Introduction  7 1 11 2 3 5 5 17 This paper reports the results of an exploratory longitudinal multiple-case study, in which we focused on how patients responded to the EORTC QLQ-C30 question ‘were you tired’ at different points in their treatment trajectory. We aimed to describe the patients’ explanations when answering the question, and to search for explanations of counter-intuitive findings. Methods Procedures and study sample Between March 2001 and September 2003, we recruited newly-diagnosed patients with SCLC who were evaluated for 1st line chemotherapy. The patients were attending one of five outpatient clinics for chest diseases in the Netherlands. To maximize the likelihood that we would interview patients from the beginning of their treatment, we were informed about new patients immediately after diagnosis. No restrictions were made with regard to age or treatment (chemotherapy or a combination of chemotherapy and radiotherapy). Participating patients gave written consent and were interviewed at equivalent points in the treatment trajectory. The first interview (T1) was carried out at the start of chemotherapy. In the original plan the second interview was planned after completion of the course of chemotherapy. However, after inclusion and first interviews of 3 patients we made a decision to interview the patients during treatment as well. Therefore the second interview (T2) was conducted 4 weeks after T1 and the third (T3) 7–10 days after completion of the treatment with chemotherapy and the fourth (T4) 6 weeks later. Approval for this study was obtained from the Medical Ethics Committees of the research site and the participating hospitals. During the course of the study, 41 eligible patients were invited to the study. Four patients were unwilling to participate, 3 died before informed consent could be obtained, and 3 were not interviewed because of imminent death. Of the 31 respondents who were interviewed, 8 were excluded from further analysis because their data were incomplete, i.e. they were only interviewed once (six died within a month after T1 and two were too sick at T2 and died before the end of the planned chemotherapy). Consequently, the final study sample consisted of 23 SCLC patients, of whom 12 had limited (3 male and 9 female, mean age 55, range 42–69) and 11 had extended disease (8 male and 3 female, mean age 64, range 39–72). All patients received standard chemotherapy, except for 7 patients whose chemotherapy was combined with local radiation of the tumour. The majority of the patients were married (19, 83%), and had children (17, 74%). Of the 23 patients in our study sample, 15 were interviewed four times, 7 were interviewed three times, and one patient was only interviewed twice resulting in a total of 83 interviews. The interviews were conducted by MW in the homes of the patients. In three cases the 1st interview was held in the hospital. Interviews averaged 80–110 min. Materials and qualitative method 1 4 8 concurrent think aloud focused interview semi-structured interview Interview protocol 13 14 15 16 18 The interviews were audio-taped and transcribed verbatim. In this article we focus on the EORTC QLQ-C30 question ‘were you tired’. Analysis 12 http://www.kwalitan.net) 1 http://www.mindjet.com Fig. 1 Note:  Furthermore, a different mind map was made to organize think aloud data related to the question ‘were you tired’ for all patients per response category per assessment, including then-test. For the analysis, three authors (MW, AT, TH) each independently read the mind maps of each patient. They studied patients’ scores, their think aloud responses, and examined whether response shift type explanations would be provided: recalibration (i.e., using different standards of comparison to assess fatigue over time), reprioritization (i.e., changes in the importance attached to fatigue over time) and reconceptualization (i.e., changes in the meaning of fatigue over time). Two researchers (MW, AT) searched for additional explanations in the core texts to account for the response behaviour and the discrepancies. The research team (MW, AT, TH, MS) discussed critically the different response strategies used by the patients and the robustness of the interpretations of response shift. Results Patients with or without discrepancies a little, more than at the moment Box 1 Example of a patient with discrepancies in reported level of fatigue Patient Mary 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. T1 EORTC score ‘not at all’ Think aloud: not at all Interview: T2 EORTC score ‘not at all’ Think aloud T2: not at all Think aloud then-test T1 a little Interview: T3 EORTC score ‘not at all’ Think aloud: not at all Think aloud then-test for T2: not at all Interview: T4 EORTC score ‘not at all’ Think aloud: not at all Think aloud then-test for T3: not at all Interview: Box 2 Example of a patient using different response strategies, comparison with more sick patients, response shift and self-presentation Patient Ann Ann was 47 years old and living with a partner. She didn’t have any children. 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. T1 EORTC score ‘not at all’ Think aloud: mentally tired No I’m not tired Interview: if I say I’m doing fine it’s my decision how I’m feeling. T2 EORTC score ‘a little bit’ Think aloud: little bit, compared to other people who are very sick Think aloud then-test for T1: a little Interview: to show my friend that I’m doing fine T3 EORTC score ‘a little bit’ Think aloud: A little I was able to get over it Think aloud then-test for T2: a little I shift my limit Interview: the last cycle of chemo has the most impact, I think that’s very very true T4 EORTC score ‘quite a bit’ Think aloud: mentally tired Think aloud then-test for T3: a little Interview: I am not tired yet n  n  1 Table 1 n  n  n  Patients’ characteristics Nr. M/F Age LD/ED T1 T1t T2 T2t T3 T3t T4 Discrepancies 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 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 n  n  1 Then-test scores were dissimilar with scores of the previous assessment in 25 out of 52 cases, with higher then-test scores in 16 cases. Transcripts showed that patients had difficulty remembering either the previous measurement point and/or their fatigue at that time. Response strategies for the four response options quite a bit, too tired to keep my eyes open yes quite a bit, very tired next week it will be better...very much a little bit, I think tired then, no very much only in the afternoon it’s the flu I can still cope with it; I don’t want to exaggerate” I didn’t have a proper meal I m currently doing nothing, so I’m not tired Box 3 n  Think aloud about the question ‘were you tired’ I’m not tired all the time 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 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 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 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 I ve got good news, I m as optimistic as can be I m full of hope because I was diagnosed in an early stage, so I m good in time . I m lucky not to be very sick, compared to the patients I saw at the hospital it s part of the package, I’m willing to put up with, knowing the chemo is doing the job properly It was much worse than I wanted to admit last time, I’m feeling much better I’ve already a couple of months extra I m a broken man, hard work all my life and now...I don’t think I ve much time left I’m a bit depressed, when does it stop, if it doesn’t stop it would be better if my life was over No plans for the future, you never know when the tumour will come back Response shift and self presentation  I was tired, yes, but compared to the patients I ve seen in the hospital, I m just a little bit tired Compared to the first week after chemo, it’s the second now ... I’m not tired I told you that I was really tired then, but compared to how I’m feeling now, it was then just a piece of a cake”. I already told you that I would change my standards . Tired means that you can hardly put one foot in front of the other Purely, because I was mentally tired last week. I have to adjust to the idea of a new course of treatment. Actually, I have to admit that I really am the cancer patient I never wanted to be Box 4 n Spontaneously reported coping behaviour Protective behaviour 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 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 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). Protective behaviour Assertive behaviour/power display Fighting the stigma Taking these strategies into account, we concluded that a possible mechanism underlying the discrepancies in this group was ‘self-presentation’. As the questionnaires are explicitly related to cancer and since these patients want to distance themselves from being reduced to only a cancer patient, they want to present themselves as a person who just happened to have cancer. Therefore, they applied various strategies to respond to the question on fatigue in order to produce a score that was as favourable as possible and presented themselves as positive and managing their fatigue. Discussion Two third of the patients showed discrepancies in their reported level of fatigue. They reported a gradual decrease in energy at the end of chemotherapy, but they were ‘not at all’ or just ‘a little bit’ tired according to their answer to the EORTC questionnaire, with underreporting as a result. They presented a positive image of themselves and used various strategies to explain their choice of response category. A predominant finding was that patients adopted a more optimistic perspective on the treatment. Interestingly, this was not exclusively found in the discrepancy group. The same was true for recalibration and for the only indication of reprioritization. These response shift type explanations did not sufficiently account for the conflicting findings in our discrepancy group. Self-presentation was found to be an additional (coping) mechanism underlying the discrepancies. Our results suggest that patients are not only concerned about the impression they make on others. They try to protect themselves from negative thoughts and they also feel the need to be positive and to distance themselves from the stereotypical cancer patient. With this strategy they are more capable of coping with a situation that they cannot change. The suggestion that self-presentation is an underlying mechanism is supported, for example in the case of Ann. After a recurrence of the tumour she adopted the realistic perspective by admitting that she really was ‘the cancer patient’, which she did not want to be before. It seems that she had given up her attitude of showing others that everything was all right, and for the first time she did not present her self as more positive than she actually was as she did before. 6 9 10