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

Information needs of patients with cancer: results from a large study in UK cancer centres British Journal of Cancer(2001) 84(1), 48–51 © 2001 Cancer Research Campaign doi: 10.1054/ bjoc.2000.1573, available online at http://www.idealibrary.com on http://www.bjcancer.com Information needs of patients with cancer: results from a large study in UK cancer centres V Jenkins, L Fallowfield and J Saul Royal Free and University College London Medical School, Department of Oncology, 48 Riding House Street, London W1P 7PL, UK Summary 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. Re sults 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 unten able. © 2001 Cancer Research Campaign http://www.bjcancer.com Keywords: information needs; cancer; patients preferences Despite the publication of several quantitative studies, at different stages during the illness (Leydon et al, 2000); (Fallowfield et al, 1994; Meredith et al, 1996; National Cancer although precise methodological detail is lacking about such Alliance, 1996) some health professionals remain concerned about basic issues as the representativeness of the sample which the amount and type of information to give to a patient with hampers interpretation of the study. cancer. Would for example, the elderly widow with cancer have We present results from a survey of a heterogeneous sample of similar information needs to the 50-year-old professional woman 2331 patients attending out-patient departments throughout the with cancer? Should clinicians edit the information that they give United Kingdom for consultations about cancer and its treatment, based on intuition and past experience or should they do so only that unequivocally answers the question of how much information according to patients’ stated preferences? patients prefer to have from their doctors. We know that clinicians tend to underestimate the amount of information that patients require (Fallowfield et al, 1994; Degner PARTICIPANTS AND METHODS et al, 1997) and while fewer these days are reluctant to use the word cancer, many still believe that disclosure should only be As part of a study evaluating a communication skills training made to those patients who actively seek it. Unfortunately unless model for clinicians, we collected information preferences from a invited to ask directly, patients rarely raise important questions heterogeneous sample of patients attending out-patient clinics during a consultation. Many patients assume that the doctor within the UK. 34 hospitals were involved in the study, including would have told them everything relevant, others worry that they large teaching hospital cancer centres and smaller district general will appear foolish if they reveal their ignorance by asking ques- hospitals. MREC and LREC was granted for the patients’ assess- tions, and some feel that they have already taken up too much of ments. Inclusion criteria were broad and comprised adults who the busy doctor’s time (Fallowfield and Jenkins, 1999). At least were about to see a medical, clinical or surgical oncologist for a two small studies of non-representative groups of patients consultation about their cancer diagnosis, treatment, prognosis or (Cassileth et al, 1980; Fallowfield et al, 1994) have shown that tests and routine follow-up visits. patients’ information needs are substantial. This finding was also 2681 patients were approached by a member of the research validated in a small, but carefully stratified, more representative team whilst waiting in out-patient clinics to see the doctor and sample of 250 patients with cancer (Meredith et al, 1996). In con- given an information sheet explaining the study. 85% (2331) gave trast, a recently published qualitative study of 17 patients, sug- written informed consent to participate. The most common gested that some may prefer to avoid disease related information reasons given for non-participation were a lack of English, poor eye-sight and concerned relatives. Table 1 lists the tumour site details, aim of treatment and patient characteristics. The question- Received 9 June 2000 naire is one that is widely used throughout the UK and US in Revised 16 September 2000 previously published studies (Fallowfield et al, 1994; Meredith Accepted 11 October 2000 et al, 1996). It consists of two parts; in part one, patients were asked Correspondence to: V Jenkins to choose a statement that best described their general attitudes 48 Information needs of patients with cancer49 Table 1 Background details of patients ( n = 2331) CROSS TABULATION OF RESPONSES Characteristics Sample Age Age (years) There was a significant association between age and the amount of <=30 113 (4.8%) information required by the patient. Although a large proportion of 31–50 580 (24.9%) patients over 70 years of age wanted as much information as 51–70 1081 (46.4%) possible (81%), significantly more of the older group preferred to >70 440 (18.9%) Unknown 117 (5%) leave details up to the doctor (13% 58/440 v 6.5% 110/1774; chi Sex square = 26.01, df = 2, P < 0.0001). In addition, there were signific- Men 892 (38.3%) ant differences in response to the specific questions as shown in Women 1439 (61.7%) Table 2, although it should be emphasized that the majority of the Marital status older patients did want detailed information. Partner 1590 (68.2%) No partner 612 (26.3%) Unknown 129 (5.5%) Sex Tumour site Breast 585 (25.1%) Although the majority of patients of both sexes wanted specific Gastro-intestinal/colorectal 418 (17.9%) details of information, there were two areas where the younger Haematological 181 (7.8%) women (70 years and under) were significantly different. They Lung 164 (7.0%) Gynaecological 147 (6.3%) preferred to know the name of the illness, (974/1056 [92%] v Urological 145 (6.2%) 588/660 [89%], chi square = 4.9, P < 0.02) and all the possible avail- Skin 80 (3.4%) able treatments 1021/1059 [96%] v 621/665 [93]%, chi square = 8.26, CNS 64 (2.7%) P < 0.004). Head & Neck 57 (2.4%) Unknown Primary 164 (7.0%) Other 326 (14.0%) Aim of treatment Type of treatment Curative 940 (40.3%) There were no differences in specific information needs between Palliative 841 (36.1%) those patients receiving curative or palliative treatment or for Remission 215 (9.2%) those who were in remission. Not Specified 335 (14.4%) Cancer site There were no differences in information needs between the different cancer sites. This was despite the fact that the largest and preferences about information concerning their illness. Part cancer site in the sample was women with breast cancer. two consisted of a list of 7 different more specific kinds of informa- tion about illness and treatment and patients were asked to indicate whether they 1) had an absolute need, 2) would like to have or 3) The specific information needs of patients who want to would prefer not to have that information. Answers to the ques- leave details up to the doctor and ‘good news’ patients tions were cross-tabulated according to the patient’s age, sex, aim Although a small percentage of the sample stated in part one that of treatment and cancer site. Statistical significance was assessed they preferred to leave everything up to the doctor or wanted only using the chi square test. good news (7.7% and 5.4% respectively), when prompted by the items in part two of the questionnaire, the majority of patients in RESULTS both groups expressed a need for specific information concerning illness and treatment. Table 3 shows the responses of all 3 groups Of the 2331 patients who participated in the study, 940 (40%) were with the data from ‘absolutely need’ and ‘would like to have’ receiving curative treatment, 841 (36%) palliative treatment, 215 collapsed into one category. (9%) were in remission and for 335 (14%) treatment intent was still uncertain. DISCUSSION Part 1 The results from this large survey support previous research that In response to the first question, on patients’ general attitudes to most patients want as much information as possible about treat- information, 2027 (87%) preferred to have as much information as ments and illness. An extremely important finding was that 98% of possible, both good and bad. 125 (5.4%) preferred to have addi- patients needed to know whether the illness was cancer. This obser- tional information only if it was good news and 179 (7.7%) vation should convince health professionals that they should not preferred to leave it up to the doctor. withhold the truth about diagnosis on the grounds that many patients prefer not to know. Furthermore 95% wished to know what their chances of cure were, so information about prognosis should not be Part 2 avoided either (Fallowfield et al, 1998). Our findings contrast with a Table 2 shows an overwhelming need by patients for specific recent qualitative study of 17 patients which suggested that patients’ information concerning different aspects of illness and treatment. strategies for coping with cancer suppress their wish for, and efforts Only 42/2231 (1.9%) did not want to know if they had cancer. to obtain information at different stages of their illness. Qualitative © 2001 Cancer Research Campaign British Journal of Cancer (2001) 84(1), 48–51 50 V Jenkins et al Table 2 Responses of 2331 patients to specific information needs ( n and valid %) Question Total Sample  70 years of > 70 years of age age Absolutely Would like Do not want Absolutely need Absolutely need chi square need to have to have and would like and would like P value What the specific medical name of 801 1193 254 1562/1716 334/419 43.34 the illness is. (35.6%) (53.1%) (11.3%) (91%) (79.7%) P = 0.0001 Whether or not it is cancer. 1348 855 42 1684/1711 408/421 4.18 (60%) (38.1%) (1.9%) (98.4%) (96.9%) P = 0.04 When you are having treatment 876 1148 203 1566/1701 359/416 13.47 what the week by week progress is. (39.3%) (51.5%) (9.1%) (92.1%) (86.3%) P = 0.0002 What the chances of cure are. 1195 920 104 1626/1696 384/412 5.32 (53.9%) (41.5%) (4.7%) (95.9%) (93.2%) P = 0.021 What all the possible treatments 1223 897 135 1642/1724 373/418 21.78 are. (54.2%) (39.8%) (6%) (95.2%) (89.2%) P = 0.0001 What all the possible side effects of 1363 840 62 1692/1729 403/422 7.46 treatment are. (60%) (37.1%) (2.8%) (97.9%) (95.5%) P = 0.006 How the treatment works to treat 1027 1042 183 1612/1719 355/420 39.06 the illness. (45.6%) (46.3%) (8.1%) (93.8%) (84.5%) P = 0.0001 Table 3 Responses to specific information needs as a function of general preference for information All information Only good news Leave up to Dr. Question Absolutely need Absolutely need Absolutely need and would like and would like and would like Specific name of the illness 1822/1962 (93%) 79/118 (67%) 93/168 (55%) Whether or not it is cancer 1930/1961 (98%) 108/117 (92%) 145/167 (87%) Week by week progress 1839/1949 (94%) 82/116 (71%) 103/162 (64%) Chances of cure 1909/1943 (98%) 88/115 (77%) 118/161 (73%) All the possible treatments 1919/1969 (97%) 92/119 (77%) 109/167 (65%) All the possible side effects 1956/1975 (99%) 112/121 (93%) 135/169 (80%) How the treatment works 1887/1965 (96%) 82/121 (68%) 100/166 (60%) methods can provide a different perspective but they must be treatment and side effects, especially whether or not they had cancer. rigorous (Mayes and Pope, 1996). It would be wrong for health Negative stereotypes of the elderly are common among health care professionals to alter their practice of information giving based on professionals (Greene et al, 1986). If clinicians assume that there is such limited results. The article had so few details about the methodo- an increase in passivity and helplessness in the elderly patient, then it logy utilized for sample selection and the manner in which data were is more likely that these negative aspects will prevail in the consulta- collected and analysed to permit independent judgement about the tion. This leads to a doctor-centred rather than patient-centred inter- conclusions. Instead of still questioning the need for giving more action, with the doctor in control of information giving. information we need to be developing ways to provide adequate Many older people still have a deferential attitude towards information in a flexible and sensitive manner. doctors, particularly when meeting them in a medical setting; thus The avoidance of information often stems from myths and our findings demonstrate the need for doctors to actively encourage misunderstandings about the disease which doctors could correct such patients to ask questions. These patients may have grown up in with clearer explanations and thus alleviate distress. The majority a culture where it was considered impolite to question or ask further of patients want to know, as we have shown but may be afraid to information from a ‘busy’ specialist. It would be surprising to still ask. Cross-sectional analysis of our data showed no evidence for find this attitude in 10 or 20 years time, as medical information different information needs whether patients were awaiting diag- becomes more accessible to the general public. Clinicians have nosis, having radical treatment, were in remission or being treated already commented on the increase in the number of ‘internet palliatively. However, to ensure that patients’ true views and prefer- patients’ attending clinics, who are sometimes more informed ences are met throughout the disease trajectory, doctors need to about new treatments than the doctor (Thompson, 1999). adopt flexible policies of regularly checking information needs Recent literature repeatedly states that patients, whatever age, want more directly with their patients during their consultations. to be kept well informed about their illness. The findings are similar The attitudes and beliefs held by patients and doctors clearly influ- for the emergency patient in the USA (Davis et al, 1999), the pre- ence the consultation. The notion that the older patient prefers the operative patient in Australia (Farnhill and Inglis, 1994) the cancer doctor to determine how much information to provide is only weakly patient in Hong Kong (Fielding and Hung, 1995) and the woman with upheld by the study. Although significantly more of the older (i.e., breast cancer in Liverpool (Luker et al, 1996) or Canada (Degner et al, those over 70 years) patients indicated a preference to leave details 1997). However, although older patients have a high desire for infor- up to the doctor, most (98%) still wanted specific information about mation, some data suggest that they have less desire for participation British Journal of Cancer (2001) 84(1), 48–51 © 2001 Cancer Research Campaign Information needs of patients with cancer51 in decisions about treatments and management (Charles et al, 1998). to data analysis and writing the paper. Tony Duffy, Anna Fair, Phillipa Some clinicians have difficulty separating decision making from a Jones, Sarah Ford Angela Hall and Denise Ratcliffe together with the need for information. Although some older people may want the authors were involved in the data collection for the study. doctor to make decisions about management, they still require infor- mation about the reasons for decisions affecting their care. Age remained a significant factor when examining whether men REFERENCES and women wanted the same detailed information. Younger Audit commission (1993) What seems to be the matter? Communication between women had a greater need for information about all the possible hospitals and patients. London:HMSO (NHS Report No 12) available treatments, a finding similar to that in a previously Boudioni M, McPherson K, Mossman J, et al. (1999) An analysis of first-time published study of a small but representative sample of patients in enquirers to the CancerBACUP information service: variations with cancer the West of Scotland (Meredith et al, 1996). More younger women site, demographic status and geographical location. Br J Cancer 79(1): 38–145 also preferred to know the specific name of the illness than men of Calman F and Hine D (1995) Expert Advisory Group on Cancer. A Policy Framework for Commissioning Cancer Services. London: Department of Health the same age group. Women as a group are more active in seeking Cassileth B, Zupkis R and Sutton-Smith Kea (1980) Information and participation information about health and illness, for example CancerBACUP preferences among cancer patients. Ann Intern Med 92: 832–836 reported an excess of female enquirers to their information Charles C, Redko C, Whelan T, Gafni A and Reyno L (1998) Nothing is no choice: helpline (Boudioni et al, 1999) and in a recent study, 27% of lay constructions of treatment decision making among women with breast cancer. Sociol Health and Illness 20: 71–95 women compared with 15% of men accessed the internet for Davis MA, Hoffman JR and Hsu J (1996) Impact of patient acuity on preference for health information at least once a week (Eysenbach et al, 1999). information and autonomy in decision making. Acad Emerg Med 6(8): 781–5 Information about treatment options, prognosis and side-effects Degner LF, Kristjanson LJ, Bowman D et al. (1997) Information needs and was considered particularly important by the patients surveyed by decisional preferences in women with breast cancer. JAMA 277(18): the National Cancer Alliance (1996). The majority of patients indi- 1485–1492 Eysenbach G, Sa ER and Diepgen TL (1999) Shopping around the internet today cated that they wanted to know the truth and to be offered informa- and tomorrow: towards the millennium of cybermedicine. Br Med J 319(13 tion in a language that they could understand. The Calman-Hine Nov): 1–5 Report (1995) recommends that the views and preferences of Fallowfield LJ (1997) Truth sometimes hurts but deceit hurts more. Communication patients, families and carers should be taken into account and with the Cancer Patient 809: Annals of the New York Academy of Sciences 525–535 patients given clear, understandable information. It has been shown Fallowfield L and Jenkins V (1999) Effective communication skills are the key to that providing patients with information according to their own good cancer care. Eur J Can 35 (11): 1592–1597 agendas facilitates psychological adaptation to illness and treat- Fallowfield L, Hall A, Maguire G and Baum M (1990) Psychological outcomes of ment (Fallowfield et al, 1990). One way to achieve this aim is different treatment policies in women with early breast cancer outside a clinical through good communication. Following the Calman-Hine report trial. Br Med J 301: (575–580) Fallowfield L, Ford S and Lewis S (1994) No news is not good news: Information into cancer services, attention to communication and information preferences of patients with cancer. Psycho-oncology 4: 197–202 giving is an explicit recommendation in the NHS Executive guide- Fallowfield L, Lipkin M and Hall A (1998) Teaching senior oncologists lines yet it is an area that is often under-resourced. In addition there communication skills: results from phase I of a comprehensive longitudinal is anecdotal evidence from hospitals and medical defence organiza- program in the United Kingdom. J Clin Oncol 16(5): 1961–8 Farnill D, Inglis S (1994) Patients’ desire for information about anaesthesia: tions that suggests poor communication and inadequate informa- Australian attitudes. Anaesthesia 49(2): 162–4 tion can result in complaints and litigation. Although discussions Fielding R and Hung J (1995) Preference for information and treatment-decision about diagnosis, prognosis and clinical trials in time pressured making involvement in cancer care among a Hong Kong Chinese population. clinics are difficult, health care professionals can learn effective Psycho-Oncology 5: 321–329 communication skills to assist them with these tasks (Maguire et al, 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 1996; Razavi and Delvaus, 1997; Wilkinson et al, 1998). It has their old and young patients. Language and communication 6: 113–124 been shown that doctors engage in more patient-centred behaviour Leydon G, Boulton M, Moynihan C, et al. (2000) Cancer patients’ information needs following training which means that they are more flexible and and information seeking behaviour: in depth interview study. Br Med J 320: responsive to patients’ needs (Fallowfield et al, 1998). 909–13 Luker KA, Beaver K, Leinster SJ and Owens RG (1996) Information needs and The results from this very large sample support previous find- sources of information for women with breast cancer: a follow-up study. J Adv ings and is much more representative of cancer patients as a Nurs 23(3): 487–95 whole. It shows that most patients want as much information as Maguire P, Booth K, Elliott C and Jones B (1996) Helping health professionals possible. Even though patients may indicate a general preference involved in cancer care acquire key interviewing skills – the impact of for good news only or to leave details up to the doctor, most when workshops. Eur J of Can 32A(9): 1486–1489 Mayes N and Pope C (1996) Rigour and qualitative research. In: Mayes N and Pope cued by the questionnaire about different aspects of disease and C (eds) Qualitative Research in Health Care London: British Medical Journal treatment, still want very specific information. Failure to disclose Publishing Group information out of a belief that patients prefer not to know is Meredith C, Symonds P, Webster L, et al. (1996) Information needs of cancer untenable and prior knowledge of patients’ specific information patients in West Scotland; cross sectional survey of patients’ views. Br Med J 313: 724–726 needs might assist doctors in tailoring their consultations to meet National Cancer Alliance (1996) Patient – centred cancer services? what patients patients’ actual not inferred requirements. say. Oxford: 6 National Cancer Alliance NHS Executive: (1998) Clinical Guidelines: using clinical guidelines to improve patient care in the NHS. Leeds: NHS Executive ACKNOWLEDGEMENTS Razavi D and Delvaus N (1997) Communication skills and psychological training in oncology. Eur J Can 33 (Suppl 6): S15–S21 We would like to thank all those who participated and the Cancer Thompson C (1999) Cybermedicine. Br Med J 319 (720): 1294 Research Campaign for funding the study. Wilkinson S, Roberts A and Aldridge J (1998) Nurse-patient communication in Contributors: Lesley Fallowfield had the original idea for the study palliative care: an evaluation of a communication skills programme. Palliative and Val Jenkins, Lesley Fallowfield and Jacky Saul each contributed Med 12: 13–22 © 2001 Cancer Research Campaign British Journal of Cancer (2001) 84(1), 48–51 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png British Journal of Cancer Springer Journals

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

Jenkins, V; Fallowfield, L; Saul, J
British Journal of Cancer , Volume 84 (1) – Jan 3, 2001
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Springer Journals
Copyright
Copyright © 2001 by The Author(s)
Subject
Biomedicine; Biomedicine, general; Cancer Research; Epidemiology; Molecular Medicine; Oncology; Drug Resistance
ISSN
0007-0920
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1532-1827
DOI
10.1054/bjoc.2000.1573
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Abstract

British Journal of Cancer(2001) 84(1), 48–51 © 2001 Cancer Research Campaign doi: 10.1054/ bjoc.2000.1573, available online at http://www.idealibrary.com on http://www.bjcancer.com Information needs of patients with cancer: results from a large study in UK cancer centres V Jenkins, L Fallowfield and J Saul Royal Free and University College London Medical School, Department of Oncology, 48 Riding House Street, London W1P 7PL, UK Summary 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. Re sults 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 unten able. © 2001 Cancer Research Campaign http://www.bjcancer.com Keywords: information needs; cancer; patients preferences Despite the publication of several quantitative studies, at different stages during the illness (Leydon et al, 2000); (Fallowfield et al, 1994; Meredith et al, 1996; National Cancer although precise methodological detail is lacking about such Alliance, 1996) some health professionals remain concerned about basic issues as the representativeness of the sample which the amount and type of information to give to a patient with hampers interpretation of the study. cancer. Would for example, the elderly widow with cancer have We present results from a survey of a heterogeneous sample of similar information needs to the 50-year-old professional woman 2331 patients attending out-patient departments throughout the with cancer? Should clinicians edit the information that they give United Kingdom for consultations about cancer and its treatment, based on intuition and past experience or should they do so only that unequivocally answers the question of how much information according to patients’ stated preferences? patients prefer to have from their doctors. We know that clinicians tend to underestimate the amount of information that patients require (Fallowfield et al, 1994; Degner PARTICIPANTS AND METHODS et al, 1997) and while fewer these days are reluctant to use the word cancer, many still believe that disclosure should only be As part of a study evaluating a communication skills training made to those patients who actively seek it. Unfortunately unless model for clinicians, we collected information preferences from a invited to ask directly, patients rarely raise important questions heterogeneous sample of patients attending out-patient clinics during a consultation. Many patients assume that the doctor within the UK. 34 hospitals were involved in the study, including would have told them everything relevant, others worry that they large teaching hospital cancer centres and smaller district general will appear foolish if they reveal their ignorance by asking ques- hospitals. MREC and LREC was granted for the patients’ assess- tions, and some feel that they have already taken up too much of ments. Inclusion criteria were broad and comprised adults who the busy doctor’s time (Fallowfield and Jenkins, 1999). At least were about to see a medical, clinical or surgical oncologist for a two small studies of non-representative groups of patients consultation about their cancer diagnosis, treatment, prognosis or (Cassileth et al, 1980; Fallowfield et al, 1994) have shown that tests and routine follow-up visits. patients’ information needs are substantial. This finding was also 2681 patients were approached by a member of the research validated in a small, but carefully stratified, more representative team whilst waiting in out-patient clinics to see the doctor and sample of 250 patients with cancer (Meredith et al, 1996). In con- given an information sheet explaining the study. 85% (2331) gave trast, a recently published qualitative study of 17 patients, sug- written informed consent to participate. The most common gested that some may prefer to avoid disease related information reasons given for non-participation were a lack of English, poor eye-sight and concerned relatives. Table 1 lists the tumour site details, aim of treatment and patient characteristics. The question- Received 9 June 2000 naire is one that is widely used throughout the UK and US in Revised 16 September 2000 previously published studies (Fallowfield et al, 1994; Meredith Accepted 11 October 2000 et al, 1996). It consists of two parts; in part one, patients were asked Correspondence to: V Jenkins to choose a statement that best described their general attitudes 48 Information needs of patients with cancer49 Table 1 Background details of patients ( n = 2331) CROSS TABULATION OF RESPONSES Characteristics Sample Age Age (years) There was a significant association between age and the amount of <=30 113 (4.8%) information required by the patient. Although a large proportion of 31–50 580 (24.9%) patients over 70 years of age wanted as much information as 51–70 1081 (46.4%) possible (81%), significantly more of the older group preferred to >70 440 (18.9%) Unknown 117 (5%) leave details up to the doctor (13% 58/440 v 6.5% 110/1774; chi Sex square = 26.01, df = 2, P < 0.0001). In addition, there were signific- Men 892 (38.3%) ant differences in response to the specific questions as shown in Women 1439 (61.7%) Table 2, although it should be emphasized that the majority of the Marital status older patients did want detailed information. Partner 1590 (68.2%) No partner 612 (26.3%) Unknown 129 (5.5%) Sex Tumour site Breast 585 (25.1%) Although the majority of patients of both sexes wanted specific Gastro-intestinal/colorectal 418 (17.9%) details of information, there were two areas where the younger Haematological 181 (7.8%) women (70 years and under) were significantly different. They Lung 164 (7.0%) Gynaecological 147 (6.3%) preferred to know the name of the illness, (974/1056 [92%] v Urological 145 (6.2%) 588/660 [89%], chi square = 4.9, P < 0.02) and all the possible avail- Skin 80 (3.4%) able treatments 1021/1059 [96%] v 621/665 [93]%, chi square = 8.26, CNS 64 (2.7%) P < 0.004). Head & Neck 57 (2.4%) Unknown Primary 164 (7.0%) Other 326 (14.0%) Aim of treatment Type of treatment Curative 940 (40.3%) There were no differences in specific information needs between Palliative 841 (36.1%) those patients receiving curative or palliative treatment or for Remission 215 (9.2%) those who were in remission. Not Specified 335 (14.4%) Cancer site There were no differences in information needs between the different cancer sites. This was despite the fact that the largest and preferences about information concerning their illness. Part cancer site in the sample was women with breast cancer. two consisted of a list of 7 different more specific kinds of informa- tion about illness and treatment and patients were asked to indicate whether they 1) had an absolute need, 2) would like to have or 3) The specific information needs of patients who want to would prefer not to have that information. Answers to the ques- leave details up to the doctor and ‘good news’ patients tions were cross-tabulated according to the patient’s age, sex, aim Although a small percentage of the sample stated in part one that of treatment and cancer site. Statistical significance was assessed they preferred to leave everything up to the doctor or wanted only using the chi square test. good news (7.7% and 5.4% respectively), when prompted by the items in part two of the questionnaire, the majority of patients in RESULTS both groups expressed a need for specific information concerning illness and treatment. Table 3 shows the responses of all 3 groups Of the 2331 patients who participated in the study, 940 (40%) were with the data from ‘absolutely need’ and ‘would like to have’ receiving curative treatment, 841 (36%) palliative treatment, 215 collapsed into one category. (9%) were in remission and for 335 (14%) treatment intent was still uncertain. DISCUSSION Part 1 The results from this large survey support previous research that In response to the first question, on patients’ general attitudes to most patients want as much information as possible about treat- information, 2027 (87%) preferred to have as much information as ments and illness. An extremely important finding was that 98% of possible, both good and bad. 125 (5.4%) preferred to have addi- patients needed to know whether the illness was cancer. This obser- tional information only if it was good news and 179 (7.7%) vation should convince health professionals that they should not preferred to leave it up to the doctor. withhold the truth about diagnosis on the grounds that many patients prefer not to know. Furthermore 95% wished to know what their chances of cure were, so information about prognosis should not be Part 2 avoided either (Fallowfield et al, 1998). Our findings contrast with a Table 2 shows an overwhelming need by patients for specific recent qualitative study of 17 patients which suggested that patients’ information concerning different aspects of illness and treatment. strategies for coping with cancer suppress their wish for, and efforts Only 42/2231 (1.9%) did not want to know if they had cancer. to obtain information at different stages of their illness. Qualitative © 2001 Cancer Research Campaign British Journal of Cancer (2001) 84(1), 48–51 50 V Jenkins et al Table 2 Responses of 2331 patients to specific information needs ( n and valid %) Question Total Sample  70 years of > 70 years of age age Absolutely Would like Do not want Absolutely need Absolutely need chi square need to have to have and would like and would like P value What the specific medical name of 801 1193 254 1562/1716 334/419 43.34 the illness is. (35.6%) (53.1%) (11.3%) (91%) (79.7%) P = 0.0001 Whether or not it is cancer. 1348 855 42 1684/1711 408/421 4.18 (60%) (38.1%) (1.9%) (98.4%) (96.9%) P = 0.04 When you are having treatment 876 1148 203 1566/1701 359/416 13.47 what the week by week progress is. (39.3%) (51.5%) (9.1%) (92.1%) (86.3%) P = 0.0002 What the chances of cure are. 1195 920 104 1626/1696 384/412 5.32 (53.9%) (41.5%) (4.7%) (95.9%) (93.2%) P = 0.021 What all the possible treatments 1223 897 135 1642/1724 373/418 21.78 are. (54.2%) (39.8%) (6%) (95.2%) (89.2%) P = 0.0001 What all the possible side effects of 1363 840 62 1692/1729 403/422 7.46 treatment are. (60%) (37.1%) (2.8%) (97.9%) (95.5%) P = 0.006 How the treatment works to treat 1027 1042 183 1612/1719 355/420 39.06 the illness. (45.6%) (46.3%) (8.1%) (93.8%) (84.5%) P = 0.0001 Table 3 Responses to specific information needs as a function of general preference for information All information Only good news Leave up to Dr. Question Absolutely need Absolutely need Absolutely need and would like and would like and would like Specific name of the illness 1822/1962 (93%) 79/118 (67%) 93/168 (55%) Whether or not it is cancer 1930/1961 (98%) 108/117 (92%) 145/167 (87%) Week by week progress 1839/1949 (94%) 82/116 (71%) 103/162 (64%) Chances of cure 1909/1943 (98%) 88/115 (77%) 118/161 (73%) All the possible treatments 1919/1969 (97%) 92/119 (77%) 109/167 (65%) All the possible side effects 1956/1975 (99%) 112/121 (93%) 135/169 (80%) How the treatment works 1887/1965 (96%) 82/121 (68%) 100/166 (60%) methods can provide a different perspective but they must be treatment and side effects, especially whether or not they had cancer. rigorous (Mayes and Pope, 1996). It would be wrong for health Negative stereotypes of the elderly are common among health care professionals to alter their practice of information giving based on professionals (Greene et al, 1986). If clinicians assume that there is such limited results. The article had so few details about the methodo- an increase in passivity and helplessness in the elderly patient, then it logy utilized for sample selection and the manner in which data were is more likely that these negative aspects will prevail in the consulta- collected and analysed to permit independent judgement about the tion. This leads to a doctor-centred rather than patient-centred inter- conclusions. Instead of still questioning the need for giving more action, with the doctor in control of information giving. information we need to be developing ways to provide adequate Many older people still have a deferential attitude towards information in a flexible and sensitive manner. doctors, particularly when meeting them in a medical setting; thus The avoidance of information often stems from myths and our findings demonstrate the need for doctors to actively encourage misunderstandings about the disease which doctors could correct such patients to ask questions. These patients may have grown up in with clearer explanations and thus alleviate distress. The majority a culture where it was considered impolite to question or ask further of patients want to know, as we have shown but may be afraid to information from a ‘busy’ specialist. It would be surprising to still ask. Cross-sectional analysis of our data showed no evidence for find this attitude in 10 or 20 years time, as medical information different information needs whether patients were awaiting diag- becomes more accessible to the general public. Clinicians have nosis, having radical treatment, were in remission or being treated already commented on the increase in the number of ‘internet palliatively. However, to ensure that patients’ true views and prefer- patients’ attending clinics, who are sometimes more informed ences are met throughout the disease trajectory, doctors need to about new treatments than the doctor (Thompson, 1999). adopt flexible policies of regularly checking information needs Recent literature repeatedly states that patients, whatever age, want more directly with their patients during their consultations. to be kept well informed about their illness. The findings are similar The attitudes and beliefs held by patients and doctors clearly influ- for the emergency patient in the USA (Davis et al, 1999), the pre- ence the consultation. The notion that the older patient prefers the operative patient in Australia (Farnhill and Inglis, 1994) the cancer doctor to determine how much information to provide is only weakly patient in Hong Kong (Fielding and Hung, 1995) and the woman with upheld by the study. Although significantly more of the older (i.e., breast cancer in Liverpool (Luker et al, 1996) or Canada (Degner et al, those over 70 years) patients indicated a preference to leave details 1997). However, although older patients have a high desire for infor- up to the doctor, most (98%) still wanted specific information about mation, some data suggest that they have less desire for participation British Journal of Cancer (2001) 84(1), 48–51 © 2001 Cancer Research Campaign Information needs of patients with cancer51 in decisions about treatments and management (Charles et al, 1998). to data analysis and writing the paper. Tony Duffy, Anna Fair, Phillipa Some clinicians have difficulty separating decision making from a Jones, Sarah Ford Angela Hall and Denise Ratcliffe together with the need for information. Although some older people may want the authors were involved in the data collection for the study. doctor to make decisions about management, they still require infor- mation about the reasons for decisions affecting their care. Age remained a significant factor when examining whether men REFERENCES and women wanted the same detailed information. 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Leeds: NHS Executive ACKNOWLEDGEMENTS Razavi D and Delvaus N (1997) Communication skills and psychological training in oncology. Eur J Can 33 (Suppl 6): S15–S21 We would like to thank all those who participated and the Cancer Thompson C (1999) Cybermedicine. Br Med J 319 (720): 1294 Research Campaign for funding the study. Wilkinson S, Roberts A and Aldridge J (1998) Nurse-patient communication in Contributors: Lesley Fallowfield had the original idea for the study palliative care: an evaluation of a communication skills programme. Palliative and Val Jenkins, Lesley Fallowfield and Jacky Saul each contributed Med 12: 13–22 © 2001 Cancer Research Campaign British Journal of Cancer (2001) 84(1), 48–51

Journal

British Journal of Cancer – Springer Journals

Published: Jan 3, 2001

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