Taking bladder cancer patients’ voice forward with action where it matters most
Bladder cancer – a disease with global impact
Bladder cancer has high recurrence rates for non-invasive disease and high mortality for patients with advanced or metastatic disease. Bladder cancer poses a significant public health challenge, usually consisting of a complex and costly care pathway., Bladder cancer is more common in men, representing 75% of all cases. Women tend to be diagnosed later and have a higher mortality rate.,
One global voice for people affected by bladder cancer
The World Bladder Cancer Patient Coalition is an umbrella organisation – a uniting force representing people affected by bladder cancer. Our ambition focuses on fostering a global community of people affected by bladder cancer and working together to drive change for patients and their families – accurate timely diagnosis, high-quality care and support.
We are driven by our ambition to have a bladder cancer patient organisation in each country, fully able to support people affected by bladder cancer. Collaboration with healthcare professionals, such as urologists, oncologists, nurses and primary care physicians, is essential to identify and foster patient-led community organisations.
Patient and carer experience insights are key to driving care improvements, yet these data are lacking. The WBCPC Global Survey of bladder cancer patients is the first of its kind.9 Not only did it seek to hear from patients, but it was also the first survey to seek input from carers.
Challenging low bladder cancer awareness
Awareness of bladder cancer remains low. The WBCPC Survey found that 54% of patients did not know the symptoms of bladder cancer before their diagnosis. Almost two thirds (64%) did not know that visible blood in the urine was a symptom of bladder cancer. Yet, visible blood in urine was the most common symptom experienced by 67% of respondents.
After noticing initial signs and symptoms, less than half (43%) sought medical attention immediately, while 32% waited longer than a month to see a healthcare professional. It is a stark reminder of the need to continue our efforts to raise bladder cancer awareness amongst the general public and at-risk populations. Bladder Cancer Awareness Month, taking place every May, is an opportunity for everyone to join the efforts. Contact WBCPC to see how we can help you.
Improving bladder cancer patients’ pathway to diagnosis
Timely diagnosis is a critical element of patients’ care pathway, which impacts the patient experience and treatment outcomes further down the line. Delayed diagnosis is reported to be associated with a more negative patient view of all aspects of care and support.
The WBCPC Survey Report shows that most people visited their doctor once (52%) or twice (23%) before being told they needed to see a specialist. However, 10% of patients visited their primary care physician 5 or more times before being referred. It was more common for patients under the age of 55 (16%), women (18%) and people with advanced or metastatic bladder cancer (21%) to visit their doctor 5 or more times before being referred to a specialist. A fifth (20%) felt their symptoms were not taken seriously when they first visited a doctor, this was higher for people with advanced cancer (31%). Women were over twice as likely to be first diagnosed with a Urinary Tract Infection (UTI) (39%), compared to men (21%).
Supportive and complimentary care needs of patients
The unique complexity of bladder cancer means that patients’ needs expand beyond active treatment. The areas of greatest unmet support needs were financial/employment issues (64%), alternative/complementary therapies (63%), self-esteem/self-image (61%), sexual function and relationships (60%) were areas where patients needed support. These needs are not only there during the treatment but extend to the time after treatment. Many patients in the survey commented that after their treatment, they felt alone and lacked support to manage their health.
Bladder cancer has a significant mental health impact on those affected. Despite the great need for emotional support, many patients could not access it. 58% of patients were not offered emotional support to help them cope with their diagnosis. Moreover, 55% were unable to get support for depression/anxiety, even though it was needed.
Well-informed patients can participate in shared decision-making concerning their health with more confidence. Our survey findings showed that patients needed more information at the time of diagnosis (82%). Information on treatment options and duration (51%), diagnosis and what it means (39%) and side-effects of treatment (37%) were the areas of particular informational need.
Patient-led information materials are valuable resources. Some countries have wonderful resources – but there is lack of access in others. Contact WBCPC if you would like to develop bladder cancer patient information materials in your language for your patient community.
Nearly three-quarters of patients (73%) did not receive information about peer-support groups, charities, or organisations. Often, people found these groups through their own research. Half of patients (50%) contacted a patient organisation for support.9 It was more common for people with non-muscle invasive cancer (52%) and muscle-invasive cancer (49%) to contact a patient organisation, compared to advanced/metastatic cancer (36%). Many patients commented that there was a lack of local patient support groups for them to join, or that their local support groups were placed on hold due to COVID-19.
WBCPC supports anyone on their journey to unite people affected by bladder cancer in their communities. Whether it is a peer support group, or a formal organisation – patient-led organisations offer value and resources to people affected by a bladder cancer diagnosis. Our Start-up guide for bladder cancer patient groups is a useful resource for those starting out.
Caring for the bladder cancer carer
The WBCPC Global Survey, for the first time, offered insights into the experience of bladder cancer carers. The overwhelming majority of patients (98%) wanted support from family and friends, pointing to the essential role of carers in the bladder cancer patient journey. Carers played an important role in finding information about bladder cancer – with more than half (53%) seeking this information alone on the patient’s behalf. Carers often lacked information on how to ‘care’ for a person with bladder cancer. Only a fifth (21%) found all the information they needed.
Finding the way forward together
The WBCPC Global Bladder Cancer Patient Survey Report outlines recommendations in a Call to Action, which guides us all towards workable solutions that will improve the lives of patients and their families. The essential element in improving the lives of people affected by bladder cancer lies in collaboration. Participate in a global conversation and join us at the World Bladder Cancer Patient Forum on October 19, 2023 and work with us to tackle awareness gaps in your local communities in May for Bladder Cancer Awareness Month.
 World Bladder Cancer Patient Coalition. GLOBOCAN 2020: Bladder cancer 10th most commonly diagnosed worldwide. Available at: https://worldbladdercancer.org/news_events/globocan-2020-bladder-cancer-10th-most-commonly-diagnosed-worldwide/. Last accessed September 2023.
 Miller KD, Nogueira L, Devasia T, Mariotto AB, Yabroff KR, Jemal A, et al. Cancer treatment and survivorship statistics, 2022. CA Cancer J Clin. 2022.
 Jubber I et al. Epidemiology of Bladder Cancer in 2023: A Systematic Review of Risk Factors. European Urology, 2023;84: 176-190.
 Richters A et al. The global burden of urinary bladder cancer: an update. World Journal of Urology, 2020;38: 1895-1904.
 Bristol-Myers Squibb. Addressing Challenges in Bladder Cancer: Export Roundtable Report. Available at: https://www.theurologyfoundation.org/images/publications/AddressingChallengesinBladderCancer.pdf. Last accessed September 2023.
 Cohn JA, Vekhter B, Lyttle C, Steinberg GD, Large MC. Sex disparities in diagnosis of bladder cancer after initial presentation with hematuria: a nationwide claims-based investigation. Cancer. 2014;120(4):555-61.
 Antoni S, Ferlay J, Soerjomataram I, Znaor A, Jemal A, Bray F. Bladder Cancer Incidence and Mortality: A Global Overview and Recent Trends. European Urology. 2017;71(1):96-108.
 World Bladder Cancer Patient Coalition. Patient & carer experiences with bladder cancer: findings from a global survey. 2023 report. Available at: https://worldbladdercancer.org/wp-content/uploads/2023/06/WBCPC-Patient-Survey-Report.pdf. Last accessed September 2023.
 All.Can International. Patient insights on cancer care: opportunities for improving efficiency. Findings from the international All.Can patient survey. 2019. Available at https://www.all-can.org/what-we-do/research/patient-survey/. Last accessed September 2023.