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Information needs of patients with cancer: results from a large study in UK cancer centres

British Journal of Cancervolume 84pages4851 (2001) | Download Citation

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Abstract

As part of a multi-centred study evaluating a communication skills training model for clinicians, we collected information preferences using an adaptation of Cassileth's Information Needs questionnaire from a heterogeneous sample of 2331 patients. Results showed that 87% (2027) wanted all possible information, both good and bad news and 98% (2203) preferred to know whether or not their illness was cancer. Cross tabulation of responses revealed no significant differences in information preferences for tumour site or treatment aims but did show an effect of age and sex. The few 58/440 (13.2%) patients who stated that in general they preferred to leave disclosure of details up to the doctor, tended to be older patients more than 70 years of age (chi square = 26.01, df = 2, P< 0.0001), although paradoxically they still wanted to know certain specific details. In comparison to men women preferred to know the specific name of the illness (chi square = 4.9, df = 1, P< 0.02) and what were all the possible treatments (chi square = 8.26, df = 1, P< 0.004). The results from this very large sample provide conclusive evidence that the vast majority of patients with cancer want a great deal of specific information concerning their illness and treatment. Failure to disclose such information on the grounds that significant numbers of patients prefer not to know is untenable. © 2001 Cancer Research Campaign

References

  1. Audit commission (1993) What seems to be the matter? Communication between hospitals and patients. London: HMSO

  2. Boudioni M, McPherson K and Mossman J (1999) An analysis of first-time enquirers to the CancerBACUP information service: variations with cancer site, demographic status and geographical location. Br J Cancer 79: 38–145

  3. Calman F and Hine D (1995). Expert Advisory Group on Cancer. A Policy Framework for Commissioning Cancer Services, London: Department of Health

  4. Cassileth B, Zupkis R and Sutton-Smith Kea (1980) Information and participation preferences among cancer patients. Ann Intern Med 92: 832–836

  5. Charles C, Redko C, Whelan T, Gafni A and Reyno L (1998) Nothing is no choice: lay constructions of treatment decision making among women with breast cancer. Sociol Health and Illness 20: 71–95

  6. Davis MA, Hoffman JR and Hsu J (1996) Impact of patient acuity on preference for information and autonomy in decision making. Acad Emerg Med 6: 781–785

  7. Degner LF, Kristjanson LJ and Bowman D (1997) Information needs and decisional preferences in women with breast cancer. JAMA 277: 1485–1492

  8. Eysenbach G, Sa ER and Diepgen TL (1999) Shopping around the internet today and tomorrow: towards the millennium of cybermedicine. Br Med J 319: 1–5

  9. Fallowfield LJ (1997) Truth sometimes hurts but deceit hurts more. Communication with the Cancer Patient. 809: Annals of the New York Academy of Sciences, 525–535

  10. Fallowfield L and Jenkins V (1999) Effective communication skills are the key to good cancer care. Eur J Can 35: 1592–1597

  11. Fallowfield L, Hall A, Maguire G and Baum M (1990) Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial. Br Med J 301: 575–580

  12. Fallowfield L, Ford S and Lewis S (1994) No news is not good news: Information preferences of patients with cancer. Psycho-oncology 4: 197–202

  13. Fallowfield L, Lipkin M and Hall A (1998) Teaching senior oncologists communication skills: results from phase I of a comprehensive longitudinal program in the United Kingdom. J Clin Oncol 16: 1961–1968

  14. Farnill D and Inglis S (1994) Patients' desire for information about anaesthesia: Australian attitudes. Anaesthesia 49: 162–164

  15. Fielding R and Hung J (1995) Preference for information and treatment-decision making involvement in cancer care among a Hong Kong Chinese population. Psycho-Oncology 5: 321–329

  16. Greene MG, Adelman R, Charon R and Hoffman S (1986) Ageism in the medical encounter: An exploratory study of the language and behaviour of doctors with their old and young patients. Language and communication 6: 113–124

  17. Leydon G, Boulton M and Moynihan C (2000) Cancer patients' information needs and information seeking behaviour: in depth interview study. Br Med J 320: 909–913

  18. Luker KA, Beaver K, Leinster SJ and Owens RG (1996) Information needs and sources of information for women with breast cancer: a follow-up study. J Adv Nurs 23: 487–495

  19. Maguire P, Booth K, Elliott C and Jones B (1996) Helping health professionals involved in cancer care acquire key interviewing skills – the impact of workshops. Eur J of Can 32A: 1486–1489

  20. Mayes N and Pope C (1996) Rigour and qualitative research. Mayes N, Pope C (eds) Qualitative Research in Health Care, London: British Medical Journal Publishing Group

  21. Meredith C, Symonds P and Webster L (1996) Information needs of cancer patients in West Scotland; cross sectional survey of patients' views. Br Med J 313: 724–726

  22. National Cancer Alliance (1996). Patient – centred cancer services? what patients say, Oxford: 6 National Cancer Alliance

  23. NHS Executive (1998). Clinical Guidelines: using clinical guidelines to improve patient care in the NHS, Leeds: NHS Executive

  24. Razavi D and Delvaus N (1997) Communication skills and psychological training in oncology. Eur J Can 33: S15–S21

  25. Thompson C (1999) Cybermedicine. Br Med J 319: 1294

  26. Wilkinson S, Roberts A and Aldridge J (1998) Nurse-patient communication in palliative care: an evaluation of a communication skills programme. Palliative Med 12: 13–22

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  1. Department of Oncology, Royal Free and University College London Medical School, 48 Riding House Street, London, W1P 7PL, UK

    • V Jenkins
    • , L Fallowfield
    •  & J Saul

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https://doi.org/10.1054/bjoc.2000.1573

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