Underlying factors of adherence

to medication in CML and

patients’ information needs

Christel Boons

2

disclosure

Christel Boons, MSc, researcher

Dept. of Clinical Pharmacology and Pharmacy

VU University Medical Center, Amsterdam, The Netherlands

No conflicts of interest

Chronic Myeloid Leukaemia (CML)

• is a cancer of the bone marrow and blood

• develops due to the Philadelphia chromosome and BCR-ABL gene

• is characterised by an abnormal growth of white cells

3

• is usually diagnosed in its chronic

phase when treatment is very

effective for most patients

Tyrosine Kinase Inhibitors (TKI)

• Long-term daily oral drug therapy

• Shift from a progressive fatal disease into a chronic condition

• Currently five TKIs available

4

Fig. Survival with CML over time. German CML‐Study‐Group, update 2015

5Marin D, et al. J Clin Oncol. 2010;28:2381-8

6

Objective

to obtain insights into the underlying factors of

medication adherence in CML and patients’ information needs

Methods

• Mixed-method study design

• Data collected between April 2013-November 2015

• Patients recruited via Dutch patients’ association (Hematon)

7

QUANTITATIVE

DATA

Questionnaire

(n=61)

QUALITATIVE

DATA

Interviews

(n=13)

Interviews

• Semi-structured

• Face-to-face, at the patients’ home

• Digitally recorded, transcribed verbatim and analysed using ATLAS.ti

software in accordance with thematic framework analysis

1. familiarization with the data

2. initial coding of the data

3. codes were combined and sorted into potential themes

4. data and themes were reviewed and refined

8

Patient characteristics

9

N = 61

Age, years (mean±SD) 53.9 ± 11.7

Gender

male 43%

female 57%

Hospital

academic 53%

peripheral 47%

Years since diagnosis (mean±SD) 6.2 ± 3.8

1 – 4 37%

5 – 9 45%

≥10 18%

TKI

imatinib 53%

dasatinib 16%

nilotinib 31%

Line of treatment

first-line 54%

≥ second-line 46%

Patient characteristics

10

Patient

(n = 13)

Age

(years)

Year of

diagnosis

TKI * Living status

P1: Female 27 2012 I, D, N, I Single, no children

P2: Female 64 2004 I, D, N Married, 2 children

P3: Male 54 2007 I, D Married, 3 children

P4: Female 42 2011 I, D, N Living together, 4 children

P5: Female 58 2007 I, D, N Married, 1 child

P6: Male 62 2007 I, D, N Married, 1 child

P7: Male 28 2009 I, N Single, no children

P8: Female 57 2004 I Married, 3 children

P9: Male 51 2009 I Married, 2 children

P10: Female 41 2003 I Married, 1 child

P11: Male 56 2002 I Married, 2 children

P12: Female 73 2006 I, N, D, B Married, 3 children

P13: Female 49 2005 I, D, N Married, no children

* I: Imatinib D: Dasatinib N: Nilotinib B: Bosutinib

The underlying factors of adherence in CML

11

• How often do you not take your CML medicine? (n=61)

About once a month – 14 patients

About twice a month – 1 patients

– Do you discuss the missed intake with your physican or nurse? (n=15)

Yes – 7 patients

No – 3 patients

As it comes to matter – 5 patients

– Do you have concerns about the missed intake? (n=15)

Not at all – 9 patients

Somewhat – 6 patients

12

25% not fully adherent

Results questionnaire

13

Forgetting (n=7)

Intentionally skipping (n=5)

Both forgetting and intentionally

skipping doses (n=3)

Adherent 75%

Reason non-adherence

Results interviews

What facilitates adherence?

• Daily routine

• Reminder, e.g. alarm, partner, medication box

• Benefits outweigh the downsides

14

P9. male, 51 y:

“It’s a kind of ritual in the evening. Brush your teeth, take of your glasses, and.. well,

take your pill. Yes, it has become a ritual. I hardly ever forget them.” P2. female, 64 y:

“Yes, I have turned on an alarm on my mobile phone. The time goes by and then,

oh.. it’s time to take them. Otherwise you would sit waiting, watching television, the

news and then you just forget.”P8. female, 57 y:

“During the weekend I drink two glasses of wine during dinner. I can’t drink more,

because otherwise I will suffer from diarrhea. But, weighing against not being around

anymore.. well, then I’d rather take the pills.”

What are barriers to adhere?

Forgetting

15

Side Effects

Unexpected events

Fasted intake

What are barriers to adhere?

Forgetting

16

P5. female, 42 y:

“When I took the 800mg, I had to take two [pills] in the morning and two [pills]

in the evening. Well, of course I forgot dosages.”

P9. male, 51 y:

“A party is dangerous. … A party with a few drinks, so you get home tired.

You’re not always aware of.. Well, often you lie in your bed and then you

think, ‘he, I have forgotten something’.”

P5. female, 42 y:

“Once, when I was very ill, I had fallen asleep early and the next day I felt

better and I realized I didn’t take my pills.”

What are barriers to adhere?

17

Side Effects

P5. female, 42 y:

“Sometimes I just think, well, tomorrow I have got something, mostly something with

the kids, and I think, if I had just a little bit more energy, and then I do not take the

pill, or [I take] a reduced dose.”

P4. female, 58 y:

“In the beginning of October, I stopped for one week, because my

muscle aches were so bad, I could not turn my head anymore. So I

could not drive anymore. And at some point I had trouble climbing the

stairs, because of the pain in my joints and my muscles “ ...

"Not discussed. Hey, because I was so tired, I thought, if this is how

my holiday would be”

What are barriers to adhere?

18

P3. male, 54 y:

“if we go out for dinner with colleagues for example. I always take my

medication in the evening during dinner, so if I go to work and we will

stay for dinner in the evening, I sometimes think 'oh I have no

medication' and in case I remember I will take [my medication] in the

evening when I arrive home. Sometimes I notice [the missed intake]

the next day.”

Unexpected events

What are barriers to adhere?

19

Fasted IntakeP2. female, 64 y:

“It was my birthday and I had stopped eating and drinking at 6

o’clock, so I could take my medication at 8 o’clock, and uhm, I also

got my medication but then left [the medication]. At 9 o’clock I started

eating a cracker and then I noticed the medication.”

P2. female, 64 y:

“It is difficult, with the food. Because if we go out for dinner, then it's

‘what time do we eat?‘. Because otherwise we cannot join [for dinner].

… because I also do not want to take my medication at 10 o'clock in

the evening if I already ate at 7pm.”

20

Niet-intentionele therapie-

ontrouw

Intentionele therapie-

ontrouw

Intentional Unintentional

Non-adherence

Wroe 2002 J Behav Med, Lehane 2009

Int J Nurs Stud, Horne 2013 Plos One

influence of social activities

CML patients’ information needs

21

• Are you satisfied with the information received about your CML medicine? (n=61)

No – 8 patients (13%)

Yes – 53 patients (87%)

• Do you feel sufficiently informed about the use of your CML medicine? (n=61)

No – 7 patients (12%)

Yes– 54 patients (88%)

• Where do you get most of your information? (n=61)

22

Results questionnaire

69%59%

20%

5% 3%

Physician Internet Patients' association Pharmacist Nurse

• On what topics would you like to receive information regularly? (n=61)

– 56 patients (92%) wanted information about:

23

Results questionnaire

73%64%

48%39%

21% 18%

Side effects CML TKI effect Quality of life Correctintake

Medicaladvances

Results interviews

24

• HCPs’ attitude

• Taking seriously, not playing down

• Taking responsibility

• Approachable

• Supportive

P1. female, 27 y:

“Yes, I have realized that in particular regarding the emotional aspect

you should not expect too much or actually nothing from your

haematologist. … That is what I sometimes regret. They do not really

sympathize with you, well yes with the side effects and the situation,

but ehm, they are really pragmatic.”

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• Content

Source

• Physician

• Nurse

• Pharmacy

• Internet

• Patients’ association

Character

• Timely

• Extensive

• Understandable

• Accurate

• Relevant

• Honest

Topic

• Side effects

• Impact on life

• Action and usageof medication

• Disease CML

• Medical advances

• Peer experiences

P1. female, 27 y:

“But [information] on the medication I did not receive any instructions

at all, nothing. ... No, no, also nothing on uh, what can be side effects,

nothing at all, no. That's what I had to read in the medication leaflet.”

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• Logistics

• Diagnosis in person, in appropriate environment

• One central contact

• Continuity of contact

• Accessible

The underlying factors of adherence in CML

27

Summary

• A considerable part of CML patients was not fully adherent

• Social activities induced the non-adherence

– disturbing daily routines (unintentional non-adherence, like

forgetting)

– the wish to mitigate side-effects to obtain a better physical

condition (intentional non-adherence)

Summary

CML patients’ information needs

28

• Patients indicated a need for a more supportive attitude from

their healthcare provider and a wish for extensive and

understandable information provided timely on all aspects of

CML, in particular on side-effects.

Christel Boons1, Lorette Harbers1, Lonneke Timmers1, Noortje Swart1, Jeroen Janssen2,

Harry Hendrikse1, Jacqueline Hugtenburg1

Departments of (1) Clinical Pharmacology and Pharmacy, and (2) Haematology,

VU University Medical Center, Amsterdam, the Netherlands

c.boons@vumc.nl

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Thank you !