Table 2 Explanation of (sub)themes and quotations, derived from the focus group discussions on topic 1) life-expectancy

Understanding the concept of life expectancy

What are patients’ views on the concept of prognosis, life-expectancy and 5-year survival rates?

1. Unknown. Participants are not familiar with the concept life expectancy.

I have never heard of the 5-year survival rate. (pt 3, f4)

2. Confusing. Participants don’t understand the different terms that are used alternately. This can be confusing.

But what is actually meant by life expectancy? Do they mean survival chances, cure or life expectancy after treatment? (pt 2, f4) Or quality of life? (pt 1, f4)

3. Wrong / negative formulation. The 5-year survival term sounds negative. When talking about survival rates it should be emphasized that we are talking about chances, not certainties.

It really should be said differently, but I do not know how… When you get home you only hear ‘five years, five years’. (pt 5, f1)

Tailor-made approach

How should a professional provide customized prognostic information?

1. Content. Prognostic information can be divided in 1) qualitative information: general terms without numbers or percentages, like “the cancer is curable”, and 2) quantitative information: numbers or percentages, like months, years or survival rates. All patients wanted to receive information in general terms. However, quantitative information was not desired by all patients. Some felt empowered by prognostic information expressed in numbers or percentages, and others were in doubt or did not want to receive quantitative information at all.

1) qualitative information desired

If you say ‘well treatable’ I do not think that life expectancy is important. Well treatable is well treatable. Therefore that means the end result is also good. In that case I do not need to hear a percentage. (pt 6, f1)

2) quantitative information…

… desirable

… value unclear

I find it somewhat difficult. You can say ‘I am part of the 70%’, but it could also be that you’re part of the 30% (…) What do you gain from those percentages? How can I tell you there is a 100% chance you will not be hit by a tram when you cross the road? (caregiver 1, f5).

… not desired

I can imagine that someone just doesn’t want to know. Apart from the fact that the percentage says nothing, I can imagine that you do not want to hear it. If I would be in this situation again, I would not ask and say ’I don’t need to know’ (pt 1, f2).

2. Situation dependent. The need for quantitative prognostic information depends on the situation. In case of a poor prognosis patients have a strong preference for receiving quantitative prognostic information, while in case of a relative good prognosis patients are equally divided between wanting or not wanting to receive this information.

1) good prognosis

In the case that positive results are expected, the doctor does not need to procrastinate and should just tell me. (pt 2, f1)

2) poor prognosis

Suppose the cancer spreads and they say ‘there is no more treatment possible, if you want to know, you have six months left’. Then I think it is important to know. (pt 4, f1)

3. Quality of life. Prognostic information alone is not enough. Also information on the expected quality of life, with or without treatment, should be provided.

You have to have a life. (pt 2, f3) At least a certain level of quality. (…) And you are always going to push your boundaries. You start with radiation and say ‘if the larynx goes, it is over for me’. You keep pushing that boundary, since an individual wants to stay alive. (caregiver 3, f3) Up to a certain limit. (caregiver 4, f3)

4. Time-dependent. If patients want to know more about their life-expectancy, for example survival rates, when should we discuss this? Overall, patients think this should not be discussed shortly after receiving the cancer diagnosis, because receiving the diagnosis is already an incredibly stressful event that first needs to be processed.

At the time when I was at the doctor and heard I had a tumor, that information would be too much for me. (pt 4, f4)

5. Personal preferences. It depends on personal preferences whether a patients wants to receive prognostic information.

First of all there are two patients groups. Some patients don’t want to know anything and say ‘just treat me and I’ll see’. Others want to know everything. (caregiver 4, f1)

6. Initiator. Who should take the initiative? How do you find out which patients want prognostic information, and what kind of information? Some patients will take the lead, while others aren’t capable or don’t want to, as they trust the doctor to do the right thing being the expert.

I think the first step is that the patient says ’yes I want to know’ or ‘I don’t want to know’ and that he or she is also the one to say ‘I want or do not want the family to know’. (caregiver 1, f5)

Communication skills professional

A customized approach requires certain communication skills of professionals.

Which communication skills should a physician use when discussing the prognosis?

1. Reassurance. Reassuring the patient and giving hope.

You all want to hear: ‘everything will be alright’. Although I know that’s not realistic. (pt 2, f5)

2. Honesty. Being honest while providing prognostic information.

To me it should be very clear. Just how it is and then I can see for myself what I will do with it. (pt 5, f1) Yes for me too. Do not sugar coat it and tell it straightforward, so I know what I am in for. (pt 2, f1)

3. Tailoring. Tailor prognostic information after exploring patients’ needs and preferences or decide not to share prognostic information at all when a patient isn’t ready for it.

I think the doctor needs to look carefully at the patient. Can the patient handle the news at that time? (pt 1, f4) This means that you have a little more time with the doctor and that the doctor needs to know more of the personal history of the patient. (pt 2, f4)