Letters

Information needs of patients with cancer

BMJ 2000; 321 doi: https://doi.org/10.1136/bmj.321.7261.632 (Published 09 September 2000) Cite this as: BMJ 2000;321:632

Patients are frightened and their information needs fluctuate

  1. Anne Fleissig, research psychologist (a.fleissig@ucl.ac.uk)
  1. Cancer Research Campaign Psychosocial Oncology Group, Royal Free and University College London Medical School, London W1P 7PL
  2. Grampian University Hospitals, Clinical Effectiveness Department, Elgin IV31 6RN
  3. Breast Cancer Action Group, PO Box 281, Fairfield, Victoria 3078, Australia
  4. Cancer and Public Health Unit, Department of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, London WC1E 7HT
  5. Institute of Cancer Research and the Royal Marsden NHS Trust, Sutton SM2 5PT
  6. School of Social Sciences and Law, Oxford Brookes University, Oxford OX3 0BP
  7. Royal Free Hospital School of Medicine, Royal Free Hospital, London NW3 2QG
  8. CancerBACUP, London EC2A 3JR
  9. Cancer and Public Health Unit, Department of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, London WC1E 7HT

    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 …

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