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Table 3 (a) Explanation of (sub)themes, (b) recommendations and quotations, derived from the focus group discussions on topic 2) prognostic model OncologIQ

From: Head and neck cancer patients’ preferences for individualized prognostic information: a focus group study




Counseling with the prognostic model?

How do patients feel and think about counseling with OncologIQ?

With model. Some patients want to be counselled with the prognostic model. They think it gives a clear overview of their survival chances, and provides a personal estimate of their survival rates.

It makes it more personal I think. It applies more to you personally. (caregiver 2, f3)

Without model. Some patients don’t want to be counselled with the model. They find it too confronting, or just don’t feel the need to receive counselling with a prognostic model. Others think the model doesn’t include enough prognostic factors yet.

If I’m part of the big group, I have more alternative possibilities. (pt 1, f5)

No preference. Some patients don’t have a specific preference, as they see both advantages and disadvantages of receiving prognostics information with a model.

I sit on the fence a little. I think it is more confronting, but also somewhat more realistic. It is close to home and that can be frightening. So I am not sure whether I want it like that. (pt 4, f5)



Add additional prognostic factors, in order to make the prediction more individualized.

I actually think it’s pretty unreliable. You should fill in many more things, like does the patient smoke, drink, and exercise? (pt 2, f4)

Add treatment modalities if possible.

Can you add radiotherapy in this model? (caregiver 1, f2)

Include quality of life as an outcome in the model.

This model says nothing about the quality of life. (caregiver 3, f3)

Provide structural information to make sure every patient is informed about the possibility to discuss the individual prognosis with OncologIQ.

People should be able to indicate in advance whether they want to know this or not. (pt 4, f5)

This prognostic information should be given by someone else than the physician, as the participants thought this task would be too time-consuming and stressful for the physician. They opted to trust this task to a specialized nurse. In addition, one caregiver suggested to integrate this in our Healthcare Monitor.

I think it's too much for a doctor. You become a doctor to help patients, but to really get to know the human psyche is something else. (caregiver 2, f5)

Take concerns about the health insurance into account. In three focus groups caregivers shared their concerns about hypothetical consequences for the health insurance.

Then the premium will increase. (caregiver 2, f3)

Show and explain all variables that are included in OncologIQ. This enables patients to understand which variables are used to calculate their prediction.

I think you should show the variables. This enables you to see what the prediction is based on. (pt 3, f3)

Use the 5-year survival rate. When discussing survival rates, participants prefer using the 5-year survival rates instead of 1- or 10-year survival rates, unless the individual patient prefers otherwise.


Create the possibility to view OncologIQ in a patient portal.

  1. pt patient, f focus group