Information needs of patients with cancer

Editor—I read the paper by Leydon et al on the information needs of patients with cancer1 and comment both as a researcher with a particular interest in the provision of patient information and as a patient who received a diagnosis of cancer last year. In addition to faith, hope, and charity, the patients' narratives illustrate the part fear plays in preventing patients with cancer from seeking information. The quotations in the paper echo many of my own fears, which at times prevented me from seeking information: one is frightened of finding out something bad (box 2, quote 4), one is frightened of jumping to the wrong conclusions through ignorance (box 1, quote 3) or lack of specific information about one's own condition (box 2, quote 2 and quote 6), and one is frightened of being labelled a “clever dick” (box 1, quote 4). It is important to differentiate between patients who do not seek further information about their condition because they are frightened of the potential content and those who do not seek further information because they are reluctant to ask for more details, even when they do want them (box 3, quote 2). The challenge for health professionals is to distinguish when patients want more detailed information, and the onus is on them to provide it. This will help patients to extract relevant information from other sources. The narratives also illustrate the fluctuating information requirements of individual patients during the course of their illness (box 1, quote 4; box 2, quote 2 and quote 3), and the authors justifiably recommend further research taking a longitudinal approach to explore the changing nature of patients' orientations. Again, this mirrors my own experience. I wanted as much information as possible, but nevertheless I was terrified of being told the results of my biopsy at one visit to the clinic as I was mentally unprepared (having expected to be told the following week). There was also an internet site that I was unwilling to access on one occasion but that I readily opened a few weeks later. In developing recommendations, the government's cancer information strategy should attend to these variations over time within individuals, in addition to the variations between patients in their desire for information.