European Hematology Association Annual Congress 2011: Patient Advocacy Session on "Adherence:Are You Sure your Patients Are taking Their Medicines?", presented by Giora Sharf, Co-founder, CML Advocates Network
European Hematology Association Annual Congress 2011: Patient Advocacy Session Adherence: Are You Sure your Patients Are taking Their medicines? Giora Sharf Co-founder, CML Advocates Network Director, Israeli CML Patients Organization http://www.cmladvocates.net
Topics of my talk1. Mechanisms driving non-adherence.2. What can patient groups do to improve adherence.3. Results of our Adherence Pilot Survey.
Mechanism 1: Lack of awarenessabout consequences Patients dont understand the Long Term Adherence to Imatinib Alex Bazeos et al, ASH 2009 dangers of lack of adherence. Physicians… • often do not dedicate time to adherence • need to ask patients how they are coping with medication • need to consider that self-reported adherence is lower in reality
Mechanism 2: Saving the day (orweekend) from side effects Spiral of "I am just doing fine", so "I dont want to spoil my day with feeling unwell" "Nausea / fasting reminds me of having CML – every day" Drug holidays to have a great weekend
Mechanism 3: Familiarization.From the rollercoaster to normal life CML Adherence (ADAGIO study 2009)After diagnosis Return to Doing "too well"…? normal life
Mechanism 4:Forgetfulness and poor packaging Patient sometimes cant remember whether he has taken the pill… Consider packaging; blisters and bottles
Mechanism 5:Changing routine may be difficult Switching medication in CML carries a risk of non-adherence • Twice daily once daily • Eating fasting 5am 6am 7am 8am+ 8am 9am 10am 11am 12noon Take with FOOD FAST FAST Might work well in the first weeks, but then…
What can patients groups do? Education! Patients and caregivers & Drs & Nurses Develop & promote adherence tools and routine with clinicians and industry Advocate for better packaging
Our action:International CML Patients Survey Pilot survey on CML adherence was launched in April 2011. 8 countries, 8 languages, 150 responses Designed & conducted by 8 CML advocates from 8 European countries and 3 CML experts, with BMS facilitation of the survey pilot phase Goals: 1. To asses the extent of the issue, as reported by patients to patients. 2. To identify effective tools that will be helpful for patients to cope with adherence. 3. To evaluate cultural impact on adherence.
Demographics: age and gender balance Age group 25 21 21 19 20 17 15 15 percent10 Gender 5 60 3 3 54 46 0 20-29 30-39 40-49 50-59 60-69 70-89 Missing 40 Age group percent 20 0 Male Female What is your gender?
As expected, most surveyedpatients were in chronic CML phase CML phase 100 96 80 60 percent 40 20 1 3 0 Chronic phase Accelerated phase I dont know What phase of CML are you in?
As expected, most surveyed CMLpatients are on imatinib Name of CML medication 80 72 60 percent 40 26 20 1 1 0 imatinib 2nd gen TKI investigational TKI TKI combo Which medication do you currently take for CML?
Adherence – missed dose versusself-reported Non-adherence by country Missed dose and Adherence by Country 36 10 15 20 25 30 35 33 32 28 29 28 percent 21 21 21 20 19 18 17 8 5 0 c s y d e el ly li nd an lan nc ub Ita a Isr rla rm Fra p Po Re t he Ge h Ne ec Cz Missed dose (any reason) Self-reported Adherence
Forgetting doses is more commonin 1st generation TKI in CML Accidentally missed dose by Medication 25 24 20 15 percent 10 5 0 15 KI nib nT ati ge im d 2n
Contrast: Intentional non-adherencemore common in 2nd gen TKI in CML Intentionally missed dose by Medication 25 21 20 percent 10 15 7 5 0 KI nib T ati en im dg 2n
Adherence reminders 21.5% of patients missed a medication dose accidentally • Of these, the vast majority (87.5%) said that they just forgot to take the medication But: Most patients don’t like reminders: • 92% won’t use email reminders • 83% won’t use phone call reminders • 76% won’t use alarm or mobile phone reminders.■ Patients don’t want to be reminded on daily basis that they are sick!
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. Survey: Non-adherence mechanisms vary largely • by intention or "accident" • by the drug (2nd vs. 1st generation TKI on CML) • by country Our future plan: Extensive international survey in 2011
Return to adherenceis a team work Patients can’t solve their non- adherence alone! Adherence is team work: 1) Patients 2) Patients advocates 3) Physicians 4) Nurses 5) Psyco-oncologists 6) Pharmacists Patient groups and MDs are partners working for the same cause!