were searched for posts that included “brain aneurysm”, “#brainaneurysm”, “#brainaneurysmsurvivor”, or “#aneurysmsurvivor”. Only posts about a patient's experience of having a cerebral aneurysm were included. The identity of the poster was not a cause of elimination, as friends and family of a cerebral aneurysm patient suffering from a cerebral aneurysm were included. However, posts not directly about a patient's experience, such as general cerebral aneurysm education, or research were excluded. These three platforms have various standard forms of posting. Instagram allows for photos and videos, TikTok is exclusively for videos, and Twitter is primarily text with occasional photos and videos. The media format from social media platforms was noted as there is a crossover between media types between both platforms.

This Instagram search resulted in slightly over 30,000 posts for the stated above criteria. The elimination procedure yielded 514 Instagram posts from September 2016 to January 2022. TikTok does not indicate how many posts come up for a particular hashtag. Five hundred seventy-three TikTok posts from January 2019 to January 2022 were included. Twitter yielded 64 relevant tweets.

All posts were then categorized into various themes using the criteria shown in Table 1. A single post is eligible for none, one, or multiple themes. The profile of patients’ posts was searched to determine if the post was made pre-operatively or postoperatively. Postoperative posts that included a description of the experience preoperatively as well, were classified as “Both”. Statistical analysis to determine differences in theme prevalence by platform, gender, and identity of the individual posting was conducted using STATA v17.0 (StataCorp, College Station, TX).

Table 1.

Coding criterion for various themes.

Theme	Coding criterion
Recovery/rehab	Mention of recovery or rehabilitation process
Recounting symptoms	Mention of symptoms as result of surgical or nonsurgical treatment
Reporting undergoing angiogram	Mention of diagnostic angiogram
Fear of rare disease	Mention of fear of uncommon disease
Survival/death	Mentions living, surviving, or potentially dying
Pain	Specifically discussing patient pain before, during, or after treatment
Most difficult part	Explicitly states which part of the experience was the most challenging
Resilience	Describes resiliency or becoming stronger after diagnosis
Awareness	If post spreads information about aneurysm onset, risk factors, or prognosis
Spreading positivity	If post has a positive tone regarding the experience
Religious connotations	Mentions a general god, or a specific religious figure
Life satisfaction	Any post discussing the patient's ability to enjoy typical life activities
Fear of new aneurysm	Mentions fear of recurrent aneurysm
Scientific explanation of condition	Explanation of aneurysm diagnosis, treatment, rupture, or development
Online support	Reaches out to or offers online support
Concern for appearance	Expresses concern about visual appearance
Satisfaction with healing progress	Expresses satisfaction with the healing process
Fear of surgery	Mentions fear of need for future aneurysm treatment
Surgical scar	Any image, video, or mention of surgical scar
Cost	Mention of financial impact of aneurysm treatment
Humor	Any joke, laughing emoji, or sarcastic comment made in the post
Result of treatment	Provides explanation of treatment result, such as whether the aneurysm was successfully coiled or clipped
Dissatisfaction	Express of disapproval of their care experience
Invisible illness	Mentions how aneurysm presence is not easily discernable to the naked eye
Pre-operative pain	Mention of pain prior to operation
Post-operative pain	Mention of pain after operation
COVID-19	Mention of COVID-19 pandemic

Results

Analysis of various social media platforms yielded 514 (47.3%) Instagram posts, 573 (50.8%) TikTok posts, and 40 (3.5%) Tweets. Women made 82.1% of the social media posts, while patients themselves made 65.2% of the posts (Table 2). No statistically significant gender differences were found between platforms. TikTok posts were more likely to be made by someone else than a patient, and more likely to have been shared postoperatively (p < 0.001). Additionally, TikTok posts were more likely to discuss survival/death, spread awareness, online support, and the result of the treatment than Instagram posts (p < 0.001). Instagram posts were more likely to mention symptoms, description of the most difficult part, life satisfaction, and discuss satisfaction with the healing process than TikTok users (p < 0.001).

Table 2.

Theme discrepancies among social media platforms.

Theme	Instagram 514 (45.6%)	TikTok 573 (50.8%)	p-Value	Males194 (17.9%)	Females 892 (82.1%)	p-Value	Patients Themselves 735 (65.2%)	Someone Else 392 (34.8%)	p-Value
Gender
Male	80 (15.6%)	114 (19.9%)	0.063	-	-	-	69 (9.7%)	125 (33.2%)	<0.001
Female	434 (84.4%)	459 (80.1%)	0.063	-	-	-	640 (90.3%)	252 (28.3%)	<0.001
Who's posting
Patient themselves	393 (72.4%)	346 (58.6%)	<0.001	69 (35.6%)	640 (71.8%)	<0.001	-	-	-
Someone else	150 (27.6%)	244 (41.4%)	<0.001	125 (64.5%)	252 (28.3%)	<0.001	-	-	-
Themes
Recovery/rehab	329 (60.5%)	331 (56.1%)	0.140	110 (56.7%)	549 (60.4%)	0.350	483 (65.4%)	176 (44.7%)	<0.001
Recounting symptoms	140 (25.7%)	66 (11.2%)	<0.001	18 (9.3%)	183 (20.5%)	<0.001	166 (22.5%)	39 (9.9%)	<0.001
Reporting undergoing angiogram	44 (8.1%)	50 (8.5%)	0.800	19 (9.8%)	64 (7.1%)	0.190	77 (10.5%)	16 (4.1%)	<0.001
Fear of rare disease	43 (7.9%)	34 (5.8%)	0.160	13 (6.7%)	63 (7.1%)	0.890	52 (7.1%)	25 (6.4%)	0.660
Survival/death	475 (87.3%)	573 (97.1%)	<0.001	177 (91.3%)	838 (93.8%)	0.190	681 (92.2%)	366 (92.9%)	0.650
Pain	129 (23.7%)	155 (26.3%)	0.300	49 (25.3%)	227 (25.4%)	0.960	146 (19.8%)	137 (34.8%)	<0.001
Most difficult part	99 (18.2%)	58 (9.8%)	<0.001	30 (15.5%)	125 (14%)	0.60	99 (13.4%)	58 (14.7%)	0.540
Resilience	228 (41.9%)	155 (26.3%)	<0.001	60 (30.9%)	314 (35.1%)	0.270	297 (40.2%)	85 (21.6%)	<0.001
Awareness	266 (48.9%)	464 (78.6%)	<0.001	141 (72.7%)	564 (63.2%)	0.012	429 (58.1%)	301 (76.4%)	<0.001
Spreading positivity	385 (70.8%)	414 (70.2%)	0.800	138 (71.1%)	633 (70.9%)	0.950	543 (73.5%)	255 (64.7%)	0.002
Religious connotations	118 (21.7%)	86 (14.6%)	0.002	42 (21.7%)	157 (17.6%)	0.182	124 (16.8%)	80 (20.3%)	0.140
Life satisfaction (QOL)	229 (42.1%)	167 (28.3%)	<0.001	46 (23.7%)	341 (38.2%)	<0.001	341 (46.1%)	54 (13.7%)	<0.001
Fear of new aneurysm	38 (7%)	12 (2%)	<0.001	7 (3.6%)	43 (4.8%)	0.470	37 (5%)	12 (3.1%)	0.120
Scientific explanation of condition	43 (7.9%)	17 (2.9%)	<0.001	11 (5.7%)	44 (4.9%)	0.670	38 (5.1%)	22 (5.6%)	0.750
Online support	56 (10.3%)	238 (40.3%)	<0.001	58 (29.9%)	217 (24.3%)	0.100	142 (19.2%)	152 (38.6%)	<0.001
Concern for appearance	32 (5.9%)	18 (3.1%)	0.020	2 (1%)	48 (5.4%)	0.009	44 (6%)	6 (1.5%)	0.001
Satisfaction with healing progress	160 (29.4%)	100 (17%)	<0.001	36 (18.6%)	220 (24.6%)	0.070	205 (27.7%)	54 (13.7%)	<0.001
Fear of surgery	20 (3.7%)	8 (1.4%)	0.012	4 (2.1%)	23 (2.6%)	0.680	20 (2.7%)	8 (2%)	0.490
Surgical scar	36 (6.6%)	59 (10%)	0.040	16 (8.3%)	79 (8.9%)	0.790	81 (11%)	14 (3.6%)	<0.001
Cost	3 (0.6%)	14 (2.4%)	0.012	3 (1.6%)	14 (1.6%)	0.980	11 (1.5%)	6 (1.5%)	0.960
Humor	30 (5.5%)	38 (6.4%)	0.500	13 (6.7%)	53 (5.9%)	0.690	54 (7.3%)	14 (3.6%)	0.011
Result of treatment	181 (33.3%)	376 (63.7%)	<0.001	114 (58.8%)	425 (47.6%)	0.005	315 (42.6%)	241 (61.2%)	<0.001
Dissatisfaction	19 (3.5%)	67 (11.4%)	<0.001	16 (8.3%)	65 (7.3%)	0.640	32 (4.3%)	53 (13.5%)	<0.001
Invisible illness	31 (5.7%)	10 (1.7%)	<0.001	5 (2.6%)	36 (4%)	0.340	34 (4.6%)	7 (1.8%)	0.015
Pre-operative pain	40 (7.4%)	19 (3.2%)	0.002	8 (4.1%)	5 (5.7%)	0.380	44 (6%)	14 (3.6%)	0.080
Postoperative pain	56 (10.3%)	21 (3.6%)	<0.001	7 (3.6%)	69 (7.7%)	0.041	67 (9.1%)	9 (2.3%)	<0.001
COVID-19	22 (4%)	5 (0.9%)	<0.001	3 (1.6%)	23 (2.6%)	0.400	26 (3.5%)	1 (0.3%)	0.001

Rehab: rehabilitation; QOL: quality of life.

Gender differences in what themes were most often mentioned were also found (Table 2). Women were more likely to discuss symptoms (p < 0.001), quality of life (p < 0.001), concern for appearance (p = 0.009), and postoperative pain (p = 0.041) than men. Men were more likely to discuss raising awareness (Figure 1, p = 0.012) and the result of the aneurysm treatment (p = 0.005). Patients were more likely to discuss recovery/rehab, symptoms, angiogram, resiliency, quality of life, satisfaction with the healing process, and postoperative pain than other individuals posting about aneurysm treatment (p < 0.001). Additionally, patients were more likely to express concern about appearance (p = 0.001) and have a more humorous tone toward their treatment than other individuals posting (p = 0.011). On the contrary, posts made by individuals who were not the patient themselves were more likely to raise awareness (Figure 2), mention online support, and express dissatisfaction with their loved one's treatment.

Figure 1.

Instagram post demonstrating the themes of fear, empowerment, resiliency, and awareness.

Figure 2.

Twitter tweet mentioning patient survival and spreading positivity. Replies by an aneurysm foundation and friends providing support and raising awareness.

Discussion

Social media was shown to serve as a way for patients and their families to discuss the treatment experience online. It is useful for physicians to better interpret patient feedback for those undergoing cerebral aneurysm treatment. This study successfully identified key themes expressed by patients and their families through various social media platforms.

Identity of poster

Patients were found to have a different focus than their family or friends when describing their experience. Patients were more likely to focus on the recovery process, quality of life, postoperative pain, and express concern for appearance than other individuals. Additionally, patients are more likely to describe resiliency and have a humorous tone. This information allows physicians to better focus on the pain and recovery process while having a positive, light-hearted tone with their patients. On the contrary, other individuals posting were more likely to express dissatisfaction with their loved one's treatment course, as well as discuss online support and raise awareness. For physicians speaking to the family of a patient, an emphasis on support and awareness groups, such as the Bee Foundation and the Brain Aneurysm Foundation, would be beneficial, as the families are likely to be more receptive to helping increase aneurysm awareness.

Gender analysis

Women made 82.1% of posts while men made 17.9% of the social media posts. This is to be expected, as women use social media at a higher rate than men.¹⁰ Gender influences focus of posts, as women are more likely to discuss symptoms, quality of life, concern for appearance, and postoperative pain than men. The higher prevalence of intracranial aneurysms in women indicates that for physicians treating female aneurysm patients, the results from this study information can better help them steer their conversation into surgical scar healing and symptom management for women. Men were more likely to discuss raising awareness and the clinical result of aneurysm treatment. Certain studies have shown that patients have limited knowledge regarding their aneurysm treatment. King et al.¹¹ demonstrated that 14% of successfully eliminated cerebral aneurysms inaccurately believe that they still had an aneurysm. Additionally, one of three patients were even unaware that they even had an aneurysm.¹¹ Physicians treating male aneurysm patients may be better served by highlighting the clinical result of their treatment. Additionally, physicians can also provide resources to aneurysm awareness groups, such as The Bee Foundation for these patients.¹²

Platform differences

TikTok users are more likely to be use their platform to raise awareness and provide online support to patients. Additionally, posters are more likely to be someone besides the patient discussing the condition. As TikTok is seen as a “showier” platform, it is unsurprising that individuals used it to discuss someone else's condition. TikTok has also been shown to be used by neurosurgeons to spread awareness regarding educational programs; a program instituted by Northwell Health to increase medical student recruitment into neurosurgery found that most students enrolled in the program heard about it via TikTok.¹³ This study reinforces that TikTok has evolved to become a more commonly used platform for individuals to discuss health conditions.

Limitations

This study is not without limitations. Firstly, social media has a representation bias toward younger individuals. Older patients and their families are less likely to be utilizing social media and are likely to be excluded from this study. There is no way to verify the clinical accuracy of the posts. Individuals are sometimes mistaken about their treatment course, which will reflect in their social media postings. The age of the individuals posting on various social media platforms was unknown. Social media also has a representation bias toward extremely positive or negative treatment experiences. An “average” experience is less likely to be discussed on social media, and these experiences are likely excluded from the analysis. Further research is necessary to determine how the age of the individual posting affects theme prevalence.

Conclusions

Social media serves as a way for cerebral aneurysm patients and their families to discuss the experience online. It allows for free-flowing conversation regarding a patient's aneurysm treatment, without the limitations of a survey administered in a clinical setting. This study revealed that the platform, gender, and profile of the person posting lead to focusing on different aspects of their care. This information better equips neurointerventionalists to better tailors their conversation to their patients and families.

Footnotes

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Avi A. Gajjar

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