Most patients with cancer want as much information as possible appropriate to their personal needs and circumstances.1,2 We surveyed the views of cancer patients entering a randomised trial of computer based information.3 We examined their need for information and their satisfaction with information received and how these varied with their demographic, social, and psychological characteristics.
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 cervical 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,2 a hospital anxiety and depression scale,4 the newspaper patients read, and deprivation category (derived from postcode).5 Using χ2 tests and multiple logistic regression analysis, 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 (tabloid v broadsheet), deprivation category, and anxiety and 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.
Four out of five patients wanted as much information as possible. In univariate analysis, newspaper read, deprivation category, having a connection with the health service, age, and time since diagnosis were predictors of information need. In multiple logistic regression analysis, however, only newspaper read and age remained predictors.
One in five patients were not satisfied with the information given. Univariate analysis showed that dissatisfied 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.
Patients with breast cancer and readers of 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 would like to have been told. Patients most commonly required further information on the effects of treatment and prognosis and recovery.
Comment
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,2 we found that most cancer 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 of newspaper read was a better indicator of information need. Few studies have used this intuitively obvious indicator, and we suggest its use, among older patients, in both clinical practice and research.
Table.
Percentage (number) of cancer patients agreeing with various statements about the information they had received before starting radiotherapy
| Given information from few people (v many) | Not given much information | Many differences in information given (v few or none) | Would like to have been given other information | Non-committal or dissatisfied with information given (v satisfied) | |
|---|---|---|---|---|---|
| Age: | |||||
| <60 | 73 (193) | 49 (112) | 18 (45) | 36 (93) | 21 (56)† |
| ⩾60 | 82 (207)* | 59 (119) | 13 (31) | 32 (77) | 17 (43) |
| Sex: | |||||
| Female | 71 (240) | 46 (131) | 17 (55) | 33 (109) | 17 (58) |
| Male | 89 (160)* | 69 (100)* | 12 (21) | 35 (61) | 23 (41)† |
| Cancer site: | |||||
| Breast | 70 (213) | 44 (116) | 16 (48) | 33 (99) | 17 (52) |
| Other | 89 (187)*† | 69 (115)*† | 14 (28) | 35 (71) | 23 (47) |
| Time since diagnosis (months): | |||||
| ⩽3 | 79 (205) | 57 (118) | 13 (32) | 29 (73) | 19 (48) |
| 4–12 | 73 (162) | 48 (94) | 14 (29) | 38 (82) | 19 (41) |
| >12 | 97 (28)* | 64 (16) | 10 (3) | 43 (12) | 30 (9) |
| Where diagnosed: | |||||
| Teaching hospital | 81 (137) | 51 (75) | 13 (21) | 35 (57) | 18 (30) |
| Other hospital | 77 (215) | 56 (133) | 16 (43) | 35 (95) | 21 (56) |
| Elsewhere | 70 (45) | 47 (22) | 20 (12) | 25 (15) | 18 (12) |
| Deprivation category (Carstairs category): | |||||
| Affluent (1+2) | 79 (84) | 42 (38) | 21 (22) | 37 (39) | 19 (20) |
| Middle (3+4) | 76 (159) | 52 (94) | 14 (28) | 33 (67) | 17 (35) |
| Deprived (5-7) | 79 (153) | 62 (95)*† | 14 (26) | 34 (64) | 23 (44) |
| Newspaper read: | |||||
| Broadsheet | 73 (143) | 44 (71) | 16 (31) | 34 (66) | 16 (32) |
| Tabloid | 81 (211)† | 62 (137)*† | 14 (35) | 33 (85) | 21 (54) |
| Connection with NHS: | |||||
| Yes | 73 (149) | 46 (77) | 16 (31) | 35 (68) | 18 (36) |
| No | 80 (221) | 59 (137)* | 15 (39) | 33 (90) | 21 (56) |
| Hospital anxiety and depression scale: | |||||
| Anxiety: | |||||
| No | 81 (261) | 53 (141) | 12 (38) | 28 (83) | 16 (49) |
| Borderline | 73 (75) | 52 (44) | 14 (14) | 35 (34) | 23 (23) |
| Yes | 71 (62) | 58 (44) | 29 (24)*† | 54 (46)*† | 27 (23) |
| Depression: | |||||
| No | 77 (346) | 51 (190) | 13 (58) | 31 (134) | 17 (74) |
| Borderline | 80 (37) | 64 (27) | 37 (15)* | 44 (20) | 37 (16) |
| Yes | 88 (15) | 86 (12)* | 19 (3) | 71 (12)* | 50 (8)*† |
| Attitude to information: | |||||
| As much as possible | 76 (324) | 51 (180) | 16 (66) | 36 (148)*† | 21 (88) |
| Only good news or no details | 84 (67) | 67 (43)* | 12 (9) | 20 (15) | 12 (9) |
| All patients | 78 (400/516) | 54 (231/430) | 15 (76/494) | 34 (170/503) | 19 (99/509) |
Significant predictors (P<0.01) in χ2 analysis. †Significant predictors (P<0.05) in multiple logistic regression analysis.
Acknowledgments
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 made available unpublished protocols and papers; and colleagues in the University of Glasgow and the Beatson Oncology Centre who commented on the manuscript.
Footnotes
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.
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