Global Bladder Cancer Patient Survey results point to areas of unmet need

Today marks an important milestone for our bladder cancer community. We are proud to launch the report of our very first Global Bladder Cancer Patient & Carer Experience Survey. This multi-year and multi-national evidence-generation study covers the entire bladder cancer patient experience – from disease awareness, diagnosis, treatment and care, follow-up, life with and after cancer, and the impact of the COVID-19 pandemic.

Explore some of the highlights below, read the Executive Summary or dive into the full Global Bladder Cancer Patient & Carer Experience Survey Report.

The World Bladder Cancer Patient Coalition study found that prior awareness of bladder cancer was low as:

• Over half of patients (54%) did not know the signs and symptoms of bladder cancer before their diagnosis

Almost two-thirds of patients did not know visible blood in urine was a symptom of bladder cancer, although it is the most common one. Visible blood in urine was the most common symptom experienced by 67% of bladder cancer patients who answered the survey.

Over half (57%) of patients were diagnosed with another condition before bladder cancer, the most common being a urinary tract infection.

Sign-posting to bladder cancer support groups, charities and organisations

Bladder cancer patient support groups, charities and organisations are a vital part of patient care. They provide comfort, credible information and peer support, which can be a helpful resource for people facing a bladder cancer diagnosis, treatment and life with and after cancer, yet our survey shows that:

• 73% did not receive information about peer-support groups and charities
• 50% contacted a patient organization or charity for support

Support and information needs of bladder cancer patients

The WBCPC Bladder Cancer Patient & Carer Survey results show that patients often lacked help and support in many areas, even though it was needed. Almost all (82%) of patients needed more information about bladder cancer and especially on treatment options and duration (51%), diagnosis and what it means (39%), and side effects of treatment (37%).

Patients felt well supported by the people involved in their treatment and care. Patients felt less satisfied with the practical and financial support provided throughout their treatment and care

• 32% needed more practical support with things such as help with daily tasks and getting treatments
• 54% needed more financial support

Emotional support access was lacking for most bladder cancer patients. It was needed the most at the point of diagnosis, after initial diagnosis and during treatment. Nearly all bladder cancer patients needed emotional support:

• 91% said they needed emotional support throughout their treatment and care experience and,
• 30% did not receive the emotional support they needed at that time.
• 46% said that the long-term impact of their bladder cancer treatment was not addressed.

Role of bladder cancer carers

To our knowledge, the WBCPC Bladder Cancer Patient & Carer Survey was the first of its kind, looking to better understand the challenge and the impact of caring for someone affected by bladder cancer.

Carers played a crucial role in finding information about bladder cancer:

• 53% sought out the information alone on patients’ behalf
• Only 21% found all the information that they needed on caring for someone with bladder cancer
• For 49% of carers, emotional support was the most challenging type of care to provide.

In our survey, almost all (91%) of carers said they were impacted emotionally by caring for or supporting someone with bladder cancer. This included feelings of fear that the person with bladder cancer will relapse, experiencing emotional distress, and always placing the needs of the person they were caring for ahead of their own.

About the Global Bladder Cancer Patient & Carer Survey

The World Bladder Cancer Patient Coalition’s Bladder Cancer Patient & Carer Survey collected responses from 1198 people from 45 countries. The survey was open to all people affected by bladder cancer and their carers, regardless of their geographical location. It was available in 11 languages, and the survey ran from October 2021 to February 2022.

The survey results are published in the European Urology Patient and Carer Experiences with Bladder Cancer: Results from a Global Survey in 45 Countries.

You can download the Executive Summary report below. Head over to the Global Bladder Cancer Patient & Carer Survey to learn more about this research, its contributors and the full findings report.

We call on patient organisations, professional societies, healthcare system leaders, industry, and other stakeholders to prioritize funding projects, initiatives, and future work that will directly improve patient and carer experiences in these focus areas.

If you have any questions regarding our Global Bladder Cancer Patient Survey, please do get in touch with us at info@worldblafddercancer.org