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Locally advanced or metastatic bladder cancer (BC), which is generally termed advanced BC (aBC), has a very poor prognosis, and in addition to its physical symptoms, it is associated with emotional and social challenges. However, few studies have assessed the unmet needs and burden of aBC from patient and caregiver perspectives. Infodemiology, that is, epidemiology based on internet health-related content, can help obtain more insights on patients’ and caregivers’ experiences with aBC.
The study aimed to identify the main discussion themes and the unmet needs of patients with aBC and their caregivers through a mixed methods analysis of social media posts.
Social media posts were collected between January 2015 and April 2021 from US geolocalized sites using specific keywords for aBC. Automatic natural language processing (regular expressions and machine learning) methods were used to filter out irrelevant content and identify verbatim posts from patients and caregivers. The verbatim posts were analyzed to identify main discussion themes using biterm topic modeling. Difficulties or unmet needs were further explored using qualitative research methods by 2 independent annotators until saturation of concepts.
A total of 688 posts from 262 patients and 1214 posts from 679 caregivers discussing aBC were identified. Analysis of 340 randomly selected patient posts and 423 randomly selected caregiver posts uncovered 33 unique unmet need categories among patients and 36 among caregivers. The main unmet patient needs were related to challenges regarding adverse events (AEs; 28/95, 29%) and the psychological impact of aBC (20/95, 21%). Other patient unmet needs identified were prognosis or diagnosis errors (9/95, 9%) and the need for better management of aBC symptoms (9/95, 9%). The main unmet caregiver needs were related to the psychological impacts of aBC (46/177, 26.0%), the need for support groups and to share experiences between peers (28/177, 15.8%), and the fear and management of patient AEs (22/177, 12.4%).
The combination of manual and automatic methods allowed the extraction and analysis of several hundreds of social media posts from patients with aBC and their caregivers. The results highlighted the emotional burden of cancer for both patients and caregivers. Additional studies on patients with aBC and their caregivers are required to quantitatively explore the impact of this disease on quality of life.
In 2021, approximately 84,000 people were expected to be diagnosed with bladder cancer (BC), making it the sixth most common cancer in the United States [
People with BC often experience physical symptoms, including bleeding, pain, dysuria, and urinary obstruction, and they also report emotional and social challenges [
Caregivers are often responsible for managing the care of patients with BC; however, their perspective is underrepresented in the current literature. Although few studies have assessed QOL from the caregiver perspective, some recent evidence shows that caregiver QOL declines with disease stage [
Previous research on patients with BC relied on traditional research methods, such as systematic reviews [
Recently, social media has become increasingly compelling for obtaining valuable data concerning patients for infodemiological studies. In the early 2000s, Gunther Eysenbach first described infodemiology as a science research tool that searches the internet for health-related content posted by internet users [
In recent years, patients with cancer have generally been increasing their use of social media networks to obtain information and support for health-related purposes [
This retrospective mixed methods study aimed to identify the main discussion themes and the unmet needs that patients with aBC and their caregivers describe in their social media posts.
This noninterventional, retrospective, real-world, mixed methods study included data retrieved from social media posts written by patients with aBC and their caregivers. Publicly available US geolocated messages in English that were posted between January 1, 2015, and March 4, 2021, were considered. Publicly available data from social media sites (eg, Twitter) and forums (eg, patient association forums) were included. Posts on Facebook and Instagram were excluded, as most posts on these sites are private.
Data (verbatim social media posts) were identified and extracted, and irrelevant material was eliminated.
All public posts available on the web containing one of the relevant keywords were identified using the Brandwatch extractor [
In this study, we constructed an extraction query (available in
The data used in this study were obtained from sources where posts were publicly available. No private groups or web pages were accessed to gather data. When communicating or expressing themselves on the platforms included in our study, users had already consented to their data being used for other purposes.
Patient or caregiver age and sex were determined by manual review, where possible (ie, when explicitly mentioned, as presented below).
[…] my dad died in August aged 68 from stage 4 bladder cancer
Otherwise, age and sex data were coded as “undetermined.”
To identify the main themes of discussion, an unsupervised automated algorithm was used to cluster posts according to their main topic. All the data were used for this analysis. To further identify difficulties and unmet needs, the annotators performed a manual qualitative analysis using a method of saturation on a random sample of the data that is described in detail below.
To identify the main discussion themes and explore all available data about aBC, verbatim patient and caregiver posts were analyzed using a natural language processing and text mining approach called biterm topic modeling (BTM) [
To identify patients’ and caregivers’ unmet needs and categorize them, 2 independent evaluators (SR and PL) used qualitative analysis. Given the diversity of unmet needs, data saturation was used to obtain a representative sample of expressed difficulties/unmet needs. From all available posts, repeated random samples, empirically set at 5% of the total size each, were qualitatively analyzed each time until saturation was achieved. Saturation was considered achieved when 2 consecutive samples no longer yielded more than 1 new identified unmet need category (
I got some dreadful news today. My 42-year-old daughter has stage 3 bladder cancer. It has me terrified.
Saturation methodology for patients’ and caregivers’ posts.
The extraction yielded a total of 144,029 posts related to BC written by 68,079 users. Overall, after the cleaning step, 1214 posts from 679 caregivers and 688 posts from 262 patients were included in the study, with a median of 1.79 posts per caregiver and 2.63 posts per patient (
Sex was mentioned for 42.4% (111/262) of patients and 15.8% (107/679) of caregivers. Age was available for 16.0% (42/262) of patients and only 3.3% (22/679) of caregivers. Among patients, 21.8% (57/262) were male; in contrast, among caregivers, only 2.8% (19/679) were male (
Extraction process.
Patient and caregiver characteristics.
Characteristics | Patientsa (N=262) | Caregiversb (N=679) | ||
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139 (53.1) | 333 (49.0) | ||
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16 (6.1) | 95 (14.0) | ||
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Inspire | 31 (11.8) | 27 (4.0) | |
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Bladdercancersupport | 26 (9.9) | 34 (5.0) | |
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Others | 50 (19.1) | 190 (28.0) | |
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Female | 54 (20.6) | 88 (13.0) | |
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Male | 57 (21.8) | 19 (2.8) | |
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Undetermined | 151 (57.6) | 572 (84.2) | |
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<40 years | 9 (3.4) | 14 (2.1) | |
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40-59 years | 14 (5.3) | 2 (0.3) | |
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≥60 years | 19 (7.3) | 6 (0.9) | |
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Undetermined | 220 (84.0) | 657 (96.8) |
aThere were 688 posts and 32 sources.
bThere were 1214 posts and 72 sources.
Using BTM separately on the whole patient and caregiver data set, posts were clustered according to their topics of discussion. Each topic was labeled and illustrated with a representative title.
The most frequent discussion themes in patient posts (
Caregivers provided messages about support and hope most frequently, accounting for 22.5% (273/1214) of posts, highlighting the sense of community that social networks might offer (
Messages where the topic of discussion was too specific for it to constitute a main theme were pooled into the category of “other topics” (18.1% [220/1214] of caregiver messages and 19.3% [133/688] of patient messages). Some of these “other topics” included the relationship between the patient and his/her grandchildren, dementia or Alzheimer disease in relation to aBC, and the impact of COVID-19 and its repercussions.
Main discussion themes in patient posts.
Themes | Patient posts (N=688), n (%) | Representative quotations |
Diagnosis and different treatment possibilities, including traditional or alternative treatments | 246 (35.8%) | “In 2014, I was diagnosed with metastatic bladder cancer [...]” |
Exchange of messages of hope or support and sharing of patient experiences | 113 (16.4%) | “My name is X. I currently have stage 4 bladder cancer and am also a retired physician. If you have any questions after your cystoscopy tomorrow let me know.” |
Discussions around the health care pathway |
104 (15.1%) | “Discussed chemo after the surgery with MSG oncologist Dr. X (a world Rock Star Dr). Decided to have chemo locally (I am from Delaware) instead of driving back and forth to New York City every week. My Delaware oncologist and Dr. X didn't see eye to eye on treatment.” |
Symptoms and clinical signs of advanced bladder cancer | 58 (8.4%) | “First was bladder cancer, tumor removed from bladder and was doing fine for a year then a lump in my arm popped up, within 6 weeks I was told to go on hospice due to Stage 4 metastatic bladder cancer that spread to my back, sacrum, hip, had it replaced, shoulder, mouth, lungs. I was free for about 2 months then it's back in my lung. Growing very slow compared to the extremely aggressive I had before.” |
Focus on patient quality of life | 34 (4.9%) | “[…] Occasionally, I leak from my stoma, but only when my pouch is too full. This mostly occurs at night when I don't wake up on my own to cath. (I'm past the point of setting my alarm.) I sleep with a rubber bed protector under my bottom sheet that I bought at Target in the baby section. This only happens about once every 2 weeks. I wish you well with your decision. It's a tough one, but hopefully, as you research more the diversion that fits your needs will become apparent. Good luck!!” |
Main discussion themes in caregiver posts.
Themes | Caregiver posts (N=1214), n (%) | Representative quotations |
Sharing experiences and messages of hope and support | 273 (22.5%) | “My father was recently diagnosed with stage 4 small cell bladder cancer. At first it was considered unknown primary. Can anyone please shed some light on this topic? Perhaps survivor stories. Praying and trying to stay positive.” |
Complications around advanced bladder cancer | 231 (19.0%) | “Hi, about 6 months ago my 88-year-old father was diagnosed with a high grade invasive bladder cancer. Unfortunately his general health also took a turn for the worse. Over the last 6 months he has been in and out of hospital with recurring chest infections. [...].” |
Focus on diagnosis and medical procedures | 221 (18.2%) | “My husband was diagnosed with stage 4 bladder cancer in February. In April they removed the bladder, prostate, and part of urethra, and created a neo-bladder from intestinal tissue. It worked well for about a month, then developed scar tissue and stopped working for the most part. So, since May, he has had nephrostomy tubes directly out the back from the kidneys into drainage bags.” |
Scientific information on drug treatments | 113 (9.3%) | “[…]Can someone tell me the most common side effects that may occur in a 72-year-old male patient given MVAC? The 5-year survival rate is 15%, but has that improved any with all of the recent clinical trials? I just want to get some advice on what to expect as I will not be with my father for a full year as I finish my studies.” |
Accompanying the patient in the terminal phase and until death | 92 (7.6%) | “The only regret I have was not spending everyday with my father, but at the time I didn't know a lot about cancer and thought he'd beat it.” |
Discussions around social coverage, insurance, and financial aspects around patient care | 64 (5.3%) | “[...] I asked how much his morphine prescription was costing. It was as much as our rent at that point, and it only increased as time went on. That was just for the painkiller, not for anything else. [...]” |
Unmet needs were identified through manual coding of a random sample from each of the patients’ and caregivers’ data sets in order to identify the most frequently expressed unmet needs.
Among the 340 patient posts analyzed, 95 mentioned at least one difficulty among the 33 unique categories of unmet needs identified.
Challenges concerning treatment-related adverse events (AEs) and special situations related to treatments were found in 29% (28/95) of patient posts (
I had a urostomy done about 4 weeks ago, for aggressive/muscle invasive bladder cancer. My only real problem at the moment concerns night bag system kinks/leaks. During the day, I use either a one piece pouch or a one piece pouch with a leg bag (all Hollister). These options have been working great, with very few surprises/leaks. However, 3 times in the last 1.5 weeks, I have had a leak/kink/failure in my night bag system […]
Distribution of unmet needs expressed in either patient or caregiver posts. aBC: advanced bladder cancer; TRAE: treatment-related adverse event.
Other patients discussed AEs and special situations by providing information when describing their care journey and their treatments. They share these details to provide other patients with useful knowledge and to seek advice for themselves, as reported in the following post:
I had 2 bags of Cisplatin once a week for 19 weeks. I did get neuropathy in my hands, which I still mildly have. I had cervical, ovarian, and bladder cancer. Stage 3.
A psychological impact, with feelings of loneliness, depression/discouragement, anxiety/stress, fear, or personality change, was reported in 21% (20/95) of patient posts. Difficulties with planning ahead for the future and a fear of the unknown were described in the following message:
I’m newly diagnosed with advanced bladder cancer. I'm scared about this and what's to come. Most likely, it will be chemo and removal of the bladder. Any support and input from people in the same situation will be most appreciated.
An increase in psychological distress was observed throughout the patient’s journey, starting from the diagnosis and extending to the posttreatment stage, as illustrated in the following post:
I had cervical, ovarian, and bladder cancer the 1st time. Intestinal cancer the 2nd and now 3rd time. […] So like I said, I'm a bad example. But I did have MAJOR anxiety right after I was cured the 1st time.
Other major unmet needs and challenges identified in the messages included progression, worsening, complication, or recurrence of the disease (13/95, 14%); misdiagnosis or prognostic errors (9/95, 9%); and management of symptoms characteristic of aBC, such as blood in the urine (9/95, 9%). It is noteworthy to state that no difficulties or unmet needs related to caregivers were identified during the analysis of patient posts.
Among the 1214 caregiver posts analyzed, unmet needs were identified in 423 posts, 177 of which included at least one difficulty.
Psychological impact was the major difficulty caregivers described (46/177, 26.0%) (
Hi there, my husband was diagnosed with stage 3 bladder cancer. […] He talked to the on call doctor. The on call Dr. said to go to the ER if there was no urine output. He seems to be urinating ok but the worry is making it worse emotionally.
I lost my dad to stage 4 bladder cancer in 2012. I was pregnant, and just trying to be the one to hold it altogether but I wasn't doing a very good job. The only thing I can say is we go through this because we have to. It's hard. It still hurts. I don't get as sad as often as I did, but when I do, its heart wrenching. Being a caretaker is exhausting and will take every ounce of energy you have emotionally and physically.
Horrifying. Just horrifying. I lost my husband last March from bladder cancer. Insidious disease.
Caregivers also expressed the need to share experiences and to support other caregivers (28/177, 15.8%). Some caregivers sought support groups for not only the patient but also themselves, as illustrated in the following message:
Is there a cancer support group on Twitter? My father has stage 4 bladder cancer and has metastasized and would love to get more info from other patients and survivors.
Caregivers also solicited advice from people with similar experiences, requesting information, guidance, and recommendations, as follows:
My father was diagnosed with invasive bladder cancer in February 2016. […] We are now running into several problems which have resulted in readmission into the hospital on several occasions. I would like to hear if others have encountered similar issues. […] I realize this may be a constant battle but I need any tips possible. He drinks constantly but with the new “bladder” and stoma I feel he loses more water. Tips/advice? […] Please share your journey, hardships, and advice. I really want to help him get through this and provide the best possible life and outcome for him.
Alternatively, some posts expressed the need for spiritual support with requests for prayers, for example:
So my dad has bladder cancer. Mom is taking it pretty hard. Please keep my family in your prayers if you think about it. Thank you. #cancersucks
Challenges concerning AEs and specific treatment-related situations were found in 12.4% (22/177) of caregiver posts. Posts about AEs specifically concerned the patient and mentioned one or more AEs, the potential management, and the fear either patients or caregivers feel regarding the impact of the AEs, as expressed in the following message:
My 84-year-old father was diagnosed in May 2016 with a high grade urothelial bladder cancer. […] The chemo was very harsh on my dad and set him back...dropping his blood count & platelets numerous times requiring blood transfusions & platelets.
Caregivers also expressed challenges associated with the burden of end-of-life support and the grief of losing a loved one (18/177, 10.2%), being a caregiver (17/177, 9.6%), having a late diagnosis or delayed screening (13/177, 7.3%), and aBC symptom management (11/177, 6.2%), for example:
[…] No, it doesn't get any easier. The fear, the waiting and sitting around the house is like being on death row. Cancer not only is killing the patient, it’s killing the family too.
To our knowledge, this is the first study to analyze data retrieved from social media posts written by patients with aBC and their caregivers to gain insights into the perspectives of both the patient and caregiver about the difficulties encountered when living with aBC. We found that a majority of caregiver concerns focused on the psychological impact of aBC, whereas patients mainly focused on managing AEs. Our findings also support recent literature suggesting that patients particularly need psychological support and information about aBC and its treatment [
Interestingly, we found that almost twice as many caregivers as patients had posted online about aBC (1214 vs 688). Although few patients or caregivers who posted specified their age and sex, most caregivers who did were women aged between 30 and 40 years, whereas most patients who did were men aged between 50 and 60 years. These patients who were active on social media were among the younger population living with aBC. Older patients tended to post much less, possibly because of lower electronic literacy [
Treatment, psychological impact, and disease and symptom management were the unmet needs that patients discussed most often, which is in accordance with the few published studies highlighting the challenges faced by patients. These challenges include making long- and short-term treatment decisions [
Furthermore, our findings confirmed the negative impact that aBC has on caregiver QOL. This is consistent with results from other studies on the short-term [
This information may be used in the development of personalized and holistic approaches, centering around the needs of patients and their caregivers. The data presented may help health care professionals to further grasp the impact of the disease on their patients, which in turn will enhance the management of their health care journey. Feedback on social media may be used for health monitoring, developing initiatives for patients with BC, and developing targeted awareness campaigns.
The strengths of this study include a mixed method approach combining natural language processing with qualitative analysis. The study analyzed data from a 6-year period and included a large sample size. Furthermore, open-ended verbatim posts were analyzed, providing more data than traditional survey methods.
However, the observational nature based on social media data has some limitations. The posts extracted were limited to publicly available messages, thus excluding Facebook and Instagram. Moreover, relevant posts may have inadvertently been excluded during the filtering process. Data from social media posts may have been limited by the selected information and perspectives that patients and caregivers chose to post, depending on their technological literacy, BC experience, and understanding of key medical aspects. This means that some key contextual information, such as disease stage or specific treatment information, may not have been captured. Additionally, our study was subject to selection bias, as patient and caregiver posts may not be representative of all patients with BC or aBC and their caregivers. Indeed, the level of social media engagement differs according to age, sex, socioprofessional level, education, and technological literacy.
The natural processing analysis may have been limited by the threshold values chosen to reduce background noise, which were set empirically in this study, similar to our previous work [
This study identified leverage points to improve the patient experience. Both patients and caregivers described the psychological impact that aBC has on them and the need for clear BC information and practical advice. Patients also reported the need for clearer communication between themselves and practitioners [
As previously shown in the literature, difficulties for people with BC differ according to age, sex, and treatment [
The results of this study may help raise awareness about patient and caregiver unmet needs with health care professionals. This could help ensure that patients receive holistic patient-centered treatment that does not focus solely on the aBC but considers the patient as a whole. Furthermore, it could help to improve available information, communication, and support for both patients and caregivers.
Our innovative data analysis method combined the BTM method, a well-accepted natural language processing technique for analyzing social media posts [
Social media and online forums are innovative and efficient resources for obtaining data on patient and caregiver perspectives about aBC, which may be difficult to assess through traditional research methods. These online forums complement real-world evidence for unmet needs in specific populations.
People living with aBC mostly expressed unmet needs concerning treatment, psychological impact, or disease and symptom management, whereas caregivers expressed the emotional burden of caring, especially during end-of-life stages, as well as the need for support. These data may help raise awareness about these unmet needs, which may otherwise have remained unknown if patients and caregivers had not posted these perceptions on social media, among health care professionals and clinicians.
Query and keywords used.
Sources of patient and caregiver posts.
advanced bladder cancer
adverse event
bladder cancer
biterm topic modeling
quality of life
Medical writing support was provided by Nathalie Baudry of the microenterprise NB-Pharmaconsult and Joelle Malaab of Kap Code, Paris, France, and was funded by the healthcare business of Merck KGaA, Darmstadt, Germany (CrossRef Funder ID: 10.13039/100009945) and Pfizer. Editing assistance was provided by Amanda Whereat, Speak the Speech Consulting, and was funded by the healthcare business of Merck KGaA, Darmstadt, Germany (CrossRef Funder ID: 10.13039/100009945) and Pfizer. Preliminary results of this study were presented at Virtual ISPOR Europe 2021.
MB is employed by EMD Serono. BA, A Marrel, and VB are employed by Icon, which has contracts with the healthcare business of Merck KGaA, Darmstadt, Germany. SR, PL, PF, A Mebarki, and SS are employed by Kap Code, which was contracted by Icon to conduct this study.