Help prioritise top UK research questions for bladder cancer - PHASE 2


Thank you to everyone who took part in the first part of the survey to identify the top 10 research priorities for bladder cancer.

Bladder cancer is seriously underfunded and ABC UK is delighted to be working with one of the top research teams in the UK to identify what patients and healthcare professionals think are the most important areas to focus on for bladder cancer. This is your opportunity to put the patient view to researchers and help guide research into bladder cancer; and we need a bit more help!

The second part of the survey has just been released and we would love you to get involved - WHETHER YOU COMPLETED THE FIRST QUESTIONNAIRE OR NOT - the survey is open to all bladder cancer patients.

By answering a simple, short, survey you can help one of the top research teams in the UK identify what patients and health professionals think are the key issues for research spending on bladder cancer.

To help improve diagnosis and treatments for bladder cancer, it is crucial that the funding available is used in the most strategic way to help healthcare professionals make better decisions and recommend the most appropriate treatments for patients.

Despite the substantial disease burden for patients and healthcare providers, bladder cancer only receives 0.6% of cancer research spending in the UK, with minimal input of patient advocates. There is an unmet need to identify research priorities based on patients' and healthcare professional needs. The team has identified about 40 unanswered research questions for bladder cancer. With your help, they would like to identify which ones need to be answered in the next five years.

Many thanks to those of you that participated in the first round of the questionnaire.

Following the first round, the following five questions were ranked most highly as research priorities by both patients and health care professionals:

1. Could the identification of the important molecules and genes present in high-risk bladder cancer help to ensure that patients are offered the right treatment to ensure the best possible cancer outcome/prognosis?

2. Can new genetic markers help us identify which patients require which treatment (risk stratification) and how they will respond to treatment?

3. Which markers (found in blood, tissue or other fluids - which are related to the cancer) are useful to select more effective treatments in patients with high-risk bladder cancer?

4. How should patients with high-risk cancer be monitored after their cancer treatment to ensure that any return of the cancer is found?

5. Could the identification of certain markers (found in the blood, urine or tissue which are related to the cancer) improve outcomes in advanced bladder cancer, especially in patients who require chemotherapy or radiotherapy prior to surgery for their bladder cancer?

What do we need you to do now?

This questionnaire method of coming to a consensus or agreement amongst patients and clinical experts (called the Delphi method) means that we need the questionnaire to be completed preferably by each individual TWICE. We have clarified and modified the research questions after gaining more feedback from patints, this feedback should now help us to prioritise your research choices better.

What if I didn't complete the first questionnaire?

If you did not get the opportunity to complete the first round questionnaire, please feel free to do so now - the more responses we get, the more accurate this consensus method will be.

Please, copy the link below to your browser to access the questionnaire. You will be asked to score the given questions on a scale from 0 to 9 in terms of their importance to you. Please note that we don't ask you to answer the question, we are interested in whether you believe it is worth investigating these research questions - which is what you can indicate with your score. We will then combine input from healthcare professionals and patients to identify the top 10 questions. Thank you for your support!

Thank you very much for your support on this, your opinion really does matter.

The patient survey can also be completed by a partners or family member.

The questionnaire should take about 10-15 minutes. We would like to thank you for your time and look forward to receiving your input!

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