Abstract
In order to determine the number of short-term side effects and late effects discussed during an informed consent conference (ICC) after the diagnosis of acute leukemia, we observed the occurrence(s) and the ratio between short-term side effects versus late effects during an ICC. ICC(s) of childhood leukemia trials were audio-taped at six different study sites. The side effects mentioned during each of these ICC(s) were coded and analyzed. One hundred forty cases were reviewed, from which we coded a total of 3,173 acute side effects and 242 late effects. The mean total side effects mentioned during each ICC was 24 (range 5-47). The number of late effects coded were significantly less than acute side effects. We also found that the duration of ICC(s) was positively correlated with the number of side effects mentioned. In addition, the frequency of total side effects mentioned was independent of patient or parent demographic factors. Our results show that acute side effects are often mentioned but the discussion of late effects is much less frequent in the initial ICC(s). Careful consideration regarding the ratio of acute and late effects that are communicated to parents in the context of the ICC may facilitate parental understanding of clinically relevant side effects.
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