Introduction
Methods
Procedures and study sample
Materials and qualitative method
Interview protocol
Analysis
Results
Patients with or without discrepancies
Patient Mary
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Mary was 60 years old and married. She had two sons and two grandchildren. Her answer to the EORTC question was consistently ‘not at all’, except for the then-test concerning the interview T1. This suggests that she did not suffer from fatigue in the week prior to the interviews and that fatigue due to chemotherapy did not have any impact at all on her energy level. But, during the interview she spontaneously provided information that indicated that chemotherapy had an impact on her life and that she regularly suffered from fatigue.
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T1 EORTC score ‘not at all’
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Think aloud: Were you tired... no not at all, no, no difference compared to the past |
Interview: I’m getting tired at the least little thing |
T2 EORTC score ‘not at all’
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Think aloud T2: Not tired, last week, not at all
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Think aloud then-test T1: a little, more than at the moment. |
Interview: According to the doctors, the X-rays were very good. I’m very optimistic, sometimes I’m tired but that’s my own fault. I don’t have as much energy as I did before I became ill. |
T3 EORTC score ‘not at all’
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Think aloud: Last week I wasn’t tired, it’s the second week after my chemo, not at all tired |
Think aloud then-test for T2:
not at all
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Interview: Yes, it was my last cycle of the chemo, I was afraid that I wasn’t going to be able to carry on through the treatment. But I managed, okay; I’m tired but apart from that... nothing at all. |
T4 EORTC score ‘not at all’
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Think aloud: No I wasn’t tired last week, not at all
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Think aloud then-test for T3:
not at all
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Interview: Now and then, I’m tired. It’s different to before my chemotherapy. Sometimes I’m so tired, so tired, more than in the past. It comes suddenly...in the middle of the day. |
Patient Ann
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Ann was 47 years old and living with a partner. She didn’t have any children.
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Her scores suggest that the chemotherapy had a slight impact on her energy level during her treatment and a greater impact 6 weeks after completion of the treatment. But, the interview and the think aloud provided information that indicated that the chemotherapy had a growing impact on her life, and the score ‘quite a bit’ at T4 was the result of bad news (i.e. a recurrence of the tumour). Furthermore, her data show examples of different response strategies, comparison with more sick patients and self-presentation.
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T1 EORTC score ‘not at all’
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Think aloud: Were you tired.. in principle I wasn’t tired. I was mentally tired, it costs me a lot of energy to talk with my relatives. I think you mean physically tired. You’re tired in the sense that you can hardly put one foot in front of the other. That’s being tired. No I’m not tired. |
Interview: I want to be realistic, think positively. I try not to worry; there is nothing I can do. I don’t know when I will die. I get angry when people are surprised...if I say I’m doing fine...it’s my decision how I’m feeling.
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T2 EORTC score ‘a little bit’
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Think aloud: I feel it a little bit, compared to other people who are very sick. So, if I have pain or when I’m tired I say to myself don’t complain, so everything I feel, I only feel a little. I’m doing fine. |
Think aloud then-test for T1:
a little
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Interview: Yesterday, I worked for three hours and I was exhausted. I went to bed in the middle of the day in order to be able to show my friend that I’m doing fine. She has trouble in coping...me... having cancer. |
T3 EORTC score ‘a little bit’
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Think aloud:
A little, yes because I have the feeling that I was able to get over it
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Think aloud then-test for T2: I think that I’ve said a little last time, it felt a little, but I shift my limit. |
Interview: It’s a kind of tiredness, I don’t know. I’ve never been like that. To allow yourself to be tired. I think that the story they all tell, that the last cycle of chemo has the most impact, I think that’s very very true. |
T4 EORTC score ‘quite a bit’
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Think aloud: Yes, I was quite a bit tired, but only mentally tired. I have to adjust to the idea of a new course of treatment and radiation. My health is excellent. I’m able to do everything I like, better than 6 weeks ago. But, with all the medicine I’m taking to suppress the epileptic fits... I’m scared, just like after the start of chemo. |
Think aloud then-test for T3:
a little but I am not really sure, the pain which I had in my ankels made me tired. |
Interview: The radiation will make me tired, but it has not started yet, so I am not tired yet. |
Patients’ characteristics | ||||||||||
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Nr. | M/F | Age | LD/ED | T1 | T1t | T2 | T2t | T3 | T3t | T4 |
Discrepancies
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P 02 | Male | 57 | ED | 3 | 3 | – | – | 1 | – | – |
P 04 | Female | 50 | LD | 1 | 2 | 2 | 3 | 2 | 3 | 2 |
P 08 | Female | 69 | ED | 2 | 2 | 1 | 2 | 1 | 2 | 2 |
P 09 | Male | 66 | ED | 3 | 2 | 2 | 2 | 2 | 2 | 2 |
P 10 | Male | 46 | LD | 2 | 2 | 2 | 2 | 2 | 2 | 2 |
P 12 | Female | 47 | LD | 1 | 2 | 2 | 2 | 2 | 2 | 3 |
P 15 | Female | 69 | LD | 1 | 2 | 2 | 3 | 2 | 3 | 2 |
P 17 | Female | 64 | ED | 2 | 2 | 2 | 2 | 2 | – | – |
P 18 | Male | 72 | ED | 1 | 1 | 2 | – | 1 | – | 3 |
P 21 | Male | 69 | ED | 2 | 2 | 2 | 3 | 2 | 2 | 2 |
P 22 | Male | 55 | LD | 4 | 1 | 1 | – | 2 | – | – |
P 24 | Female | 56 | LD | 1 | 1 | 1 | 2 | 1 | 2 | 1 |
P 26 | Female | 59 | LD | 4 | 2 | 1 | 2 | 2 | – | – |
P 32 | Female | 60 | LD | 1 | 2 | 1 | 1 | 1 | 1 | 1 |
P 34 | Female | 51 | LD | 1 | 1 | 2 | 1 | 2 | 1 | 1 |
No discrepancies
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P 01 | Female | 42 | LD | 2 | 2 | – | – | 4 | 4 | 3 |
P 03 | Female | 64 | ED | 3 | 1 | – | – | 3 | 3 | 4 |
P 13 | Male | 72 | ED | 3 | 3 | 2 | 3 | 3 | 2 | |
P 14 | Male | 39 | LD | 4 | 3 | 2 | 2 | 3 | – | – |
P 16 | Male | 68 | LD | 1 | 1 | 3 | 3 | 3 | 3 | 2 |
P 20 | Female | 44 | LD | 1 | – | 4 | – | 4 | – | 4 |
P 27 | Male | 69 | LD | 3 | 2 | 2 | – | – | 4 | 2 |
P 29 | Male | 63 | ED | 2 | 3 | 3 | 2 | 3 | 3 | 2 |
Response strategies for the four response options
Think aloud about the question ‘were you tired’
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I’m not tired all the time
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I’m only tired in the afternoon |
No not at all, I’m not tired at the moment, it comes suddenly |
I have to be honest, sometimes I’m tired, I can’t say not at all, otherwise I would be lying |
I’m not really tired, it’s something else
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No not tired, it’s the flue, that’s why I’m tired |
It’s not being tired you know, it’s more like being restless |
I’m not physically tired, I’m mentally tired |
Actually, I can’t be tired because the Hb level in my blood is okay |
I’ve no problems with it
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I’m currently doing nothing, so I’ve no problems, I’m not tired |
Of course, you can make yourself tired, but I’ don’t |
I can still cope with it; I don’t want to exaggerate |
I’m a little bit tired but it’s due to something else
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A little, but it was my own fault, I did too much |
I didn’t have a proper meal, that’s why I was tired |
I didn’t have my lady working for me in the house, she went on holiday |
It’s because I’ve got problems with my voice caused by the radiation |
Optimism
Response shift and self presentation
Spontaneously reported coping behaviour
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Protective behaviour
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I’m trying to avoid or minimize pessimistic thoughts |
I don’t think about it, otherwise I can’t cope with it |
We don’t talk about it, just follow my every day routine |
I’m building a wall around myself |
Assertive behaviour/power display
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I’ll show others that I’m managing all right |
You have to be positive |
You have to believe in yourself, otherwise you can’t manage it anymore |
Fighting the stigma
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I’m not the cancer patient my neighbour thinks I am |
They think I’m lying on my bed all day |
People look at me, and give advice that I don’t want |
I have to admit that I really am a cancer patient... I didn’t want to be (see patient Ann, Box 2). |