Background
Methods
Definition of prognosis
Research team & reflexivity
Study design
Interview guide
Data analysis
Results
Participants
FOCUS GROUPS | PATIENTS | CAREGIVERS |
---|---|---|
1. small laryngeal carcinomas treated with radiotherapy / laser | 6 (28.6%) | 6 (31.6%) |
2. extensive oral cavity surgical procedures | 2 (9.5%) | 2 (10.5%) |
3. total laryngectomy | 4 (19.0%) | 6 (31.6%) |
4. chemoradiation | 5 23.8%) | 3 (15.8%) |
5. other treatmentsa | 4 (19.0%) | 2 (10.5%) |
Total no. of participants per focus group (%)b | 21 (100%) | 19 (100%) |
PATIENT CHARACTERISTICS | NO. (%) / MEDIAN (Q1-Q3) | |
Age, years | 65.0 (53.5 – 68.5) | |
Age range, years | 33 – 78 | |
Sex | ||
male | 12 (57.1 %) | |
female | 9 (42.9 %) | |
Tumor localization | ||
larynx | 9 (42.9%) | |
hypopharynx | 2 (9.5%) | |
oral cavity | 3 (14.3%) | |
oropharynx | 6 (28.6%) | |
unknown primary | 1 (4.8%) | |
Tumor stage | ||
I | 5 (23.8%) | |
II | 3 (14.3%) | |
III | 5 (23.8%) | |
IVa | 7 (33.3%) | |
IVb | 1 (4.8%) | |
Marital status | ||
married / durable relationship | 19 (90.5%) | |
single | 2 (9.5%) | |
Education level | ||
lower (primary education or less / lower secondary) | 7 (33.3%) | |
intermediate (upper secondary / post-secondary non-tertiary) | 9 (42.9%) | |
tertiary (short cycle tertiary / bachelor / master / doctoral) | 4 (19.0%) | |
missing | 1 | |
Median time between end of treatment and participation in the focus group (Q1 – Q3) | 47 weeks (35 – 64) |
Life-expectancy
THEME | SUBTHEME | SUBCATEGORY | QUOTATIONa |
---|---|---|---|
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… | I want to know what my chances are and find the percentages important. If you say ‘it is 3%’, it becomes somewhat more difficult. If I would hear 80% then I would think ‘all right, I'm definitely going to make it’. (pt 5, f4) | ||
… 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) |
The 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. |