Understanding bladder cancer patient experience

Bladder cancer patient and caregiver evidence generation study

Despite its prevalence, there is a lack of general awareness about bladder cancer across the world. The majority of people diagnosed are over 60 years old, but increasingly all ages are affected. Bladder cancer is an isolating disease and can be a rollercoaster of tests, treatments and side effects. During and following treatment, patients frequently experience detrimental effects on their physical, psychological and sexual health.

Our member bladder cancer patient organisations working directly with people affected by bladder cancer, provide insight into what it means to be affected by bladder cancer. We recognise that there is an urgent need to address the global evidence gap relating to these experiences of bladder cancer patients and carers. Without this evidence, we believe that global and local change, would not be possible on the scale required to ensure that every person diagnosed with bladder cancer has a timely diagnosis, access to treatment and the best possible chance of survival and quality of life possible, regardless of where they live in the world.

With the Global bladder cancer patient and caregiver experience survey, we aim to fill this evidence gap, gather patient experiences and preferences, alongside expert knowledge from a selection of countries with a particularly high impact of bladder cancer.

The survey is expected to launch in September 2021.

Putting bladder cancer patient experience at the centre

Despite that 500,000 people are diagnosed with bladder cancer annually across the world, and the level of distress and isolation reported by people with bladder cancer, there is a lack of research into the area of bladder cancer patient experience. To identify critical gaps in current care services, and common challenges, and ultimately propose ways to improve outcomes and support services for people affected by bladder cancer and their carers.

It is vital that we capture their experiences and views and identify what is important to them. With this evidence direct from patients and carers, we will be able to engage in targeted advocacy and policymaker engagement across the world and drive change for better bladder cancer patient outcomes, quality of life and care.

We foresee that we will be able to identify critical areas of unmet need and persistent challenges experienced by bladder cancer patients in areas of: awareness, timely and accurate diagnosis, shared decision making and treatment choice, access to expert healthcare services and access to treatment options (including clinical trials), information and support, follow-up care, surveillance, reoccurrence and survivorship. The study will seek to identify the impact on the quality of life throughout the entire care pathway and impact on the emotional, financial and mental wellbeing of bladder cancer patients and caregivers.

We invite you to come back soon for more information, and in the meantime if you would like to get involved or contribute in any way, please do get in touch with us at info@worldbladdercancer.org 

Expert advisory committee

The Expert Advisory Committee (EAC)  for the study provides strategic guidance and expert input and oversight throughout the project duration.

Chair – Dr Ashish Kamat (US)

MD Anderson Cancer Center, International Bladder Cancer Group, International Bladder Cancer Network, International Society of Urology

Assistant Chair – Dr Patrick Hensley (US)

MD Anderson Cancer Center

Dr Bente Thoft Jensen (DK)

European Association of Urology Nurses

Henry Scowcroft (UK)

Independent, Cancer Research UK, National Cancer Research Institute

Dr Lydia Makaroff (UK)

World Bladder Cancer Patient Coalition, Fight Bladder Cancer

Dr Mario Fernandez (CL)

Clinica Alemana De Santiago, Universidad del Desarrollo

Dr Mikio Sugimoto (JP)

Kagawa University

Dr Peter Black (CA)

University of British Columbia, International Bladder Cancer Network, International Society of Urology

Dr Stephanie Chisolm (US)

Bladder Cancer Advocacy Network

Dr Stephanie Demkiw (AU)

Bladder Cancer Awareness Australia, Access Health and Community

Dr Wim Witjes (NL)

European Association of Urology Research Foundation

Expert advisory committee