BMJ 2000;320:909-913 ( 1 April )

Information in practice

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

Geraldine M Leydon, research fellow in cancer, a Mary Boulton, professor of sociology, b Clare Moynihan, medical sociologist, c Alison Jones, consultant in oncology, d Jean Mossman, chief executive, e Markella Boudioni, research officer, e Klim McPherson, professor of public health epidemiology. a

a Cancer and Public Health Unit, Department of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, London WC1E 7HT, b School of Social Sciences and Law, Oxford Brookes University, Oxford OX3 0BP, c Institute of Cancer Research and the Royal Marsden NHS Trust, Sutton SM2 5PT, d Royal Free Hospital School of Medicine, Royal Free Hospital, London NW3 2QG, e CancerBACUP, 3 Bath Place, London EC2A 3JR

Correspondence to: G M Leydon g.leydon{at}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.


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