Description of the population and posts

The extraction process produced a total of 27,202 messages from the Eu5 combined. After data cleaning, 1670 messages from 1396 users were retained (699 posts by 546 patients and 971 posts by 850 caregivers) (Fig. 1).

Fig. 1

Extraction process. aBC, advanced bladder cancer

The UK had the highest number of posts (945 [56.6%]), followed by Germany (278 [16.6%]), Italy (252 [15.1%]), France (151 [9.0%]), and Spain (44 [2.6%]) (Table 1).

Table 1 Geographic distribution of posts and users

Messages were retrieved from 91 available public sources; some were global sources such as X (formerly Twitter; 261 [15.6%]) and Facebook (14 [0.8%]), but the majority were obtained from country-specific health forums. The UK’s Macmillan Cancer Support had the greatest number of posts (390 [23.4%]), followed by other health-related forums such as Germany’s Blasenkrebs Online-Selbsthilfegruppe (202 [12.1%]) and the UK’s HealthUnlocked (170 [10.2%]) (Table 2).

Table 2 Top 10 data sources

Among the patient posts, approximately half were written by males (272 [49.8%]) with an average age of 58.2 years. In contrast, caregiver posts were primarily written by females (474 [55.8%]) with an average age of 35.2 years. Additionally, most individuals referred to in caregiver posts were male patients (577 [67.9%]) with an average age of approximately 67.7 years (Table 3).

Table 3 Patient and caregiver characteristicsImpact on QoL

The analysis identified that 40.0% of users (558/1396) mentioned a negative impact on one aspect of QoL. Among the 558 users, 56.8% (317/558) expressed a physical impact, 48.6% (271/558) described a psychological impact, 10.9% (61/558) expressed an impact on their daily activities, 5.4% (30/558) expressed an impact on their social life, and 4.1% (23/558) expressed a financial impact (Fig. 2). It is worth noting that a message may have contained several aspects of QoL.

Fig. 2

Proportion of internet users expressing an impact on quality of life

The physical and psychological impact on QoL was reported in the majority of cases (Fig. 3). Notably, a negative impact on physical well-being was reported consistently across all countries, with 56.8% of users reporting physical challenges. Patients and caregivers in the UK and Germany reported a comparable impact on physical aspects, with approximately 57.0% of users in both countries (131/230 in the UK; 40/70 in Germany) experiencing such challenges. In contrast, users reported higher physical impact rates in France (60/88 [68.2%]) and Spain (17/24 [70.8%]). Psychological well-being was also affected, with 49% of overall patients and caregivers experiencing psychological challenges. Users in Germany reported experiencing the highest psychological impact (39/71 [54.9%]), while those in Spain reported the lowest psychological impact (5/24 [20.8%]). Activities and social well-being were less commonly impacted, with only 10.9% and 5.4% of users, respectively, reporting challenges in these dimensions. Users in Germany reported the lowest percentage of impact on activities (2/71 [2.8%]). Finally, financial challenges were reported by a minority of patients and caregivers (3.9% overall). Users in Spain were the exception as they reported a higher financial impact than users in the other countries (5/24 [20.8%]). The lowest financial impact was reported by users in the UK (2/230 [0.9%]) and Germany (1/71 [1.4%]) (Fig. 3).

Fig. 3

Proportion of internet users expressing an impact on quality of life by dimension and country

Users who expressed a physical impact mainly described pre-diagnosis symptoms, including blood in the urine, frequent visits to the bathroom, and severe pain. Users also reported an altered general state of being and sequelae related to surgery and procedures that the patients had undergone, as illustrated in a caregiver’s message below:

“Hello, my mom has been diagnosed with advanced bladder cancer. She probably has metastasis on the bones. She hasn’t eaten or drunk much for several months, is very tired, has a lot of pain and can’t walk for long” (UK).

The psychological impact included reports of poor mental health for caregivers. They described the mental distress of accompanying their sick relatives throughout their healthcare journey. The fear of losing their loved one and the feeling of helplessness were commonly reported in the caregivers’ posts. The patients expressed a feeling of desperation, especially if they had received a confirmed diagnosis. This was coupled with feelings of loneliness, being overwhelmed, and confusion. Furthermore, users voiced their concern about the future, mainly the potential worsening of their condition, and anxiety preceding medical examinations and check-ups, as described in the following message:

“Hello everyone! I want to share my story with you: I am a 32-year-old girl. Just 5 years ago, I was diagnosed with a bladder sarcoma, which is a very serious tumor, especially for a woman. […] I dread the check-up scans: every time I have this one, which is every six months, I feel as if my life has stopped. At least for now, I can say I did. A hug to everyone and good luck” (Italy).

Furthermore, aBC was described to impact users’ daily activities, manifesting as frequent urination, sometimes leading to embarrassing situations. With time, patients with aBC reported a loss of autonomy, as some of them who are greatly limited by the disease find themselves dependent on their caregiver for most of their activities. They reported this change as radical and hard to accept, especially for patients who were previously fit and athletic. Furthermore, users reported disturbed essential activities such as eating, drinking, and sleeping, which forced patients to adapt their lifestyle to manage their situation and to avoid impacting their relatives or caregivers’ lives as well, as shown in the following message:

“I had all my tests done in April and was found to have invasive bladder cancer. It has made my bladder so bad that I am now incontinent and have to wear a bag all the time. I continue to have urinary tract infections and the pain is now so bad that I sleep downstairs on a chair so as not to disturb my wife’s sleep” (Germany).

The impact on social aspects revolved around a feeling of isolation. With family and friends far away, depression or an unwillingness to inflict pain on their relatives, patients may find themselves voluntarily or involuntarily isolated when dealing with the disease. This isolation could sometimes have affected the caregiver as well. This ultimately affected relational aspects of patients’ lives, as expressed in the message below:

“Hello everyone, once again thank you for these messages. It makes me feel really good to know that there are people around me to give me a little support, since many of my so-called friends don’t dare to come and see me or call me anymore, because they don’t know what to say!” (France).

Finally, the financial impact of the disease was described as difficulty in accessing social assistance and benefits according to some patients who were no longer able to work. This also impacted their caregivers. The private healthcare sector, although recognized for the quality of its care, was criticized for the fees charged for treatment. This is described in the following message:

“If you can pay them. [NAME] saved my partner eight years ago from bladder cancer in the Social Security. An excellent doctor but like others he will settle only in the private sector” (Spain).

Unmet needsMain categories identified

The utilization of both the categorization algorithm and manual annotation in tandem facilitated the identification of 1092 instances of challenges and unmet needs across all posts, with 382 occurring in patient posts and 710 in caregiver posts. Notably, no noteworthy variations were observed in the challenges experienced by patients and their caregivers across the Eu5 countries.

Most unmet needs and challenges identified belonged to two main categories: transversal, i.e., arising throughout the patient’s care pathway (307 [28.1%]), and disease specific (295 [27.0%]). All results by category are shown in Table 4.

Table 4 Categories of challenges and unmet needs faced by patients and caregiversMain challenges and unmet needs identified

Across all posts, the main challenges included disease worsening (141 [12.9%]), psychological impact (112 [10.3%]), and the need to share experiences and seek support (94 [8.6%]). Table 5 describes the top eight challenges and unmet needs found in patient and caregiver posts, which constituted more than half of all occurrences identified in these posts (608 [55.7%]).

Table 5 Top eight challenges identified in posts from patients and caregivers

A saturation method was used to annotate challenges and unmet needs. Of 699 patient posts and 971 caregiver posts identified, 352 patient posts and 522 caregiver posts were annotated, after which no new categories of challenges or unmet needs were identified. Of the 352 patient posts and 522 caregiver posts analyzed, 202 and 323 posts, respectively, included at least one identified challenge or unmet need.

Across 382 patient posts and 710 caregiver posts that included identified instances of challenges and unmet needs, the need for experience sharing and support was mainly expressed in the form of questions from patients (42/382 [11.0%]) and their caregivers (52/710 [7.3%]). In addition, a lack of information and knowledge was expressed, with more specific questions about the management of aBC being asked by patients (16/382 [4.2%]) (Fig. 4) and their caregivers (15/710 [2.1%]) [34]. Questions specific to the treatments indicated for aBC were also found in some of the posts (12/382 [3.1%] for patients (Fig. 4) and 19/710 [2.7%] for their caregivers) [34].

In addition to challenges and unmet needs concerning patients, challenges concerning caregivers exclusively, or both patients and caregivers, were identified in caregivers’ posts. Among the main challenges described (Fig. 4), 3 challenges affected mostly caregivers in their posts about patients, i.e., psychological impact (74 [10.4%]), burden of caring for terminally ill patients and grieving (22 [3.1%]), and concerns about the future, with difficulties projecting ahead (32 [4.5%]).

Fig. 4

Main unmet needs and challenges mentioned in patients’ and caregivers’ posts. aBC, advanced bladder cancer; AE, adverse event

Patients

The need for sharing and support were the most common challenge in patients and found in 11.0% of posts (Fig. 4). Some patients actively shared their healthcare experiences on social media, seeking a supportive online “community” where others could relate to their journey. Patients commonly sought recommendations, opinions, and advice on various aspects of their healthcare, including diagnosis, treatment choices, and healthcare providers. Some, feeling isolated, reached out for reassurance and support from their digital peers, requesting encouragement, messages of hope, or prayers, as shown in the following message:

“Good evening, I am 70 years old and have advanced bladder cancer. I am going to be operated in a few days and I would like to have testimonies of people living with an artificial bladder. Thank you very much, your help is precious to me” (France).

Patients also expressed challenges related to the progression, worsening, or recurrence of their condition in 10.5% (40/382) of messages (Fig. 4). Due to the advanced or terminal nature of their medical condition, individuals who communicated their experiences online frequently divulged the intricate challenges that they encountered throughout the course of their illness. These challenges often encompassed the exacerbation of aBC, relapses, recurrences, and the emergence of new metastases. Patients tended to openly discuss these complications, not only to narrate their disease journey comprehensively, allowing other internet users to gain a deeper understanding of their circumstances, but also with the hope of finding solutions and assistance to address the difficulties arising from these complex issues. The following message described this situation:

“Hello. My name is [NAME] is honestly I do not know where to start. In December 2017 I was diagnosed with bladder cancer, also in December I had my first surgery. At first checkup after 6 months (cystoscopy) everything normal. Second checkup December 2018 the tumor was back, I had surgery in January. Again checkup after 4 /5 month is …. the tumor is back again. I did pre-exams and waiting for the call for surgery we are in June 2019. My head keeps wandering, I don’t know what my future will be” (Italy).

Challenges on the psychological level were also reported in 9.9% (38/382) of patients’ messages. Individuals with aBC endured persistent psychological distress throughout their medical journey. This included anxiety, fear, and stress experienced at various stages, from the initial diagnosis with feelings of powerlessness and uncertainty to moments of remission overshadowed by the fear of relapse. In addition to the demanding and prolonged nature of their care, patients also grappled with mental fatigue, which compounded their physical symptoms. This was described in the following message:

“As written I am new here, am 66 years married and have 3 children, I was diagnosed with bladder cancer 4 months ago and the 1st operation is this week on Thursday, and should go again to the hospital to do the 2nd operation. I have to fight very much with it and at the moment I also have strong suicide thoughts, but then think of our 3 grandchildren who still need your grandpa. So that was it once, later maybe more” (Germany).

Other major challenges or unmet needs include the sequelae of illness or care (8.9%), fear and management of the specific symptoms of the pathology (8.1%), and lack of general knowledge/scientific information about care (4.2%).

Caregivers

Of 710 caregiver posts that included identified instances of challenges or unmet needs, psychological difficulties were the major challenges described in 10.4% (74/710) of caregivers’ messages (Fig. 4). Caregivers reported that caring for a loved one with aBC took a significant emotional toll on their mental health. They were intimately involved throughout the entire care process, which was emotionally taxing. This unanticipated and complex journey often left them feeling overwhelmed and unprepared. Providing physical, emotional, and practical support led to anxiety, depression, and exhaustion, which may persist even after their loved one’s passing, as described in the following posts:

“Hello My mother was operated of a cancer of the bladder by cystectomy. Stage PTy 3, N0/25, R0. She had first undergone chemotherapy. What worries me is that it is written on the results of the scan that there were small hepatic hypodensites too small to be characterized. This makes me anxious. What do you think Doctor? Thank you” (France).

“Hello dear ones My mom got the results of her bladder cancer op today, not good the cancer is still there, now chemo since it has spread and see how it goes on…I’m just scared my dear, dear mom Why does this have to be now? Sorry had to puke many times….” (Germany).

Caregivers also expressed challenges related to the end-of-life support for the patient as well as processing their own grief. The responsibilities placed on caregivers of individuals with aBC tended to intensify during the end-of-life and bereavement phases. As the patient’s condition deteriorated, caregivers often grappled with the overwhelming task of managing the patient’s symptoms, making them comfortable and dealing with end-of-life decisions, while coping with existing and anticipatory grief as they witnessed the disease progression and the decline in their loved one’s health. The grieving process following the patient’s passing can be exceptionally challenging for caregivers, as they may contend with feelings of isolation, hollowness, and guilt. To alleviate the weight of caregiving during this trying period, many caregivers turned to social media for support, sharing their experiences and seeking solace in the digital community. These feelings were described in the posts below:

“They told me in January 2017 “maybe she lives till summer” (bladder tumor). She was with us for almost 3 more years and looked healthy. Unfortunately you are never ready for that moment. Hang in there ❤” (Italy).

“I’ve just lost my Dad x literally 6 weeks tomorrow and I still can’t believe he is gone. I can’t stop crying. As an only child I was so close to him and he was my hero. He didn’t even tell me he was ill. He died of Stage 4 bladder cancer. Collapsed at home on the Friday, dies on the Tuesday x I feel sad, angry, lost. He was my hero. What now????” (UK).

Additionally, caregivers expressed their worries about the future and the challenge of projecting oneself. Caregivers supporting patients with aBC often faced substantial stress and the challenge of envisioning the future. They reported that the inherently unpredictable course of the disease and its uncertain prognosis posed significant hurdles for them in terms of predicting what lay ahead and being prepared to meet their loved one’s evolving needs. Despite their efforts to comprehend the intricacies of their loved one’s illness, including treatment options and forthcoming surgeries, a shroud of ambiguity persisted, making anticipation a difficult task. Furthermore, the prevailing fear of losing their cherished family member loomed large in the minds of caregivers, casting a pervasive shadow over every aspect of caring for the patient. These emotions were illustrated in the following messages:

“I thank you, but unfortunately she has bladder cancer, the only hope is that it will not increase through medication and that what she has left to live will be without suffering” (Italy).

“My dad has terminal bladder cancer. He’s detoriated rapidly this week. He isn’t getting out of bed, stopped eating and has now stopped drinking. He’s constantly sleeping How long can he live like this?” (UK).

The reality of being a caregiver was also reported (1.8%), given the demanding and time-consuming nature of their responsibilities. This included the financial strain of caregiving, which could be particularly arduous and often necessitating caregivers to make sacrifices, such as reducing their paid work hours or leaving their jobs altogether to attend to their ailing family member. Additionally, caregivers reported feelings of social isolation, a consequence of their caregiving duties that frequently curtailed their ability to engage in social activities and nurture their relationships.