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PRESENTATION OF THE RESULTS

3rd JACPO June 18th – June 19th 2019

Ivica Belina, president of Coalition of Associations in Healthcare


How the JACPO meeting came to be?

No country can fight cancer by it self!

High cancer incidence and cancer mortality throughout the countries of the CEE region

Disparities in health literacy, engagement of cancer patient organizations, advocacy

Disparities in cancer care

We wanted to share best practices, knowledge, and start common activities


How the survey came to be?


What we wanted to achieve with the survey?


Number of participants per capita


assist. prof. Slavica Sović MD, PhD, School of Medicine, University of Zagreb


Personal Information

For myself; 12984; 79%

On behalf of somebody else;

3474; 21%

9

Are you filling in this questionnaire for yourself, or on behalf of somebody else? (N = 16458)


Personal Information- gender

Female;12764; 78%

Male; 3694; 22%

10

What is your/person on whose behalf you are filling the questionnaire gender? (N = 16458)


Personal Information- gender

81 81 85 84 78 78

6174 73 78 83 81

19 19 15 16 22 22

3926 27 22 17 19

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

pe

rce

nta

ge

Female Male

11

What is your/person on whose behalf you are filling the questionnaire gender? (N = 16458)


Personal Information- Participants by Country

12

Participants by Residence Country (N = 16458)


Personal Information- type of cancer

Head and neck; 586; 4%

Gynecological; 1372; 8%

Breast; 7378; 45%

Urological; 490; 3%

Colorectal / bowel; 1735; 10%

Skin; 430; 3%

Lung; 2034; 12%

Gastrointestinal; 624; 4%

Prostata; 254; 2%

Haemathological; 1056; 6%

Brain/ CNS; 427; 3%

Sarcoma; 72; 0%

13

What type of cancer were you first diagnosed with? (N = 16458)


Personal Information- type of cancer

2 2 1 1 4 2 7 5 4 1 01012

5 5 89 10 4 12

64 4

6

5661

5758

39 4230

36 4953

65 41

52

32

2 2

6

35 3

2

2

69

1112

914

10

137

7

413

4 40

0

42

4

2 3 42 2

6 1014 9

19 14

13

12 108

10 12

4 4 2 63 5

5

5 22

2 2

0 0 0 02 1

3

3 21

2 1

3 2 6 2 7 514

6 7 15 3 40 2 1 2 1 4 4 2 4 2 6 51 0 0 0 0 1 0 0 0 0 1 0

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Sarkoma

Brain/ CNS

Haemathological

Prostata

Gastrointestinal

Lung

Skin

Colorectal / bowel

Urological

Breast

Gynecological

Head and neck

14

What type of cancer were you first diagnosed with? (N = 16458)


Diagnose of cancer and cancer treatment

7786

9479

72 73 78

63

82 84 85 85

1511

6

3 2111

13

24

10 813

6

8 317

717

9 147 8

29

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Per

cen

tage

Screening program

Screening programfor an unrelatedhealth problem

I visited doctorbecause I felt thatsomething is wrongwith me

15

How was your cancer diagnosed? (N = 16458)


7984

92,56

74 7265

7062

78 8287,8 87

7

11

7,44

214

4

7

7

7 3

9,59

0

13,724,78

0

23,9413,75

30,7822,27

30,97

14,67 14,53

2,6113,1

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Screening program

Screening program foran unrelated healthproblem

I went to the doctorbecause I felt thatsomething is wrongwith me


Diagnose of cancer and cancer treatment- breast cancer

Figure 7. How was your breast cancer diagnosed? (N = 7378)

Diagnose of cancer and cancer treatment-colon cancer

8796 98 93

8071 76

64 63

85 86

60

131 2

015

13 8 2937

514

13

0 3 07 5

15 156

010

0

27

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Screening program

Screening program for anunrelated health problem

I visited doctor because I feltthat something is wrongwith me

17

How was your colon cancer diagnosed? (N = 1735)


Diagnose of cancer and cancer treatment-time for diagnosis

75

56

7266 61

5365

54 5950

3648

14

25

1721 26

31

24

3031

3146 26

5

80 5 7 9 6

75

11 13

9

26 4

4 2 3 2 4 0 3 3

8

4 6 3 1 2 3 2 4 2 2 27

0 1 3 2 2 1 2 1 2 2 0 2

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Not applicable

More than one year

Six month to one year

Three to six month

One to three month

Less than a month

18

After first seeing a doctor about the health problem caused by your cancer, how long did it

take to be diagnosed with cancer? (N = 16458)3rd JACPO June 18th – June 19th 2019

Diagnose of cancer and cancer treatment- first treatment

63 6657

47

71

47

79

49

69 70

5547

29 2434 51

25

45

18

40

26 25

42

40

6 8 32 3

63

83 3 4

8

2 0 40 1 1 0 2 2 0 0

20 2 2 0 0 0 0 1 0 1 0

10 0 0 0 0 0 0 0 0 1 0 2

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

More than five years

One to five years

Less than one year

Less than six month

Less than three month

Less than a month

19

After you were diagnosed with cancer, how long did you wait for the first treatment?

(N = 16458)3rd JACPO June 18th – June 19th 2019

What was your first treatment?

68,2963,89

81,72

56,7764,59

70,42

60,48 58,0251,98 53,85

70,7866,37

27,3128,57

10,61

29,04

26,6723,67

29,2826,33 40,53 39,02

24,2927,41

2,784,95

06,9

3,173,22

4,17,55

2,94 3,083,61 2,71

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100% Not applicable

Don't know/ don't remember

Supportive therapy

New medicines through clinicaltrials

Hormones therapy

Biological therapy

Immunotherapy

Radiotherapy

Chemotherapy

Surgery


Diagnose of cancer and cancer treatment- advanced disease

22 20 2133 31 28

2132

1119 21

29

75 73 7162 61 67

6760

77 6670

65

3 5 6 3 6 48 6 10 12

10 40 2 2 2 2 1 4 3 3 3 0 1

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Not applicable

Do not know

No

Yes

21

Had your cancer spread to other organs or parts of your body at the time you were first told you had cancer?

(N = 16458)


Diagnose of cancer and cancer treatment-support

52

70 7160

66 62

30

6069

6170

49

32

23 1927 20 28

63

2923

32 11

29

3

76 10 9 5 2

28 4

1311

121 5 4 5 4 5 9

0 3 6 11

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Do not know

I was told by phone or letter

Yes

No

22

When you were first told that you had cancer, had you been told you could bring a family

member or friend with you? (N = 16458)


Diagnose of cancer and cancer treatment-diagnosis communication

6252

59 58 5362

73

48 4657 51

60

22

2620 19 24

21

15

27 27

28

20

24

16 22 21 23 23 17 1225 27

1629

15

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

It should have been done a lot more sensitively

It should have been done a bit more sensitively

It was done sensitively

23

How do you feel about the way you were told you had cancer? (N = 16458)


Diagnose of cancer and cancer treatment- treatment options

11 13 18 15 19 229 14 15

2815

6

50 4142 43 35 35

24

3741

37

3339

3237

3229 34 27

5834 27

27

36 41

6 7 811 11 14

7 14 157

16 8

0 2 0 2 1 1 2 1 2 1 0 5

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Do not know

There was only one type of treatment

Yes, completly

Yes, to some extend

No

24

Before your cancer treatment started, were your treatment options explained to you? (N =

16458)


Diagnose of cancer and cancer treatment-doctor communication

10 11 9 5 10 7 3 60 6 6 7

21

35 4143

4437 40 37 49

48 50 49

39

2935 39 29

4234

4240 33 29 34

3024

15 14 17 1423

14 10 13 14 11

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

More than three

Two-three

One

None

25

Before your cancer treatment started, how many conversations did you have with the doctor

who runs your treatment? (N = 16458)


Diagnose of cancer and cancer treatment-tretment plan

2637

2330 33

46

21

39 3441

2612

55

52

62

33

53 30

65

44 52 4157

78

1510 15

31

1220

11 13 11 14 14 34 2 0 5 2 4 3 4 3 4 2 6

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Do not know

I do not know what a cancer treatment plan is

Yes

No

26

Figure 18. Have you been given a cancer treatment plan? (N = 16458)


Diagnose of cancer and cancer treatment- side efects

2617

3824 24 29

17

32 26 30 2815

34

34

17

23 27 1848 21

21 18 2038

3844 41

50 4547

2741 53

45 46 41

2 2 3 1 3 4 5 40

7 4 30 2 2 1 1 2 4 2 0 1 2 3

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Do not know

I did not need an explanation

Yes, to some extent

Yes, definitely

No

27

Were the possible side effects of treatment(s) (short term and long term) explained in a way

you could understand? (N = 16458)


Diagnose of cancer and cancer treatment-side efects management

31 31

53

36 3931

18

46

2436

2817

27 25

14

23 1819 46

14

21

1422

30

42 4133

38 4248

29 36

53 47 46 49

0 3 0 3 2 2 7 4 3 3 3 4

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

<Pe

rce

nta

ge

Do not know

Yes, to some extent

Yes, definitely

No

28

Were you offered practical advice and support in dealing with the side effects of your treatment(s)?


Diagnose of cancer and cancer treatment-decisionmaking

17

3240 39

31 3118 22

34

5850

17

38

31 20 17 3123 49

3119

1823

37

4335

38 3935

4430

41 44

23 28

42

2 1 3 5 2 2 4 5 2 1 0 4

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Do not know

Yes, to some extent

Yes, definitely

No

29

Were you involved as much as you wanted to be in decisions about your care and treatment?


Support to patients and caregivers- day to day activities

57 5562

55 5347

31

5260 61

71

50

28 3433

28 3130

5624

29 25 12

38

97

3

10 1218

720

8 10 15 86 4 2 6 3 5 6 4 3 4 3 5

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge Do not know

It was not necessary

Yes

No, but I would have liked a discussion orinformation

30

Did hospital staff discuss with you or give you information about the impact cancer could have on your day to day

activities (for example, your work life or education)?


Support to patients and caregivers- financial benefits

7581 77

7083

72

32

77 79 74 7969

1611 18

10

8

6

35

711

5

11

8

48 4

15

8

16

13

1310

189

16

6 1 0 5 1 620

4 0 2 17

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Axi

s Ti

tle

Do not know

It was not necessary

Yes

No, but I would have liked information

31

Did hospital staff give you information about how to get financial help or any benefits you might be entitled to?

(N = 16458)


Support to patients and caregivers- worries

38 3950 51 46

3830

51 48 4958

37

38 33

3624 35

36

26

3130

3827

36

19 24

12

2016

23

32

15 218 9

20

4 3 2 5 3 313

3 2 5 5 6

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

I had no worries or fears

Yes, definitely

Yes, to some extent

No

32

. During your hospital visit, did you find someone on the hospital staff to talk to about your worries and fears?

(N = 16458)


Support to patients and caregivers- social services

46

67 67

51 5543

31

56

74

54 56

37

27

12 11

1315

19

13

17

7

16 11

28

11 3 6

56

12

25

82

4 7 13

11 16 1226

22 2120

14 1321 24 19

6 2 5 4 2 37

3 5 3 2 20 0 0 0 0 1 2 2 0 1 0 1

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Do not know

Not applicable

I did not need help

Yes, definitely

Yes, to some extent

No

33

During your cancer treatment, and once your cancer treatment finished, were you given enough care and support from

health or social services (for example, district nurses, home helps, psychological support)? (N = 16458)


Support to patients and caregivers- written information

58 5669

5262 61

31

5239

5851

32

36 36

26

35

34 34

60

41

51

31

3156

7 8 413

4 6 8 7 10 1118

12

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Do not know

Yes

No

34

Were you given clear written information about what you should or should not do after leaving hospital?

(N = 16458)


Support to patients and caregivers-who to call?

45

6553

34

5750

2639 44

57 62

31

51

2846

52

3844

64

54 48

41 33

59

4 7 214

4 6 10 7 93 5 10

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Do not know

Yes

No

35

Did hospital staff tell you who to contact if you were worried about your condition or treatment after you left hospital? (N =

16458)


Support to patients and caregivers-HCP communication

38

55 57 56 57 58 60 59 5947 43

64

31

27 18 2231 27 19 25 28

25 34

25207 17 13

8 1012

8 5

13 6

311 11 8 8 3 5 10 8 8

15 187

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Do not know

Yes, often

Yes, sometimes

No

36

Did groups of doctors and nurses talk in front of you as if you weren’t there? (N = 16458)


Support to patients and caregivers-trust

6571

4558 61 60 59 61

74

57 58 56

42

212

513

28

5

914

7

710

310

12

11

1410

11

117

14

18 7

918

1710

19 18

10

9 216

3 10

1811

5 3 4 3 0

13 1973 0 3 1 1 2 2 1 0 1 0 1

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

People from patient organization

Counselor in support group

GP

Oncology nurse

Peer in support group

Oncologist

37

Who gave you most confidence and most trust?

(N = 16458)


Support to patients and caregivers-out of pocket costs

37 3319

7

38 35 32 29 2532

3

18

2726

24

9

168 17

1214

16

6

19

17

6

6

1

4

4

14

417 4

1

4

19

35

50

84

4353

37

5544 48

89

60

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Not applicable

I already had private health insurance

The care or treatment I wanted wasn’t available

I wanted to avoid delays

38

If you paid for any of your cancer care and treatment yourself, why was this? (N = 16458)


Support to patients and caregivers alternative treatments

5164

5140

5244 48

24

39 35

50 48

43

3346

49

4653 42

6751

53

47 48

6 3 311

2 310 8 9 11

3 4

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

I prefer not to say

No

Yes

39

Did you buy any alternative preparations or pay for any alternative treatments? (N = 16458)


Support to patients and caregivers- alternative treatments

73 73 71 67 67 65 67 62 61 6357

70

18 23 2320

30 2919 32 28

34

31

28

8 4 613

3 614

6 114

121

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

I prefer not to say

No

Yes

40

If you bought some alternative treatments, or pay for some alternative treatments, did you inform your doctor about it?

(N = 16458)


Support to patients and caregivers- financial burden

79

6153

61 5772

5359 59

5057

64

16

1924

21 23

14

14

20 2025

1717

4

17 21 16 1613

29

19 2123 21

16

1 4 2 2 3 1 5 2 0 2 4 3

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Do not know

No

I don’t think about that

Yes

41

Do you feel that your cancer care is a financial burden for your family? (N = 16458)


Quality of life-working status

35 31

46

19

3642

28 3141

2639

26

22

3

2

15

2

9

16

0

3

16

14

11

22

8

0

16

4

146

13

19

4

11

4

3 6

2

1 2

1 3

01

1

1

5

1214

19

15 823 14

17

11

1420

21

3

4

37 3

8

7

1

0 4

2228

21

41

26 27 30 3221

3925 24

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge Retirement

Not able/ not interested in work

Sick leave

I have to change my profession

Unemployed

Part time employed

Fully employed

42

What is your working status since you were diagnosed or treated? (N = 16458)


Quality of life-support of your working environment

46

61

42 4251

60

38 38 38

63

3750

13

30

3930

33 20

39

25 28

28

24

25

38

7

1222

910 16

31 30

5

3719

0 05 6 5 6

5 2 5 4 2 43 2 2 0 2 4 1 3 0 0 0 1

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

I'm not interested

Not applicable

No

Sometimes

Yes

43

Do you have the support of your working environment since you were diagnosed or treated?


Quality of life-communication with friends and family

4 18

0 4 3 5 5 5 4 3 4

68 7151 65 59 68 61 58

7467 63

67

19 2031

29 2723

26 30

1922 29 22

2 5 5 2 6 4 5 42

34 57 3 3 3 2 2 1 3 0

10 10 0 2 1 1 0 3 0 0 3 0 1

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

I'm not interested

Just with my children

Just with my partner

Yes, sometimes

Yes, always

No

44

Can you talk openly about your disease with your friends and family members? (N = 16458)


Quality of life- daily routine

31 2942 41 37

27 32 37 3726

33 37

57 64 4154

5159 49

49 4965

62 51

12 717

511 14 19 14 14 9 5

12

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Not at all

To some extend

Absolutely

45

Has your daily routine changed a lot since you were diagnosed with cancer? (N = 16458)


Quality of life- management of treatment side-effects

17 14 9 516

915

5 06 2

8

23

49 61

41

53 64 55

42 5655

37

64

34

1511

20

1516

13

18

1619

26

11

225

10

15

5

812

30 1512

12

11

418

919

112 4 5

13 8

24

6

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

None

Poor

Unsatisfactory

Satisfactory

Excellent

46

How would you describe your management of treatment side-effects (nausea, fatigue, skin changes, loss of hair, pain,

loss of appetite …)? (N = 16458)


Quality of life- influence of treatment side-effects

8 8

24 2114 18

317 13 10

2111

38

20

26 29

28 25

10

2923 30

49

29

2750

32 37

3524

23

3040 33

21

34

14 5 3

7

5

12

20

915

7

7

7

8 13 7

4

9 15

22

96

13

2

12

6 4 8 2 7 6

21

5 3 70

6

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

None

Very rarely

Rarely

Sometimes

Very often

All the time

47

Have you experience the influence of treatment side-effects on your every-day life? (N = 16458)


Palliative care in advanced disease

6551 51 50

58 54 51

68

44 42 42

58

2444 41 45

35 42

31

30

2635

5536

115 8 5 6 4

18

2

3123

2 6

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge

Disagree

Somewhat agree

Strongly agree

18/06/201948

To what extent would you agree or disagree with the following statement about death? (N=11 628)

We don’t talk about death and dying enough in this country.

Overall experience with cancer care

34

53 5363

50

6356

6454

59

37

60

33

3329

20

34

29

24

24

2825

42

299

5 9 5 4

4

6

45

77

517

6 6 6 72

3

48 3

5

26 3 3 5 5 211

4 5 5 94

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nta

ge Do not know

Three or more times

Once or twice, with no clear explanations

Once or twice, with clear explanations

Not at all

49

During the whole of your care and treatment for cancer, how often were appointments cancelled

by the hospital or clinic you were due to attend? (N = 16458)


Overall experience with cancer care (3)

COUNTRIES*

ALBANIA BiH BULGARIA

BiH ALBANIA CROATIA

BULGARIA ALBANIA

CZECHIACROATIA

POLAND

SLOVAKIA

SLOVENIA

CROATIA BiH CZECHIA

HUNGARY MACEDONIASERBIA

SLOVAKIA

MACEDONIAHUNGARY

ROMANIA

SERBIA

SLOVAKIA

POLAND CZECHIASLOVAKIA

SLOVENIA

ROMANIA MACEDONIA

SERBIAHUNGARY

MACEDONIA

SLOVAKIA

SLOVENIA

SLOVAKIA

CZECHIA

HUNGARY

MACEDONIA

POLAND

SERBIA

SLOVENIA

SLOVENIACZECHIA

POLAND

SERBIA

SLOVAKIA

50

Figure 83. Distribution of overall score (How would you

rate your cancer care?) by Country! (N = 16458)

Kruskal-Wallis ANOVA test:

H(11,N=16458) = 662,62; P < 0,001

*Counries in each row do not differ one from

eachother in distribution of overall score

(How would you rate your cancer care?)

Table 1. Results of the multiple

comparisons of the distribution of overall

score (How would you rate your cancer

care?), Kruskal-Wallis ANOVA TEST


Conclusions

Health care professionals give confidence and trust to participants and caregivers

Processes of health care to be improved: • Delivering bad news• Waiting time • Providing information about treatment • Providing information about health care and social care support• Health service and social service support (for example, district

nurses, home helps, psychological support)


Conclusions (2)

Diagnose influence daily routine

It is financial burden for participant and family

Social networks support is welcome


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