This document summarizes key findings from the EUPROMS study on the impact of prostate cancer treatments on patient-reported outcomes. Some highlights include: - Radical prostatectomy (RP) and radiation therapy (RT) both significantly reduced sexual function scores compared to active surveillance (AS), with about 1/3 of AS scores. RP also significantly reduced urinary continence scores compared to healthy controls. - About 30-40% of RP patients and 15-20% of RT patients reported urinary incontinence issues like pad usage. RP also saw greater issues with urinary, bowel and sexual dysfunction compared to RT. - Shared decision making scores were generally in the moderate range (median 33-

1. The real burden of prostate
cancer treatments
André Deschamps
Past chairman Europa Uomo
Advisor of the board

2. EUPROMS study
EUROPA UOMO patient reported outcome study
The first ever surveys in PCa from patients for patients
Combined results of EUPROMS 1.0 an EUPROMS 2.0
André Deschamps

3. Europa Uomo
André Deschamps
Ernst-Günther Carl
John Dowling
Department of Urology, Erasmus Cancer Institute, Erasmus University
Medical Center, Rotterdam
Prof.dr. Monique J. Roobol
Sebastiaan Remmers, MSc
Lionne Venderbos, PhD

4. General comments
 Under representation Eastern Europe
 Slight bias in respondents profile towards higher education
 About 60% of all respondents received Radical Prostatectomy hence
the overall results will be influenced by the QOL effects of that
treatment
 The sample size of more than 5000 respondents makes the results
reliable
 Presented results are a snapshot at the time of the survey

6. EUPROMS study
Methodology, sample and treatment profiles

7.  1014 valid answers
EUPROMS surveys
EUPROMS 2.0 (Oct 2021- Jan 2022)
 20 minutes online questionnaire
 19 languages
 EPIC-26 and EORTC-QLQ-C30 and EQ-5D-5L
 Anonymous responses
 3571 answers(+21%) wherefrom 2544 new(71%)
 27 countries
 SDM-Q-9 added
 Insight into treatment profiles
 Tumour characteristics and ISUP-Gleason scores
 Answers outside Europe: Canada(200) and
USA(120)
EUPROMS 1.0 (Aug-Nov 2019)
 20 minutes online questionnaire
 19 languages
 EPIC-26 and EORTC-QLQ-C30 and EQ-5D-5L
 Anonymous responses
 2953 answers
 24 countries
EUPROMS 1.0 and 2.0 combined
 5464 answers
 0,25 % of estimated PCa patients in Europe
EUPROMS 2.0 repeat after 1 year

8. Geographic coverage and valid answers

9. Respondence profile

10. Respondence profile

12. Treatments
0
10
20
30
40
50
<2000 2000-2004 2005-2009 2010-2014 2015-2019 >2020
Year of treatment(%)
AS RP RT
0
200
400
600
800
1000
1200
1400
Distribution
0
10
20
30
40
50
60
70
AS AS-RP RP RP-RT RT RT-ADT RP-RT-ADT Chemo
Treatments per ISUP 1,2 and 3
(% of ISUP)
Gleason 6 ISUP 1 Gleason 3+4 ISUP 2 Gleason 4+3 ISUP 3

13. Treatment differences countries
(for countries with more than 100 answers)
0
5
10
15
20
25
30
35
40
45
50
The
Netherlands
Norway Germany Canada Sweden UK Denmark France US Portugal
AS AS-RP RP RP-RT RT RT-ADT RP-RT-ADT Chemo

15. EUPROMS study
Impact on QOL, discomfort, insomnia and fatigue

19. EUPROMS study
Impact on mental health

23. EUPROMS study
Impact on sexuality

24. EPIC 26 sexual function
Higher score is better; Difference of 10 to 12 points is clinically relevant
RP and RT both major reduction: 1/3 of AS. No clinically relevant difference between RP and RT treatments
reference score for healthy controls without prostate cancer =
Euproms 1.0 and 2.0 combined

26. EPIC 26 : Ability to have an erection as a % of patients treated
0
20
40
60
80
100
AS AS-RP RP RP-RT RT RT-ADT RP-RT-ADT Chemo
Very poor to none, poor
58 % of men on active surveillance have good erections , 20% after RP or RT treatment
Euproms 1.0 and 2.0 combined

27. EPIC 26 : Ability to reach an orgasm as a % of patients
treated
0
10
20
30
40
50
60
70
80
90
100
AS AS-RP RP RP-RT RT RP-RT-ADT RT-ADT Chemo
Very poor to none, poor
66 % of AS patients reach orgasm, scattered ability ( 50% to 16%) after RP or RT treatment
Euproms 1.0 and 2.0 combined

28. 0 20 40 60 80 100
AS
AS-RP
RP
RP-RT
RT
RT-ADT
RP-RT-ADT
Chemo
Not at all A little Quite a bit Very much
EPIC 26 : To what extent were you interested in sex
(% of patients treated)
Scattered interest in sex with a lower tendency towards combined treatments
Euproms 1.0 and 2.0 combined

29. EPIC 26: Self-reported rating of sexual performance
3%
8…
14%
19%
56%
Good
Very good
Fair
Poor
Very Poor
75 % of respondents rate their sexual performance
poor
Euproms 1.0 and 2.0 combined n=5464

30. 18%
15%
17%
22%
28%
EPIC 26: Is sexual function a problem?
No problem
Very small problem
Small problem
Moderate
problem
Big problem
50 % of respondents rate their sexual function a problem
Euproms 1.0 and 2.0 combined n=5464

33. 0
10
20
30
40
50
60
70
80
90
100
No Yes
Use of devices or medication
(% of patients treated)
Only 32% of entire cohort use devices or medication
Euproms 1.0 and 2.0 combined

34. EUPROMS study
Impact on Urinary incontinence

35. EPIC 26 incontinence score
reference score for healthy controls without prostate cancer = 92
Euproms 1.0 and 2.0 combined
Higher score is better; Difference of 6 to 9 points is clinically relevant
RP reduction of more than 20 points vs reference with a big spread

36. 0 10 20 30 40 50 60 70
RP
RT
RP-RT
30
10
29
14
9.3
15
7.6
7.4
7.3
8.8
7.8
7.8
Over the past 4 weeks, how often have
you leaked urine?
More than once a day About once a day
% of respondents that received the treatment
RP = 59 %
RT = 33 %

37. Pad use
Total cohort n=5464
None
64.6%
One
a day
21.3%
Two
a day
7.6%
= >3
6.6%
Euproms 1.0 and 2.0 combined n=5464
35.5 % use pads

38. 47% of the patients treated with RP and 17% of the patients treated with RT use pads
29
12
28
10
3.9
9.2
8.8
2
8
0 10 20 30 40 50 60
RP
RT
RP-RT
How many pads or adult diapers per day
did you usually use to control leakage
during the last 4 weeks?
1 pad per day 2 pads per day 3 or more pads per day
% of respondents that received the treatment
Not shown up to 100% is 0 pads
RP = 47 %
RT = 17 %

41. EUPROMS study
Other important results EPIC 26 with big impact on QOL

42. 1.7
3.2
4.2
0.5
0.9
2.1
0.6
1.1
1.6
0.5
1.5
1.4
0 1 2 3 4 5 6 7 8 9 10
RP
RT
RP-RT
Bleeding with urination
Very small problem Small problem Moderate problem Big problem
% of respondents that received the treatment
Not shown up to 100% is: no problem
RP = 3.3 %
RT = 6.7 %

43. 20
32
22
8.6
16
13
6.4
12
7.5
1.7
4.5
4
0 10 20 30 40 50 60 70
RP
RT
RP-
RT
Weak urine stream or incomplete
emptying ?
Very small problem Small problem Moderate problem Big problem
% of respondents that received the treatment
Not shown up to 100% is: no problem
RP = 36 %
RT = 65 %

44. 15
23
22
7
16
12
4
10
12
0.9
4.8
4.2
0 10 20 30 40 50 60
RP
RT
RP-
RT
Urgency to have bowel movement
Very small problem Small problem Moderate problem Big problem
% of respondents that received the treatment
Not shown up to 100% is: no problem
RP = 26 %
RT = 54 %

45. 13
21
17
5.2
12
14
2.8
7.3
8.2
0.5
3
2.4
0 5 10 15 20 25 30 35 40 45 50
RP
RT
RP-RT
Increased frequency of bowel
movements
Very small problem Small problem Moderate problem Big problem
% of respondents that received the treatment
Not shown up to 100% is: no problem
RP = 22 %
RT = 43 %

46. 6.8
15
12
2.1
7.1
6.8
1.6
5.4
4.2
0.2
2.6
1.9
0 5 10 15 20 25 30 35
RP
RT
RP-
RT
Losing control of stools
Very small problem Small problem Moderate problem Big problem
% of respondents that received the treatment
Not shown up to 100% is: no problem
RP = 11 %
RT = 30 %

47. 3
7.4
4.2
0.8
4.3
2.4
0.5
2.2
3.3
0.05
1.3
0.7
0 2 4 6 8 10 12 14 16
RP
RT
RP-
RT
Bloody stools
Very small problem Small problem Moderate problem Big problem
% of respondents that received the treatment
Not shown up to 100% is: no problem
RP = 4.5 %
RT = 15 %

48. EUPROMS study
Shared decision making

49. Shared decision making (SDM-Q-9)
Overall
n=3571
AS
n=208
AS-RP
n=79
RP
n=1316
RP-RT
n=277
RT
n=339
RT-ADT
n=166
RP-RT-ADT
n=145
Chemo*
n=276
SDM-Q-9 Summary score^
Median,
IQR
34
(25-41)
33
(23-40)
34
(27-40)
35
(27-42)
32
(25-40)
33
(24-40)
33
(20-38)
34
(27-42)
31
(22-39)
Canada
n=250
Denmark
n=163
France
n=143
Germany
n=365
Norway
n=720
Portugal
n=114
Sweden
n=205
NL
n=839
UK
n=176
USA
n=121
SDM-Q-9 Summary score^
Median,
IQR
36
(27-41)
33
(25-39)
34
(26-42)
35
(26-42)
31
(23-36)
25
(20-36)
36
(27-42)
37
(29-43)
34
(26-40)
34
(23-40)
* Chemotherapy as a single treatment or in combination with other, earlier treatments
^ score range 0-45; higher score is higher level of perceived shared decision making

50. Shared decision making (SDM-Q-9)
4.6
7.3
8.5
8.3
5.3
12.2
13.1
12.7
6.1
3
5.2
7.1
6.3
4.7
6.9
8.3
7.2
3.9
3.5
7.2
6
9
9.6
8.5
12.2
10.2
6.5
12.3
17.6
15.4
20.1
21.4
15.5
19.4
18.9
17.7
25.9
26
23.8
23.4
27.6
21.2
20.3
21.4
25.1
50.6
36.8
39.1
32.9
31.4
35.7
26.7
29.7
40.6
1
2
3
4
5
6
7
8
9
Completely disagree Strongly disagree Somewhat disagree
Somewhat agree Strongly agree Completely agree
My doctor and I reached an agreement on how to proceed.
My doctor and I selected a treatment option together
My doctor and I thoroughly weighed the different treatment options
My doctor asked me which treatment option I prefer
My doctor helped me understand all the information
My doctor explained precisely the advantages and disadvantages of the treatment options.
My doctor told me that there are different options for treating my medical condition.
My doctor wanted to know exactlyhow i want to be involved in making the decision
My doctor made clear that a decision needs to be made.

51. EUPROMS study
Other remarks

52. Self-reported comorbidities
%
None 55,2
High blood pressure 26,7
Other 5,7
High blood pressure +obesity 4,4
High blood pressure + diabetes 3,1
Diabetes 2,2
Obesity 1,9
Diabetes +Obesity 0,8
0
10
20
30
40
50
60
None High blood
pressure
Other High blood
pressure
+obesity
High blood
pressure +
diabetes
Diabetes Obesity Diabetes
+Obesity
Self reported comorbidities (%)

53. Do younger men have better outcomes?
65
70
75
80
85
90
<60 60-64 65-69 70-79 >80
EPIC 26 Incontinence score
0
20
40
60
80
<60 60-64 65-69 70-79 >80
Pad use
none 1 pad 2 pads 3 or more
0
5
10
15
20
25
30
<60 60-64 65-69 70-79 >80
EPIC 26 sexual scorel

54. Do men with ISUP 1 to 3 have better outcomes?
0
20
40
60
80
100
120
EPIC 26 Incontinence
Euproms 2.0 ISUP1-3
0
10
20
30
40
50
60
70
80
EPIC 26 Sexual score
Euproms 2.0 ISUP1-3
1891/3571 = 53% reported Gleason 6 or 7 (3+4 or 4+3)

55. Reasons for PSA testing %
Multiple options possible
0
5
10
15
20
25
30
35
40
45
50
Part of a
routine blood
or checkup
I requested a
test
I was having
trouble
urinating
After a
positive DRE
The doctor
said that a test
would be
good
Other The doctor
said there
were other
symptoms
Part of a routine blood or checkup 45,9
I requested a test 25,1
I was having trouble urinating 23,0
After a positive DRE 21,2
The doctor said that a test would be good 14,8
Other 13,0
The doctor said there were other symptoms 6,0
remark: when diagnosed in metastatic setting the reason for
PSA testing trouble urinating raises to 30%

56. Use of diagnostic tests %
Multiple options possible
Prostate biopsy 94,0
MRI scan 49,8
Bone scan 28,3
CT scan 26,9
Ultrasound imaging 25,7
PSMA/PET scan 18,0
0
10
20
30
40
50
60
70
80
90
100
Prostate biopsy MRI scan Bone scan CT scan Ultrasound
imaging
PSMA/PET scan
remark: CT and bone scans in metastatic setting up to 50%

57. EUPROMS study
Comparing EUPROMS with clinical studies

58. Difference compared with PRO in clinical environment
RT =17
RP = 23
RT = 17
AS = 57
EUPROMS
EUPROMS
EUPROMS

59. EUPROMS study
Take home messages

60. Quality of life after treatment
Euproms 1.0 and 2.0 combined n=5464
Sexual function and continence are most affected

61. 0
5
10
15
20
25
30
35
40
Active surveillance Radical prostatectomy Radiotherapy Radiotherapy and ADT Chemotherapy
% of patients with moderate, severe and very severe problems
discomfort fatigue insomnia mental health
Early detection is key
QOL detiorates with progress of the disease

62. 70
75
80
85
90
95
100
INCONTINENCE AVERAGE
EPIC SCORE
0
10
20
30
40
50
60
SEXUAL FUNCTION
AVERAGE EPIC SCORE
Active surveillance should be the first
Treatment option in order to achieve best QOL
(When it can be applied safely)

63. Take home messages
 The results of the EUPROMS 1.0 and 2.0 surveys
combined provide a different and additional
perspective compared to the outcomes published in
clinical studies.
 They should be discussed with the patients before
treatment.
 They should encourage better and longer aftercare.
 Follow up questionnaire after one year have been
launched : results expected later this year.

64. Thank you for virtual listening
europa-uomo.org

65. Canadian Cancer Survivor Network
Contact Info
1750 Courtwood Crescent, Suite 210
Ottawa, ON K2C 2B5
Telephone / Téléphone : 613-898-1871
E-mail: jmanthorne@survivornet.ca or info@survivornet.ca
Website: www.survivornet.ca
Twitter: @survivornetca
Facebook: www.facebook.com/CanadianSurvivorNet
Instagram: @survivornet_ca
Pinterest: http://pinterest.com/survivornetwork/