Cancer patients’ information needs and information seeking behaviour: in depth interview study

Learning points from paper

the vast majority of cancer patients want to be informed about their illness. (See: Meredith, C; Symonds, P; Webster, L; Lamont, D; Pyper, E; Gillis, CR, et al. Information needs of cancer patients in West Scotland: cross sectional survey of patients' views. BMJ. 1996;313:724–726.)
but patients do vary in how much information they want and this may change during their illness. These attitudes are reflected in the efforts that patients make to obtain further information or to resist information that is offered to them. (See: Pinder, R. The management of chronic illness. London: Macmillan; 1990.)
All 17 patients interviewed had wanted basic information about diagnosis, treatment options, and common side effects of treatment. However, the timing of the desire for this information varied, as did the level of detail and content. Six patients had made efforts to obtain as much information as possible, but the remaining 11 patients reported minimal efforts to obtain information additional to that offered by hospital staff. All the interviews revealed a variability in attitude towards further information: patients did not want information about everything all of the time, but, at different times since their diagnosis, had wanted more or less information about particular aspects of their condition and its treatment.

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Citation and Abstract

BMJ. 2000 Apr 1;320(7239):909-13. Cancer patients' information needs and information seeking behaviour: in depth interview study. Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, McPherson K.

Cancer and Public Health Unit, Department of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, London WC1E 7HT. g.leydon@lshtm.ac.uk

OBJECTIVES: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness.

DESIGN: Qualitative study based on in-depth interviews.

SETTING: Outpatient oncology clinics at a London cancer centre.

PARTICIPANTS: 17 patients with cancer diagnosed in previous 6 months.

MAIN OUTCOME MEASURES: Analysis of patients' narratives to identify key themes and categories.

RESULTS: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information: faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable.

CONCLUSIONS: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

PMID: 10742000 [PubMed - indexed for MEDLINE]

PMCID: PMC27332

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