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PIONEER - EAU Guidelines Office led prioritisation of the most important research questions needing answered in Prostate Cancer (Patients/Consumers survey - second stage)

Prioritisation of questions of most importance for patients and all other stakeholders

Thank you for taking the time to complete this second round of survey. During the first round 57 patients and 73 healthcare professionals took part in the survey. We are extremely grateful to all these participants, and would encourage them to also help us with the second round and kindly complete this survey which includes additional question proposed during the first round.

The EAU Prostate Cancer Guideline Panel and other experts have identified 44 questions they believe are most important to be answered using Big Data. In addition, 12 additional questions were proposed by the respondents (which are relevant for patients with prostate cancer and answerable through BigData) during the first round of this survey. There are currently 56 viable questions. It is important that prioritisation exercise in undertaken to narrow down the number of questions that are regarded as top priority by all stakeholders. Some questions are followed by their PICO (PICO stands for Participants, Intervention, Compactor and Outcome) to make them more clear and/or brief explanation "How could Big Data” help us to answer that question. No attempt has been made to standardise how the questions are framed, they are presented below as they were received from the expert who proposed them.

Please score the importance of the following questions on a scale of 1 (not important) to 9 (critically important). When deciding what score to give, you should consider what impact answering the questions will have on better diagnosis and treatment outcomes for Prostate Cancer.

The first 44 questions are the same as were used in the first round of the survey. We are following Delphi Method for this prioritisation process. Therefore, these 44 questions are contain percentage of patients and healthcare professionals who considered the question “critically important”. Question number 45 (item number 46) onwards do not contain these percentage as these are new questions proposed during the first round of prioritisation process.

Before you begin the survey, please enter your name followed by email address, in the space provided. This will help us avoid sending you unnecessary reminders.

Please contact at m.i.omar@abdn.ac.uk if you require more information. 

Thank you for your help!
1.Before you begin the survey, could you please type your name, and email address below?
(The name and email address are required to avoid sending you unnecessary reminders.)
2.Are there any environmental factors that could increase or decrease the risk for clinically significant prostate cancer?

ROUND 1 RESULT: This question was considered critically important by 30.4% of patients and 34.7% of healthcare professionals who participated in the first round of survey.
1 - Not important
2
3
4
5 - Important
6
7
8
9 - Critically important
3.It would be interesting to find out whether and how prostate cancer occurrence varies among European countries after taking into consideration ethnic background and differences in healthcare systems.

ROUND 1 RESULT: This question was considered critically important by 45.6% of patients and 44.4% of healthcare professionals who participated in the first round of survey.
1 - Not important
2
3
4
5 - Important
6
7
8
9 - Critically important
4.It would be interesting to examine whether knowing the risk for prostate cancer due to genetic factors, could affect the practice of screening for prostate cancer and ultimately, patients’ management and outcomes.

ROUND 1 RESULT: This question was considered critically important by 80.7% of patients and 60.6% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
5.Is it possible to predict prostate cancer survival based on the pathology of the specimen of radical prostatectomy?

ROUND 1 RESULT: This question was considered critically important by 68.4% of patients and 45.2% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically Important
6.We do know that the most aggressive type of prostate cancer (Gleason 5) significantly affects prostate cancer mortality if prevalent in the prostate. But can its presence significantly affect prognosis (e.g. survival) even in smaller numbers?

ROUND 1 RESULT: This question was considered critically important by 63.2% of patients and 37.0% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
7.Increasingly there is demand for doing an MRI of the prostate before taking prostate biopsies. Is it time to change the current practice of performing prostatic biopsies before doing an MRI? More importantly, can MRI before biopsy predict the biopsy result and the patient’s prognosis?

ROUND 1 RESULT: This question was considered critically important by 89.3% of patients and 52.1% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
8.MRI of prostate still misses some tumours. What are the characteristics of those tumours that make their detection difficult? Do we miss clinically significant tumours?

ROUND 1 RESULT: This question was considered critically important by 82.1% of patients and 45.1% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically  important
9.Is there an optimal risk calculator for prostate cancer, and which one is it? Can we rely on risk calculators and MRI scans to avoid unnecessary biopsies?

ROUND 1 RESULT: This question was considered critically important by 66.7% of patients and 47.1% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
10.New tests (biomarkers) are now commercially available and are claimed to sometimes successfully improve the diagnosis of prostate cancer. Are these tumours diagnosed using these new tests different to the ones detected with conventional methods?

ROUND 1 RESULT: This question was considered critically important by 53.6% of patients and 46.6% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
11.We can classify patients with prostate cancer to low-, intermediate- and high-risk groups. But this practice does not mean we can always and safely predict their outcomes, especially in high-risk patients. Why? What differentiates the lethal versus non-lethal cases in terms of patient characteristics and cancer characteristics?

ROUND 1 RESULT: This question was considered critically important by 75.4% of patients and 65.3% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
12.Are there clinical or laboratory parameters that could help us identify the subgroup of patients who could get the most benefit from PSA screening? How can we optimize PSA screening?

ROUND 1 RESULT: This question was considered critically important by 73.2% of patients and 55.6% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
13.What is the natural history of untreated Prostate Cancer? Which patients can safely be managed without active treatment? What is the clinical relevance of a rise in PSA level after surgery or radiation?

ROUND 1 RESULT: This question was considered critically important by 84.2% of patients and 67.1% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
14.It is crucial for clinicians to identify the patients who can safely avoid an unnecessary treatment for prostate cancer versus those who should definitely receive radical treatment. Are there clinical, biochemical or genetic parameters that could help with that decision?

ROUND 1 RESULT: This question was considered critically important by 84.2% of patients and 60.3% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
15.What is the rate of long-term side effects specified per treatment type (surgery versus radiation)? How does surgeon training and experience impact outcomes?

ROUND 1 RESULT: This question was considered critically important by 82.5% of patients and 46.6% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
16.If we manage to gather all data regarding all the details of various forms of treatment for prostate cancer (surgery, radiotherapy, chemotherapy, hormonal therapy) as well as demographic data (such as survival), oncological parameters (such as the pathological characteristics of the tumour) and functional outcomes (rate of incontinence, erectile dysfunction, other complications), then would it be possible to properly identify the ideal ways of prostate cancer management with the best cancer cure outcomes, functional outcomes and highest safety for each individual patient?

ROUND 1 RESULT: This question was considered critically important by 89.5% of patients and 58.9% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
17.Who are the patients that could benefit the most from chemotherapy? What are their demographic characteristics, oncological parameters and genetic background? Can we personalize treatment?

ROUND 1 RESULT: This question was considered critically important by 76.8% of patients and 72.6% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
18.What is the impact of targeting the local tumour on the development of metastases (spread of the cancer outside of the prostate) and outcomes?

ROUND 1 RESULT: This question was considered critically important by 84.2% of patients and 60.3% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically Important
19.Are there any patient-specific (e.g. demographic) parameters and tumour-specific parameters (pathological sub-type, genetic testing) that could help us identify what kind of treatment we should offer to patients with hormone-resistant prostate cancer?

ROUND 1 RESULT: This question was considered critically important by 78.6% of patients and 74.0% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
20.Is there a specific sequence of available treatment options that we need to follow to offer the maximum benefit to patients and limit the side effects of treatment?

ROUND 1 RESULT: This question was considered critically important by 78.9% of patients and 67.6% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
21.Which is the best prognostic marker (best way of predicting the outcome) for prostate cancer patients treated with active surveillance?

ROUND 1 RESULT: This question was considered critically important by 73.2% of patients and 61.6% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
22.Are available prognostic markers (predictors of outcome) able to predict stronger endpoints such as survival without spread of the cancer in prostate cancer patients?

ROUND 1 RESULT: This question was considered critically important by 65.5% of patients and 48.6% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
23.Are currently available predictive models for prostate cancer outcomes generalizable to a population level?

ROUND 1 RESULT: This question was considered critically important by 28.6% of patients and 42.3% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
24.Which are the most important and helpful patient parameters that should be monitored during follow-up in prostate cancer patients? 

ROUND 1 RESULT: This question was considered critically important by 75.4% of patients and 56.2% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
25.Based on the type of treatment for prostate cancer, the patients’ characteristics and the pathological data, how could we individualize follow-up?

ROUND 1 RESULT: This question was considered critically important by 71.9% of patients and 52.1% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
26.Which is the best test to be used during follow-up in prostate cancer patients?

ROUND 1 RESULT: This question was considered critically important by 77.2% of patients and 52.8% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
27.Is there any way we could reduce the impact of treatment-related side effects and improve the recovery of functional outcomes after treatment?

ROUND 1 RESULT: This question was considered critically important by 75.0% of patients and 38.0% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
28.When should we stop follow-up in patients with localized prostate cancer?

ROUND 1 RESULT: This question was considered critically important by 51.8% of patients and 49.3% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
29.Which patients on hormone treatment for prostate cancer should be offered radiological scans during follow-up?

ROUND 1 RESULT: This question was considered critically important by 66.1% of patients and 41.4% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
30.When should we treat patients who experience prostate cancer recurrence after receiving treatment and which are the most effective treatments when the cancer recurs?

ROUND 1 RESULT: This question was considered critically important by 87.5% of patients and 56.2% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically important
31.Are the results and knowledge gained from currently available research data generalizable (can be applied) to ALL prostate cancer patients? In other words, can our practice for patients with prostate cancer safely rely on currently available data? Can we further improve data collection to offer the best possible results to patients?

ROUND 1 RESULT: This question was considered critically important by 69.6% of patients and 43.8% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
32.Which are the most clinically relevant outcomes in Prostate cancer patients that should be collected by all cancer registries?

ROUND 1 RESULT: This question was considered critically important by 60.0% of patients and 54.8% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
33.How can we ensure that the data collected and outcomes reported in different registries are presented in a consistent and globally standardised manner?

ROUND 1 RESULT: This question was considered critically important by 64.3% of patients and 46.5% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
34.Should we control the quality of processes about prostate cancer data identification, selection, recording and reporting?

ROUND 1 RESULT: This question was considered critically important by 66.1% of patients and 47.9% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
35.Can we scientifically combine data from high-quality clinical trials with data collected through large cancer registries?

ROUND 1 RESULT: This question was considered critically important by 49.1% of patients and 53.5% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
36.Is there a way to combine clinical data with other measurable indicators (such as genetic test results) for developing new predictive tools that could better optimize prostate cancer management?

ROUND 1 RESULT: This question was considered critically important by 64.3% of patients and 45.2% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
37.For each part of the prostate cancer care pathway, what important baseline or pre-intervention characteristics are important? What is the best way of measuring them?

ROUND 1 RESULT: This question was considered critically important by 62.5% of patients and 37.0% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-Critically Important
38.What are the most important outcomes across different parts of the prostate cancer care pathway? The outcome domains can be subdivided into the following groups:
a. Oncological
b. Functional
c. Process and recovery
d. Complications and/or adverse events
e. Quality of life
f. Health economic and cost effectiveness

ROUND 1 RESULT: This question was considered critically important by 64.3% of patients and 54.8% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
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5-Important
6
7
8
9-Critically important
39.What is the best way of measuring those outcomes identified above (question 38)? The outcome measures can be sub-stratified further into the following domains:
a. Definitions (e.g. biochemical recurrence following radical prostatectomy or radical radiotherapy)
b. Thresholds
c. Outcome measuring instrument including PROMs (Patient Reported Outcomes Measures) for functional or quality of life outcomes)
d. Metrics of measurement (change from baseline or discrete endpoints)
e. Reporting statistic
f. Time point of measurement

ROUND 1 RESULT: This question was considered critically important by 58.2% of patients and 56.9% of healthcare professionals who participated in the first round of survey.
1-Not important
2
3
4
5-Important
6
7
8
9-critically Important
40.Diagnosis of prostate cancer is more than just a medical condition; it has a significant adverse effect on patients’ psychology and social life. Multiple health professionals will be involved in the management and thus, we need to find the best way of coordinating their actions in an attempt to optimize the results for the patients.

ROUND 1 RESULT: This question was considered critically important by 83.9% of patients and 41.7% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
41.Which patients [based on demographics] experience side effects and late effects of different treatment modalities for prostate cancer? What are these side effects and late effects? When do they occur in the cancer care and aftercare pathway?

ROUND 1 RESULT: This question was considered critically important by 66.7% of patients and 48.6% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
42.How do we routinely collect cancer survivorship data including current disease status, functional ability, current medications, co-morbidities, quality of life, psychological wellbeing, social outcomes, cancer treatment history and modalities used?

ROUND 1 RESULT: This question was considered critically important by 58.9% of patients and 42.3% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
43.Which individuals are most likely to drop out of employment during and following completion of treatment for prostate cancer? When does this occur in the cancer care and aftercare pathway?

ROUND 1 RESULT: This question was considered critically important by 26.8% of patients and 30.1% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
44.How should we deal with disease and treatment-related physical side effects? When is there a need for us to act accordingly?

ROUND 1 RESULT: This question was considered critically important by 66.1% of patients and 39.7% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
45.How should we deal with disease and treatment-related psychosocial side effects? When is there a need for us to act accordingly?

ROUND 1 RESULT: This question was considered critically important by 60.7% of patients and 34.2% of healthcare professionals who participated in the first round of survey.
1-Not Important
2
3
4
5-Important
6
7
8
9-Critically Important
Additional questions proposed by the patients and healthcare professionals during the first round of survey.
46.What are the oncologic and functional outcomes of patients with clinically localized prostate cancer undergoing experimental therapies that are not currently recommended by international guidelines (e.g., high-intensity focused ultrasound) as compared to the standard of care?
1 - Not Important
2
3
4
5 - Important
6
7
8
9 - Critically Important
47.Are PSA screening policies for men aged 50 years and early diagnosis improving survival as compared to opportunistic screening?
1 - Not important
2
3
4
5 - Important
6
7
8
9 - Critically Important
48.How can we improve patient-physician communication in patients diagnosed with prostate cancer and what is its impact on quality of life patient-reported outcomes?
1 - Not Important 
2
3
4
5 - Important
6
7
8 
9 - Critically important
49.Are men aged 50-75 years old who underwent vasectomy at increased incidence of prostate cancer as compared to individuals who did not receive a vasectomy?
1 - Not Important 
2
3
4
5- Important
6
7
8
9 - Critically Important
50.Should there be specialized Prostate Cancer Centers certified and re-certified according to the same criteria throughout Europe with public reporting of identical outcomes?
1 - Not Important
2
3
4
5 - Important
6
7
8
9 - Critically Important
51.What is the risk of prostate cancer death for men on five alpha reductase inhibitors?
1 - Not Important
2
3
4
5 - Important
6
7
8
9 -  Critically Important
52.How do various PC data-sources/databases compare in terms of quality, size, geography, and overlap?
1 - Not Important
2
3
4
5 - Important
6
7
8
9 - Critically Important
53.How does state-of-the-art risk assessment and treatment regimes for PC compare across major cancer centers, and how has this changed over the past decade?
1 - Not Important
2
3
4
5 - Important
6
7
8
9 - Critically Important
54.What is the impact of satellite low-volume lesions next to the index lesion in patients suitable for focal therapy?
1 - Not Important
2
3
4
5 - Important
6
7
8
9 - Critically Important
55.How does focal therapy compare to standard of care in terms of oncological and functional outcomes in patients affected by localized prostate cancer?
1 - Not Important
2
3
4
5 - Important
6
7
8
9 - Critically Important
56.What are the rates of incidence, prevalence, and mortality of prostate cancer across Europe?
1 -  Not Important
2 
3
4
5 - Important
6
7
8
9 - Critically Important
57.What is the rate of adherence to international guidelines for the diagnostic and treatment pathways of prostate cancer?
1 - Not Important
2
3
4
5 - Important
6
7
8
9 - Critically Important
58.Please add any additional question that you think is "critically important" but was not covered in this survey.
59.Please add any comment that you may have on this survey or any of the included questions.
We truly value the information you have provided!

Many thanks!

Imran Omar

EAU Guidelines Office