Blood Cancer in the Elderly: European Expert Forum, Rome, 19—20 March 2011

Giora Sharf (Israeli CML Patient’s Support Group)

Improving patient compliance with treatment schedules

We have been hearing a great deal from doctors here at the Blood Cancer in the Elderly conference in Rome, but now we’re going to hear from a patient. Giora Sharf, you’re from Israel, you’ve had chronic myeloid leukaemia, you’ve been treated for it and you look rather healthy to me. But you’ve been talking at the conference about compliance and doctors, of course, hope that patients will comply with treatment but it is an issue, according to you?

It sure is. There are a few studies that have studied this in CML patients taking drugs, orally drug TKIs, one of them is called the ADAGIO study which is a Belgian study done by Dr Noens and it has proved that one third of the patients are not taking the drugs as prescribed. The second study is the Hammersmith study done in London by Dr Morin and it has showed that about 26% of the patients are not taking their drugs.

That’s rather disturbing, what happens when there is non-compliance?

Non-compliance has a lot of effects and I think the most important one is it has a direct effect on the outcome of the treatment, or the results of the treatment, because the Hammersmith trial has shown a direct relation between non-compliance and the result of the treatment. Patients who are taking less than 90% of the drug prescribed have only a 20% chance of reaching a major molecular response and patients who are taking more than 90% have a 94% chance of achieving the same major molecular response after six years. So that’s a major outcome of treatment which endangers the life of the patients themselves.

So whether or not you follow the schedule of drugs is almost as important as which drug you take?

No question about that. It’s very important and the issue is that the doctors are not familiar with this issue. Also, the Hammersmith study has shown that patients are reporting to the doctors that they are much more compliant than they are actually in real life. So the doctors tend to believe the patients and in reality the patients are not taking the drug as they tell the doctor they are.

Patients want to please the doctor, don’t they?

They sure do, they don’t want the doctor to press them or do things that they don’t like.

But what might be the causes of non-compliance, because doctors really do need to understand what those are?

Well there are a few mechanisms which drive non-compliance and I think the most important one is a lack of understanding the consequences of non-compliance. Patients don’t know what will happen if they are non-compliant. If we talk about 90% of taking the drug, it’s only missing three days a month and it’s not much, so patients who suffer from side-effects and sometimes they want to ease the side-effects so they just don’t take the drug for one or two or three days. They take what we call a drug holiday from the drug, they want to go on vacation so they say “I won’t take the drug for a week, I’ll feel better and my holiday will be better.” Another reason is forgetfulness. We use TKI drugs which some of our patients complain that it makes them feel that they have a fog and they forget. I, myself, took the drug for more than ten years, sometimes in the evening I don’t remember if I took the drug after my lunch so the only way I can know, I have a box and the pills inside. If I come to bed at night I look at the box, if it’s empty I know I took my drug, if the pills are still inside then I’m sure that I haven’t taken it and I take it before I go to sleep. So these are only two mechanisms, another mechanism is what we call feeling too well. When you are diagnosed we have the first shock and then you comply and you take your drug at the beginning of the treatment. The ADAGIO study had shown that as time passes by from the beginning of treatment then patients tend to be more non-compliant so time is the essence, patients are returning to normal life, they are living with the drug and then they tend to forget or be non-compliant more than at the beginning of the treatment.

So cancer clinicians, I think what you’re saying is, need to do a little bit of education but also give some practical advice to patients about how to organise their pill taking with little devices like your box. Are there any other ways of improving the situation?

Well, there are many ways and I think that education has a lot of importance. I think the most important one is to establish a routine, a daily routine can be a very helpful tool if you take your drug at the same time every day – after a meal or before a meal or whenever you need to take it, it can be very helpful not to forget it. Another instrument which is very helpful and doctors and patients are not aware of that is the use of a care giver because if you have a care giver, if you have a spouse, then they can be a very helpful tool to remind you. We have patients that the wife brings them the pill every day after they finish their meal with a big glass of water and they just make sure that the patient takes the drug. There are, of course, other simple tools like reminders that you stick, magnets that you put on your refrigerator, and then there are the more sophisticated tools like SMS. We have patient groups that are sending daily SMS reminders or using the smart phone daily reminder which can help you remember to take your drug.

Clearly patient groups could be crucial and you’re a member of one of them but with respect specifically to older patients, finally, what would you say are the messages that you would give to doctors and, indeed, patients about how to comply with therapy?

Older patients have clearly more difficulties of being compliant and there are several reasons for that. First of all they suffer from more side effects so they tend to be more non-compliant. Second of all, age does… it’s is a natural thing and they tend to forget more than the younger patients are forgetting. Also it’s more difficult to use regular information channels that we are using for our patients, many of them don’t use the internet, many of them don’t use the website emails that we are using for other patients so we have to use other information channels like face-to-face meetings and it’s more difficult, requires more resources. So patient groups do have to use other information channels and we are doing it; doctors also have to be aware that these older patients have different issues, different problems that they have to address and make sure that they take the drug every day.

And the brief bottom line message, in a few words, would be what?

I think that we are just seeing the top of the iceberg, it’s a much deeper issue than it is and we are aware of. We now are launching, this month, a survey, an international CML patient survey and it has two goals about adherence. The first goal is to assess the issue as patients report to us as patients, compared to patients reporting to doctors; we want to make sure that the scope of the issue is about the same size that it was found in the two studies I mentioned. The second, we want to identify effective tools that we will be able to use to give to our patients to improve adherence.

Giora, thank you very much for joining us here on ecancer television.

Thank you very much, it’s my pleasure.