Table 3 (a) Explanation of (sub)themes, (b) recommendations and quotations, derived from the focus group discussions on topic 2) prognostic model OncologIQ
THEME | SUBTHEME | QUOTATIONS |
|---|---|---|
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) | |
RECOMMENDATIONS | QUOTATIONS | |
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. | ||