EHA 17

Addressing the problem of adherence to treatment

Giora Sharf – Israeli CML Patients Support Group

http://ecancer.org/tv/conference/147/1501

Giora, you are representing patients, well first of all patients in Israel and also internationally. Can you tell me first of all how the Israeli CML Patients’ Organisation is going? What’s been happening recently?

The Israeli Patient Organisation is growing every year; we started eleven years ago with seven members, we have now 250 members. We have a lot of meetings; we just had last weekend our National Annual Meeting with 200 patients and care-givers, the whole of CML Awareness Weekend.

What do you feel the patients have contributed to the landscape of chronic myeloid leukaemia treatment?

Well the patients have participated in clinical trials. I myself participated in the first phase III clinical trial for imatinib, and of course we helped the doctors develop the new TKI treatments which helped save our lives.

I know you’ve been conducting a new project, you’ve had a pilot project on adherence. What’s happening there, because I know you’ve got an international one brewing? Tell me all about it.

OK, after finishing the pilots over the last year we decided to launch the full survey, the full survey is now being approved; we are going to have it in twelve languages. We estimate that it will receive 3,000 patients and so it is going to be both on line and also in two countries hard copy.

Why is adherence an issue?

Adherence is an issue because it’s has been proved that patients, about 25-30% of the patients, are not taking the drugs like their doctors are giving it to them and there was a proved direct connection, relation, between non-adherence and the results of the treatment.

Now, intuitively, if a patient feels well there is a tendency to not want to take the medicine. Now there’s a patient’s wisdom there and the doctor’s wisdom, what actually is going wrong?

Well it’s not only when a patient feels well, that’s one side of the coin, but it can be the opposite side of the coin when a patient doesn’t feel well, when he has a lot of side effects. So then he tends also not to take the drug because he thinks that if he doesn’t take the drug then he will feel better. So there is non-intentional non-adherence and there is intentional non-adherence and this is the two types of non-adherence.

Now in your pilot survey you’ve been asking questions and in the international one you’re asking questions in twelve different languages, what are the questions that you are asking?

Well we are trying to find out the reasons, what are the different reasons that patients are not taking the drugs that they are supposed to, and we are trying to identify what kind of tools will be helpful for patients to be more adherent to the treatment that they are supposed to take. So these are the two, and also we would like to explore the influence of different cultures, different countries, because in the pilot survey we saw there was a big difference between the rate of non-adherence in different countries.

Right, now in the pilot survey what sorts of answers did you get? First of all, what is the biggest cause of non-adherence?

The biggest cause was forgetfulness, for the non-intentional non-adherence the forgetfulness was almost 90% of the patients that did not take the drug on a daily basis because they just simply forget, so we are trying to develop some tools which will help patients be more adherent and not forget to take the drug.

And you talked about being too ill or not being ill enough, are they issues as well?

Yes, of course. Patients tend to take vacations from the drug because when they go on holidays, for example, when they have a celebration, when they have a weekend so they tend to stop the drug and they are not aware always that if you take less than 90% of the doses that you are supposed to take you have one fourth of the chance to achieve an MMR which is a response level that doctors are today aiming for the patients to reach.

Now when you’ve got the results from your international survey what will you be doing with them and how much do you think it will contribute to treatment of chronic myeloid leukaemia?

We will aim to publish it both to doctors, to nurses and to the patients themselves because we think that even though the topic of adherence has been on the table in the last couple of years, still not all doctors are aware about how serious the problem is and they don’t address, for different reasons they don’t address it individually with each patient when they have an appointment with them. So we would like to have the doctors understand it, in some countries nurses are involved in treatment and we like to explain it to them also, maybe have training courses for nurses also, and of course through our 68 CML patient organisations in 52 countries we will distribute all the information and make sure that all the patient organisations will use the data to educate the patients.

OK so, finally, what would you say to doctors and patients who are in the catchment areas and who can get this survey and how can they access it?

OK, it will be on line, it will of course be on our website: www.CMLadvocates.net, we will put it on our website when we use all the chances we have to distribute it to doctors and patients around the world.

We will look out for that then. Giora, thank you very much for coming in. Great to see you.

My pleasure, thank you.