Experts discuss findings from Global Bladder Cancer Patient & Carer Survey

The World Bladder Cancer Patient Coalition and UroToday partnered for four-part video series, where experts discuss the findings of WBCPC Global Bladder Cancer Patient and Carer Experience survey.

The first of its kind and breath, the WBCPC Global Bladder Cancer Patient and Carer Survey garnered nearly 1,200 responses from 45 countries.

In each episode, Caired by Dr Ashish Kamat, speakers focus on a theme of findings, offering valuable insights into the diagnosis experience, treatment access and care experience, supportive and complimentary care needs, and the impact on daily life and impact on bladder cancer carers.

• Episode 1: Treatment access and experience

In the first episode, Dr Ashish Kamat joined Dr Pat Hensley and Dr Lydia Makaroff to discuss insights into patient experiences with their care and treatment access.

The discussion highlights disparities in preoperative counseling, especially concerning sexual side effects post-radical cystectomy. The experts emphasise on the need for shared decision-making and better patient education, including discussions about clinical trials. They also touch on the challenges faced by patients in resource-constrained settings, advocating for a more individualized and inclusive approach to care.

Watch the episode here.

• Episode 2: Diagnosis Experience

In this episode, Dr Ashish Kamat, Dr Stephanie Demkiw, and Dr Lydia Makaroff focus their discussion on diagnosis experience. The survey revealed low awareness of bladder cancer symptoms, with over half of respondents unaware of these before diagnosis.

Dr. Stephanie Demkiw emphasised a concerning trend that women often receive a diagnosis later than men, underscoring the need for early detection. Dr Lydia Makaroff advocated for global awareness campaigns and nuanced referral systems. Both stressed the often-overlooked psychosocial aspects of a cancer diagnosis. They talked about the need for clear referral guidelines and strong support systems for patients, which are crucial for dealing with challenges in bladder cancer care.

Watch the episode here.

• Episode 3: Supportive and complimentary care needs

This episode featuring Dr Ashish Kamat, Dr Bente Jensen and Alex Filicevas focused on the supportive and complementary care needs of patients.

The experts delve into the survey’s findings, emphasizing the gender disparities in care needs, the importance of pre-habilitation, and the role of patient advocacy groups. Speakers call  for healthcare professionals to actively listen to patients and foster an environment where patients feel comfortable seeking support and information.

Watch the episode here.

• Episode 4: Impact on daily life and impact on carers

In this last episode, Dr Ashish Kamat, Lori Cirefice and Dr Lydia Makaroff discuss the findings focusing on the impact of bladder cancer on daily life and carers.

The survey, revealed significant financial and emotional strain on patients and their carers. The speakers discuss the findings showing the financial impact of bladder cancer, its effected on younger respondents, and emotional toll of caregiving as carers are unable to find the information they need to provide care for someone affected by bladder cancer.

The discussion emphasizes the need for a community-wide call to action to address these issues, including financial toxicity and the emotional toll on caregivers.

Watch the episode here.