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. 2001 Jan 1;84(1):48–51. doi: 10.1054/bjoc.2000.1573

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

V Jenkins 1, L Fallowfield 1, J Saul 1
PMCID: PMC2363610  PMID: 11139312

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 http://www.bjcancer.com

Keywords: information needs, cancer, patients preferences

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Selected References

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  1. Boudioni M., McPherson K., Mossman J., Boulton M., Jones A. L., King J., Wilson E., Slevin M. L. An analysis of first-time enquirers to the CancerBACUP information service: variations with cancer site, demographic status and geographical location. Br J Cancer. 1999 Jan;79(1):138–145. doi: 10.1038/sj.bjc.6690023. [DOI] [PMC free article] [PubMed] [Google Scholar]
  2. Cassileth B. R., Zupkis R. V., Sutton-Smith K., March V. Information and participation preferences among cancer patients. Ann Intern Med. 1980 Jun;92(6):832–836. doi: 10.7326/0003-4819-92-6-832. [DOI] [PubMed] [Google Scholar]
  3. Davis M. A., Hoffman J. R., Hsu J. Impact of patient acuity on preference for information and autonomy in decision making. Acad Emerg Med. 1999 Aug;6(8):781–785. doi: 10.1111/j.1553-2712.1999.tb01206.x. [DOI] [PubMed] [Google Scholar]
  4. Degner L. F., Kristjanson L. J., Bowman D., Sloan J. A., Carriere K. C., O'Neil J., Bilodeau B., Watson P., Mueller B. Information needs and decisional preferences in women with breast cancer. JAMA. 1997 May 14;277(18):1485–1492. [PubMed] [Google Scholar]
  5. Eysenbach G., Sa E. R., Diepgen T. L. Cybermedicine. Interview by Clare Thompson. BMJ. 1999 Nov 13;319(7220):1294–1294. doi: 10.1136/bmj.319.7220.1294. [DOI] [PMC free article] [PubMed] [Google Scholar]
  6. Fallowfield L. J., Hall A., Maguire G. P., Baum M. Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial. BMJ. 1990 Sep 22;301(6752):575–580. doi: 10.1136/bmj.301.6752.575. [DOI] [PMC free article] [PubMed] [Google Scholar]
  7. Fallowfield L., Jenkins V. Effective communication skills are the key to good cancer care. Eur J Cancer. 1999 Oct;35(11):1592–1597. doi: 10.1016/s0959-8049(99)00212-9. [DOI] [PubMed] [Google Scholar]
  8. Fallowfield L., Lipkin M., Hall A. Teaching senior oncologists communication skills: results from phase I of a comprehensive longitudinal program in the United Kingdom. J Clin Oncol. 1998 May;16(5):1961–1968. doi: 10.1200/JCO.1998.16.5.1961. [DOI] [PubMed] [Google Scholar]
  9. Fallowfield Lesley, Ford Sarah, Lewis Shon. No news is not good news: information preferences of patients with cancer. Psychooncology. 1995 Oct;4(3):197–202. doi: 10.1002/pon.2960040305. [DOI] [PubMed] [Google Scholar]
  10. Farnill D., Inglis S. Patients' desire for information about anaesthesia: Australian attitudes. Anaesthesia. 1994 Feb;49(2):162–164. doi: 10.1111/j.1365-2044.1994.tb03379.x. [DOI] [PubMed] [Google Scholar]
  11. Greene Michele G., Adelman Ronald, Charon Rita, Hoffman Susie. Ageism in the medical encounter: an exploratory study of the doctor-elderly patient relationship. Lang Commun. 1986;6(1-2):113–124. doi: 10.1016/0271-5309(86)90010-8. [DOI] [PubMed] [Google Scholar]
  12. Hughes G., Fitzharris P. Managing acute anaphylaxis. New guidelines emphasise importance of intramuscular adrenaline. BMJ. 1999 Jul 3;319(7201):1–2. doi: 10.1136/bmj.319.7201.1. [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Leydon G. M., Boulton M., Moynihan C., Jones A., Mossman J., Boudioni M., McPherson K. Cancer patients' information needs and information seeking behaviour: in depth interview study. BMJ. 2000 Apr 1;320(7239):909–913. doi: 10.1136/bmj.320.7239.909. [DOI] [PMC free article] [PubMed] [Google Scholar]
  14. Luker K. A., Beaver K., Leinster S. J., Owens R. G. Information needs and sources of information for women with breast cancer: a follow-up study. J Adv Nurs. 1996 Mar;23(3):487–495. doi: 10.1111/j.1365-2648.1996.tb00010.x. [DOI] [PubMed] [Google Scholar]
  15. Maguire P., Booth K., Elliott C., Jones B. Helping health professionals involved in cancer care acquire key interviewing skills--the impact of workshops. Eur J Cancer. 1996 Aug;32A(9):1486–1489. doi: 10.1016/0959-8049(96)00059-7. [DOI] [PubMed] [Google Scholar]
  16. Meredith C., Symonds P., Webster L., Lamont D., Pyper E., Gillis C. R., Fallowfield L. Information needs of cancer patients in west Scotland: cross sectional survey of patients' views. BMJ. 1996 Sep 21;313(7059):724–726. doi: 10.1136/bmj.313.7059.724. [DOI] [PMC free article] [PubMed] [Google Scholar]
  17. Razavi D., Delvaux N. Communication skills and psychological training in oncology. Eur J Cancer. 1997 Jul;33 (Suppl 6):S15–S21. doi: 10.1016/s0959-8049(97)00195-0. [DOI] [PubMed] [Google Scholar]
  18. Wilkinson S., Roberts A., Aldridge J. Nurse-patient communication in palliative care: an evaluation of a communication skills programme. Palliat Med. 1998 Jan;12(1):13–22. doi: 10.1191/026921698675034697. [DOI] [PubMed] [Google Scholar]

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