Patients intended to use more information for future choices than they used for past choices. For future choices, most patients prefer a summary measure on quality of care over more detailed measures but seem to value that they were already treated in that hospital or a hospital's good reputation even more.

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Summary The aims of our study were to assess the effect of follow-up on the quality of life of colorectal cancer patients and to assess the attitudes of patients towards follow-up as a function of patient characteristics. Patients who had been treated with curative intent were selected from four types of hospitals. Eighty-two patients were interviewed using a structured questionnaire, whereas 130 patients received the questionnaire by mail. To assess the effect of follow-up on the quality of life, the interviewed patients were randomly allocated to three groups and interviewed at different times in relation to the follow-up visit. Analysis did not show an effect of the follow-up visit on quality of life. Patients reported a positive attitude towards follow-up: it reassured them, they judged the communication with the physician to be positive, and they experienced only slight nervous anticipation and few other disadvantages. Patients reported a strong preference for follow-up, and a large majority would prefer follow-up even if it would not lead to earlier detection of a recurrence. Apart from living situation, no patient characteristics were clearly associated with the attitude towards follow-up. Implications for clinical practice are discussed.Keywords: colorectal cancer; routine follow-up; quality of life; patient preferences Following curative surgery for colorectal cancer, most patients are submitted to some-form of oncological follow-up. The main purpose of this follow-up is to detect recurrences and metachronous tumours in an early phase, when curative treatment may still be an option. Additional reasons for follow-up may be quality control for the surgeon and support of the patient (Bruinvels, 1995). The effectiveness and efficiency of oncological follow-up have become more and more a subject of debate (Deveney and Way, 1984;Sugarbaker et al, 1987;Isbister, 1988;Loprinzi, 1995;Virgo et al, 1995). Important effects to be considered in determining appropriate follow-up practices include longevity, quality of life and financial implications (Loprinzi, 1995). Effects on longevity are unclear. Although aggressive surveillance undoubtedly detects some cancers before symptoms develop, it is uncertain whether survival is measurably affected (Virgo et al, 1995). In a recent meta-analysis of studies comparing intensive follow-up with minimal or no follow-up, no statistically significant difference in survival was found (Bruinvels et al, 1994).Little is known about the effects of routine follow-up on the quality of life of colorectal cancer patients and about the value that patients attach to follow-up. Breast cancer patients have been found to experience more psychological complaints and fear of recurrence just before the follow-up visit (Broyn and Froyen, 1982;Rutgers, 1986). On the other hand, follow-up may have a positive effect on feelings of security, and the visits may provide reassurance. In an earlier study from our institute, patients were Received 13 June 1996 Revised 10 October 1996 Accepted 15 October 1...

PurposeTo validate the Dutch version of the EORTC QLQ-CR29 quality of life questionnaire for colorectal cancer.MethodsWe translated and pilot-tested the original questionnaire in the Netherlands, following EORTC guidelines. We assessed factor structure, reliability and construct validity in different samples of patients from four hospitals.ResultsOf 296 patients, 236 (80 %) returned the questionnaire, and 27 out of 48 patients returned the retest questionnaire. In addition to the original three scales, we found a reliable bowel functioning scale (α = 0.80), reducing the number of individual items by five. Two of the other scales had sufficient to good reliability (urinary frequency, α = 0.71, original α = 0.75, body image α = 0.80, original α = 0.84), the third, blood and mucus in stool, only moderate (α = 0.56, original α = 0.69). Item functioning was sufficient to excellent for all but two items (urinary incontinence and dysuria). Construct validity was similar to that in earlier studies.ConclusionWe found a very satisfactory scale for bowel problems, in patients both with and without stoma. The body image and urinary incontinence scales were reliable, and construct validity was sufficient. We suggest the questionnaire to be adapted to decrease the number of individual items, improve the scales, and therefore increase reliability of the entire questionnaire.

Breast cancer patients with absent or reduced CYP2D6 activity and consequently low endoxifen levels may benefit less from tamoxifen treatment. CYP2D6 poor and intermediate metabolizers may need a personalized increased tamoxifen dose to achieve effective endoxifen serum concentrations, without increasing toxicity. From a prospective study population of early breast cancer patients using tamoxifen (CYPTAM: NTR1509), 12 CYP2D6 poor and 12 intermediate metabolizers were selected and included in a one-step tamoxifen dose escalation study during 2 months. The escalated dose was calculated by multiplying the individual’s endoxifen level at baseline relative to the average endoxifen concentration observed in CYP2D6 extensive metabolizers by 20 mg (120 mg maximum). Endoxifen levels and tamoxifen toxicity were determined at baseline and after 2 months, just before patients returned to the standard dose of 20 mg. Tamoxifen dose escalation in CYP2D6 poor and intermediate metabolizers significantly increased endoxifen concentrations (p < 0.001; p = 0.002, respectively) without increasing side effects. In intermediate metabolizers, dose escalation increased endoxifen to levels comparable with those observed in extensive metabolizers. In poor metabolizers, the mean endoxifen level increased from 24 to 81 % of the mean concentration in extensive metabolizers. In all patients, the endoxifen threshold of 5.97 ng/ml (=16.0 nM) reported by Madlensky et al. was reached following dose escalation. CYP2D6 genotype- and endoxifen-guided tamoxifen dose escalation increased endoxifen concentrations without increasing short-term side effects. Whether such tamoxifen dose escalation is effective and safe in view of long-term toxic effects is uncertain and needs to be explored.Electronic supplementary materialThe online version of this article (doi:10.1007/s10549-015-3562-5) contains supplementary material, which is available to authorized users.