What is ENGAGe? Who is ENGAGe? And what do we do?

ENGAGe Executive Committee 2016-2019

Murat Gultekin (Co-Chair, Clinicien)

Esra Urkmez (Co-Chair, Patient Advocacy)

Birthe Lemley (Denmark)

Michaela Simona Ene (Romania)

Elisabeth Avall Lundqvist (Sweden)

Rene Laky (Austria)

Cristiana Sessa (Switzerland)

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https://engage.esgo.org/discover/about-engage/

Fact Sheets for Patients, Patient recommendations, Guidelines: Fact Sheets for Patients What is Cervical Cancer (English, Spanish) - updated 2017 What is Ovarian Cancer (English, Spanish, Swedish) - updated 2017 What is Uterine Cancer (English) - 2018 What is a Clinical Trial (English, Spanish, Swedish) -2018 Gynecological Cancers in Europe Facts Sheets -2018 What is Vulvar Cancer - to be done from a scratch ESGO Patient recommendations and Guidelines Patient friendly version of different materials developed by ESGO for professionals will be designed to assist patients and their families

2012-2017 Achievements We Run, We Spin Against Cancer, We organize yearly Patient Seminars

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TITLE OF THE STUDY: ENGAGe Patient Survey 2017 in Europe - What patients want to tell their doctors?

OBJECTIVE : From the mouth of patients, tell their doctors and heath care providers: What is being done good by their Health Care Team, What is missing in patient care and what areas need improvements?

TIMING: Data collection was in field during August and September of 2017.

LOCATION: The survey was conducted and finalized across Czech Republic, Denmark, Germany, Great Britain,

Greece, Hungary, Poland, Serbia, Spain and Turkey.

SAMPLE: The target group was Gynecologic Cancer Patients from 10 European Countries. Total of 1436 surveys were collected thru ENGAGe network. Survey has been translated into countries’ mother languages

METHOD: The survey was carried out as online web interviewing (CAWI) and as pdf in person format: it used a

structured questionnaire (10 demographic + 25 question on awareness, prevention, diagnosis, treatment, clinical trial and conclusion) prepared by ENGAGe Team, reviewed by Executive Team, volunteer doctors and Non Profit Organization Members within ENGAGe network.

Priviledged Educational Partner

Supporter

Special Thanks to our SPONSORS:

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AND to the TEAM who made it happen:

Murat Gultekin – ENGAGe CO-Chair,

Renata Brandtnerova - Executive Director, ESGO Office

David Cibula, ESGO President

ENGAGe Committee 2016-2019

Murat Gultekin (Co-Chair, Clinicien)

Esra Urkmez (Co-Chair, Patient Advocate)

Birthe Lemley (Denmark)

Michaela Simona Ene (Romania)

Elisabeth Avall Lundqvist (Sweden)

Rene Laky (Austria)

Cristiana Sessa (Switzerland)

ESGO Prag Team - especially Lucie Lamlova,

Quintiles IMS Team – Martin Vadura, Jiří Krýza

Elif Andac Jones, Research Consultant and Political Sociologist at Georgetown University

Luzia Travado, IPOS Board of Directors

William S. Breitbart, Chair -Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering

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Country Doctor / Patient Organization Country Doctor / Patient Organization

Czech Republic - 173 Poland - 110

David Cibula Doctor Kamil Zalewski Doctor & Blue Butterfly foundation

Veronika Cibulova Volunteer Serbia - 152

Michael Halaska Doctor Vesna Bondzic Women's Center Milica, Kraljevo Public Health institute

Daniel Driak Doctor Spain - 113

Denmark - 125 Charo Hierro ASACO

Birhte Lemley

KIU

Cristina Zorrero Lucas Minig

Doctor Doctor

Germany - 119 Turkey - 182

Jalid Sehouli Stiftung Eierstock Krebs Muzaffer Sanci Doctor

Susanne Fechner Stiftung Eierstock Krebs Murat Alan Doctor

Jacek Grabowski Doctor Sevil Benli Kanserle Dans Association

Gulhan Inci Doctor Asli Ortakmac Kanser Savascilari

Greece - 108 UK - 231

Maria Papageorgiu K.E.F.I. of Athens Christina Fotopoulou Doctor

Hungary - 123 Jonathan Ledermann Doctor

Ildiko Nagy-Toth Mallow Flower Foundation Ross Little Ovarian Cancer Action

AND to the Patient Organizations and our Volunteer Doctors who distributed the survey thru online and in pdf form:

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173

125 119

231

108

123 110

152

113

182

0.0

100.0

200.0

300.0

CzechRepublic

(CZE)

Denmark(DNK)

Germany(DEU)

Great Britain(GBR)

Greece(GRC)

Hungary(HUN)

Poland (POL) Serbia (SCG) Spain (ESP) Turkey (TUR)

Number of respondents by country- 1436 total

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6.4%

5.6%

12.9%

7.7%

16.6%

13.0%

18.7%

13.6%

21.0%

24.7%

26.2%

20.2%

28.8%

34.0%

33.6%

54.6%

21.8%

18.5%

0% 20% 40% 60% 80% 100%

TOTAL (N=1436)

Currently under treatment (N=535)

I have finished treatment (N=739)

I have relapsed (N=162)

up to year 2000 2001 - 2005 2006 - 2010 2011 - 2013 2014 - 2015 2016 - 2017

Current health condition – SORTED BY YEAR OF DIAGNOSIS

9

39.3%

41.0%

45.6%

74.8%

76.2%

11.1%

31.8%

9.2%

75.2%

11.5%

26.3%

6.7%

6.5%

76.4%

15.5%

74.3%

65.4%

15.3%

28.3%

7.4%

70.4%

20.0%

13.3%

15.9%

12.9%

19.1%

33.6%

12.6%

7.4%

18.7%

20.0%

10.5%

7.1%

6.0%

15.2%

10.2%

7.3%

0% 20% 40% 60% 80% 100%

TOTAL (N=1436)

CZE (N=173)

DNK (N=125)

DEU (N=119)

GBR (N=231)

GRC (N=108)

HUN (N=123)

POL (N=110)

SCG (N=152)

ESP (N=113)

TUR (N=182)

Ovarian cancer Breast cancer Uterine cancer Cervical cancer Fallopian tube cancer Vulval cancer Vaginal cancer

What type of cancer do you have? SORTED BY COUNTRY

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AWARENESS - Knowledge of screenings/methods Have you heard of any of the following screenings or methods that might help prevent these gynaecological cancers? SORTED BY COUNTRY The most frequently mentioned graphed – multiple choice question

56

.5%

41

.2%

33

.2%

30

.7%

24

.4%

44

.5%

39

.9%

24

.3%

5.2

%

32

.4%

37

.6%

62

.4%

39

.2%

16

.8%

38

.7%

37

.8%

31

.1%

40

.3%

32

.8%

63

.2%

45

.5%

33

.8%

55

.8%

13

.9%

81

.5%

48

.1%

42

.6%

24

.1%

9.3

%

82

.1%

82

.9%

69

.9%

37

.4%

2.4

%

70

.9%

35

.5%

30

.9%

26

.4%

23

.6%

48

.0%

19

.1%

16

.4%

17

.8%

46

.1%

47

.8%

20

.4%

16

.8%

43

.4%

29

.2%

55

.5%

27

.5%

33

.5%

19

.8%

33

.0%

0.0%

20.0%

40.0%

60.0%

80.0%

100.0%

PAP smear for CervicalCarcinoma

HPV vaccine for CervicalCarcinoma

HPV test for CervicalCarcinoma

BRCA Tests for OvarianCarcinoma

none of above mentioned

TOTAL (N=1436) CZE (N=173) DNK (N=125) DEU (N=119) GBR (N=231) GRC (N=108)

HUN (N=123) POL (N=110) SCG (N=152) ESP (N=113) TUR (N=182)

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PREVENTION – Which of the following screening tests do you regularly attend? SORTED BY COUNTRY

32.7%

17.3%

52.8%

38.7%

32.9%

58.3%

61.0%

16.4%

13.2%

15.9%

31.9%

27.6%

36.4%

7.2%

33.6%

8.2%

10.2%

44.5%

63.2%

45.1%

31.3%

24.9%

34.7%

12.8%

23.5%

36.8%

14.8%

22.8%

26.4%

15.1%

30.1%

21.4%

14.8%

11.6%

27.2%

22.1%

16.7%

15.4%

12.7%

8.6%

8.8%

15.4%

0% 20% 40% 60% 80% 100%

TOTAL (N=1436)

CZE (N=173)

DNK (N=125)

DEU (N=119)

GBR (N=231)

GRC (N=108)

HUN (N=123)

POL (N=110)

SCG (N=152)

ESP (N=113)

TUR (N=182)

cervical and breast cancer never followed routine cervical nor breast cancer screenings breast cancer cervical cancer

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SO US PATIENTS, WHAT DO WE WANT TO TELL OUR HEALTH CARE PROVIDERS? Many of us did not know about HPV vaccinations, PAP Smear Test, nor BRCA Tests

for Ovarian Carcinoma - WE WANT TO KNOW, WE NEED TO BE EDUCATED Even if we knew, many of us did not attend as we had no access to them, or no

finances to get them done, or we did not find them relevant to us. AGAIN, WE NEED TO BE EDUCATED, and WE NEED ACCESS TO THEM. We need to find a way on how we can improve the prevention in these countries, together. Don’t forget, numbers and studies are meaningless unless we do something with them

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DIAGNOSIS AND TREATMENT STAGE:

First conversations, First shocking moments,

First informative conversations with doctors

A NEW LIFE FOR PATIENTS BEGINS…

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How would you describe your first conversation with your doctor/ nurse/ health care team? SORTED BY COUNTRY

44.7%

65.9%

35.2%

49.6%

37.7%

50.0%

43.9%

32.7%

36.2%

50.4%

45.1%

29.7%

19.7%

26.4%

39.5%

31.2%

23.1%

34.1%

30.9%

38.2%

28.3%

26.9%

16.6%

9.8%

34.4%

17.3%

22.2%

14.6%

20.0%

11.8%

10.6%

22.0%

9.1%

7.6%

13.9%

7.3%

16.4%

13.8%

10.6%

6.0%

0% 20% 40% 60% 80% 100%

TOTAL (N=1436)

CZE (N=173)

DNK (N=125)

DEU (N=119)

GBR (N=231)

GRC (N=108)

HUN (N=123)

POL (N=110)

SCG (N=152)

ESP (N=113)

TUR (N=182)

very good and clear - described everything about my disease and treatment

good but I was in too big of much shock to process the information

good, but not clear - the information was not very clear

very distant, and not clear- the language they used was not clear to me

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Did you received printed educational materials from your health care provider after your first conversation? SORTED BY COUNTRY

68.9%

64.2%

37.6%

72.3%

47.2%

95.4%

86.2%

76.4%

83.6%

75.2%

72.5%

31.1%

35.8%

62.4%

27.7%

52.8%

4.6%

13.8%

23.6%

16.4%

24.8%

27.5%

0% 20% 40% 60% 80% 100%

TOTAL (N=1436)

CZE (N=173)

DNK (N=125)

DEU (N=119)

GBR (N=231)

GRC (N=108)

HUN (N=123)

POL (N=110)

SCG (N=152)

ESP (N=113)

TUR (N=182)

no yes

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Did you think these educational materials were helpful? SORTED BY COUNTRY

91.3%

95.2%

92.3%

87.9%

90.2%

60.0%

100.0%

76.9%

96.0%

100.0%

90.0%

8.7%

7.7%

12.1%

9.8%

40.0%

23.1%

10.0%

0% 20% 40% 60% 80% 100%

TOTAL (N=446)

CZE (N=62)

DNK (N=78)

DEU (N=33)

GBR (N=122)

GRC (N=5)

HUN (N=17)

POL (N=26)

SCG (N=25)

ESP (N=28)

TUR (N=50)

yes no

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SO US PATIENTS, WHAT DO WE WANT TO TELL OUR DOCTORS WHO DIAGNOSE US FOR TREATMENT? Many of us did not get printed informative material from you during first

visits and we were too shocked to understand what you were telling us WE WANT PRINTED MATERIALS TO TAKE HOME, SO WHEN WE GET OVER THE SHOCK WE CAN EDUCATE ORSELVES AND OUR CAREGIVERS AT HOME HOW: We need to find a way to work together to achieve this. Patient organizations should be working with doctors to provide the informative brochures, and we will need sponsors to do so. AGAIN… Don’t forget, numbers and studies are meaningless unless we do something with them

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Waiting Time - How long did you have to wait before treatment started?

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NOW, THE TREATMENT STARTS

PATIENTS MOSTLY DON’T KNOW: • WHAT TO EXPECT • WHAT TO EAT • HOW TO COPE • AND HOW TO LIVE WITH IT

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Were you offered any complimentary help? If yes, which of followings: SORTED BY COUNTRY

34

.9%

21

.9%

17

.4%

13

.2%

9.0

% 1

6.2

%

4.0

%

7.5

%

8.7

%

1.7

%

25

.6%

35

.2%

10

.4%

24

.0%

5.6

%

64

.7%

26

.1%

37

.0%

54

.6%

40

.3%

31

.6%

44

.6%

12

.6%

1.7

% 9

.5%

33

.3%

25

.9%

22

.2%

7.4

%

7.4

%

17

.1%

30

.9%

8.1

% 1

5.4

%

0.8

%

41

.8%

4.5

%

23

.6%

22

.7%

9.1

%

28

.3%

15

.1%

17

.8%

10

.5%

2.6

%

50

.4%

21

.2%

16

.8%

1.8

%

1.8

%

48

.4%

6.6

%

24

.7%

3.3

%

13

.2%

0.0%

20.0%

40.0%

60.0%

80.0%

psychological support information on existingpatient organizations or

support groups

diet recommendation /dietitian help

rehabilitationprogramme

social support

TOTAL (N=1436) CZE (N=173) DNK (N=125) DEU (N=119) GBR (N=231) GRC (N=108)

HUN (N=123) POL (N=110) SCG (N=152) ESP (N=113) TUR (N=182)

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Evaluations of Doctors and Nurses by Patients: How strongly do you agree or disagree with the following statements?

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WHAT DO WE WANT TO TELL OUR DOCTORS: We are here We are a team: patients, caring families, patient

organizations, doctors, nurses, other heath care professionals

AND we SURELY want to do something with the numbers, with the results

AND we want to improve the care of the patients together

AND If you would like to be a part of our vision,

ENGAGe needs your help !