Underlying factors of adherence to medication in CML and patients information needs Christel Boons
disclosure Christel Boons, MSc, researcher Dept. of Clinical Pharmacology and Pharmacy VU University Medical Center, Amsterdam, The Netherlands No conflicts of interest 2
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 is usually diagnosed in its chronic phase when treatment is very effective for most patients 3
Tyrosine Kinase Inhibitors (TKI) Long-term daily oral drug therapy Shift from a progressive fatal disease into a chronic condition Currently five TKIs available Fig. Survival with CML over time. German CML Study Group, update 2015 4
Marin D, et al. J Clin Oncol. 2010;28:2381-8 5
Objective to obtain insights into the underlying factors of medication adherence in CML and patients information needs 6
Methods Mixed-method study design Data collected between April 2013-November 2015 Patients recruited via Dutch patients association (Hematon) QUANTITATIVE DATA Questionnaire (n=61) QUALITATIVE DATA Interviews (n=13) 7
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 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% 9
Patient characteristics 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 10
The underlying factors of adherence in CML 11
Results questionnaire How often do you not take your CML medicine? (n=61) About once a month 14 patients 25% not fully adherent 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
Reason non-adherence Forgetting (n=7) Intentionally skipping (n=5) Both forgetting and intentionally skipping doses (n=3) Adherent 75% 13
Results interviews What facilitates adherence? Daily routine P9. Reminder, male, 51 y: e.g. alarm, partner, medication box 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. Benefits female, 64 outweigh y: the downsides Yes, I have turned on an alarm on my mobile phone. The time goes by and then, oh.. P8. female, it s time 57 to take y: them. Otherwise you would sit waiting, watching television, the news During and the then weekend you just I drink forget. 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. 14
What are barriers to adhere? Forgetting Unexpected events Side Effects Fasted intake 15
What are barriers to adhere? Forgetting 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. 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. 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. 16
What are barriers to adhere? 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 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. 17
What are barriers to adhere? Unexpected events 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. 18
What are barriers to adhere? 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. Fasted Intake P2. 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. 19
Non-adherence Intentional Intentionele therapieontrouw Unintentional Niet-intentionele therapieontrouw influence of social activities Wroe 2002 J Behav Med, Lehane 2009 Int J Nurs Stud, Horne 2013 Plos One 20
CML patients information needs 21
Results questionnaire 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) 69% 59% 20% 5% 3% Physician Internet Patients' association Pharmacist Nurse 22
Results questionnaire On what topics would you like to receive information regularly? (n=61) 56 patients (92%) wanted information about: 73% 64% 48% 39% 21% 18% Side effects CML TKI effect Quality of life Correct intake Medical advances 23
Results interviews 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. 24
Content 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. Source Character Topic Physician Nurse Pharmacy Internet Patients association Timely Extensive Understandable Accurate Relevant Honest Side effects Impact on life Action and usage of medication Disease CML Medical advances Peer experiences 25
Logistics Diagnosis in person, in appropriate environment One central contact Continuity of contact Accessible 26
Summary The underlying factors of adherence in CML 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) 27
Summary CML patients information needs 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. 28
Thank you! Christel Boons 1, Lorette Harbers 1, Lonneke Timmers 1, Noortje Swart 1, Jeroen Janssen 2, Harry Hendrikse 1, Jacqueline Hugtenburg 1 Departments of (1) Clinical Pharmacology and Pharmacy, and (2) Haematology, VU University Medical Center, Amsterdam, the Netherlands c.boons@vumc.nl 29