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Non-adherence of CML patients - Results of the global survey of the CML Advocates Network (Giora Sharf)
 

Non-adherence of CML patients - Results of the global survey of the CML Advocates Network (Giora Sharf)

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"Non-adherence of CML patients - Results of the global survey of the CML Advocates Network ", presented by Giora Sharf , Co-founder, CML Advocates Network and Director, Israeli CML Patients’ ...

"Non-adherence of CML patients - Results of the global survey of the CML Advocates Network ", presented by Giora Sharf , Co-founder, CML Advocates Network and Director, Israeli CML Patients’ Organization, for the International CML Foundations' "Virtual Education Program"

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    Non-adherence of CML patients - Results of the global survey of the CML Advocates Network (Giora Sharf) Non-adherence of CML patients - Results of the global survey of the CML Advocates Network (Giora Sharf) Presentation Transcript

    • Non-adherence of CML patients Results of the global survey of the CML Advocates Network Giora Sharf Co-founder, CML Advocates Network Director, Israeli CML Patients’ Organization
    •  What we will cover » The story so far Influencers of Adherence Demographics & Treatment 2 Adherence Levels Beliefs & Motivation Strategies for Adherence Confidential & Proprietary. Not For Public Distribution. Do Not Copy.
    • CML Advocates Network: global network of leukemia patient groups      Public directory of Chronic Myeloid Leukemia groups “Social media platform” to have advocates collaborate Build skills, coordinate campaigns, build partnerships, share knowledge Founded 2007 by 4 advocates 82 patient organisations in 64 countries http://www.cmladvocates.net
    • CML has turned from a fatal disease into a chronic disease in the last 15 years  15 years ago, surviving 5 years had a chance of 50:50  Today, when treated according to guidelines and high adherence, survival is close to general population  Side effects are still a problem  Psycho-oncology services often not offered  The lion is in the cage, but adherence is a serious issue
    • Where we are now TKIs have revolutionised CML treatment so people can live longer However, nonadherence is a key issue in CML There is a clear link between adherence and survival rates Long Term Adherence to Imatinib Alex Bazeos et al, ASH 2009 • The launch of imatinib, a BCR-ABL kinase inhibitor, transformed the treatment of CML, and indeed the face of oncology as a whole • 2nd generation products, nilotinib and dasatinib, are designed to manage instances of imatinib resistance • Adherence is a complex and multifactorial issue, especially in medical conditions that require long-term therapy such as chronic phase CML • A combination of internal and external factors may lead to reduced patient adherence to longterm therapies • Both the HAMMERSMITH study and the ADAGIO study highlighted the importance of patient compliance in regards to achieving optimal treatment response • Missing more than 23 daily doses each month can negatively impact response
    • Prior studies demonstrated non-adherence is key problem in CML – and has clinical impact (ADAGIO 2008, / Bazeos 2009) We aimed to replace “gut feeling” by solid data to better understand the problem: Understand patient behaviours associated with adherence And 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
    • Our research was truly global: 12 languages, 2546 CML patients from 79 countries 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 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 % Forgot when travelling Taken yesterday? Stop when under control Medium: 47 % Inconvenience How often having difficulty to remember High: 33 %
    • Adherence levels
    • USA and Serbia stand out through the proportion missing doses, both accidentally & intentionally Global Average % Missed on Purpose in last year “Above global average for missed doses” Russian Federation USA Serbia Argentina Australia Israel India Mexico France (Online) Lebanon Venezuela UK Poland Philippines Italy (Online) Netherlands Italy (Paper & Pen) Germany (Paper & Pen) Finland Germany (Online) France (Paper & Pen) “Below global average for missed doses” Slovenia Czech Republic Thailand % Missed Accidentally / Due to Circumstance in last year Global Average
    • Slovenia stands out as the most adherent country via the Morisky scale Adherence by Market - Proportion Classified as High % + N.B. Higher sample size = more likelihood of a sig. diff. 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?
    • Venezuela & Australia have the lowest proportion of adherent patients according to the Morisky scale Adherence by Market - Proportion Classified as High % N.B. Higher sample size = more likelihood of a sig. diff. _ _ 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?
    • 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. 3 average doses missed in last month +Yes: Ser., USA 8% 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 accidental ly 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 dos e? 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) % + 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.
    • Patients in the low adherence group are usually of lower age Age / Gender % Total adherence Low Medium High M, H Younger - Male / H - H Female / H - Female / Older - Male / L L, M L L Male / Female / 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 is more prevalent in the low adherence group (based on Morisky Scale, so different motivations for non-adherence regarded!) Current Medication % Imatinib Nilotinib Dasatinib Other + don’t know B3a / base-all respondents (n=2546) Low (n=528), Medium (n=1185), High (n=833) - Which medication do you take for your CML currently? B3a/B6 / base=all respondents (n=2546) - Which medication do you take for your CML currently? What CML treatments, if any, did you have before you began to take the one you are currently taking?
    • Nilotinib has fewer high adherers than the other two therapies Current Medication vs. Levels of Adherence % + Nilotonib + Nilotonib B3a / base-all respondents (n=2546) Low (n=528), Medium (n=1185), High (n=833) - Which medication do you take for your CML currently?
    • Those with low adherence are more likely to take their medication 2x/day & do so in the evening How many times take medication % / Av. Av. 1.3 Av. M, Av.  1.4 H 1.3 H M, H Time of day that take medication % Av. 1.3 H H L L, M L, M H, M H Low adherers are also aware that the doses they miss most are their evening doses (34%) 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?
    • Forgetting & routine interruption primary reasons for accidental, side effects for intentional nonadherence Reason for missing accidentally % (n=1283) Reason for deciding to miss % (n=491) 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?
    • 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%) 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 L  I worry if I miss a dose of my CML medication 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 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)
    • Joint responsibility: Adherence is strongly influenced by doctor-patient relationship 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“
    • So what can we do to drive adherence?
    • What can patients groups do?  Improve communication on adherence between patients and physicians  Raise the profile of adherence issues in the community - patient information, meetings, doctors, relatives, industry!  Support with routines, provide reminders.
    • Reminders from family members & pill dispensers are primary tools used, followed by electronic reminders Tool Usage (%) Possible future niche in mobile applications for over ¼ of patients 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
    • In fact, those with better adherence are particularly tied to their routines Helpfulness of routines amongst adherence groups % +Israel, Leb., Mex., USA, Ger. (online), Italy (paper) L L 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?
    • Conclusion  Patients do not want to be patients. Daily drug taking reminds them that they are sick.  "This is cancer! Of course my patient is taking his medicine" is mostly a misled assumption.  There are “at risk” groups like younger patients, longer time on treatment, taking the drug twice a day that need special attention.  There are intentional and non-intentional mechanisms of non-adherence. Physicians and patient groups need to address them jointly.  More information on this study: www.cmladvocates.net/adherence
    • 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
    • More information about this study: www.cmladvocates.net/adherence Giora Sharf Israeli CML Patients Organization CML Advocates Network giora@cmladvocates.net