Jameson A, Paris C, Tasso C, eds. Proceedings of the sixth international con›
ference on user modelling . New York: Springer Wien, 1997:107›18.
10 Kreuter MW,Strecher VJ.Do tailored behavior change messages enhance
the effectiveness of health risk appraisal? Results from a randomized trial.
Health Educ Res 1996;11:97›105.
11 Department of Health. NHS information for health . London: DoH, 1998.
12 Hathaway D. Effect of preoperative instruction on postoperative
outcomes: a meta›analysis.Nurs Res1986;35:269›75.
13 Schwartz LP, Brenner ZR. Critical care unit transfer: reducing patient
stress through nursing interventions. Heart Lung1979;8:540›7.
14 Gilhooly MLM, McGhee SM. Medical records: practicalities and
principles of patient possession. J Med Ethics 1991;17:138›43.
15 Hinds C, Streater A, Mood D. Functions and preferred methods of
receiving information related to radiotherapy.
16 Jones RB, Pearson J, McGregor S, Cawsey A, Barrett A, Gilmour H, et al.
Cross sectional survey of patients’ satisfaction with information about
17 Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta
Psychiatr Scand 1983; 67:361›70.
18 Watson M, Greer S, Young J, Inayat Q, Burgess C, Robertson B. Develop›
ment of a questionnaire measure of adjustment to cancer:the MAC scale.
Psychol Med 1988;18:203›9.
19 Jones RB, Knill›Jones RP.Electronic patient record project:direct patient input
to the record. Report for the Strategy Division of the Information Management
Group of the NHS ME . Glasgow: University of Glasgow, 1994.
20 Glimelius B, Birgegrd G, Hoffman K, Kvale G, Sjoden P. Information to
and communication with cancer patients:improvements and psychologi›
cal correlates in a comprehensive care program for patients and their
relatives.Patient Educ Counsel 1995;25:171›82.
21 Luker KA, Beaver K, Leinster SJ, Owens RG. Information needs and
sources of information for women with breast cancer: a follow›up study. J
22 Jones RB, Navin LM, Murray KJ. Use of a community›based touch›screen
public›access health information system.Health Bull 1993;51:34›42.
23 McGarry E, Jones R, Cowan B, White J. A multimedia system for person›
alised treatment of anxiety in primary care. In: Richards B, ed. Current
perspectives in healthcare computing .Weybridge:BJHC Books,1998:277›85.
24 Morton AR, Patterson L, Jones R, Atkinson JM, Coia D. Personalised
patient information for patients with schizophrenia living in the commu›
nity. In: Richards B, ed. Current perspectives in healthcare computing
Weybridge: BJHC Books, 1998: 94›104.
25 Bailey AJ, Parmar MKB, Stephens RJ for the CHART Steering
Committee. Patient›reported short›term and long›term physical and
psychologic symptoms: results of the continuous hyperfractionated
accelerated radiotherapy (CHART) randomised trial in non›small›cell
lung cancer.J Clin Oncol1998;16:3082›93.
26 Rapoport Y, Kreitler S, Chaitchik S, Algor R, Weissler K. Psychosocial
problems in head›and›neck cancer patients and their change with time
since diagnosis.Ann Oncol1993;4:69›73.
27 Hall A, A’Hern R, Fallowfield L. Are we using appropriate self›report
questionnaires for detecting anxiety and depression in women with early
breast cancer?Eur J Cancer 1999:35:79›85.
28 Dunn SM, Butow PN, Tattersall MHN, Jones QI, Sheldon JS, Taylor JJ, et
al. General information tapes inhibit recall of the cancer consultation.
29 Tattersall MHN, Butow PN, Griffin AM, Dunn SM. The take home
message: patients prefer consultation audiotapes to summary letters. J
30 Miller SM. Monitoring versus blunting styles of coping with cancer influ›
ence the information patients want and need about their disease: impli›
cations for cancer screening and management.Cancer1995;76:167›77.
31 Street RL Jr, Voigt B, Geyer C Jr, Manning T, Swanson GP. Increasing
patient involvement in choosing treatment for early breast cancer. Cancer
32 McHugh P, Lewis S, Ford S, Newlands E, Rustin G, Coombes C, et al. The
efficacy of audiotapes in promoting psychological well›being in cancer
patients: a randomised, controlled trial. Br J Cancer 1995;71:388›92.
(Accepted 11 October 1999)
Cross sectional survey of patients’ satisfaction with
information about cancer
Ray Jones, Janne Pearson, Sandra McGregor, W Harper Gilmour, Jacqueline M Atkinson,
Ann Barrett, Alison J Cawsey, Jim McEwen
Most patients with cancer want as much information as
possible appropriate to their personal needs and
patients entering a randomised trial of computer based
and their satisfaction with information received and
how these varied with their demographic, social, and
1 2We surveyed the views of cancer
3We examined their need for information
Patients, methods, and results
Eligible patients were those planned to receive radical
radiotherapy, who knew their diagnosis, were without
visual or mental handicap, and were without severe
pain or symptoms causing distress. Of 715 patients
asked to take part, 190 refused, 25 stating they did not
want more information. Of the 525 participants, 309
had breast cancer,129 had prostate cancer,22 had cer›
vical cancer, and 65 had laryngeal cancer.
Data were collected at the recruitment interview,
from a questionnaire the patients completed at home
shortly after, and from their case notes. Data included
the information patients would like,
and depression scale,
and deprivation category (derived from postcode).
we compared the patients’ sources and perceived
quantity of information received and their satisfaction
with this information, as binary variables, with their
age, sex, cancer site, newspaper read (tabloidv
broadsheet), deprivation category, and anxiety and
2a hospital anxiety
4the newspaper patients read,
2tests and multiple logistic regression analysis,
depression scores (table). Information need2(“as much
as possible”v other) was considered both as a response
variable and as a predictor of sources and satisfaction.
connection with the health service, age, and time since
diagnosis were predictors of information need. In mul›
newspaper read and age remained predictors.
One in five patients were not satisfied with the
information given. Univariate analysis showed that dis›
satisfied patients were much more likely to be
depressed and were marginally more likely to be
anxious or to want as much information as possible. In
multiple logistic regression age, sex, and depression
were predictors of dissatisfaction. Fifteen per cent of
patients said there had been many differences in what
they had been told by health professionals. Multiple
logistic regression showed that these patients were
more likely to be anxious.
broadsheets had received more information and from
more people than patients with other cancers but were
not significantly more likely to be satisfied.The location
of the clinician who gave the diagnosis had no effect on
how much information patients had received. Younger
depressed patients who wanted as much information
as possible were less likely to be satisfied even though
they had received more information than others. A
third of patients said there were other things that they
Information in practice
senior lecturer in
W Harper Gilmour
senior lecturer in
senior lecturer in
professor of public
professor of radiation
BMJ VOLUME 3196 NOVEMBER 1999 www.bmj.com
would like to have been told. Patients most commonly
treatment and prognosis and recovery.
One in five of 525 patients starting radiotherapy were
not satisfied with the information they had received.
Breast cancer patients were better provided with
information than patients with other cancers but were
not necessarily more satisfied with it as a result. More
should be done to help patients with other cancers
obtain suitable information.
Three of the outcome measures were associated
with anxiety or depression. The nature of the relation
of anxiety, depression, and information among cancer
patients would be worthy of further study.
As in other work,
patients wanted as much information as possible.
However, our percentage slightly overestimates this, as
refusal to take part in the study might indicate lack of
desire for further information.Although those patients
living in affluent areas wanted more information, type
information need.Few studies have used this intuitively
obvious indicator, and we suggest its use, among older
patients, in both clinical practice and research.
2we found that most cancer
We thank the consultants (particularly Nick Reed and Tim
Habeshaw, who were directors of the Beatson Oncology Centre
during the study), other medical staff, cancer nurse specialists,
radiographers, medical records staff, and other staff at the
Beatson Oncology Centre for their collaboration with this
project; the patients who took part in the study; Lynn Naven,
who worked as a locum for SMcG during three months’ sick
leave; Ed Carter; Ross Morton and Keith Murray, who helped
with various aspects of computing; Charles Gillis and Cathy
Meredith, who advised on research design; Sally Tweddle, who
colleagues in the University of Glasgow and the Beatson Oncol›
ogy Centre who commented on the manuscript.
Contributors: RJ had the original idea for the study,
designed the study, was the main grant holder, supervised the
research assistants, analysed the data, and wrote the paper. JP
carried out the pilot study, contributed to the design, was a
research assistant with day to day responsibility for data collec›
tion and running the study, undertook preliminary analysis, and
contributed to final analysis and editing of paper. SMcG
contributed to the design of the study, was a research assistant
with day to day responsibility for data collection and running
the study, undertook some preliminary analysis, and edited the
paper. WHG advised on design of the study and analysis of the
data and edited the paper. JMA advised on the design of the
study and choice of psychological measures, edited the paper,
and was a grant holder. AB discussed the original idea, set up
opportunities for the pilot study and main study, contributed to
the design of the study,edited the paper,and was a grant holder.
AJC discussed the original idea, contributed to the design of the
study, discussed the analysis of data, edited the paper, and was a
grant holder. JMcE discussed the original idea, set up opportu›
nities for the pilot study and main study, edited the paper, and
was a grant holder. RJ and AB are guarantors for the study.
Funding: Scottish Office Home and Health Department
grant number K/OPR/2/2/D248. The views expressed in this
paper are those of the authors and do not represent the views of
the Scottish Office.
Competing interests: None declared.
protocolsand papers; and
1 National Cancer Alliance. Patient›centred cancer services? What patients say
Oxford: National Cancer Alliance, 1996.
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.BMJ1996;313:724›6.
Jones R, Pearson J, McGregor S, Cawsey AJ, Barrett A, Craig N, et al. Ran›
domised trial of personalised computer based information for cancer
Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta
Psychiatr Scand 1983;67:361›70.
Carstairs V, Morris R. Deprivation and health in Scotland . Aberdeen: Aber›
deen University Press, 1991.
(Accepted 11 October 1999)
Percentage (number) of cancer patients agreeing with various statements about the
information they had received before starting radiotherapy
given (v few
Would like to
Time since diagnosis (months):
Deprivation category (Carstairs category):
Connection with NHS:
Hospital anxiety and depression scale:
Attitude to information:
As much as possible
Only good news or
78 (400/516)54 (231/430)15 (76/494)34 (170/503)19 (99/509)
*Significant predictors (P<0.01) in2analysis. †Significant predictors (P<0.05) in multiple logistic
Bill Gates’s strength
The fox knows many things; the hedgehog knows
one big thing; the 800 pound gorilla doesn’t give a
shit what anybody knows. [Bill] Gates’s great
strength was in combining all these attributes.
John Lanchester,London Review of Books
September 1999, p 5.
Information in practice
Alison J Cawsey
lecturer in computer
BMJ VOLUME 3196 NOVEMBER 1999www.bmj.com