Blood Cancer in the Elderly: European Expert Forum, Rome, 19—20 March 2011
Psycho-social aspects of treating elderly patients: Expert roundtable
Participants:
AP: Professor Antonello Pinto (National Cancer Institute, Naples, Italy)
LT: Dr Luzia Travado (Central Lisbon Hospital Centre, Portugal)
GS: Giora Sharf (Israeli CML Patient’s Support Group)
JH: Professor Joerg Hasford (Ludwig-Maximilians Universität, Germany)
GM: Professor Gordon McVie (European Institute of Oncology & ecancer)
AP: I’d like to start, if there are no specific questions from the floor with asking Dr Travado one thing. I have been told by your colleagues in my ward that cancer is a disease of family, not only of the patients. Do you think that the role of family in the management of old people or senior cancer patients, let’s say, is more important than in middle aged subjects?
LT: What can I say, of course the answer is yes. The disease impacts the patient and his social milieu, being the family or wherever he lives. Of course elderly patients, if they have comorbidities and dysfunctionalities the family plays an important role as care givers. But the issue is that we shouldn’t make it the rule; the patient is the one that needs to say if he wants the family involved or not. I have some patients of 75 years old, I recall one lung patient with advanced cancer that specifically has told the doctor and the team, “Do not tell anything to my family that you don’t tell me first.” So you have to ask the patient how do you want this to be managed; if you want the family to be included or not. Of course if the patient has cognitive impairments you do have to involve the family. But this is just to say that the patient should guide the treatment decisions and how they feel comfortable about it. In Portugal we have done a study about how much information patients want about their disease and we found out that 85% of the patients do want some information and only 10% of them want the family to be involved.
AP: And this is age related somehow?
LT: No, no, there was no age.
AP: It’s just all throughout the age range.
LT: So it reminds us that the patient needs to be at the centre of care and still have the power to let us know what they want.
AP: On the other hand, and then we can turn to Giora Sharf as well, since this is very frequent, nowadays, the use of biology modifying treatments, let’s say, TK inhibitors but also Revlimid in myelomas, which needs to be kept for a long time and so the adherence is a critical issue. In the setting of older patients, in these terms family needs to be somehow put into the system because, for example, even within clinical trials, this is my own experience that they took part in an important trial, first line treatment of older myeloma patients with oral medications and I have to say that our adherence and compliance to the protocol as a group was very, very high and this is because working in a Southern area in which the general approach is family centred. I have to say that if our patients who actually took all the medication in time, it was mostly due to a participating family. So from your experience here, once more how the family of patients are still to be put into the system.
GS: Well, as I mentioned in my talk, and I think that the family has a major role in the compliance issue. I want to mention, before I go into that, I haven’t mentioned but as doctors you should take into account that the Hammersmith trial showed that patients are reporting to the doctor, when they ask them about compliance the data that they are giving them is much lower than the actual compliance. So when your patient is telling you that he’s taking the drug every day, you have to double-check because there is still… maybe the patients are a little bit afraid of the doctor, they don’t want to tell him the full truth. But this was done in the Hammersmith trial which was an interesting trial because it had electro-chip tops and every time you opened the box it was recording an opening, which doesn’t mean that the patient was taking the drug actually but since the patients were not told that there is an electro-chip in the box, they didn’t know that. So the data is important that you have to know that not what the patient tells, you have to go into more details.
The families really have a major role. We have a group in Malaysia that the head of the group, as I told you, his wife makes sure every day that he takes a drug after a meal. That happens in many, many patients and that’s the best, the cheapest and the most helpful tool to make adherence and compliance much more effective.
AP: So this may collide a little bit with what Dr Travado was saying that if the patient doesn’t want the family to be involved one should try to comply to this will. But, in other words, with these long, chronic treatments in the aged population it’s really critical to have someone checking for them. So we should find out a way to identify who will do the checks.
LT: I can say that the patient who actively says that he wants to know first is someone that is usually healthy and in perfect control of his own life and does not want others to interfere. What Giora was mentioning was that patients that are more dependent really need someone to check it out for them and so there are differences. But what I wanted to comment, if I may, in the issue of compliance is that if you have… Well, patients to comply, it has been psychologically studied that patients need to understand first, to do any compliance anywhere, you need to understand what are the benefits and the risks so that the patient can decide and not only do the treatment because some authority has recommended it. Because we, all of us, tend to react to that, to a prescription per se. So the patient needs to really understand what is the treatment and also to trust the doctor that he is there to manage the side effects and the difficulties and the concerns. So my recommendation is that a good communication with patients, an assessment of their fears, of their beliefs, of their concerns, it’s quite important as a way to manage resistance that will then lead to better satisfaction by the patient..
AP: So good communication does not only mean good information because communication is a different thing.
LT: It’s two sided.
AP: It’s two sided, that’s very important. Let me turn to Dr Hasford for a moment. The data you showed us are very interesting, there is still this tendency not to adopt what is considered state of the art treatment simply because of age consideration. So the data is very clear and it’s still impressive. My question is what do you feel, what’s the main reason underlying this? There’s cost considerations, idea that even if you should ask that the better survival is even higher than what you see, why do physicians still show some reluctance? How much weight does cost consideration this choice?
JH: I can only answer that question, or these questions, with regard to my opinion as the database does not allow me to answer this data, these questions, really, in an absolutely valid manner. There have been done interviews with physicians who treat chronic myeloid leukaemia patients in Bavaria and one of the companies who provide TKIs didn’t believe that. So they made interviews through a company, an opinion company or interview company, and they interviewed physicians who treat more than ten outpatients per year, either inpatient or outpatient. It was very amazing that this age discrimination appeared only in the outpatients, in the office-based physicians who were treating outpatients, not in hospital doctors. That indicates that indeed some budget or cost constraints regarding here the rule. But it’s amazing, if you have a cancer patient you are considered outside of all budgeting. So if you have got cancer, budgets in Bavaria or in Germany in general for drugs do not play a role. Therefore it’s somehow disturbing but it may be that physicians do not so much differentiate in their brains, there are all these cost containment policies that are instituted on them, so to speak, maybe too difficult that they do not always differentiate: this is a cancer patient so I can prescribe what I think is up to date, whereas if it’s non-cancer patients you have to look and there is budgeting for drug costs. But that, I think, is a very interesting point, to see that office-based physicians make this differentiation whereas hospitals just don’t do it.
AP: OK, thank you. Gordon?
GM: Any more questions? Have you got any more points?
AP: No, that’s fine.
GM: You’re sure? Any more points to make of your colleagues? We’re agreed that communication skills are important, we don’t need to convince each other of that.
LT: I’m trying to convince physicians and doctors to do communication skills training as a way to better address patients’ concerns and fears and as a better way to control the outcome and improve the patients’ adaptations and compliance.
GM: Maybe you should not use patients like this one here to help doctors improve their communication skills. Thanks very much everybody, I appreciate it. Fantastic, thank you.
