First-Ever Global Bladder Cancer Patient Experience Survey Launches Online, Led by the World Bladder Cancer Patient Coalition

The findings will fill a critical evidence gap, on patient and carer experiences

San Francisco, CA (UroToday.com) -- The World Bladder Cancer Patient Coalition (WBCPC) launches the first-ever global bladder cancer patient experience survey. The survey represents a collaborative effort between the WBCPC and its 11 member organisations from around the world.

Globally there are over 570,000 people newly diagnosed with bladder cancer each year, and 1.7 million people currently living with this disease.1

“The worldwide unique insights and experiences of patients and carers have not previously been measured, and are thus not appropriately integrated into policy, advocacy, and research decisions" said Ken Bagshaw, bladder cancer patient in Canada and Founding President of the World Bladder Cancer Patient Coalition.

Patient and carer experience data help to identify what is important to them, and in turn, drive patient-centred care improvements. Yet currently, this data is lacking and there’s an urgent need to fill this evidence gap.

"We will fill this knowledge gap and amplify the voice of bladder cancer patients and carers, by quantifying patient experiences and preferences on a global scale," said Dr. Lydia Makaroff, President of the World Bladder Cancer Patient Coalition. "These insights will help us as a global patient organisation to align our work with patient needs, and champion their views to drive care improvements using evidence-based advocacy."

The survey covers the entire bladder cancer patient pathway – from symptoms, screening, diagnosis, treatment and care, to follow-up and survivorship. The survey is global and available in 10 languages. Findings will be translated into a well-argued report analysing the strengths, weaknesses, and gaps in the bladder cancer care pathway from the patient perspective.

The survey has benefitted from various contributors, including patients, patient advocates, researchers, and healthcare professionals – with a specialist Expert Advisory Committee providing strategic guidance and oversight to enhance this work.

“Patient experience data can be often overlooked, but they are key to understanding how our healthcare systems are performing for those they are designed to serve,” said Dr. Ashish Kamat, Chair of the WBCPC Expert Advisory Committee, and Professor of Urologic Oncology (Surgery) at University of Texas MD Anderson Cancer Center; “I'm delighted to contribute to this important work, that will eventually paint a fuller picture of bladder cancer care.”
References: 

  1. IARC. 2020. Globocan: World Fact Sheet. Online: https://gco.iarc.fr/today/data/factsheets/populations/900- world-fact-sheets.pdf


Source: "News & Events". 2021. World Bladder Cancer Patient Coalition.
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