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July 2007
European Pain in Cancer (EPIC)
Global Results Presentation
EPIC Steering Group Presentation
© 2007
Research International. No part of these materials may
be used, reproduced or adapted without the prior written
consent of the copyright owner. All rights reserved
European Pain in Cancer (EPIC) survey
Objectives
1. Investigate the impact of pain on cancer patients
2. Establish the prevalence of pain for patients across all
cancer stages in Europe
3. Understand current treatment practices and levels of
satisfaction, and identify the gaps in the existing provision of
effective pain management for cancer patients across Europe
4. Explore the impact of pain on sufferers’ quality of life
Research plan
EPIC: Countries involved
 1st phase – patients are
being screened in order to
obtain the prevalence of
cancer related pain in
cancer patients
 Patients are being
recruited from a wide
geographical area
 In each region, as many
potential routes for
recruitment as possible are
being undertaken
 Specialist pain units will
not be approached to
avoid bias in the data
collected
Finland
Switzerland
Israel
Romania
Italy
France
Norway
Sweden
Denmark
Czech Republic
UK
Ireland
 Respondents were recruited through a multi-modal approach
to ensure as representative a spread of data as possible.
Within each country, recruitment was carried out to provide a
broad cross section of that country’s population.
 The main methods of recruitment are the following:
1. Primary and secondary care physicians
2. Patient groups and associations
3. Advertising in national media
4. Panels of consumers
 No recruitment through Pain Specialists or Palliative Care
units in order to avoid bias with regard to the levels of pain
experienced by respondents
Recruitment Methodologies (1)
Recruitment Methodologies (2)
Primary and
secondary care
physicians
Patient groups
and associations
Advertising in
national media
Panels of
consumers
UK   
France   
Italy 
Switzerland  
Romania 
Czech Rep.  
Israel 
Finland   
Denmark   
Norway   
Sweden    
Ireland  
Sampling and methodology plan
Pilot Screening Phase
400 cancer patients (3 countries)
200 cancer patients (8 countries)
50 cancer patients (1 country)
 All patients screened to ensure
they experience pain (rated 5 or
more on a 0 to 10 scale)
 Inclusion of mix of solid tumour
types (including lymphomas/
blood-borne cancers)
 No stages of cancer were
excluded from this survey
Main Interview Stage
50 telephone interviews carried
out with patients who have
passed the screening phase
Phase 1 Phase 2
400 cancer
patients
200 cancer
patients
50 cancer
patients
In this report
Phase 1
target
Phase 2
target
Phase 1
results in
this report
Phase 2
results in
this report
UK 400 50 400 50
France 400 50 400 50
Italy 400 50 402 50
Switzerland 200 50 200 50
Romania 200 50 200 50
Czech Rep. 200 50 200 53
Israel 200 50 205 50
Finland 200 50 200 50
Denmark 200 50 200 50
Norway 200 50 200 50
Sweden 200 50 207 52
Ireland 100 50 50 15
In this report
All who complete screener and
experience pain more than once a
week
UK 311
France 379
Italy 299
Switzerland 195
Romania 155
Czech Rep. 163
Israel 167
Finland 178
Denmark 159
Norway 177
Sweden 199
Ireland 28
Percentage of patients reporting pain in cancer by country
71%
54%
52%
62%
52%
71%
88%
66%
61%
20%
75%
65%
56%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Czech Republic (n=282)
Denmark (n=373)
Finland (n=383)
France (n=642)
Ireland (n=96)
Israel (n=287)
Italy (n=457)
Norway (n=302)
Romania (n=327)
Sweden (n=1051)
Switzerland (n=267)
UK (n=617)
Global (n=5084)
European Pain in Cancer (EPIC)
Survey Results
Total number of patients contacted
5084
Total number of patients
screening IN
Total number of patients
screening OUT
2864 2220
Patients eligible for 2nd stage
quant*
2410
Patients agreeing to 2nd stage
quant
1226
56% 44%
Phase 1:
Screener
survey
Phase 2:
In-depth
interview
* All who completed screener and currently
experience pain more than once a week
Total number of patients screening OUT
2220
44%
137 respondents (3%) screened out because suffering from skin cancer
1350 respondents (27%) screened out because do not suffer pain at all
426 respondents (12%) screened out because they do not currently
experience pain or did not experience pain in the last month
105 respondents (3%) screened out because they experience pain
approximately once a month, less often than once a month, only when active
192 respondents (6%) screened out because their level of pain is
between 0-4
10 respondents screened out because linked to a pharmaceutical
company or a market research firm or were involved in pain med studies
S1
S4
S5
S7
S8
S11/1
2
n=4947 left in
n=3597 left in
n=3171 left in
n=3066 left in
n=2874 left in
n=2864 left in
Phase 1 Screener Survey
Results
Cancer staging – half of patients are unable to state the
stage of their cancer
Don't know, 50%
Stage 3, 12%
Stage 4, 11%
Stage 1, 9%
Stage 2, 12%
Stage 5, 5%
Metastasis, 1%
Half of patients do
not know at what
stage their cancer
is at
Base: all who has specified cancer (n=4947)
S2. And could you tell me what stage your cancer is at?
n=4947
Symptoms leading to diagnosis
31%
27%
11%
9%
7%
5%
5%
4%
3%
2%
2%
2%
2%
2%
1%
1%
1%
1%
1%
1%
1%
1%
1%
1%
1%
5%
P
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Base: all who has specified cancer (n=4947)
S3. What symptoms lead you to see the doctor prior to your diagnosis of cancer?
Pain is the key symptom leading to cancer diagnosis followed by a lump and
chronic fatigue
n=4947
Existence of pain due to cancer
Base: all screened – (individual base sizes shown on chart)
S4. Have you suffered any pain due to your cancer?
More than two thirds of cancer patients report pain which they
attribute to their cancer
27
7
8
10
13
14
14
18
18
23
23
25
38
34
47
73
93
92
90
87
86
86
82
82
77
77
75
62
66
53
T o tal (n=4947)
P ancreatic (n=142)
B o ne/ muscle (n=173)
B rain tumo ur (n=135)
N o n-H o dgkins (n=61)
Lung cancer (n=417)
H ead / N eck cancer (n=213)
B o wel / C o lo recto ral (n=504)
T esticular (n=150)
B lo o d bo rne (n=90)
Gynae cancer (n=411)
Lympho mas (n=102)
B reast cancer (n=1427)
Leukemia (n=125)
P ro state (n=624)
No pain Pain
n=4947
More than 50% of patients with
the following types of cancer
currently suffer from pain:
 Lung
 Pancreatic
 Brain Tumour
 Bone/Muscle
 Blood Borne
 Non-Hodgkins
 Head/Neck
 Leukaemia
From S5 - Patients
currently suffering
from pain
Existence of pain due to cancer – country breakdown
Base: all screened – (individual base sizes shown on chart)
S4. Have you suffered any pain due to your cancer?
More than two thirds of cancer patients report pain which they
attribute to their cancer
27
5
9
12
15
17
21
21
23
24
36
39
57
73
95
91
88
85
83
79
79
77
76
64
61
43
T o tal (n=4947)
Italy (n=457)
Switzerland (n=267)
Israel (n=269)
C zech R epublic (n=282)
N o rway (n=298)
D enmark (n=337)
R o mania (n=327)
UK (n=608)
F rance (n=642)
F inland (n=353)
Ireland (n=94)
Sweden (n=1013)
No pain Pain
n=4947
Recent experience of pain related to cancer
Base: all who suffered from pain (n=3597)
S5. Do you currently experience pain or have you experienced pain in the last month that is attributable to your cancer?
88% of cancer patients have
experienced pain within the
last month
Yes -
currently,
51%
Yes - in last
month, 37%
No, 12%
(n=1323)
(n=425)
(n=1848)
n=3597
Base: all who currently experience pain or have experienced pain in the last month (n=3171)
S6.How long have you suffered from pain that is directly caused by your cancer? S7. How often do you experience pain?
I experience pain… % (n)
At all times 16% (522)
Several times a day 19% (598)
Daily 22% (698)
Several times a week 23% (744)
Once a week 8% (256)
Several times a month 8% (248)
Approximately once a
month
1% (44)
Less than once a month 1% (18)
Only when active 1% (27)
Almost a third of cancer patients have been
experiencing pain for more than 12 months
More than half of patients experience pain at least
once a day
2562 patients
(81% answering
at this point)
are in pain at
least several
times a week
All patients consider themselves to be in some level of pain
Base: all who currently experience pain once a month (n=3066)
S8. Thinking about the last time you experienced pain, please give me a number from 0 to 10 indicating the intensity of your pain where a “0” means
“no pain at all” and a “10” means “the worst pain imaginable”. ?
0%
0%
1%
2%
3%
29%
21%
20%
14%
7%
4%
0% 5% 10% 15% 20% 25% 30% 35%
0
1
2
3
4
5
6
7
8
9
10
94% report that they experience moderate to severe pain (rated 5 -
10 on the pain scale)
4% regard their pain as ‘the worst pain imaginable’
Of those patients who scored 0- 4 on the
pain scale, none stated 0 as their score.
This shows that they all consider
themselves to be in some level of pain,
even if it is only low
(n=109)
(n=213)
(n=418)
(n=610)
(n=632)
(n=892)
(n=80)
(n=66)
(n=23)
(n=5)
(n=0)
CROSS REFERENCE: 21% of patients
suffering from moderate to
severe pain, experience it
daily
n=3066
Level of pain per country
Mean Level of pain
6.11
6.94
6.52
6.72
6.1
6.96
6.27
5.82
6.67
5.59
6.5
6.36
4 5 6 7 8
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Swiss
UK
 Sweden and
Norway are the
countries with
the lowest level
of pain
 Israel is the
country where
the intensity of
pain is the
highest with 63%
of respondents
within the 7-10
range
Global mean score: 6.38
Base: all who currently experience pain once a month (n=3066)
S8. Thinking about the last time you experienced pain, please give me a number from 0 to 10 indicating the intensity of your pain where a “0” means
“no pain at all” and a “10” means “the worst pain imaginable”. ?
n=3066
Pain scores
75%
60%
65%
73%
86%
65%
80%
81%
66%
50%
63%
75%
20%
39%
33%
24%
14%
34%
17%
14%
30%
19%
27%
23%
0% 20% 40% 60% 80% 100%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Swiss
UK
Scores in the
bracket 5-7
Scores in the
bracket 8-10
Base: all who currently experience pain once a month (n=3066)
S8. Thinking about the last time you experienced pain, please give me a number from 0 to 10 indicating the intensity of your pain where a “0” means
“no pain at all” and a “10” means “the worst pain imaginable”. ?
n=3066
Almost a quarter of patients who experience moderate to
severe pain (rated 5 or more) are not receiving treatment for
their pain
Base: all who score 5 -10 on pain scale (n=2874)
S10. Are you currently receiving any treatment for your pain?
I am
receiving
treatment
for my pain,
77%
I am not
receiving
treatment
for my pain,
23%
Patients who
rate 5 or
more in
terms of pain
experience
CROSS REFERENCE: 19% of patients
who suffer daily from moderate to
severe pain, DO NOT receive
treatment
n=2874
Phase 2 In-Depth Interview
Survey Results
Those completing the main survey are more likely to have
breast and bowel/colorectal cancer and have a higher level
of pain experienced than average
All who completed 2nd stage (n=573)
The sample is comprised of 35% men and 65% women
9% are aged between 18-40, 30% aged between 50-59, and 17% over the
age of 70
Patients are more likely to be suffering from breast and bowel/colorectal
cancer (27% and 12% respectively)
All suffer from pain, most report that they are experiencing pain at the
present time (75%). 51% have suffered from pain for more than 12 months
On the 0-10 pain scale, average reported pain levels were 6.95 (vs overall
mean of 6.38)
Pain frequency is most likely to occur on a daily basis (72%) with 142
respondents (25%) stating they are constantly in pain.
82% are receiving treatment for their pain
Demographics
Cancer Pain
Few patients have been referred to a pain clinic
yes,
24%
no,
73%
Don't know
3%
Base: All respondents (n=573)
Q15. Have you ever been referred to see a pain management specialist or to a pain clinic about your cancer pain?
89% of those referred have received some form of treatment for
their pain. Of those not referred, 81% had also received treatment
% ever been referred to see a pain
management specialist or a pain clinic COUNTRY COMPARISON
 The countries with the highest
number of patients being
referred to a pain clinic are Italy
and Israel with 52% and 40%
respectively
 UK, Ireland and France are all
near to the average
 Romania has the least amount
being referred with only 6% of
patients
n=573
HCP with main responsibility for management of cancer pain
are the Oncologist and the GP
HCP with main responsibility for management of cancer pain for all
patients contacted (Q12)
Medical Oncologist, 42%
General/Family Practitioner, 19%
Medical Doctor, 9%
Radiation Oncologist, 1%
Palliative care physician, 2%
Haematologist, 4%
General Surgeon, 4%
Physiotherapist, 1%
Other, 5%
None, 3%
Pain Specialist, 3%
OB/GYN, 2%
Neurologist, 2%
Nurse/Specialist Nurse, 1%
Anaesthetist, 1%
Base: All respondents (n=573)
n=573
33% of patients recall having had their pain assessed using
a pain scale
y e s
2 1%
no
6 8 %
DK/ Ca n' t
r e me mbe r
11%
Base: All respondents (n=573)
Q18. How does your HCP assess how much pain you are in?
Prompted recall
Q19 Does the HCP use a pain
scale?
55%
26%
5%
2%
15%
7%
0% 10% 20% 30% 40% 50% 60%
I proactively tell him/her
HCP examines me
HCP asks me to move part of my body
HCP asks me to walk
HCP uses pain scale
HCP does nothing
However only 15% of patients mentioned use of a pain scale
spontaneously
Spontaneous recall
n=573
Country differences in pain scale usage – prompted and
spontaneous
0% 20% 40% 60% 80% 100%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Spontaneous Prompted
 Italy, Israel, France and
Switzerland are the
countries where most
respondents
acknowledged the use of a
pain scale unprompted,
with 44%, 28% and 20%
respectively
 Only when prompted,
countries such as UK,
Norway, Ireland, Finland
and Denmark highly
recalled using a pain scale
for measuring their pain
Base: All respondents (n=573)
Q18. How does your HCP assess how much pain you are in?
Q19 Does the HCP use a pain scale?
n=573
Almost a quarter of patients report that their HCP never or
rarely asks them about their pain
56%
17%
4%
11%
12%
0% 10% 20% 30% 40% 50% 60%
At every consultation
At most but not all consultations
At less than half consultations
Only occasionally
Never
Base: All respondents (n=573)
Q16. How often does the HCP who treats your cancer ask you about the pain you are experiencing? Please note, this is the physician who treats
your cancer and NOT your cancer pain. Does this happen…?
How often does your HCP ask you about your pain?
CROSS REFERENCE:
54% of respondents that
are asked about their
pain by their HCP at
every consultation,
also proactively tell
their doctor about their
pain
n=573
Country comparison
46%
42%
42%
29%
4%
83%
42%
46%
62%
80%
82%
32%
74%
54%
56%
9%
26%
15%
8%
30%
25%
52%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Never/occasionally At every consultation
 In Scandinavian
countries most
patients are rarely
asked about their
pain by their HCPs
 In Czech
Republic, Italy
and Ireland
most patients
are asked
about their
pain at every
consultation
Base: All respondents (n=573)
Q16. How often does the HCP who treats your cancer ask you about the pain you are experiencing? Please note, this is the physician who treats
your cancer and NOT your cancer pain. Does this happen…?
n=573
Relationship with HCP
HCP does not take into consideration their quality of life to a
great extent
32%
62%
78%
50%
58%
24%
64%
32%
48%
80%
34%
27%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Global % : 50%
Base: All respondents (n=573)
Q24 To what extent does HCP take into consideration your quality of life?
n=573
HCP does not understand that pain is a problem
34%
9%
22%
8%
15%
8%
10%
17%
12%
2%
4%
0% 5% 10% 15% 20% 25% 30% 35% 40%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Global % : 13%
n=573
Base: All respondents (n=573)
Q25 My doctor understands my pain is a problem
HCP would rather treat their cancer than their pain
54%
48%
50%
56%
37%
56%
34%
28%
33%
19%
20%
24%
0% 10% 20% 30% 40% 50% 60%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Global % : 38%
n=573
Base: All respondents (n=573)
Q25 My doctor would rather treat my cancer than my pain
HCP does not have enough time to discuss pain
32%
44%
42%
34%
58%
32%
30%
28%
23%
20%
33%
7%
0% 10% 20% 30% 40% 50% 60% 70%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Global % : 33%
n=573
Base: All respondents (n=573)
Q25 I do not have enough time to discuss my pain with my doctor
HCP does not know how to control their pain
62%
42%
13%
38%
37%
26%
15%
28%
13%
10%
14%
8%
0% 10% 20% 30% 40% 50% 60% 70%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Global % : 26%
n=573
Base: All respondents (n=573)
Q25 I think my doctor does not know how to control my pain
HCP does not always ask them about their pain
62%
56%
50%
27%
30%
23%
26%
13%
8%
4%
12%
0% 10% 20% 30% 40% 50% 60% 70%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Global % : 27%
n=573
Base: All respondents (n=573)
Q25 My doctor always asks me about my pain
Although most patients feel that their HCP shows consideration and
listens to them, not all patients receive this level of care
50%* say that their HCP
does not take into
consideration their
quality of life to a great
extent (Q24)
CROSS REFERENCE: 38% of these are patients
whose oncologist is the main person
responsible for managing their pain
33%* report that their
doctor does not have
enough time to
discuss pain with
them (Q25)
CROSS REFERENCE: 40% of these are
patients whose oncologist is the main
person responsible for managing their
pain
26%* report that their
doctor does not know
how to control their
pain (Q25)
CROSS REFERENCE: 31% of these are
patients whose oncologist is the main
person responsible for managing their
pain
13%* feel that their doctor
does not understand
that pain is a problem
(Q25)
CROSS REFERENCE: 25% of these are patients
whose oncologist is the main person
responsible for managing their pain
38%* report that their doctor would rather treat their
cancer rather than their pain (Q25)
CROSS REFERENCE: 39% of these are patients whose oncologist is the main person
responsible for managing their pain
27%* report that their doctor does not always ask
them about their pain (Q25)
CROSS REFERENCE: 26% of these are patients whose oncologist is the main person
responsible for managing their pain
*Total number of patients (573) randomly selected to participate in an in depth interview about cancer pain
Q35. Which prescription medicines are you currently taking for the specific pain we have been discussing?
Base: All using prescription meds (n=441)
46% of cancer patients using prescription medication are on
strong opioids
Italy, Switzerland and
Sweden are the
countries which make
greater use of strong
opioids, with 84%, 76%
and 63% respectively
37%
32%
15%
46%
0% 10% 20% 30% 40% 50%
Strong opioids
Weak opioids
Non opioids
Not stated
France, Romania and UK
are the countries which
make greater use of
weak opioids, with 70%,
62% and 54%
respectively
n=441
Use of strong opioids per country
40%
60%
42%
84%
76%
63%
25%
11%
34%
29%
33%
30%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Base: All using prescription meds (n=varies by country)
Q 35. Which prescription medicines are you currently taking for the specific
pain we have been discussing?
Global % : 46%
The initial rating of the effectiveness of prescription drugs in
controlling cancer pain is good – the vast majority of
respondents consider them to be effective
Overall, how effective do you think your current prescription pain
medicines are at controlling your cancer pain?
24%
60%
12%
2% 2%
0%
10%
20%
30%
40%
50%
60%
70%
Very
effective
Quite
effective
Quite
ineffective
Very
ineffective
DK/Not sure
Initially, when
respondents are
asked to rate the
effectiveness of
their prescription
medication, they
respond positively,
however when
prompted more
specifically later on
in the survey, more
negative aspects
arise
Base: All using prescription meds (n=441)
Q36. Overall, how effective do you think your current prescription pain medicines are at controlling your cancer pain?
n=441
However, when prompted, more than half of patients using prescribed
analgesia (64%) report that there are times when their medicines are
not adequate to control their pain
6%
1%
20%
32%
26%
13%
0%
5%
10%
15%
20%
25%
30%
35%
All the time Every
hour
A few
times a
day
A few
times a
week
A few
times a
month
Very rarely
Base: All using prescription meds (n=441)
Q 37. Are there ever times when your pain medicines are not adequate to control your pain?
Base: All those whose meds do not control pain (n=281)
Q 38. How often does this happen?
Perceived lack of efficacy of pain management when on medication
In these patients,
pain occurs
frequently:
CROSS REFERENCE: 57% of
patients who report
that there are times
their medicines are not
adequate to control
their pain, are in daily
pain
n=441
Times when medicines are not adequate to control pain
– across countries
41%
73%
81%
67%
47%
70%
63%
71%
49%
72%
68%
47%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Global % : 64%
Base: All using prescription meds (n=441)
Q 37. Are there ever times when your pain medicines are not adequate to control your pain?
n=441
The main reasons for changing
medication are:
 42% – Need stronger medication
 29% – Pain became worse
 23% - Medication did not work
 16% – Did not like side effects
 12% - Had a negative reaction to
medication
Changing medication
Q31 Switching Medication
58% of patients taking prescription
medication have had their
medication changed
More than half of respondents have had their medication
changed and/or are taking more than one medication
The main reasons for taking more than
one medication are:
 34% – Need stronger medication
 23% – Pain became worse
 16% - Effects of medication didn’t last
long enough
 10% – Current doctor’s
recommendation
Q33 Additional Medication
54% of patients taking prescription
medication have been prescribed more
than one medicine for the same pain
Out of the patients who perceived their medication to be quite ineffective ..
70% of them switched
medication
53% of them are taking
additional medication
n=441
63% of patients using prescription analgesia report that they
are affected by breakthrough pain
5%
14%
7%
21%
7%
18%
8%
10%
8%
0%
5%
10%
15%
20%
25%
A
t
a
l
l
t
i
m
e
s
S
e
v
e
r
a
l
t
i
m
e
s
a
d
a
y
O
n
c
e
a
d
a
y
S
e
v
e
r
a
l
t
i
m
e
s
a
w
e
e
k
A
p
p
r
o
x
o
n
c
e
a
w
e
e
k
S
e
v
e
r
a
l
t
i
m
e
s
a
m
o
n
t
h
A
p
p
r
o
x
o
n
c
e
a
m
o
n
t
h
L
e
s
s
t
h
a
n
o
n
c
e
a
m
o
n
t
h
O
n
l
y
o
n
a
c
t
i
v
i
t
y
Base: All who suffer from breakthrough pain (n=279)
Q42. How often do you suffer from breakthrough pain?
More than half of patients taking prescription medication suffer
from breakthrough pain at least once a week
n=279
Breakthrough pain across countries
44%
77%
62%
82%
67%
53%
50%
87%
60%
72%
50%
73%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Czech Republic
Denmark
Finland
France
Ireland
Israel
Italy
Norway
Romania
Sweden
Switzerland
UK
Base: All using prescription meds (n=441)
Q41 Do you ever suffer from breakthrough pain?
Global % : 63%
n=441
Only a third of patients experiencing breakthrough pain are
taking additional prescription medication to treat it
72% of respondents who experience breakthrough pain say that there are
times their medicines are not adequate to control their pain
However, 33% of patients experiencing breakthrough pain are being treated
with additional painkillers
ADDITIONAL PAINKILLERS TAKEN TO
TREAT BREAKTHROUGH PAIN ARE:
 35% Strong opioids
 25% Weak opioids
 29% Non opioids
Positive rating for additional
painkillers:
 35% say - Very effective
 49% say - Quite effective
 10% say - Quite ineffective
CROSS REFERENCE – Out of
patients who experience
breakthrough pain
 45% use Strong opioids
 40% use Weak opioids
 35% use Non opioids
n=279
Side effects due to current prescription medication
31%
30%
19%
12%
7%
7%
5%
4%
3%
19%
32%
0% 5% 10% 15% 20% 25% 30% 35%
Constipation
Nausea/Vomiting
Sedation
Psychological effects
Diarrhoea
Tremor
Itchy skin
Breathing difficulties
Urinary retention
Other
None
Base: All using prescription meds (n=441)
Q47. What side effects have you experienced due to the current prescription medication you are taking?
Q48. Did your HCP ever prescribe a laxative in conjunction with your painkiller(s)?
47% of respondents worry about the side effects of pain medication (Q54)
What side effect have you experienced due to the current
prescription medication you are taking?
Constipation is the
most common side
effect of prescription
medication –
however there are
47% of patients who
are not being
prescribed laxatives
in conjunction with
their medication and
5% state that they go
and purchase them
themselves
n=441
Non prescription medication
Base: all who receive treatment (n=506)
Q.49 Are you currently taking any over the counter (OTC)/non-prescription pain medicine?
Base: all currently taking OTC medicine (n=170)
Q.50 Which OTC medicines are you currently taking?
Base: all taking OTC medicine only (n=48)
Q.51 Overall, how effective are your current non-prescription pain medicines at controlling your cancer pain?
34% of patients who are receiving treatment for cancer related pain
are currently taking non-prescription medication
CROSS REFERENCE:
72% of these patients are also taking prescription medication
20%
15%
12%
0%
5%
10%
15%
20%
25%
Paracetamol Ibuprofen Aspirin
TOP 3 OTC MEDICATION CURRENTLY TAKEN Patients who are only
taking non prescription
medication are asked
to rate the
effectiveness of their
medication – 33% of
them rated their
medication as
“Quite ineffective”
n=506
Alternative methods
14%
13%
12%
11%
11%
9%
9%
8%
8%
7%
4%
4%
3%
2%
2%
1%
1%
1%
1%
19%
32%
0% 10% 20% 30% 40%
Massage
Vitamins
Heat (heating pad)
Exercise
Acupuncture
Physical therapy
Herbal supplements
Support groups
Change in diet
Relaxation therapy
Meditation
Ointments/creams
Therapy/counselling
Alcoholic drinks
Cold (ice packs)
Alcohol rubs
Nerve stimulation or TENS
Hypnosis
Imagery
Other
I don't use any other methods
Base: all who receive treatment (n=506)
Q.52 What, if any, other methods, remedies or treatments, apart from medications have you ever tried to relieve your pain we have
been discussing?
68% of cancer patients receiving treatment for their pain use
alternative methods – the most popular are massage and vitamins
n=506
16% of respondents are not being treated for their cancer
pain
12 %
9 %
9 %
7%
4 %
3 %
3 %
1%
1%
1%
1%
1%
16 %
12 %
13 %
15%
2 2 %
0% 5% 10% 15% 20% 25%
M a na ge / l i v e wi t h t he pa i n
Not ne e de d/ no l onge r ne c e ssa r y
S i de e f f e c t s
Doc t or ne v e r of f e r e d me di c a t i on
P a i n not ba d e nough
Onl y ha s i nt e r mi t t e nt pa i n
Di sl i k e s t a k i ng me di c a t i on
Doc t or doe s not be l i e v e me di c a t i on i s ne e de d
M e di c a t i on i s i ne f f e c t i v e
Not hi ng mor e c a n be done
Doe s not ha v e a doc t or f or pa i n
Ex e r c i se he l ps
Di sl i k e goi ng t o doc t or
P a i n i s gone
No me di c a l c ov e r a ge
Too busy
Ot he r
Base: All whose pain not being treated (n=67)
Q27. Why are you not currently being treated for your pain?
Almost a quarter of patients in phase 2 report that managing to live with the pain is
the main reason for them not being treated for their pain
20% of
respondents
have had a
surgical
procedure for
their cancer pain
n=67
For 13% of patients, the pain alone associated with the
cancer forced them to stop work
26% 26%
19%
13%
4%
11%
0%
5%
10%
15%
20%
25%
30%
Having
cancer
Pain &
Treatment
Combined
Cancer
treatment
Cancer pain Tiredness Other
reason
Base: All not currently employed who were before diagnosis (n=192)
Q.10 What was the primary reason for you stopping work?
The primary reasons for stopping work were reported to be pain
and cancer treatment combined, and having cancer itself. 44% of
patients who are currently not employed have stopped working
following their diagnosis
n=192
Top of mind, 49% of patients claim they have a good quality of life, however this does
not mean that their cancer and pain they experience has not had a significant impact
on their life
Cancer patients suffering pain hold a certain degree of independence,
however...
Expectations of pain
71% believe that pain is part of “having cancer”
But
51% believe their pain stops them from thinking or concentrating
53% would spend all their money on cancer treatment if they knew it
would work
Cancer patients suffering pain hold a certain degree of independence,
however...
44% believe that pain forces them to rely too much on other people
31% agree that they are in too much pain to care for themselves and
other people
Base: All respondents (n=573)
n=573
My friends and family don’t really understand
“I am not alone in tackling my pain”
23% disagree
“My family does not understand
how pain affects my life”
29% agree
“I feel my pain affects my relationship
with my family”
41% agree
“I think people treat me differently (in a
negative way) because of my pain”
25% agree
66% feel that people don’t
understand how much pain they
are in
29% feel like they should not
discuss their pain
Although families and friends are very supportive and close to the
patients, they do not seem to comprehend the intensity of the pain
cancer patients are suffering
CROSS REFERENCE:
24% of these respondents
are never or only
occasionally asked about
their pain by their HCP
Base: All respondents (n=573)
n=573
Almost half of patients believe their cancer prevents them
from leading a normal life
67% of patients find the pain associated with cancer distressing
66% of patients consider the impact of cancer on work and social life
distressing
More than half (61%) of patients find the impact of cancer treatment
distressing
69% of patients consider the impact of cancer on family/loved ones to be
distressing
Almost half (48%) of patients are distressed by the idea of death
Cancer pain
Impact of cancer on
work & social life
Impact of cancer
treatment
Impact of cancer on
family/loved ones
Fear of death
Base: All respondents (n=573)
33% of patients feel that sometimes their pain is so bad that they feel like
they want to die
Feel they want to
die
37% of patients feel that their pain is intolerable
Pain is
intolerable
n=573
69% of respondents also report difficulty in performing activities in everyday
life (ADLs)
Difficulties in
everyday life
Appendix

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European Pain in Cancer (EPIC) Global Results Presentation

  • 1. July 2007 European Pain in Cancer (EPIC) Global Results Presentation EPIC Steering Group Presentation © 2007 Research International. No part of these materials may be used, reproduced or adapted without the prior written consent of the copyright owner. All rights reserved
  • 2. European Pain in Cancer (EPIC) survey Objectives 1. Investigate the impact of pain on cancer patients 2. Establish the prevalence of pain for patients across all cancer stages in Europe 3. Understand current treatment practices and levels of satisfaction, and identify the gaps in the existing provision of effective pain management for cancer patients across Europe 4. Explore the impact of pain on sufferers’ quality of life
  • 3.
  • 5. EPIC: Countries involved  1st phase – patients are being screened in order to obtain the prevalence of cancer related pain in cancer patients  Patients are being recruited from a wide geographical area  In each region, as many potential routes for recruitment as possible are being undertaken  Specialist pain units will not be approached to avoid bias in the data collected Finland Switzerland Israel Romania Italy France Norway Sweden Denmark Czech Republic UK Ireland
  • 6.  Respondents were recruited through a multi-modal approach to ensure as representative a spread of data as possible. Within each country, recruitment was carried out to provide a broad cross section of that country’s population.  The main methods of recruitment are the following: 1. Primary and secondary care physicians 2. Patient groups and associations 3. Advertising in national media 4. Panels of consumers  No recruitment through Pain Specialists or Palliative Care units in order to avoid bias with regard to the levels of pain experienced by respondents Recruitment Methodologies (1)
  • 7. Recruitment Methodologies (2) Primary and secondary care physicians Patient groups and associations Advertising in national media Panels of consumers UK    France    Italy  Switzerland   Romania  Czech Rep.   Israel  Finland    Denmark    Norway    Sweden     Ireland  
  • 8. Sampling and methodology plan Pilot Screening Phase 400 cancer patients (3 countries) 200 cancer patients (8 countries) 50 cancer patients (1 country)  All patients screened to ensure they experience pain (rated 5 or more on a 0 to 10 scale)  Inclusion of mix of solid tumour types (including lymphomas/ blood-borne cancers)  No stages of cancer were excluded from this survey Main Interview Stage 50 telephone interviews carried out with patients who have passed the screening phase Phase 1 Phase 2 400 cancer patients 200 cancer patients 50 cancer patients
  • 9. In this report Phase 1 target Phase 2 target Phase 1 results in this report Phase 2 results in this report UK 400 50 400 50 France 400 50 400 50 Italy 400 50 402 50 Switzerland 200 50 200 50 Romania 200 50 200 50 Czech Rep. 200 50 200 53 Israel 200 50 205 50 Finland 200 50 200 50 Denmark 200 50 200 50 Norway 200 50 200 50 Sweden 200 50 207 52 Ireland 100 50 50 15
  • 10. In this report All who complete screener and experience pain more than once a week UK 311 France 379 Italy 299 Switzerland 195 Romania 155 Czech Rep. 163 Israel 167 Finland 178 Denmark 159 Norway 177 Sweden 199 Ireland 28
  • 11. Percentage of patients reporting pain in cancer by country 71% 54% 52% 62% 52% 71% 88% 66% 61% 20% 75% 65% 56% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Czech Republic (n=282) Denmark (n=373) Finland (n=383) France (n=642) Ireland (n=96) Israel (n=287) Italy (n=457) Norway (n=302) Romania (n=327) Sweden (n=1051) Switzerland (n=267) UK (n=617) Global (n=5084)
  • 12. European Pain in Cancer (EPIC) Survey Results
  • 13. Total number of patients contacted 5084 Total number of patients screening IN Total number of patients screening OUT 2864 2220 Patients eligible for 2nd stage quant* 2410 Patients agreeing to 2nd stage quant 1226 56% 44% Phase 1: Screener survey Phase 2: In-depth interview * All who completed screener and currently experience pain more than once a week
  • 14. Total number of patients screening OUT 2220 44% 137 respondents (3%) screened out because suffering from skin cancer 1350 respondents (27%) screened out because do not suffer pain at all 426 respondents (12%) screened out because they do not currently experience pain or did not experience pain in the last month 105 respondents (3%) screened out because they experience pain approximately once a month, less often than once a month, only when active 192 respondents (6%) screened out because their level of pain is between 0-4 10 respondents screened out because linked to a pharmaceutical company or a market research firm or were involved in pain med studies S1 S4 S5 S7 S8 S11/1 2 n=4947 left in n=3597 left in n=3171 left in n=3066 left in n=2874 left in n=2864 left in
  • 15. Phase 1 Screener Survey Results
  • 16. Cancer staging – half of patients are unable to state the stage of their cancer Don't know, 50% Stage 3, 12% Stage 4, 11% Stage 1, 9% Stage 2, 12% Stage 5, 5% Metastasis, 1% Half of patients do not know at what stage their cancer is at Base: all who has specified cancer (n=4947) S2. And could you tell me what stage your cancer is at? n=4947
  • 17. Symptoms leading to diagnosis 31% 27% 11% 9% 7% 5% 5% 4% 3% 2% 2% 2% 2% 2% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 5% P a i n A l u m p C h r o n i c f a t i g u e A c h a n g e i n b l a d d e r h a b i t s U n u s u a l b l e e d i n g P e r s i s t e n t c o u g h A c h a n g e i n b o w e l h a b i t s T h i c k e n i n g o f t i s s u e R e c t a l b l e e d i n g V a g i n a l d i s c h a r g e C o u g h i n g b l o o d C o n s t a n t i n d i g e s t i o n W e i g h t l o s s P e r s i s t e n t s o r e t h r o a t T r o u b l e s w a l l o w i n g F e v e r / c o l d / f l u / p n e u m o n i a D y s p n o e a / r e s p i r a t o r y p r o b l e m s C h a n g e i n n i p p l e / b r e a s t C h a n g e i n v o i c e / h o a r s e A b d o m i n a l / a c i d r e f l u x / d i v e r t i c u l i t i s F a t i g u e / s l e e p d i s o r d e r s N a u s e a / v o m i t i n g D i z z i n e s s / v e r t i g o U r i n a r y p r o b l e m s C e p h a l e a / s i g h t O t h e r Base: all who has specified cancer (n=4947) S3. What symptoms lead you to see the doctor prior to your diagnosis of cancer? Pain is the key symptom leading to cancer diagnosis followed by a lump and chronic fatigue n=4947
  • 18. Existence of pain due to cancer Base: all screened – (individual base sizes shown on chart) S4. Have you suffered any pain due to your cancer? More than two thirds of cancer patients report pain which they attribute to their cancer 27 7 8 10 13 14 14 18 18 23 23 25 38 34 47 73 93 92 90 87 86 86 82 82 77 77 75 62 66 53 T o tal (n=4947) P ancreatic (n=142) B o ne/ muscle (n=173) B rain tumo ur (n=135) N o n-H o dgkins (n=61) Lung cancer (n=417) H ead / N eck cancer (n=213) B o wel / C o lo recto ral (n=504) T esticular (n=150) B lo o d bo rne (n=90) Gynae cancer (n=411) Lympho mas (n=102) B reast cancer (n=1427) Leukemia (n=125) P ro state (n=624) No pain Pain n=4947 More than 50% of patients with the following types of cancer currently suffer from pain:  Lung  Pancreatic  Brain Tumour  Bone/Muscle  Blood Borne  Non-Hodgkins  Head/Neck  Leukaemia From S5 - Patients currently suffering from pain
  • 19. Existence of pain due to cancer – country breakdown Base: all screened – (individual base sizes shown on chart) S4. Have you suffered any pain due to your cancer? More than two thirds of cancer patients report pain which they attribute to their cancer 27 5 9 12 15 17 21 21 23 24 36 39 57 73 95 91 88 85 83 79 79 77 76 64 61 43 T o tal (n=4947) Italy (n=457) Switzerland (n=267) Israel (n=269) C zech R epublic (n=282) N o rway (n=298) D enmark (n=337) R o mania (n=327) UK (n=608) F rance (n=642) F inland (n=353) Ireland (n=94) Sweden (n=1013) No pain Pain n=4947
  • 20. Recent experience of pain related to cancer Base: all who suffered from pain (n=3597) S5. Do you currently experience pain or have you experienced pain in the last month that is attributable to your cancer? 88% of cancer patients have experienced pain within the last month Yes - currently, 51% Yes - in last month, 37% No, 12% (n=1323) (n=425) (n=1848) n=3597 Base: all who currently experience pain or have experienced pain in the last month (n=3171) S6.How long have you suffered from pain that is directly caused by your cancer? S7. How often do you experience pain? I experience pain… % (n) At all times 16% (522) Several times a day 19% (598) Daily 22% (698) Several times a week 23% (744) Once a week 8% (256) Several times a month 8% (248) Approximately once a month 1% (44) Less than once a month 1% (18) Only when active 1% (27) Almost a third of cancer patients have been experiencing pain for more than 12 months More than half of patients experience pain at least once a day 2562 patients (81% answering at this point) are in pain at least several times a week
  • 21. All patients consider themselves to be in some level of pain Base: all who currently experience pain once a month (n=3066) S8. Thinking about the last time you experienced pain, please give me a number from 0 to 10 indicating the intensity of your pain where a “0” means “no pain at all” and a “10” means “the worst pain imaginable”. ? 0% 0% 1% 2% 3% 29% 21% 20% 14% 7% 4% 0% 5% 10% 15% 20% 25% 30% 35% 0 1 2 3 4 5 6 7 8 9 10 94% report that they experience moderate to severe pain (rated 5 - 10 on the pain scale) 4% regard their pain as ‘the worst pain imaginable’ Of those patients who scored 0- 4 on the pain scale, none stated 0 as their score. This shows that they all consider themselves to be in some level of pain, even if it is only low (n=109) (n=213) (n=418) (n=610) (n=632) (n=892) (n=80) (n=66) (n=23) (n=5) (n=0) CROSS REFERENCE: 21% of patients suffering from moderate to severe pain, experience it daily n=3066
  • 22. Level of pain per country Mean Level of pain 6.11 6.94 6.52 6.72 6.1 6.96 6.27 5.82 6.67 5.59 6.5 6.36 4 5 6 7 8 Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Swiss UK  Sweden and Norway are the countries with the lowest level of pain  Israel is the country where the intensity of pain is the highest with 63% of respondents within the 7-10 range Global mean score: 6.38 Base: all who currently experience pain once a month (n=3066) S8. Thinking about the last time you experienced pain, please give me a number from 0 to 10 indicating the intensity of your pain where a “0” means “no pain at all” and a “10” means “the worst pain imaginable”. ? n=3066
  • 23. Pain scores 75% 60% 65% 73% 86% 65% 80% 81% 66% 50% 63% 75% 20% 39% 33% 24% 14% 34% 17% 14% 30% 19% 27% 23% 0% 20% 40% 60% 80% 100% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Swiss UK Scores in the bracket 5-7 Scores in the bracket 8-10 Base: all who currently experience pain once a month (n=3066) S8. Thinking about the last time you experienced pain, please give me a number from 0 to 10 indicating the intensity of your pain where a “0” means “no pain at all” and a “10” means “the worst pain imaginable”. ? n=3066
  • 24. Almost a quarter of patients who experience moderate to severe pain (rated 5 or more) are not receiving treatment for their pain Base: all who score 5 -10 on pain scale (n=2874) S10. Are you currently receiving any treatment for your pain? I am receiving treatment for my pain, 77% I am not receiving treatment for my pain, 23% Patients who rate 5 or more in terms of pain experience CROSS REFERENCE: 19% of patients who suffer daily from moderate to severe pain, DO NOT receive treatment n=2874
  • 25. Phase 2 In-Depth Interview Survey Results
  • 26. Those completing the main survey are more likely to have breast and bowel/colorectal cancer and have a higher level of pain experienced than average All who completed 2nd stage (n=573) The sample is comprised of 35% men and 65% women 9% are aged between 18-40, 30% aged between 50-59, and 17% over the age of 70 Patients are more likely to be suffering from breast and bowel/colorectal cancer (27% and 12% respectively) All suffer from pain, most report that they are experiencing pain at the present time (75%). 51% have suffered from pain for more than 12 months On the 0-10 pain scale, average reported pain levels were 6.95 (vs overall mean of 6.38) Pain frequency is most likely to occur on a daily basis (72%) with 142 respondents (25%) stating they are constantly in pain. 82% are receiving treatment for their pain Demographics Cancer Pain
  • 27. Few patients have been referred to a pain clinic yes, 24% no, 73% Don't know 3% Base: All respondents (n=573) Q15. Have you ever been referred to see a pain management specialist or to a pain clinic about your cancer pain? 89% of those referred have received some form of treatment for their pain. Of those not referred, 81% had also received treatment % ever been referred to see a pain management specialist or a pain clinic COUNTRY COMPARISON  The countries with the highest number of patients being referred to a pain clinic are Italy and Israel with 52% and 40% respectively  UK, Ireland and France are all near to the average  Romania has the least amount being referred with only 6% of patients n=573
  • 28. HCP with main responsibility for management of cancer pain are the Oncologist and the GP HCP with main responsibility for management of cancer pain for all patients contacted (Q12) Medical Oncologist, 42% General/Family Practitioner, 19% Medical Doctor, 9% Radiation Oncologist, 1% Palliative care physician, 2% Haematologist, 4% General Surgeon, 4% Physiotherapist, 1% Other, 5% None, 3% Pain Specialist, 3% OB/GYN, 2% Neurologist, 2% Nurse/Specialist Nurse, 1% Anaesthetist, 1% Base: All respondents (n=573) n=573
  • 29. 33% of patients recall having had their pain assessed using a pain scale y e s 2 1% no 6 8 % DK/ Ca n' t r e me mbe r 11% Base: All respondents (n=573) Q18. How does your HCP assess how much pain you are in? Prompted recall Q19 Does the HCP use a pain scale? 55% 26% 5% 2% 15% 7% 0% 10% 20% 30% 40% 50% 60% I proactively tell him/her HCP examines me HCP asks me to move part of my body HCP asks me to walk HCP uses pain scale HCP does nothing However only 15% of patients mentioned use of a pain scale spontaneously Spontaneous recall n=573
  • 30. Country differences in pain scale usage – prompted and spontaneous 0% 20% 40% 60% 80% 100% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Spontaneous Prompted  Italy, Israel, France and Switzerland are the countries where most respondents acknowledged the use of a pain scale unprompted, with 44%, 28% and 20% respectively  Only when prompted, countries such as UK, Norway, Ireland, Finland and Denmark highly recalled using a pain scale for measuring their pain Base: All respondents (n=573) Q18. How does your HCP assess how much pain you are in? Q19 Does the HCP use a pain scale? n=573
  • 31. Almost a quarter of patients report that their HCP never or rarely asks them about their pain 56% 17% 4% 11% 12% 0% 10% 20% 30% 40% 50% 60% At every consultation At most but not all consultations At less than half consultations Only occasionally Never Base: All respondents (n=573) Q16. How often does the HCP who treats your cancer ask you about the pain you are experiencing? Please note, this is the physician who treats your cancer and NOT your cancer pain. Does this happen…? How often does your HCP ask you about your pain? CROSS REFERENCE: 54% of respondents that are asked about their pain by their HCP at every consultation, also proactively tell their doctor about their pain n=573
  • 32. Country comparison 46% 42% 42% 29% 4% 83% 42% 46% 62% 80% 82% 32% 74% 54% 56% 9% 26% 15% 8% 30% 25% 52% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Never/occasionally At every consultation  In Scandinavian countries most patients are rarely asked about their pain by their HCPs  In Czech Republic, Italy and Ireland most patients are asked about their pain at every consultation Base: All respondents (n=573) Q16. How often does the HCP who treats your cancer ask you about the pain you are experiencing? Please note, this is the physician who treats your cancer and NOT your cancer pain. Does this happen…? n=573
  • 34. HCP does not take into consideration their quality of life to a great extent 32% 62% 78% 50% 58% 24% 64% 32% 48% 80% 34% 27% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Global % : 50% Base: All respondents (n=573) Q24 To what extent does HCP take into consideration your quality of life? n=573
  • 35. HCP does not understand that pain is a problem 34% 9% 22% 8% 15% 8% 10% 17% 12% 2% 4% 0% 5% 10% 15% 20% 25% 30% 35% 40% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Global % : 13% n=573 Base: All respondents (n=573) Q25 My doctor understands my pain is a problem
  • 36. HCP would rather treat their cancer than their pain 54% 48% 50% 56% 37% 56% 34% 28% 33% 19% 20% 24% 0% 10% 20% 30% 40% 50% 60% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Global % : 38% n=573 Base: All respondents (n=573) Q25 My doctor would rather treat my cancer than my pain
  • 37. HCP does not have enough time to discuss pain 32% 44% 42% 34% 58% 32% 30% 28% 23% 20% 33% 7% 0% 10% 20% 30% 40% 50% 60% 70% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Global % : 33% n=573 Base: All respondents (n=573) Q25 I do not have enough time to discuss my pain with my doctor
  • 38. HCP does not know how to control their pain 62% 42% 13% 38% 37% 26% 15% 28% 13% 10% 14% 8% 0% 10% 20% 30% 40% 50% 60% 70% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Global % : 26% n=573 Base: All respondents (n=573) Q25 I think my doctor does not know how to control my pain
  • 39. HCP does not always ask them about their pain 62% 56% 50% 27% 30% 23% 26% 13% 8% 4% 12% 0% 10% 20% 30% 40% 50% 60% 70% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Global % : 27% n=573 Base: All respondents (n=573) Q25 My doctor always asks me about my pain
  • 40. Although most patients feel that their HCP shows consideration and listens to them, not all patients receive this level of care 50%* say that their HCP does not take into consideration their quality of life to a great extent (Q24) CROSS REFERENCE: 38% of these are patients whose oncologist is the main person responsible for managing their pain 33%* report that their doctor does not have enough time to discuss pain with them (Q25) CROSS REFERENCE: 40% of these are patients whose oncologist is the main person responsible for managing their pain 26%* report that their doctor does not know how to control their pain (Q25) CROSS REFERENCE: 31% of these are patients whose oncologist is the main person responsible for managing their pain 13%* feel that their doctor does not understand that pain is a problem (Q25) CROSS REFERENCE: 25% of these are patients whose oncologist is the main person responsible for managing their pain 38%* report that their doctor would rather treat their cancer rather than their pain (Q25) CROSS REFERENCE: 39% of these are patients whose oncologist is the main person responsible for managing their pain 27%* report that their doctor does not always ask them about their pain (Q25) CROSS REFERENCE: 26% of these are patients whose oncologist is the main person responsible for managing their pain *Total number of patients (573) randomly selected to participate in an in depth interview about cancer pain
  • 41. Q35. Which prescription medicines are you currently taking for the specific pain we have been discussing? Base: All using prescription meds (n=441) 46% of cancer patients using prescription medication are on strong opioids Italy, Switzerland and Sweden are the countries which make greater use of strong opioids, with 84%, 76% and 63% respectively 37% 32% 15% 46% 0% 10% 20% 30% 40% 50% Strong opioids Weak opioids Non opioids Not stated France, Romania and UK are the countries which make greater use of weak opioids, with 70%, 62% and 54% respectively n=441
  • 42. Use of strong opioids per country 40% 60% 42% 84% 76% 63% 25% 11% 34% 29% 33% 30% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Base: All using prescription meds (n=varies by country) Q 35. Which prescription medicines are you currently taking for the specific pain we have been discussing? Global % : 46%
  • 43. The initial rating of the effectiveness of prescription drugs in controlling cancer pain is good – the vast majority of respondents consider them to be effective Overall, how effective do you think your current prescription pain medicines are at controlling your cancer pain? 24% 60% 12% 2% 2% 0% 10% 20% 30% 40% 50% 60% 70% Very effective Quite effective Quite ineffective Very ineffective DK/Not sure Initially, when respondents are asked to rate the effectiveness of their prescription medication, they respond positively, however when prompted more specifically later on in the survey, more negative aspects arise Base: All using prescription meds (n=441) Q36. Overall, how effective do you think your current prescription pain medicines are at controlling your cancer pain? n=441
  • 44. However, when prompted, more than half of patients using prescribed analgesia (64%) report that there are times when their medicines are not adequate to control their pain 6% 1% 20% 32% 26% 13% 0% 5% 10% 15% 20% 25% 30% 35% All the time Every hour A few times a day A few times a week A few times a month Very rarely Base: All using prescription meds (n=441) Q 37. Are there ever times when your pain medicines are not adequate to control your pain? Base: All those whose meds do not control pain (n=281) Q 38. How often does this happen? Perceived lack of efficacy of pain management when on medication In these patients, pain occurs frequently: CROSS REFERENCE: 57% of patients who report that there are times their medicines are not adequate to control their pain, are in daily pain n=441
  • 45. Times when medicines are not adequate to control pain – across countries 41% 73% 81% 67% 47% 70% 63% 71% 49% 72% 68% 47% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Global % : 64% Base: All using prescription meds (n=441) Q 37. Are there ever times when your pain medicines are not adequate to control your pain? n=441
  • 46. The main reasons for changing medication are:  42% – Need stronger medication  29% – Pain became worse  23% - Medication did not work  16% – Did not like side effects  12% - Had a negative reaction to medication Changing medication Q31 Switching Medication 58% of patients taking prescription medication have had their medication changed More than half of respondents have had their medication changed and/or are taking more than one medication The main reasons for taking more than one medication are:  34% – Need stronger medication  23% – Pain became worse  16% - Effects of medication didn’t last long enough  10% – Current doctor’s recommendation Q33 Additional Medication 54% of patients taking prescription medication have been prescribed more than one medicine for the same pain Out of the patients who perceived their medication to be quite ineffective .. 70% of them switched medication 53% of them are taking additional medication n=441
  • 47. 63% of patients using prescription analgesia report that they are affected by breakthrough pain 5% 14% 7% 21% 7% 18% 8% 10% 8% 0% 5% 10% 15% 20% 25% A t a l l t i m e s S e v e r a l t i m e s a d a y O n c e a d a y S e v e r a l t i m e s a w e e k A p p r o x o n c e a w e e k S e v e r a l t i m e s a m o n t h A p p r o x o n c e a m o n t h L e s s t h a n o n c e a m o n t h O n l y o n a c t i v i t y Base: All who suffer from breakthrough pain (n=279) Q42. How often do you suffer from breakthrough pain? More than half of patients taking prescription medication suffer from breakthrough pain at least once a week n=279
  • 48. Breakthrough pain across countries 44% 77% 62% 82% 67% 53% 50% 87% 60% 72% 50% 73% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Czech Republic Denmark Finland France Ireland Israel Italy Norway Romania Sweden Switzerland UK Base: All using prescription meds (n=441) Q41 Do you ever suffer from breakthrough pain? Global % : 63% n=441
  • 49. Only a third of patients experiencing breakthrough pain are taking additional prescription medication to treat it 72% of respondents who experience breakthrough pain say that there are times their medicines are not adequate to control their pain However, 33% of patients experiencing breakthrough pain are being treated with additional painkillers ADDITIONAL PAINKILLERS TAKEN TO TREAT BREAKTHROUGH PAIN ARE:  35% Strong opioids  25% Weak opioids  29% Non opioids Positive rating for additional painkillers:  35% say - Very effective  49% say - Quite effective  10% say - Quite ineffective CROSS REFERENCE – Out of patients who experience breakthrough pain  45% use Strong opioids  40% use Weak opioids  35% use Non opioids n=279
  • 50. Side effects due to current prescription medication 31% 30% 19% 12% 7% 7% 5% 4% 3% 19% 32% 0% 5% 10% 15% 20% 25% 30% 35% Constipation Nausea/Vomiting Sedation Psychological effects Diarrhoea Tremor Itchy skin Breathing difficulties Urinary retention Other None Base: All using prescription meds (n=441) Q47. What side effects have you experienced due to the current prescription medication you are taking? Q48. Did your HCP ever prescribe a laxative in conjunction with your painkiller(s)? 47% of respondents worry about the side effects of pain medication (Q54) What side effect have you experienced due to the current prescription medication you are taking? Constipation is the most common side effect of prescription medication – however there are 47% of patients who are not being prescribed laxatives in conjunction with their medication and 5% state that they go and purchase them themselves n=441
  • 51. Non prescription medication Base: all who receive treatment (n=506) Q.49 Are you currently taking any over the counter (OTC)/non-prescription pain medicine? Base: all currently taking OTC medicine (n=170) Q.50 Which OTC medicines are you currently taking? Base: all taking OTC medicine only (n=48) Q.51 Overall, how effective are your current non-prescription pain medicines at controlling your cancer pain? 34% of patients who are receiving treatment for cancer related pain are currently taking non-prescription medication CROSS REFERENCE: 72% of these patients are also taking prescription medication 20% 15% 12% 0% 5% 10% 15% 20% 25% Paracetamol Ibuprofen Aspirin TOP 3 OTC MEDICATION CURRENTLY TAKEN Patients who are only taking non prescription medication are asked to rate the effectiveness of their medication – 33% of them rated their medication as “Quite ineffective” n=506
  • 52. Alternative methods 14% 13% 12% 11% 11% 9% 9% 8% 8% 7% 4% 4% 3% 2% 2% 1% 1% 1% 1% 19% 32% 0% 10% 20% 30% 40% Massage Vitamins Heat (heating pad) Exercise Acupuncture Physical therapy Herbal supplements Support groups Change in diet Relaxation therapy Meditation Ointments/creams Therapy/counselling Alcoholic drinks Cold (ice packs) Alcohol rubs Nerve stimulation or TENS Hypnosis Imagery Other I don't use any other methods Base: all who receive treatment (n=506) Q.52 What, if any, other methods, remedies or treatments, apart from medications have you ever tried to relieve your pain we have been discussing? 68% of cancer patients receiving treatment for their pain use alternative methods – the most popular are massage and vitamins n=506
  • 53. 16% of respondents are not being treated for their cancer pain 12 % 9 % 9 % 7% 4 % 3 % 3 % 1% 1% 1% 1% 1% 16 % 12 % 13 % 15% 2 2 % 0% 5% 10% 15% 20% 25% M a na ge / l i v e wi t h t he pa i n Not ne e de d/ no l onge r ne c e ssa r y S i de e f f e c t s Doc t or ne v e r of f e r e d me di c a t i on P a i n not ba d e nough Onl y ha s i nt e r mi t t e nt pa i n Di sl i k e s t a k i ng me di c a t i on Doc t or doe s not be l i e v e me di c a t i on i s ne e de d M e di c a t i on i s i ne f f e c t i v e Not hi ng mor e c a n be done Doe s not ha v e a doc t or f or pa i n Ex e r c i se he l ps Di sl i k e goi ng t o doc t or P a i n i s gone No me di c a l c ov e r a ge Too busy Ot he r Base: All whose pain not being treated (n=67) Q27. Why are you not currently being treated for your pain? Almost a quarter of patients in phase 2 report that managing to live with the pain is the main reason for them not being treated for their pain 20% of respondents have had a surgical procedure for their cancer pain n=67
  • 54. For 13% of patients, the pain alone associated with the cancer forced them to stop work 26% 26% 19% 13% 4% 11% 0% 5% 10% 15% 20% 25% 30% Having cancer Pain & Treatment Combined Cancer treatment Cancer pain Tiredness Other reason Base: All not currently employed who were before diagnosis (n=192) Q.10 What was the primary reason for you stopping work? The primary reasons for stopping work were reported to be pain and cancer treatment combined, and having cancer itself. 44% of patients who are currently not employed have stopped working following their diagnosis n=192
  • 55. Top of mind, 49% of patients claim they have a good quality of life, however this does not mean that their cancer and pain they experience has not had a significant impact on their life Cancer patients suffering pain hold a certain degree of independence, however... Expectations of pain 71% believe that pain is part of “having cancer” But 51% believe their pain stops them from thinking or concentrating 53% would spend all their money on cancer treatment if they knew it would work Cancer patients suffering pain hold a certain degree of independence, however... 44% believe that pain forces them to rely too much on other people 31% agree that they are in too much pain to care for themselves and other people Base: All respondents (n=573) n=573
  • 56. My friends and family don’t really understand “I am not alone in tackling my pain” 23% disagree “My family does not understand how pain affects my life” 29% agree “I feel my pain affects my relationship with my family” 41% agree “I think people treat me differently (in a negative way) because of my pain” 25% agree 66% feel that people don’t understand how much pain they are in 29% feel like they should not discuss their pain Although families and friends are very supportive and close to the patients, they do not seem to comprehend the intensity of the pain cancer patients are suffering CROSS REFERENCE: 24% of these respondents are never or only occasionally asked about their pain by their HCP Base: All respondents (n=573) n=573
  • 57. Almost half of patients believe their cancer prevents them from leading a normal life 67% of patients find the pain associated with cancer distressing 66% of patients consider the impact of cancer on work and social life distressing More than half (61%) of patients find the impact of cancer treatment distressing 69% of patients consider the impact of cancer on family/loved ones to be distressing Almost half (48%) of patients are distressed by the idea of death Cancer pain Impact of cancer on work & social life Impact of cancer treatment Impact of cancer on family/loved ones Fear of death Base: All respondents (n=573) 33% of patients feel that sometimes their pain is so bad that they feel like they want to die Feel they want to die 37% of patients feel that their pain is intolerable Pain is intolerable n=573 69% of respondents also report difficulty in performing activities in everyday life (ADLs) Difficulties in everyday life