NON-ADHERENCE IN CHRONIC MYELOID
LEUKEMIA: RESULTS OF A GLOBAL SURVEY
OF 2546 CML PATIENTS IN 79 COUNTRIES
EHA Abstract S1104 - Stockholm, 16/6/2013
Giora Sharf, Verena Hoffmann, Felice Bombaci, Mina Daban, Fabio
Efficace, Joëlle Guilhot, Jana Pelouchová, Euzebiusz J. Dziwinski, Jan de
Jong , Anthony Gavin, Jan Geissler
1
CML Advocates Network:
the global network of
leukemia patient groups
Connecting 77 organisations from 61 countries
Key facts
• Public directory of CML groups
• “Social media platform” to have
CML patient advocates collaborate
• Build skills, coordinate campaigns, build
partnerships, share knowledge
Founded 2007 by 4 patient advocates
http://www.cmladvocates.net
Prior studies demonstrated non-adherence is key
problem in CML (ADAGIO 2008, Hammersmith) –
and has clear clinical impact (Bazeos 2009)
Objectives of our patient-driven study:
Understand patient behaviours associated with adherence
Help identify the ‘true’ issues behind non-adherence
Explore cultural influence and difference on adherence
Support development of physician and patient tools to
improve adherence and improve patient outcomes
Truly global research in 12 languages:
2546 CML patients from 79 countries participated
Global reach
Countries with >30
respondents
Countries with base
<30 respondents
Sample: Total of 2546 respondents
Online
2151
Paper
395
Methodology
•
Online - Recruited by patient associations online & via other methods
•
Paper & Pen (France, Germany, Italy) – Recruited by physicians at consultations
•
CML patients over 18 years old, currently taking oral medication for CML
•
Fieldwork – Started on CML World Day, 22/9 2012 – 30th January 2013
We also used the validated Morisky Adherence Scale
to classify patients into adherence levels
Questions:
Forget medication
Miss for other reason
Stopped because felt
worse
Adherence score
classifies patients
into adherence
groups:
Low: 21 %
Forget when travelling
Take yesterday?
Stop when under
control
Inconvenience
How often difficulty
remembering
Medium: 47 %
High: 33 %
F1/ base = all respondents (n=2546) Low (n=528), Medium (n=1185), High (n=833) - Please answer ‘yes’ or ‘no’ to each question based on your personal
experience with your CML medication. F2/ base = all respondents (n=2546) Low (n=528), Medium (n=1185), High (n=833) - How often do you have difficulty
remembering to take all your medications?
Use of the ©MMAS is protected by US copyright laws. Permission for use is required. A license agreement is available from: Donald E. Morisky, ScD, ScM, MSPH,
Professor, Department of Community Health Sciences, UCLA School of Public Health, 650 Charles E. Young Drive South, Los Angeles, CA 90095-1772.
The results presented are initial
descriptive findings.
In-depth analysis will follow,
including specific countries.
6
29% have missed a dose accidentally in the last month.
11% have intentionally decided to miss a dose.
Missed a dose intentionally
in last month %
Missed a dose accidentally
in last month %
+ Yes: Ser.,
USA, other
Cen. & Lat.
Am.
2
29
Yes
No
68
Don't
Know
3
average
doses
missed in
last
month
11
+Yes:
Ser.,
USA
8%
Yes
No
89
missed both
accidently
and on
purpose in
the last
month
C2a / base=all respondents (n=2546) - Patients sometimes are not able to take their medication as prescribed. In the last month, have you missed a dose accidentally or
due to circumstances that were outside of your control? C2b / n=746 How many doses did you miss in the last month? C2c / base=all respondents (n=2546) – In the last
year, have you missed a dose accidentally or due to circumstances that were outside of your control? C2b & C2cc / base=all respondents (n=2546) - How many doses did
you miss in the last month/year? C4a / base=all respondents (n=2546) - Patients sometimes make a conscious decision to miss a dose of medication. In the last month,
have you decided to miss a dose? C4b / n=2258 - In the last year, have you decided to miss a dose?
74% believe they take their CML medication exactly as
prescribed, but 19% of them missed a dose last month
Self rated adherence (rated 1-5) %
1 - Rarely take exactly as prescribed
11 3
21%
2
3
4
5 - Always take exactly as prescribed
74% - always
stick to therapy
as prescribed
+ Neth., Slov.,
Thai., It.
(paper)
BUT: 19% of those who claim to always take
medicine as prescribed, had in fact missed a
dose accidently in the last month.
 Gap between perception & reality.
C1 / base=all respondents (n=2546) - In general, to what extent do you think you are able to stick to your CML therapy schedules and dosage, as prescribed by your CML
doctor? C1 / C2a / base (n=1886) - Patients sometimes are not able to take their medication as prescribed. In the last month, have you missed a dose accidentally or due to
circumstances that were outside of your control?
USA and Serbia stand out through the proportion
missing doses, both accidentally & intentionally
Global Average
45
“Above global
average for missed
doses”
% Missed on Purpose in last year
40
35
Russian Federation
USA
Serbia
30
Argentina
Australia
25
France (Online)
Israel
India
UK
Poland
Lebanon
Venezuela
Global
20
Mexico
15
Philippines
Italy (Online)
Netherlands
Italy (Paper & Pen)
Finland
Germany (Online)
France (Paper & Pen)
Germany (Paper & Pen)
“Below global
average for missed
doses”
10
Slovenia
15
Czech Republic
Thailand
5
5
Average
25
35
45
55
65
75
85
% Missed Accidentally / Due to Circumstance in last year
C2a / base=all respondents (n=2546) - Patients sometimes are not able to take their medication as prescribed. In the last month, have you missed a dose accidentally or
due to circumstances that were outside of your control? C2c / base=all respondents (n=2546) – In the last year, have you missed a dose accidentally or due to
circumstances that were outside of your control? C4a / base=all respondents (n=2546) - Patients sometimes make a conscious decision to miss a dose of medication. In
the last month, have you decided to miss a dose? C4b / n=2258 - In the last year, have you decided to miss a dose?
Forgetting & routine interruption are primary reasons
for accidental, (gastro) SE for intentional non-adherence
Reason for missing accidentally % (n=1283)
Forgot
41
Reason for deciding to miss % (n=491)
Not feeling well
35
Reduce side effects
Interrupted routine
27
Travelling
17
Too ill
15
26
Attending special occasion
11
Wanted to socialise
10
Interfered with travel
10
Feeling down
Fell asleep
9
Ran out of medication
7
Medication not ready at
pharmacy
6
9
Dr said could miss
9
CML under control
7
Interfered with work
4
Didn't want to be reminded
Reminder failed
4
Couldn't swallow
1
Dosing schedule complicated
1
4
Feeling better
To save money
Friend/partner said could miss
2
1
Side
effects
aiming to
reduce:
Gastro
(79%)
Dermatolog
ical (17%)
Mental
(21%)
0
Whilst accidental missing is more linked to memory,
purposeful missing of doses is more related to physical symptoms
C2d / n=1283 - Which circumstances led to a missed dose of your medication? C5 / n=491 - Why did you decide to miss a dose of your medication? C6 / n=126 - Which
side effect(s) were you hoping to avoid by intentionally missing one or more doses of your medication?
In fact, those with better adherence are particularly
tied to their routines
Helpfulness of routine amongst adherence groups %
Routine helps
greatly
56
+Israel, Leb.,
Mex., USA, Ger.
(online), Italy
(paper)
69
71 L
76 L
Routine helps
moderately
Routine helps
little
23
13
13
7
3
1
6
2
21
13
13
12
13
Total
Low
Medium
High
2
1
Routine does
not help
I do not have
a routine
E1 base = all respondents (n=2546), Low (n=528), Medium (n=1185), High (n=833) In order to remember to take their medication, patients sometimes try to follow a
routine. Does having a daily routine help you remember to take your medication?
Patients in the low adherence group
are usually of lower age
Age / Gender %
Total adherence
Low
Medium
High
M, H
Younger
Male / 18-40
14
21
H
Female / 18-40
12
20
14
11
H
12
7
Older
H
Male / 41-55
18
Female / 41-55
17
15
20
19
17
L
Male / 56+
Female / 56+
20
18
10
14
18
16
L, M
19
28
L
L
19
20
A1 / base=all respondents (n=2546) Low (n=528), Medium (n=1185), High (n=833) – How old are you? A2 / base=all respondents (n=2546) Low (n=528), Medium (n=1185),
High (n=833) – What is your gender?
Imatinib seems to be linked with higher adherence,
Nilotinib more prevalent in low adherence group
(on Morisky Scale, so all motivations for non-adherence regarded!)
Current medication vs. levels of adherence %
+
Nilotinib
25
36
33
46
19
Imatinib
27
Nilotinib
Nilotinib
High
48
46
+
Medium
Low
21
Dasatinib
B3a / base-all respondents (n=2546) Low (n=528), Medium (n=1185), High (n=833) - Which medication do you take for your CML currently?
Low adherence group more likely to take their
medication 2x day or in the evening
How many times take medication % / Av.
Av.
1.3
27
Av.
1.4
M, H
35
M, Av.
H
1.3

H
H H
29
Time of day that take medication %
46
Av.
1.3
Morning
51L, M
2x a day
20
Midday
1x a day
61
68
21
21
19
L, M
76
40
49 H, M
Evening
41H
34
Total
Low
Medium
Medium
High
3x a day
69
Total
Low
45
21
4x a day
L
40
Low adherers
are also aware
that the doses
they miss most
are their
evening doses
(34%)
High
B4a / base=all respondents (n=2546) Low (n=528), Medium (n=1185), High (n=833) - How many times a day do you take your CML medication? B4b / base=all respondents
(n=2546) Low (n=528), Medium (n=1185), High (n=833) - When during the day do you usually take your CML medication?
Low adherence group worries more about QoL and long
term side effects, and is not clear about consequences
Attitudes towards CML treatment by adherence groups (top 3 box%)
0
10
20
30
40
50
60
70

My health depends on my CML medication
H, M
I have been told I need to take every dose of
my CML treatment or the treatment may not
work
80
90
100
L

I worry if I miss a dose of my CML medication
Low
H, M
I worry about the long term effects of my CML
medication
H
Having to take my CML medication worries me
H
H
My CML medication impacts my work life
H
My CML medication impacts my social life
H
My CML medication disrupts my life
It is ok to miss a few doses of my CML
medication every now and then
H
I find it difficult to swallow my CML medication
H, M
H, M
Medium
High
H, M
H, M
H, M
H, M
H, M
I find it difficult to open / close the CML
medication packages
C8 / base=all respondents (n=2546). Low (n=528), Medium (n=1185), High (n=833) When thinking about your CML medication, please indicate the extent to which you
agree with each of the following statements? (Please indicate for each item below on a scale of 1-7 where 1=strongly disagree and 7=strongly agree)
Importance of relationship
of doctors and patients
16
Adherence is strongly influenced on relationship of
CML patient with physician
High adherence group is more likely to discuss missing a dose with their physicians
Accidentally
HIGH
LOW
Intentionally
HIGH
LOW
„Yes always“
83 %
47 %
„Yes always“
85 %
48 %
High adherence group is more satisfied with info received from HCPs
& HCPs is perceived to be approachable
Info received
HIGH
LOW
HCP is approachable
HIGH
LOW
„Very satisfied“
69 %
45 %
„Very approachable“
73 %
53 %
4%
16 %
7%
14 %
„Not satisfied at all“ /
„Somewhat dissatisfied“
„Not very approachable“
Tools to drive Adherence
18
Reminders from family members & pill dispensers are
primary tools used, followed by electronic reminders
Tool Usage (%)
I would not use
I would use if available
Reminders from fam.members
44
9
Med. box/pill dispenser
43
14
E-reminders via mobiles (SMS/alarms)
Alarm clock
54
I already use
+ Under 30 yrs
43
40
19
67
10
Reminders from dr.s or nurses at apps
75
Possible future niche in mobile
applications for over ¼ of patients
Smart phone / mobile applications
60
+ Under 30 yrs
24
+ Under 30 yrs
19
10
10
+ Under 30 yrs
9
+ Under 30 yrs
26
Phone call reminders
79
12
5
Refrigerator magnet reminders
78
13
5
Email reminders
83
9
+ Under 30 yrs
+ Under 30 yrs
3
E2 base = all respondents (n=2546) Below is a list of tools that could help you to remember to take your CML medication. For each item, please indicate whether you
already use such a tool, or if you would use the tool if it were available
Conclusions &
Recommendations
20
Conclusions
Haematologists…
• should not take the patients adherence assessment for granted
• have a central role in driving adherence – what tools would help?
• should discuss impact of medication on patients lives more
(side effects & quality of life) to drive adherence
• should highlight impact of routines in taking the drug
Particular attention paid to more “at adherence risk” groups:
• Younger patients
• Longer time on treatment
• Twice daily regimen, strong side effects
There is future potential for tools to support adherence…
Priority is on change of mindset of low adherers…
…in partnership with us!
Thank you!
To the CML patients in 79 countries that participated.
To the CML patient organisations supporting the survey.
The Workgroup:
Giora Sharf, Verena Hoffmann, Felice
Bombaci, Mina Daban, Fabio Efficace,
Joëlle Guilhot, Jana Pelouchová,
Euzebiusz J. Dziwinski, Jan de Jong,
Anthony Gavin, Jan Geissler
Our Partners:
German CML Study Group – GIMEMA Italy – French FI LMC Group
22
Disclosures
Giora Sharf:
• Research support from Ariad, BMS, Novartis,
Pfizer
• Patient Advisor of Ariad, Novartis, BMS, Pfizer
23
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