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Non-adherence In Chronic Myeloid Leukemia: Results Of A Global Survey Of 2546 Cml Patients In 79 Countries
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Non-adherence In Chronic Myeloid Leukemia: Results Of A Global Survey Of 2546 Cml Patients In 79 Countries

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NON-ADHERENCE IN CHRONIC MYELOID LEUKEMIA: RESULTS OF A GLOBAL SURVEY OF 2546 CML PATIENTS IN 79 COUNTRIES: ...

NON-ADHERENCE IN CHRONIC MYELOID LEUKEMIA: RESULTS OF A GLOBAL SURVEY OF 2546 CML PATIENTS IN 79 COUNTRIES:

Giora Sharf, Verena Hoffmann, Felice Bombaci, Mina Daban, Fabio Efficace, Joëlle Guilhot, Jana Pelouchová, Euzebiusz J. Dziwinski, Jan de Jong , Anthony Gavin, Jan Geissler

EHA Abstract S1104 - Presented in the session "08. CML - Clinical" by Giora Sharf, CML Advocates Network, at the European Hematology Association (EHA) Congress 18 in Stockholm, 16/6/2013

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  • 1. 1NON-ADHERENCE IN CHRONIC MYELOIDLEUKEMIA: RESULTS OF A GLOBAL SURVEYOF 2546 CML PATIENTS IN 79 COUNTRIESEHA Abstract S1104 - Stockholm, 16/6/2013Giora Sharf, Verena Hoffmann, Felice Bombaci, Mina Daban, FabioEfficace, Joëlle Guilhot, Jana Pelouchová, Euzebiusz J. Dziwinski, Jan deJong , Anthony Gavin, Jan Geissler
  • 2. CML Advocates Network:the global network ofleukemia patient groupshttp://www.cmladvocates.netConnecting 77 organisations from 61 countriesKey facts• Public directory of CML groups• “Social media platform” to haveCML patient advocates collaborate• Build skills, coordinate campaigns, build partnerships,share knowledgeFounded 2007 by 4 patient advocates
  • 3. Prior studies demonstrated non-adherence is keyproblem in CML (ADAGIO 2008, Hammersmith) –and has clear clinical impact (Bazeos 2009)Objectives of our patient-driven study:Understand patient behaviours associated with adherenceHelp identify the „true‟ issues behind non-adherenceExplore cultural influence and difference on adherenceSupport development of physician and patient tools to improveadherence and improve patient outcomes
  • 4. Truly global research in 12 languages:2546 CML patients from 79 countries participatedSample: Total of 2546 respondentsGlobal reachMethodology• 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 20132151395PaperOnlineCountries with >30respondentsCountries with base <30respondents
  • 5. We also used the validated Morisky Adherence Scaleto classify patients into adherence levelsQuestions:Forget medicationMiss for other reasonStopped because feltworseForget when travellingTake yesterday?Stop when undercontrolInconvenienceHow often difficultyrememberingLow: 21 %Medium: 47 %High: 33 %Adherence scoreclassifies patients intoadherence groups: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 yourCML 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 yourmedications?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.
  • 6. 6The results presented are initialdescriptive findings.In-depth analysis will follow,including specific countries.
  • 7. 29% have missed a dose accidentally in the last month.11% have intentionally decided to miss a dose.29682YesNoDont KnowMissed a dose accidentally inlast month %3averagedosesmissed inlastmonth1189YesNoMissed a dose intentionallyin 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 tocircumstances 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 adose 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 thelast year, have you decided to miss a dose?8%missed bothaccidentlyand onpurpose inthe lastmonth+ Yes:Ser., USA, other Cen. &Lat. Am.+Yes:Ser.,USA
  • 8. 11 3 21%74% - alwaysstick to therapyas prescribed1 - Rarely take exactly as prescribed 2 3 4 5 - Always take exactly as prescribed74% believe they take their CML medication exactly asprescribed, but 19% of them missed a dose last monthSelf rated adherence (rated 1-5) %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 outsideof your control?+Neth., Slov., Thai., It. (paper)BUT: 19% of those who claim to always takemedicine as prescribed, had in fact missed adose accidently in the last month. Gap between perception & reality.
  • 9. SerbiaUSALebanonVenezuelaPolandRussian FederationAustraliaFrance (Online)ArgentinaUKFrance (Paper & Pen)PhilippinesCzech RepublicIndiaItaly (Online)Italy (Paper & Pen)FinlandIsraelNetherlandsThailandMexicoSloveniaGermany (Online)Germany (Paper & Pen)510152025303540455 15 25 35 45 55 65 75 85USA and Serbia stand out through the proportionmissing doses, both accidentally & intentionally%MissedonPurposeinlastyear% Missed Accidentally / Due to Circumstance in last year“Above globalaverage for misseddoses”Global AverageGlobal Average“Below globalaverage for misseddoses”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 tocircumstances 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 outsideof 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?
  • 10. Forgetting & routine interruption are primary reasonsfor accidental, (gastro) SE for intentional non-adherence11467915172741Dosing schedule complicatedCouldnt swallowReminder failedMedication not ready atpharmacyRan out of medicationFell asleepToo illTravellingInterrupted routineForgotReason for missing accidentally % (n=1283)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) wereyou hoping to avoid by intentionally missing one or more doses of your medication?012447991010112635Friend/partner said could missTo save moneyFeeling betterDidnt want to be remindedInterfered with workCML under controlDr said could missFeeling downInterfered with travelWanted to socialiseAttending special occasionReduce side effectsNot feeling wellReason for deciding to miss % (n=491)Sideeffectsaiming toreduce:Gastro(79%)Dermatological (17%)Mental(21%)Whilst accidental missing is more linked to memory,purposeful missing of doses is more related to physical symptoms
  • 11. 13 13 12 131 2 1 136221323137695671 76Total Low Medium HighRoutine helpsgreatlyRoutine helpsmoderatelyRoutine helpslittleRoutine doesnot helpI do not have aroutineIn fact, those with better adherence are particularlytied to their routinesHelpfulness of routine amongst adherence groups %+Israel, Leb., Mex.,USA, Ger.(online), Italy(paper)LLE1 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 adaily routine help you remember to take your medication?
  • 12. Patients in the low adherence groupare usually of lower age14121817201821201520101414121917191911718162820Male / 18-40Female / 18-40Male / 41-55Female / 41-55Male / 56+Female / 56+Age / Gender %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?Total adherence HighMediumLowM, H H HHLLL, MLYoungerOlder
  • 13. Imatinib seems to be linked with higheradherence, Nilotinib more prevalent in lowadherence group(on Morisky Scale, so all motivations for non-adherence regarded!)B3a / base-all respondents (n=2546) Low (n=528), Medium (n=1185), High (n=833) - Which medication do you take for your CML currently?192721464846362533Imatinib Nilotinib DasatinibHighMediumLowCurrent medication vs. levels of adherence %+Nilotinib+Nilotinib
  • 14. Low adherence group more likely to take theirmedication 2x day or in the eveningTime of day that take medication %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?341951412145492140402046EveningMiddayMorningTotalLowMediumHighLow adherersare also awarethat the dosesthey miss mostare their eveningdoses (34%)How many times take medication % / Av.6961687627352921Total Low Medium High4x a day3x a day2x a day1x a dayAv.1.3Av.1.3Av.1.4Av.1.3M,HHM, H HL, MLL, MH, MHH
  • 15. My health depends on my CML medicationI have been told I need to take every dose ofmy CML treatment or the treatment may notworkI worry if I miss a dose of my CML medicationI worry about the long term effects of my CMLmedicationHaving to take my CML medication worries meMy CML medication impacts my work lifeMy CML medication impacts my social lifeMy CML medication disrupts my lifeIt is ok to miss a few doses of my CMLmedication every now and thenI find it difficult to swallow my CML medicationI find it difficult to open / close the CMLmedication packagesLow adherence group worries more about QoL and longterm side effects, and is not clear about consequences0 10 20 30 40 50 60 70 80 90 100LowMediumHighAttitudes towards CML treatment by adherence groups (top 3 box%)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 ofthe following statements? (Please indicate for each item below on a scale of 1-7 where 1=strongly disagree and 7=strongly agree)H, MH, MH, MH, MH, MH, MH, MHH, MLH, MHHHHH
  • 16. 16Importance of relationshipof doctors and patients
  • 17. Adherence is strongly influenced on relationship ofCML patient with physicianHigh adherence group is more likely to discuss missing a dose with their physiciansHigh adherence group is more satisfied with info received from HCPs& HCPs is perceived to be approachableAccidentally HIGH LOW„Yes always“ 83 % 47 %Intentionally HIGH LOW„Yes always“ 85 % 48 %Info received HIGH LOW„Very satisfied“ 69 % 45 %„Not satisfied at all“ /„Somewhat dissatisfied“4 % 16 %HCP is approachable HIGH LOW„Very approachable“ 73 % 53 %„Not very approachable“ 7 % 14 %
  • 18. 18Tools to drive Adherence
  • 19. Reminders from family members & pill dispensers areprimary tools used, followed by electronic remindersTool Usage (%)444354677560797883914191010261213943402419109553Reminders from fam.membersMed. box/pill dispenserE-reminders via mobiles (SMS/alarms)Alarm clockReminders from dr.s or nurses at appsSmart phone / mobile applicationsPhone call remindersRefrigerator magnet remindersEmail remindersI would not use I would use if available I already usePossible future niche in mobileapplications for over ¼ of patientsE2 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 atool, or if you would use the tool if it were available+ Under 30 yrs+ Under 30 yrs+ Under 30 yrs+ Under 30 yrs+ Under 30 yrs+ Under 30 yrs+ Under 30 yrs
  • 20. 20Conclusions &Recommendations
  • 21. ConclusionsHaematologists…• 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 drugParticular attention paid to more “at adherence risk” groups:• Younger patients• Longer time on treatment• Twice daily regimen, strong side effectsThere is future potential for tools to support adherence…Priority is on change of mindset of low adherers……in partnership with us!
  • 22. 22Thank you!To the CML patients in 79 countries that participated.To the CML patient organisations supporting the survey.The Workgroup:Giora Sharf, Verena Hoffmann, FeliceBombaci, Mina Daban, Fabio Efficace,Joëlle Guilhot, Jana Pelouchová,Euzebiusz J. Dziwinski, Jan de Jong,Anthony Gavin, Jan GeisslerOur Partners:German CML Study Group – GIMEMA Italy – French FI LMC Group
  • 23. 23DisclosuresGiora Sharf:• Research support fromAriad, BMS, Novartis, Pfizer• Patient Advisor of Ariad, Novartis, BMS, Pfizer