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Disclosure of breast cancer diagnosis: Patient and physician reports
Annals of Oncology 2: 273-280, 1991. O 1991 Kluwer Academic Publishers. Printed in the Netherlands.
Original article Disclosure of breast cancer diagnosis: Patient and physician reports
1 Laboratory of Clinical Epidemiology, Istituto di Ricerche Farmacologiche 'Mario Negri] Milano, Italia; : Associate Professor and Director of Clinical Psychology, University of Southern California, Los Angeles, CA, USA; 'A list of participating physician co-authors of the paper is reported at the end.
Summary. Although there is considerable controversy about what information regarding the diagnosis of cancer is most helpful to patients in meeting their psychological and medical needs, little research exists on what patients who are treated in non-specialized institutions are told about their diagnosis and treatment. We assessed the information that breast cancer patients received about their diagnosis from the perspective of both the patient and the physician, in order to determine whether they agree in their perceptions of communication, and whether the nature of patient-physician communication is associated with patient satisfaction. Questionnaires were completed by 1171 Italian breast cancer patients (representing a 81.5% response rate) and their physicians at the time of surgery for breast cancer. Only a minority of patients (47%) reported having been told that they had cancer. Satisfaction with information was highest among women who had been told the diagnosis. Patient and physician reports of what information was conveyed about the diagnosis differed for over half of patients, with highest satisfaction levels reported when both patient and physician stated that the diagnosis had been conveyed. While comparison of patient and physician reports should not be used to validate either source of information, the degree of patientphysician disagreement found in this research may alert physicians to potential difficulties that can arise in communicating with cancer patients. Key words: breast cancer, cancer communication, quality of care, patient satisfaction Introduction Very little research exists on the nature of the information about diagnosis and treatment that is given to cancer patients in general hospitals. The lack of investigation has led to reliance on anecdotes over systematic studies and to over-generalization of results derived from studies carried out in specialized settings [1]. Studying the nature and the content of information can be difficult in that many factors may influence the disclosure of the diagnosis (i.e.: patient health condition, doctor's opinion and, perhaps, reluctance in establishing an open dialogue with patients) [2]. Moreover, in the opinion of some authors [3-5], patients may not be able to understand or to cope with the full disclosure of cancer diagnosis. Attitudes and behaviours of physicians with regard to conveying the diagnosis seem to be based on personal convictions and cultural expectations, rather than sound empirical data [1,6]. This lack of data is hard to remedy since, in many countries, there is strong agreement on the need to disclose or not to disclose the diagnosis, making it difficult to examine the naturally occurring consequences of different levels of disclosure. In Italy, however, previous research has docu-
mented that both patients [7] and physicians [8] report that the information that patients receive about cancer diagnosis ranges from complete and accurate disclosure of the diagnosis, through vague or partial disclosure, to an absence of any information about cancer diagnosis. Patients and physicians frequently disagree regarding what patients' needs and perceptions of their illness should be [9]. A comparison of patient and physician perceptions of what information is conveyed about the diagnosis may help to elucidate whether patients who are told their diagnosis understand and recall what they are told and whether patients who are not told the diagnosis know more than physicians have conveyed. In this study, we assessed the information that breast cancer patients received about their diagnosis and surgical treatment from the perspective of both the patient and her physician, in order to determine how patient and physician characteristics influence the disclosure of information, and how the nature of patient-physician communication is associated with satisfaction with communication. Although we have considered disclosure of information with breast cancer patients only, this analysis may provide a useful starting point for confronting communication problems that may arise when the decision about whether to
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P. Mosconi,1 B. E. Meyerowitz,2 M. C. Liberati1 & A. Liberati,1 on behalf of GIVIO1-3 (Interdisciplinary Group for Cancer Care Evaluation, Italy)
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Procedures Prior to discharge from the hospital following initial breast surgery, medical staff approached each patient entered on the clinical trial to request participation in this study. Four patients were excluded because they Patlenu admtted lo GIVK) hoqdah and t o o t * tof th» itudy N-2010
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Fig. I. Flow-chart of patients entry into the study.
Questions relevant for this paper included those that explored the diagnostic and surgical information conveyed, and patient perceptions of adequacy of and satisfaction with the level of communication. A copy of this questionnaire is available upon request. a) Information received Patients reported whether or not they had received information about the nature of their illness before and after surgery and about the operation before it was performed. Patients who received information were asked in an open-ended question to describe what they had been told. Four trained coders used a predefined coding protocol to score the open-ended items. A subset of questionnaires was used to test interrater reliability on these items and percent of exact agreement is reported below. After the reliability check, two coders (P.M. and M.C.L.) reviewed all questionnaires and resolved disagreements by discussion. Three options were available for coding patients' descriptions of the information they had received about their illness [8]: (1) reporting an exact diagnosis of cancer (e.g., descriptions including terms such as cancer, tumor, neoplasm, malignancy), (2) reporting suspicion of cancer (e.g., descriptions including terms such as suspicion of malignancy, lesion of borderline nature, suspicious cells), or (3) reporting a noncancer diagnosis (e.g., cyst, node, inflammation, benign lesion). Interrater agreement in scoring this item was 91.9% and overall K value - 0.95. The options for coding information patients received about the operation were: (1) reporting that they had been told that total or partial breast loss was certain, (2) reporting that they had been told that total or partial breast loss was possible, or (3)
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inform cancer patients of their diagnosis is left to indi- could not read Italian; all of the remaining 1437 vidual physicians. patients agreed to participate. Patients received a letter describing the research; a self-administered questionnaire (see below); instructions for completing the questionnaire; and a stamped, return envelope addressed to Methods the G.I.VJ.O. coordinating center. A cover sheet, atThis research is incorporated into an ongoing large- tached to the questionnaire, provided patients with the scale, randomized clinical trial investigating the effec- opportunity to refuse participation by returning the tiveness of intensive follow-up diagnostic testing in blank questionnaire. For the 33.1% of patients who did women with operable breast cancer. not return a questionnaire (either completed or blank) within 45 days, a second questionnaire packet was mailed from the center. Questionnaires were identified Participants by code number only and no information was conveyed All patients, aged 70 yr or less, seen at one of the 31 to physicians regarding a patient's participation or her participating hospitals who had histologically con- specific responses to the questionnaire. firmed Stage I, II, or III breast cancer and had not had Physicians participating in the clinical trial also comprevious malignancy, were eligible for participation in pleted a questionnaire (see below) for each patient at the clinical trial. A total of 1441 women out of two the time of her hospitalization. When the participating thousand consecutive patients seen over the accrual physician was not the primary treating physician for the period entered the study. All the patients in the clinical patient, the study protocol required that he or she contrial were contacted for participation in the research tact the treating physician or examine the medical chart reported here. A comprehensive description of the for necessary information. patient selection scheme is reported in Figure 1. Treating physicians also provided data for this study. Patient questionnaire
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not reporting that they had been given any information about the possibility of breast loss. Raters obtained reliability of 87.5% on this item (corresponding value of the overall K statistic was 0.90).
between completeness of information received by patients and type of surgery - and of physician gender as for the association between completeness of information reportedly given by doctors and their specialty.
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b) Adequacy of and satisfaction with information Next, patients rated whether the type and extent of sur- Results gery was consistent with what they had been told prior to the operation and rated their overall level of satisfac- Characteristics of sample tion with the information they had received. Patients responded on five-point Likert-type scales (ranging The 1437 patients who were approached for participation in this research can be divided into three groups on from absolutely not to completely). the basis of their level of participation; as it is shown in Figure 1, there were 1190 participants (82.8%) who Physician questionnaire returned completed questionnaires, 95 nonparticipants As part of a form soliciting demographic and medical (6.6%) who indicated their unwillingness to participate information about each patient, physicians completed a by returning blank questionnaire, and 152 nonrespondone-page questionnaire in which they reported their ers (10.6%) who did not return questionnaires. Data age, gender, and medical specialty. Next, physicians from 19 participants could not be used because there indicated whether or not they had given the patient in- were mistakes or omissions in code numbers. For purformation about her diagnosis and about her surgery poses of the analysis, these patients were considered and, if so, they responded to open-ended questions nonresponders, leaving a final sample of 1171 (81.5% designed to determine specifically what information of the study population) (Figure 1, bottom). they had given to her. The question about diagnosis was Table 1 shows the demographic and medical charcoded according to the same method described above acteristics of the present sample of 1171 patients and of (i.e., physician told patient she had cancer, told patient the remaining eligible patients (N •= 266 nonparticithere was a suspicion of cancer, did not tell patient pants and nonresponders). Participants were younger about cancer). Physician descriptions of the informa- (p < 0.05), had more education (p<0.01), and were tion they had given to patients about surgery fell into more likely to be married (versus widowed, single, or three categories: 1) very detailed description of surgical divorced; p < 0.01) than patients who did not take part procedures, 2) simple statement of type of surgery to in this study. Further examination of these data rebe performed, or 3) an explanation that no decision vealed that differences between groups were due to about surgery could be made until the operation began. differences on these variables between participants and nonparticipants; nonresponders did not differ on any of the demographic or medical variables from either of Data analysis the other two groups of patients. Within five months after subject accrual ended, Data were analyzed using either parametric (t- and F-tests) or nonparametric (Chi-square and Kruskal- questionnaires had been returned by physicians for Wallis analysis of variance) statistics, as appropriate. In 92.6% of patients. Responses indicated that 87% of the computation of the latter text, each of the N obser- patients were seen by male physicians, with a mean age vations is replaced by ranks. That is, all of the scores of 42.2 years. Patients were seen by physicians whose from all of the K samples combined are ranked in a specialties were: surgery (72%), gynecology (14%), single series. The smallest score is replaced by rank 1, radiotherapy (7%), oncology (6%), and other (1%). the next to smallest by rank 2, the largest by rank N (N = the total number of independent observations (i.e. Patient perceptions answers given by each patient to each individual statement) in the K samples). When this has been done, the a) Information received sum of the ranks in each sample is found and the test As can be seen on Table 2, most patients reported, on determines whether these sums of ranks are so dispar- the dichotomous questions, that they had received ate that they are not likely to have come from samples some form of information about their illness and about the type of operation they would receive. In reporting which were all drawn from the same population. All throughout the study responses reported are responses from those patients who completed the based on actual number of patients for whom data were open-ended questions about the exact nature of the information that they received, we have combined available for each item. The potential reciprocal confounding effects of patients' reports on the information that they received different variables was controlled for using stratifica- about the nature of their illness before and after surtion and the Mantel-Haenszel procedure. In particular, gery (i.e., by adding patients who were told their diagwe controlled for imbalances in patient age and educa- nosis after surgery to those who had been told before tion - as potential confounders of the association surgery), since patients told before did not differ from
276 Table I. Comparison of participants to nonparticipants and nonresponders on medical and demographic variables*. Participants
Mean age Mean number of years of schooling
Nonparticipants and nonres ponders
53.1
54.5 b
7.0
6.2C
534 (50.1%) 175 (16.7%) 341 (32.5%)
109 (46.6%) 46 (19.7%) 79 (33.8%)
Martial status Married Single, widowed, or divorced
849 (77.7%) 243 (22.3%)
166 (69.5%)c 73 (30.5%)
Surgery Conservative Modified radical Radical
317 (29.1%) 662 (60.8%) 110 (10.1%)
60 (25.3%) 152 (64.1%) 25 (10.5%)
Performance status 1 2 3
1045 (95.9%) 224 (94.5%) 44 ( 4.0%) 12 ( 5.0%) 1 ( 0.1%) 1 ( 0.5%)
b) Adequacy of and satisfaction with information Most patients (75.3%) reported that the type and extent of surgery that they received was for the most part' Nodal status or 'completely' consistent with what they had been told Negative 629 (57.7%) 118 (49.4%) Positive prior to their surgery. Patient judgement of the accuracy 461 (42.3%) 121 (50.6%) of information about surgery differed significantly in 1 The total number of subjects listed under each variable may vary direct relation to the amount of information the patient due to missing information on each item. reported having been told, with patients who were told b p<0.05. c before the operation that they would have breast surgep<0.01. ry rating the information as most accurate (86.4% mostly or completely accurate) and patients who received no information giving the lowest accuracy patients told after surgery on any other variable. The type of information that patients received differ- ratings (25.6% mostly or completely accurate). ed as a function of medical and demographic charIn response to the question about overall satisfaction acteristics. Women who reported having been told that with information received, 65.3% of patients reported they had cancer or the possibility of cancer were sig- that they were satisfied 'completely' or 'for the most nificantly younger (Mean values - 51.59 versus 54.39 part'. Kruskal-Wallis analysis of variance [10] indicated yr old, p < 0.001) and more educated (Mean values = that the patients who were most satisfied were those 7.8 versus 6.3 yr of school, p < 0.001) than women who who reported that they had been given the most extenwere told something other than cancer or given no in- sive and accurate information about their diagnosis formation about the diagnosis. Blue collar workers, as (p < 0.001) and their surgery (p < 0.001). Patients who were told that they had cancer reported the highest levels of satisfaction with information (74.3% mostly or Table 2. Patient reports of nature of information received about illcompletely satisfied) and those who were given no inness and surgery. formation about their diagnosis reported the lowest N % levels of satisfaction (23.3% mostly or completely satisfied). Patients who were told that they might have canInformation received about illness cer or who were told another diagnosis reported modPatient informed of: erate levels of satisfaction (63.8% and 63.9% mostly or Cancer diagnosis 495 47.4 completely satisfied, respectively). With regard to surPossibility of cancer diagnosis 80 7.7 Noncancer diagnosis 381 36.5 gery, the most satisfied patients were those who had No information received 8.4 88 been told that they would receive breast surgery or that they might receive breast surgery. Patients who reInformation received about surgery ceived less information were significantly less satisfied. Patient informed of: Partial or total breast loss 512 51.3 We analyzed the data in order to determine whether Possibility of partial or total breast loss 253 25.3 differences in satisfaction could be attributed to the difNo mention of breast Joss 142 14.2 ferences in medical and demographic characteristics on No information received 91 9.1 what patients were told. Nodal status was the only
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Employment status Homemaker Blue-collar (manual) worker White-collar (non-manual) worker
compared to white collar workers and women who were not employed outside the home, were less likely to report having been told the diagnosis of cancer and more likely to have been given no information about the nature of their illness (p < 0.01). Women with more conservative surgeries reported receiving more accurate information about their diagnosis (p < 0.05). With regard to information about the type and extent of surgery, analyses revealed that patients who stated that they had been given no information about surgery had significantly fewer years of education than other patients (Mean values = 5.75 versus 7.3 yr of school, p < 0.01). Also, women who received radical mastectomies (vs. modified radical mastectomies or conservative surgeries) reported being less likely to have received information about the extent of their surgery and more likely to have received no information prior to surgery (p < 0.001). These differences held constant even after controlling for imbalances in patients' age and education.
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cancer
( 1)
(11)
( 9)
( 3)
With regard to information about surgery, physicians Told 76 d 92 d 68" 20' reported that: 18.6% of patients (N - 138) were given noncancer (30) (36) (26) ( 8) (28) (47) (54) (46) detailed information about the surgery they would re- diagnosis d d d ceive, 55.9% (N = 415) were given a general descrip- Told 10 10 h 17 17 tion of surgery, 19.1% (N - 142) were told that a deci- nothing (18) (18) (31) (31) ( 6) ( 5) (27) sion about the extent of surgery would be made during (11) the operation, and 6.3% (N = 47) were given no information about their surgery. Highly detailed information 1 - row percentage. 2 - column percentage. was significantly and independently associated with physicians' specialty (with surgeons providing greater The following symbols label homogeneous categories of patients physicians judgements: details than other specialists, p < 0.001), and gender JandPatient and physician agree that patient was told she had or might (with male doctors giving more accurate information have cancer. than females, p < 0.001). Moreover, highly detailed in- h Patient and physician agree that patient was not told that she had formation was more frequently given to patients who cancer. c Patient reports receiving more information than physician reports received segmental surgeries (p < 0.001) and who were conveying. node negative (p < 0.05). J Patient reports receiving less information than physician reports conveying.
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variable on which differences were found, with node- Agreement between patient-physician perceptions negative women reporting greater satisfaction with information than node-positive women (p < 0.001). We compared the information that each patient reWithin both levels of nodal status, however, greatest ported receiving about her illness and surgery to the insatisfaction was still associated with most complete dis- formation that the physician said was conveyed to her. closure of information. As can be seen on Table 3 there was considerable disagreement between patient and physician reports. We Physician perceptions divided patients into four categories: patient and physician agree that patient was told she had cancer or might Physicians responded to the questions regarding the in- have cancer, 28% (N — 184); patient and physician formation they had given about diagnosis and surgery agree that patient was not told that she had cancer, for 64% (n - 750) of the patients. Part of this missing 11.9% (N - 78); patient reports having less informainformation is due to the fact that 24% patients (99/ tion than physician reports conveying, 35.1% 421) were randomized by hospital that did not perform (N = 231); patient reports having more information the initial surgery (i.e. centers with radiotherapy facili- than physician reports conveying, 25.1% (N-165). ties but whose surgery department did not enter the Since data on what physicians had told 36% of patients trial) and therefore surgeons were unavailable for re- were missing (see before), we examined the data to porting information regarding the conveyal of the diag- determine whether or not the results were biased by nosis. Considering those who gave evaluable answers looking at the distribution of physician non-response we obtained the following: 41.3% (N = 309) of patients across categories of patient response. The distribution had been given a diagnosis of cancer, 29% (N = 217) had of missing data was proportional to the responses probeen given a diagnosis of suspicion of cancer, 23.8% vided by patients, suggesting that the pattern of missing (N - 178) had been given a noncancer diagnosis, and data did not bias our results. 5.9% (N = 44) had been given no information. Female Kruskal-Wallis analysis indicated that the highest physicians were significantly more likely than male physicians to report both that they had told patients they had cancer and that they had provided no infor- Table 3. A comparison of patient and physician perceptions of the mation to patients (versus reporting suspicion of cancer nature of information conveyed about illness. or noncancer diagnosis, p < 0.001). Surgeons were less Patient Physician perceptions likely than other physicians to tell the patient that she perception had cancer (35.1% of surgeons versus 58.9% of others Told Told Told Told cancer suspicion noncancer nothing gave cancer diagnosis, p < 0.001). Physicians who gave diagnosis of cancer diagnosis no information were the youngest and physicians who diagnosis gave a diagnosis other than cancer were the oldest n n n n (Mean values " 3 8 versus 44.2). Significant differences also emerged on patient education level, occupation, and type of surgery that were consistent with the pre72' 6' 163" 52' viously reported differences associated with the Told (56) (25) (18) ( 1) patients' reports of information received. In addition, Cancer (59) (37) (34) (16) patients were less likely to have been told that their Diagnosis d 19 2 P 14' 1' Told diagnosis was cancer when they had worse perforsuspicion of (34) (38) (26) ( 2) mance status (p < 0.01).
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less of whether their physician agreed that they had received the full information, provided higher ratings of satisfaction than patients who felt that they had not been told (p < 0.001). Discussion
Many Italian breast cancer patients are not told when they have cancer: less than half of the patients involved in our study reported receiving exact information about the nature of their illness. Further evidence of lack of open communication is provided by reports from about a quarter of physicians who stated they had not given accurate information about the nature of the disease. This lack of information sharing occurred despite the fact that there was no uncertainty about the diagnosis (all patients had histologically confirmed disease), that most patients had relatively good prognoses (stage I, II or HI), and that there were major physical effects of surgery that could not be overlooked by patients. Nondisclosure was specific to information about the diagnosis; physicians and patients were much more likely to Table 4. A comparison of patient and physician perceptions of the agree that type of surgery was discussed with patients prior the intervention. Perhaps, information about surnature of information conveyed about surgery. gery was easier for physicians to discuss because, unPatient Physician perceptions like discussion of the diagnosis, communicating techniperception cal information about surgery did not require conGave Gave Said decision Gave veying information about the seriousness of the disease detailed basic would be no inor the prognosis. information information made during formasurgery tion Level of satisfaction with information received was n n n n different for patients who had been informed of their diagnoses, with fully-informed patients reporting greatest satisfaction. This high level of satisfaction was found Told of 197* 42 C 58' 10 c specifically in those situations in which both the patient partial or (64) (14) (19) ( 3) and the physician agreed that information about cancer total breast (51) (55) (35) (26) had been conveyed. Since our data are correlational, loss we cannot assume that disclosure of the diagnosis Told of 34 d 82' 49" 6C caused greater satisfaction. It is possible that physicians possibility of (20) (48) (29) ( 3) were exercising good clinical judgement in deciding partial or (30) (23) (41) (16) whom not to tell the diagnosis and that patients who total breast were not told would have been even less satisfied if they loss had been told. According to this explanation, patients d d Possibility of 19 44 22" 12" who had more information about their diagnosis than breast loss (12) (20) (45) (23) the physician reported conveying (25% of our sample) not men(12) (18) (32) (17) tioned would be more dissatisfied than patients who agreed d d d with their doctors that they had not been told the diagGiven no 2 34 7 10" nosis. Our results, however, indicate that patients who information ( 4) (64) (19) (13) (26) ( 2) ( 9) ( 6) were not told did not experience greater dissatisfaction upon learning the diagnosis. Also, as found in previous 1 - row percentage. research [6,8], physician and patient demographic 2 — column percentage. characteristics were significant predictors of the The following symbols label homogeneous categories of patients amount of information that was conveyed, suggesting and physicians judgements: that decisions about what to tell the patient were not 1 Patient and physician agree that patient was told that there would based solely on physician's judgements about the or might be breast loss. b patient's psychological needs. While it may be difficult Patient and physician agree that patient was not told. c Patient reports receiving more information than physician reports for physicians to recognize, the information that they conveying. give patients may be related to their own level of comd Patient reports receiving less information than physician reports fort in disclosing the diagnosis of cancer, and in the conveying.
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levels of patient satisfaction with information were reported in the category in which patients and physicians agreed that the patient had been told about the cancer (80% reported being completely or mostly satisfied). Patients in the other three categories did not differ in terms of level of satisfaction (59.6% reported being completely or mostly satisfied). Table 4 presents a comparison of patient and physician reports about surgical information. We again divided patients into four categories on the basis of their level of agreement with their physician as follows: 61.5% (N = 386) of patients agreed with their physicians that they had been told about the possibility of breast loss, 7% (N = 44) of patients agreed with their physicians that they had not been told about the possibility of breast loss, 22.3% (N - 140) of patients reported having less information about their surgery than the physician reported conveying, and 9.2% (N - 58) of patients reported having more information than their physician reported conveying. Patients who reported having received information about breast loss, regard-
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We will continue to follow these patients throughout the five-year trial to determine what, if any, longterm effects are associated with different levels of communication about diagnosis and surgery. In the meantime, the different levels of satisfaction found in the present research suggest that physicians should make special efforts to establish an open dialogue in which patients are fully informed about their diagnosis. Particularly in an illness such as breast cancer, the absence of open
communication may deprive patients of inclusion in discussion of alternative treatment options [13,14]. Acknowledgments
The authors thank Ms Sabrina Bidoli and the Pfeiffer Memorial Library Staff for editorial assistance; the Biomathematics and Biostatistics Unit at Mario Negri Institute for assistance in data management. Supported by Italian National Research Council (C.N.R.) special project 'Oncology' grant No. 88.00905.44 and National Cancer Institute grant No. CA 45638. GIVIO coordinating center
A. Alexanian MD, G. Apolone MD, R. Fossati MD, R. Grilli MD, S. Marsoni MD, N. Monferroni MD, A. Nicolucci MD, A. Taiana MD, V. Torri MD (Istiruto 'Mario Negri') and P. Zola MD (Prima Clinica di Ostetricia e Ginecologia, Torino).
Participating hospitals
Clinicians from the following hospitals are co-authors of this paper: P. A. Nannicini, M. Rinaldini (Arezzo); G. Di Biagio (Assisi); E. Borrio, F. Testore (Asti); N. Tavoni (Atri); M. De Lena, D. Palmieri, F. Schittulli (Bari); T. Pedicini (Benevento); M. Fumagalli, G. Gritti, S. Rocchi (Bergamo); G. Marini, A. Zaniboni (Brescia); D. Cosentino, C. Epifani, G. Scognamiglio (Como); G. Meo, D. Perroni (Cuneo); F. Peradotto (Cuorgne); L. Mazietti, V. Saba (Fano); M. Indelli, P. Malacarne (Ferrara); L. Isa, R. Scapaticci (Gorgonzola); E. Aitini, G. Cavazzini, M. Pini, F. Smerieri (Mantova); M. Antonello, I. Lomonaco, O. Nascimben (Mestre); E. Locatelli, M. Monti (Milano-Buzzi); L. Franchi, E. Ghislandi, O. Gottardi (Milano-Niguarda); C. Poma (Milano-Policlinico); A. Pluchinotta (Padova); L. Armaroli (Reggio Emilia); C. Confalonieri, P. Viola (Rho); C. D'Atri (San Dona di Piave); F. Buda, R. Plaino (San Vito Al Tagliamento); L. Galletto (Savigliano); B. Trolli (Tirano); A. Rolfo, G. Vaudano (Torino-S. Anna); M. R. Giolito, F. Rappelli (Torino-S. Giovanni); G. Ambrosini, L. Busana (Trento); M. Molteni, A. Richetti, P. Vanoli (Varese).
References 1. Novack DH, Plumer R, Smith RL et al. Change;, in physicians" attitudes toward telling the cancer patient. JAMA 1979; 241: 897-900. 2. Reiser SJ. Words as scalpels: Transmitting evidence in the clinical dialogue. Ann Intern Med 19S0: 92: 837-42. 3. Freireich EJ. Should the patient know? JAM A 1979; 241:928. 4. Blumenfield M, Levy NB, Kaufman D. Do patients want to be told? N Engl J Med 1978; 299: 1138.
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subsequent communication that such disclosure would necessitate, rather than to patients' abilities to accept such information. Another, perhaps more likely, explanation for the finding that full disclosure was positively associated with satisfaction is that doctors who communicated fully about the diagnosis also communicated more fully on a variety of other topics which, in turn, could lead to the levels of satisfaction reported here. In addition to predicting that dissatisfaction might result from disclosure of a cancer diagnosis, previous authors have suggested that many patients would be unable to understand or integrate this very threatening information. We found some support for this possibility in that a sizeable minority of patients reported not knowing their diagnosis even though their doctors stated that they had been told. It is possible that the mode of communication was ineffective or incomplete or that the patient was incapable, either cognitively or psychologically, of grasping the information. While this problem might be dealt with by training doctors in better ways to communicate to anxious or medically unsophisticated patients [11], these data are reassuring in that patients who knew less than they were told were no more dissatisfied than patients who had not been told that they had cancer. Patients may be able to deny or forget information that they are not able to deal with. Doctor-patient communication is a complex and multifaceted issue and we have focussed on only one aspect of the communication process, leaving many questions unanswered. Until further research is conducted, these results should not be generalized beyond the case of breast cancer, which is a well-publicized disease where the surgery may alert patients to the diagnosis even when they are not told. Also, comparable data are not available from other countries, even within Europe, raising questions about the generalizability of these findings. Nonetheless, our results are promising. By including this evaluation in a randomized trial, we have been able to obtain a high response rate from a large and representative sample that includes 4% of all patients newly-diagnosed with breast cancer patients in Italy during the accrual period. The large majority of patients were able and willing to complete questionnaires, and we obtained variance in patient ratings of satisfaction, which indicates that patients were able to • make discriminations on level of satisfaction rather than giving uniformly high satisfaction rating, as has been the case in some other studies [12].
280 13. Liberati A, Patterson WB, Biener L, et al. Determinants of physicians' preferences for alternative treatments in women with early breast cancer. Tumori 1987; 73:601-9. 14. GIV1O. Survey of treatment of primary breast cancer in Italy. Br J Cancer 1988; 57:630-4. Received 31 July 1990; accepted 24 October 1990. Correspondence from Europe to: Alessandro Liberati, M.D. Laboratorio di Epidemiologia Chnica Istituto di Ricerche Farmacologiche 'Mario Negri' Via Eritrea, 62 20157 Milan, Italy Correspondence from US to: Beth E. Meyerowitz Ph.D. Department of Psychology University of Southern California SGM 501 Los Angeles, CA 90089-1061 USA
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5. Brewin TB. The cancer patient: Communication and morale. BMJ 1977; 2: 1623-7. 6. Amir M. Considerations guiding physicians when informing cancer patients. Soc Sci Med 1987; 24: 741-8. 7. Liberati A, Confalonieri C, Martino G et al. Patients' assessment of quality of care: A survey of a group of breast cancer patients in Italy. Tumori 1985; 71: 491-7. 8. GIV1O. What doctors tell patients with breast cancer about diagnosis and treatment: Findings from a study in general hospitals. Br J Cancer 1986; 54: 319-26. 9. MackiUop WJ, Stewart WE, Ginsburg AD, et al. Cancer patients' perceptions of their disease and its treatment. Br J Cancer 1988; 58: 355-8. 10. Siegel S, Castellan NJ. Non parametric statistics for the behavioral science. Second Edition. New York: McGraw-Hill Book Company, 1988. 11. Maguire P. Faulkner A. Improve the counselling skills of doctors and nurses in cancer care. BMJ 1988; 297: 847-9. 12. Davis AR, Ware JE. Involving consumers in quality assessment Health Aff 1988; 7: 33-48.
Original article Disclosure of breast cancer diagnosis: Patient and physician reports
1 Laboratory of Clinical Epidemiology, Istituto di Ricerche Farmacologiche 'Mario Negri] Milano, Italia; : Associate Professor and Director of Clinical Psychology, University of Southern California, Los Angeles, CA, USA; 'A list of participating physician co-authors of the paper is reported at the end.
Summary. Although there is considerable controversy about what information regarding the diagnosis of cancer is most helpful to patients in meeting their psychological and medical needs, little research exists on what patients who are treated in non-specialized institutions are told about their diagnosis and treatment. We assessed the information that breast cancer patients received about their diagnosis from the perspective of both the patient and the physician, in order to determine whether they agree in their perceptions of communication, and whether the nature of patient-physician communication is associated with patient satisfaction. Questionnaires were completed by 1171 Italian breast cancer patients (representing a 81.5% response rate) and their physicians at the time of surgery for breast cancer. Only a minority of patients (47%) reported having been told that they had cancer. Satisfaction with information was highest among women who had been told the diagnosis. Patient and physician reports of what information was conveyed about the diagnosis differed for over half of patients, with highest satisfaction levels reported when both patient and physician stated that the diagnosis had been conveyed. While comparison of patient and physician reports should not be used to validate either source of information, the degree of patientphysician disagreement found in this research may alert physicians to potential difficulties that can arise in communicating with cancer patients. Key words: breast cancer, cancer communication, quality of care, patient satisfaction Introduction Very little research exists on the nature of the information about diagnosis and treatment that is given to cancer patients in general hospitals. The lack of investigation has led to reliance on anecdotes over systematic studies and to over-generalization of results derived from studies carried out in specialized settings [1]. Studying the nature and the content of information can be difficult in that many factors may influence the disclosure of the diagnosis (i.e.: patient health condition, doctor's opinion and, perhaps, reluctance in establishing an open dialogue with patients) [2]. Moreover, in the opinion of some authors [3-5], patients may not be able to understand or to cope with the full disclosure of cancer diagnosis. Attitudes and behaviours of physicians with regard to conveying the diagnosis seem to be based on personal convictions and cultural expectations, rather than sound empirical data [1,6]. This lack of data is hard to remedy since, in many countries, there is strong agreement on the need to disclose or not to disclose the diagnosis, making it difficult to examine the naturally occurring consequences of different levels of disclosure. In Italy, however, previous research has docu-
mented that both patients [7] and physicians [8] report that the information that patients receive about cancer diagnosis ranges from complete and accurate disclosure of the diagnosis, through vague or partial disclosure, to an absence of any information about cancer diagnosis. Patients and physicians frequently disagree regarding what patients' needs and perceptions of their illness should be [9]. A comparison of patient and physician perceptions of what information is conveyed about the diagnosis may help to elucidate whether patients who are told their diagnosis understand and recall what they are told and whether patients who are not told the diagnosis know more than physicians have conveyed. In this study, we assessed the information that breast cancer patients received about their diagnosis and surgical treatment from the perspective of both the patient and her physician, in order to determine how patient and physician characteristics influence the disclosure of information, and how the nature of patient-physician communication is associated with satisfaction with communication. Although we have considered disclosure of information with breast cancer patients only, this analysis may provide a useful starting point for confronting communication problems that may arise when the decision about whether to
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P. Mosconi,1 B. E. Meyerowitz,2 M. C. Liberati1 & A. Liberati,1 on behalf of GIVIO1-3 (Interdisciplinary Group for Cancer Care Evaluation, Italy)
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Procedures Prior to discharge from the hospital following initial breast surgery, medical staff approached each patient entered on the clinical trial to request participation in this study. Four patients were excluded because they Patlenu admtted lo GIVK) hoqdah and t o o t * tof th» itudy N-2010
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Nonrtapondirt 152
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Fig. I. Flow-chart of patients entry into the study.
Questions relevant for this paper included those that explored the diagnostic and surgical information conveyed, and patient perceptions of adequacy of and satisfaction with the level of communication. A copy of this questionnaire is available upon request. a) Information received Patients reported whether or not they had received information about the nature of their illness before and after surgery and about the operation before it was performed. Patients who received information were asked in an open-ended question to describe what they had been told. Four trained coders used a predefined coding protocol to score the open-ended items. A subset of questionnaires was used to test interrater reliability on these items and percent of exact agreement is reported below. After the reliability check, two coders (P.M. and M.C.L.) reviewed all questionnaires and resolved disagreements by discussion. Three options were available for coding patients' descriptions of the information they had received about their illness [8]: (1) reporting an exact diagnosis of cancer (e.g., descriptions including terms such as cancer, tumor, neoplasm, malignancy), (2) reporting suspicion of cancer (e.g., descriptions including terms such as suspicion of malignancy, lesion of borderline nature, suspicious cells), or (3) reporting a noncancer diagnosis (e.g., cyst, node, inflammation, benign lesion). Interrater agreement in scoring this item was 91.9% and overall K value - 0.95. The options for coding information patients received about the operation were: (1) reporting that they had been told that total or partial breast loss was certain, (2) reporting that they had been told that total or partial breast loss was possible, or (3)
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inform cancer patients of their diagnosis is left to indi- could not read Italian; all of the remaining 1437 vidual physicians. patients agreed to participate. Patients received a letter describing the research; a self-administered questionnaire (see below); instructions for completing the questionnaire; and a stamped, return envelope addressed to Methods the G.I.VJ.O. coordinating center. A cover sheet, atThis research is incorporated into an ongoing large- tached to the questionnaire, provided patients with the scale, randomized clinical trial investigating the effec- opportunity to refuse participation by returning the tiveness of intensive follow-up diagnostic testing in blank questionnaire. For the 33.1% of patients who did women with operable breast cancer. not return a questionnaire (either completed or blank) within 45 days, a second questionnaire packet was mailed from the center. Questionnaires were identified Participants by code number only and no information was conveyed All patients, aged 70 yr or less, seen at one of the 31 to physicians regarding a patient's participation or her participating hospitals who had histologically con- specific responses to the questionnaire. firmed Stage I, II, or III breast cancer and had not had Physicians participating in the clinical trial also comprevious malignancy, were eligible for participation in pleted a questionnaire (see below) for each patient at the clinical trial. A total of 1441 women out of two the time of her hospitalization. When the participating thousand consecutive patients seen over the accrual physician was not the primary treating physician for the period entered the study. All the patients in the clinical patient, the study protocol required that he or she contrial were contacted for participation in the research tact the treating physician or examine the medical chart reported here. A comprehensive description of the for necessary information. patient selection scheme is reported in Figure 1. Treating physicians also provided data for this study. Patient questionnaire
275
not reporting that they had been given any information about the possibility of breast loss. Raters obtained reliability of 87.5% on this item (corresponding value of the overall K statistic was 0.90).
between completeness of information received by patients and type of surgery - and of physician gender as for the association between completeness of information reportedly given by doctors and their specialty.
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b) Adequacy of and satisfaction with information Next, patients rated whether the type and extent of sur- Results gery was consistent with what they had been told prior to the operation and rated their overall level of satisfac- Characteristics of sample tion with the information they had received. Patients responded on five-point Likert-type scales (ranging The 1437 patients who were approached for participation in this research can be divided into three groups on from absolutely not to completely). the basis of their level of participation; as it is shown in Figure 1, there were 1190 participants (82.8%) who Physician questionnaire returned completed questionnaires, 95 nonparticipants As part of a form soliciting demographic and medical (6.6%) who indicated their unwillingness to participate information about each patient, physicians completed a by returning blank questionnaire, and 152 nonrespondone-page questionnaire in which they reported their ers (10.6%) who did not return questionnaires. Data age, gender, and medical specialty. Next, physicians from 19 participants could not be used because there indicated whether or not they had given the patient in- were mistakes or omissions in code numbers. For purformation about her diagnosis and about her surgery poses of the analysis, these patients were considered and, if so, they responded to open-ended questions nonresponders, leaving a final sample of 1171 (81.5% designed to determine specifically what information of the study population) (Figure 1, bottom). they had given to her. The question about diagnosis was Table 1 shows the demographic and medical charcoded according to the same method described above acteristics of the present sample of 1171 patients and of (i.e., physician told patient she had cancer, told patient the remaining eligible patients (N •= 266 nonparticithere was a suspicion of cancer, did not tell patient pants and nonresponders). Participants were younger about cancer). Physician descriptions of the informa- (p < 0.05), had more education (p<0.01), and were tion they had given to patients about surgery fell into more likely to be married (versus widowed, single, or three categories: 1) very detailed description of surgical divorced; p < 0.01) than patients who did not take part procedures, 2) simple statement of type of surgery to in this study. Further examination of these data rebe performed, or 3) an explanation that no decision vealed that differences between groups were due to about surgery could be made until the operation began. differences on these variables between participants and nonparticipants; nonresponders did not differ on any of the demographic or medical variables from either of Data analysis the other two groups of patients. Within five months after subject accrual ended, Data were analyzed using either parametric (t- and F-tests) or nonparametric (Chi-square and Kruskal- questionnaires had been returned by physicians for Wallis analysis of variance) statistics, as appropriate. In 92.6% of patients. Responses indicated that 87% of the computation of the latter text, each of the N obser- patients were seen by male physicians, with a mean age vations is replaced by ranks. That is, all of the scores of 42.2 years. Patients were seen by physicians whose from all of the K samples combined are ranked in a specialties were: surgery (72%), gynecology (14%), single series. The smallest score is replaced by rank 1, radiotherapy (7%), oncology (6%), and other (1%). the next to smallest by rank 2, the largest by rank N (N = the total number of independent observations (i.e. Patient perceptions answers given by each patient to each individual statement) in the K samples). When this has been done, the a) Information received sum of the ranks in each sample is found and the test As can be seen on Table 2, most patients reported, on determines whether these sums of ranks are so dispar- the dichotomous questions, that they had received ate that they are not likely to have come from samples some form of information about their illness and about the type of operation they would receive. In reporting which were all drawn from the same population. All throughout the study responses reported are responses from those patients who completed the based on actual number of patients for whom data were open-ended questions about the exact nature of the information that they received, we have combined available for each item. The potential reciprocal confounding effects of patients' reports on the information that they received different variables was controlled for using stratifica- about the nature of their illness before and after surtion and the Mantel-Haenszel procedure. In particular, gery (i.e., by adding patients who were told their diagwe controlled for imbalances in patient age and educa- nosis after surgery to those who had been told before tion - as potential confounders of the association surgery), since patients told before did not differ from
276 Table I. Comparison of participants to nonparticipants and nonresponders on medical and demographic variables*. Participants
Mean age Mean number of years of schooling
Nonparticipants and nonres ponders
53.1
54.5 b
7.0
6.2C
534 (50.1%) 175 (16.7%) 341 (32.5%)
109 (46.6%) 46 (19.7%) 79 (33.8%)
Martial status Married Single, widowed, or divorced
849 (77.7%) 243 (22.3%)
166 (69.5%)c 73 (30.5%)
Surgery Conservative Modified radical Radical
317 (29.1%) 662 (60.8%) 110 (10.1%)
60 (25.3%) 152 (64.1%) 25 (10.5%)
Performance status 1 2 3
1045 (95.9%) 224 (94.5%) 44 ( 4.0%) 12 ( 5.0%) 1 ( 0.1%) 1 ( 0.5%)
b) Adequacy of and satisfaction with information Most patients (75.3%) reported that the type and extent of surgery that they received was for the most part' Nodal status or 'completely' consistent with what they had been told Negative 629 (57.7%) 118 (49.4%) Positive prior to their surgery. Patient judgement of the accuracy 461 (42.3%) 121 (50.6%) of information about surgery differed significantly in 1 The total number of subjects listed under each variable may vary direct relation to the amount of information the patient due to missing information on each item. reported having been told, with patients who were told b p<0.05. c before the operation that they would have breast surgep<0.01. ry rating the information as most accurate (86.4% mostly or completely accurate) and patients who received no information giving the lowest accuracy patients told after surgery on any other variable. The type of information that patients received differ- ratings (25.6% mostly or completely accurate). ed as a function of medical and demographic charIn response to the question about overall satisfaction acteristics. Women who reported having been told that with information received, 65.3% of patients reported they had cancer or the possibility of cancer were sig- that they were satisfied 'completely' or 'for the most nificantly younger (Mean values - 51.59 versus 54.39 part'. Kruskal-Wallis analysis of variance [10] indicated yr old, p < 0.001) and more educated (Mean values = that the patients who were most satisfied were those 7.8 versus 6.3 yr of school, p < 0.001) than women who who reported that they had been given the most extenwere told something other than cancer or given no in- sive and accurate information about their diagnosis formation about the diagnosis. Blue collar workers, as (p < 0.001) and their surgery (p < 0.001). Patients who were told that they had cancer reported the highest levels of satisfaction with information (74.3% mostly or Table 2. Patient reports of nature of information received about illcompletely satisfied) and those who were given no inness and surgery. formation about their diagnosis reported the lowest N % levels of satisfaction (23.3% mostly or completely satisfied). Patients who were told that they might have canInformation received about illness cer or who were told another diagnosis reported modPatient informed of: erate levels of satisfaction (63.8% and 63.9% mostly or Cancer diagnosis 495 47.4 completely satisfied, respectively). With regard to surPossibility of cancer diagnosis 80 7.7 Noncancer diagnosis 381 36.5 gery, the most satisfied patients were those who had No information received 8.4 88 been told that they would receive breast surgery or that they might receive breast surgery. Patients who reInformation received about surgery ceived less information were significantly less satisfied. Patient informed of: Partial or total breast loss 512 51.3 We analyzed the data in order to determine whether Possibility of partial or total breast loss 253 25.3 differences in satisfaction could be attributed to the difNo mention of breast Joss 142 14.2 ferences in medical and demographic characteristics on No information received 91 9.1 what patients were told. Nodal status was the only
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Employment status Homemaker Blue-collar (manual) worker White-collar (non-manual) worker
compared to white collar workers and women who were not employed outside the home, were less likely to report having been told the diagnosis of cancer and more likely to have been given no information about the nature of their illness (p < 0.01). Women with more conservative surgeries reported receiving more accurate information about their diagnosis (p < 0.05). With regard to information about the type and extent of surgery, analyses revealed that patients who stated that they had been given no information about surgery had significantly fewer years of education than other patients (Mean values = 5.75 versus 7.3 yr of school, p < 0.01). Also, women who received radical mastectomies (vs. modified radical mastectomies or conservative surgeries) reported being less likely to have received information about the extent of their surgery and more likely to have received no information prior to surgery (p < 0.001). These differences held constant even after controlling for imbalances in patients' age and education.
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cancer
( 1)
(11)
( 9)
( 3)
With regard to information about surgery, physicians Told 76 d 92 d 68" 20' reported that: 18.6% of patients (N - 138) were given noncancer (30) (36) (26) ( 8) (28) (47) (54) (46) detailed information about the surgery they would re- diagnosis d d d ceive, 55.9% (N = 415) were given a general descrip- Told 10 10 h 17 17 tion of surgery, 19.1% (N - 142) were told that a deci- nothing (18) (18) (31) (31) ( 6) ( 5) (27) sion about the extent of surgery would be made during (11) the operation, and 6.3% (N = 47) were given no information about their surgery. Highly detailed information 1 - row percentage. 2 - column percentage. was significantly and independently associated with physicians' specialty (with surgeons providing greater The following symbols label homogeneous categories of patients physicians judgements: details than other specialists, p < 0.001), and gender JandPatient and physician agree that patient was told she had or might (with male doctors giving more accurate information have cancer. than females, p < 0.001). Moreover, highly detailed in- h Patient and physician agree that patient was not told that she had formation was more frequently given to patients who cancer. c Patient reports receiving more information than physician reports received segmental surgeries (p < 0.001) and who were conveying. node negative (p < 0.05). J Patient reports receiving less information than physician reports conveying.
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variable on which differences were found, with node- Agreement between patient-physician perceptions negative women reporting greater satisfaction with information than node-positive women (p < 0.001). We compared the information that each patient reWithin both levels of nodal status, however, greatest ported receiving about her illness and surgery to the insatisfaction was still associated with most complete dis- formation that the physician said was conveyed to her. closure of information. As can be seen on Table 3 there was considerable disagreement between patient and physician reports. We Physician perceptions divided patients into four categories: patient and physician agree that patient was told she had cancer or might Physicians responded to the questions regarding the in- have cancer, 28% (N — 184); patient and physician formation they had given about diagnosis and surgery agree that patient was not told that she had cancer, for 64% (n - 750) of the patients. Part of this missing 11.9% (N - 78); patient reports having less informainformation is due to the fact that 24% patients (99/ tion than physician reports conveying, 35.1% 421) were randomized by hospital that did not perform (N = 231); patient reports having more information the initial surgery (i.e. centers with radiotherapy facili- than physician reports conveying, 25.1% (N-165). ties but whose surgery department did not enter the Since data on what physicians had told 36% of patients trial) and therefore surgeons were unavailable for re- were missing (see before), we examined the data to porting information regarding the conveyal of the diag- determine whether or not the results were biased by nosis. Considering those who gave evaluable answers looking at the distribution of physician non-response we obtained the following: 41.3% (N = 309) of patients across categories of patient response. The distribution had been given a diagnosis of cancer, 29% (N = 217) had of missing data was proportional to the responses probeen given a diagnosis of suspicion of cancer, 23.8% vided by patients, suggesting that the pattern of missing (N - 178) had been given a noncancer diagnosis, and data did not bias our results. 5.9% (N = 44) had been given no information. Female Kruskal-Wallis analysis indicated that the highest physicians were significantly more likely than male physicians to report both that they had told patients they had cancer and that they had provided no infor- Table 3. A comparison of patient and physician perceptions of the mation to patients (versus reporting suspicion of cancer nature of information conveyed about illness. or noncancer diagnosis, p < 0.001). Surgeons were less Patient Physician perceptions likely than other physicians to tell the patient that she perception had cancer (35.1% of surgeons versus 58.9% of others Told Told Told Told cancer suspicion noncancer nothing gave cancer diagnosis, p < 0.001). Physicians who gave diagnosis of cancer diagnosis no information were the youngest and physicians who diagnosis gave a diagnosis other than cancer were the oldest n n n n (Mean values " 3 8 versus 44.2). Significant differences also emerged on patient education level, occupation, and type of surgery that were consistent with the pre72' 6' 163" 52' viously reported differences associated with the Told (56) (25) (18) ( 1) patients' reports of information received. In addition, Cancer (59) (37) (34) (16) patients were less likely to have been told that their Diagnosis d 19 2 P 14' 1' Told diagnosis was cancer when they had worse perforsuspicion of (34) (38) (26) ( 2) mance status (p < 0.01).
278
less of whether their physician agreed that they had received the full information, provided higher ratings of satisfaction than patients who felt that they had not been told (p < 0.001). Discussion
Many Italian breast cancer patients are not told when they have cancer: less than half of the patients involved in our study reported receiving exact information about the nature of their illness. Further evidence of lack of open communication is provided by reports from about a quarter of physicians who stated they had not given accurate information about the nature of the disease. This lack of information sharing occurred despite the fact that there was no uncertainty about the diagnosis (all patients had histologically confirmed disease), that most patients had relatively good prognoses (stage I, II or HI), and that there were major physical effects of surgery that could not be overlooked by patients. Nondisclosure was specific to information about the diagnosis; physicians and patients were much more likely to Table 4. A comparison of patient and physician perceptions of the agree that type of surgery was discussed with patients prior the intervention. Perhaps, information about surnature of information conveyed about surgery. gery was easier for physicians to discuss because, unPatient Physician perceptions like discussion of the diagnosis, communicating techniperception cal information about surgery did not require conGave Gave Said decision Gave veying information about the seriousness of the disease detailed basic would be no inor the prognosis. information information made during formasurgery tion Level of satisfaction with information received was n n n n different for patients who had been informed of their diagnoses, with fully-informed patients reporting greatest satisfaction. This high level of satisfaction was found Told of 197* 42 C 58' 10 c specifically in those situations in which both the patient partial or (64) (14) (19) ( 3) and the physician agreed that information about cancer total breast (51) (55) (35) (26) had been conveyed. Since our data are correlational, loss we cannot assume that disclosure of the diagnosis Told of 34 d 82' 49" 6C caused greater satisfaction. It is possible that physicians possibility of (20) (48) (29) ( 3) were exercising good clinical judgement in deciding partial or (30) (23) (41) (16) whom not to tell the diagnosis and that patients who total breast were not told would have been even less satisfied if they loss had been told. According to this explanation, patients d d Possibility of 19 44 22" 12" who had more information about their diagnosis than breast loss (12) (20) (45) (23) the physician reported conveying (25% of our sample) not men(12) (18) (32) (17) tioned would be more dissatisfied than patients who agreed d d d with their doctors that they had not been told the diagGiven no 2 34 7 10" nosis. Our results, however, indicate that patients who information ( 4) (64) (19) (13) (26) ( 2) ( 9) ( 6) were not told did not experience greater dissatisfaction upon learning the diagnosis. Also, as found in previous 1 - row percentage. research [6,8], physician and patient demographic 2 — column percentage. characteristics were significant predictors of the The following symbols label homogeneous categories of patients amount of information that was conveyed, suggesting and physicians judgements: that decisions about what to tell the patient were not 1 Patient and physician agree that patient was told that there would based solely on physician's judgements about the or might be breast loss. b patient's psychological needs. While it may be difficult Patient and physician agree that patient was not told. c Patient reports receiving more information than physician reports for physicians to recognize, the information that they conveying. give patients may be related to their own level of comd Patient reports receiving less information than physician reports fort in disclosing the diagnosis of cancer, and in the conveying.
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levels of patient satisfaction with information were reported in the category in which patients and physicians agreed that the patient had been told about the cancer (80% reported being completely or mostly satisfied). Patients in the other three categories did not differ in terms of level of satisfaction (59.6% reported being completely or mostly satisfied). Table 4 presents a comparison of patient and physician reports about surgical information. We again divided patients into four categories on the basis of their level of agreement with their physician as follows: 61.5% (N = 386) of patients agreed with their physicians that they had been told about the possibility of breast loss, 7% (N = 44) of patients agreed with their physicians that they had not been told about the possibility of breast loss, 22.3% (N - 140) of patients reported having less information about their surgery than the physician reported conveying, and 9.2% (N - 58) of patients reported having more information than their physician reported conveying. Patients who reported having received information about breast loss, regard-
279
We will continue to follow these patients throughout the five-year trial to determine what, if any, longterm effects are associated with different levels of communication about diagnosis and surgery. In the meantime, the different levels of satisfaction found in the present research suggest that physicians should make special efforts to establish an open dialogue in which patients are fully informed about their diagnosis. Particularly in an illness such as breast cancer, the absence of open
communication may deprive patients of inclusion in discussion of alternative treatment options [13,14]. Acknowledgments
The authors thank Ms Sabrina Bidoli and the Pfeiffer Memorial Library Staff for editorial assistance; the Biomathematics and Biostatistics Unit at Mario Negri Institute for assistance in data management. Supported by Italian National Research Council (C.N.R.) special project 'Oncology' grant No. 88.00905.44 and National Cancer Institute grant No. CA 45638. GIVIO coordinating center
A. Alexanian MD, G. Apolone MD, R. Fossati MD, R. Grilli MD, S. Marsoni MD, N. Monferroni MD, A. Nicolucci MD, A. Taiana MD, V. Torri MD (Istiruto 'Mario Negri') and P. Zola MD (Prima Clinica di Ostetricia e Ginecologia, Torino).
Participating hospitals
Clinicians from the following hospitals are co-authors of this paper: P. A. Nannicini, M. Rinaldini (Arezzo); G. Di Biagio (Assisi); E. Borrio, F. Testore (Asti); N. Tavoni (Atri); M. De Lena, D. Palmieri, F. Schittulli (Bari); T. Pedicini (Benevento); M. Fumagalli, G. Gritti, S. Rocchi (Bergamo); G. Marini, A. Zaniboni (Brescia); D. Cosentino, C. Epifani, G. Scognamiglio (Como); G. Meo, D. Perroni (Cuneo); F. Peradotto (Cuorgne); L. Mazietti, V. Saba (Fano); M. Indelli, P. Malacarne (Ferrara); L. Isa, R. Scapaticci (Gorgonzola); E. Aitini, G. Cavazzini, M. Pini, F. Smerieri (Mantova); M. Antonello, I. Lomonaco, O. Nascimben (Mestre); E. Locatelli, M. Monti (Milano-Buzzi); L. Franchi, E. Ghislandi, O. Gottardi (Milano-Niguarda); C. Poma (Milano-Policlinico); A. Pluchinotta (Padova); L. Armaroli (Reggio Emilia); C. Confalonieri, P. Viola (Rho); C. D'Atri (San Dona di Piave); F. Buda, R. Plaino (San Vito Al Tagliamento); L. Galletto (Savigliano); B. Trolli (Tirano); A. Rolfo, G. Vaudano (Torino-S. Anna); M. R. Giolito, F. Rappelli (Torino-S. Giovanni); G. Ambrosini, L. Busana (Trento); M. Molteni, A. Richetti, P. Vanoli (Varese).
References 1. Novack DH, Plumer R, Smith RL et al. Change;, in physicians" attitudes toward telling the cancer patient. JAMA 1979; 241: 897-900. 2. Reiser SJ. Words as scalpels: Transmitting evidence in the clinical dialogue. Ann Intern Med 19S0: 92: 837-42. 3. Freireich EJ. Should the patient know? JAM A 1979; 241:928. 4. Blumenfield M, Levy NB, Kaufman D. Do patients want to be told? N Engl J Med 1978; 299: 1138.
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subsequent communication that such disclosure would necessitate, rather than to patients' abilities to accept such information. Another, perhaps more likely, explanation for the finding that full disclosure was positively associated with satisfaction is that doctors who communicated fully about the diagnosis also communicated more fully on a variety of other topics which, in turn, could lead to the levels of satisfaction reported here. In addition to predicting that dissatisfaction might result from disclosure of a cancer diagnosis, previous authors have suggested that many patients would be unable to understand or integrate this very threatening information. We found some support for this possibility in that a sizeable minority of patients reported not knowing their diagnosis even though their doctors stated that they had been told. It is possible that the mode of communication was ineffective or incomplete or that the patient was incapable, either cognitively or psychologically, of grasping the information. While this problem might be dealt with by training doctors in better ways to communicate to anxious or medically unsophisticated patients [11], these data are reassuring in that patients who knew less than they were told were no more dissatisfied than patients who had not been told that they had cancer. Patients may be able to deny or forget information that they are not able to deal with. Doctor-patient communication is a complex and multifaceted issue and we have focussed on only one aspect of the communication process, leaving many questions unanswered. Until further research is conducted, these results should not be generalized beyond the case of breast cancer, which is a well-publicized disease where the surgery may alert patients to the diagnosis even when they are not told. Also, comparable data are not available from other countries, even within Europe, raising questions about the generalizability of these findings. Nonetheless, our results are promising. By including this evaluation in a randomized trial, we have been able to obtain a high response rate from a large and representative sample that includes 4% of all patients newly-diagnosed with breast cancer patients in Italy during the accrual period. The large majority of patients were able and willing to complete questionnaires, and we obtained variance in patient ratings of satisfaction, which indicates that patients were able to • make discriminations on level of satisfaction rather than giving uniformly high satisfaction rating, as has been the case in some other studies [12].
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5. Brewin TB. The cancer patient: Communication and morale. BMJ 1977; 2: 1623-7. 6. Amir M. Considerations guiding physicians when informing cancer patients. Soc Sci Med 1987; 24: 741-8. 7. Liberati A, Confalonieri C, Martino G et al. Patients' assessment of quality of care: A survey of a group of breast cancer patients in Italy. Tumori 1985; 71: 491-7. 8. GIV1O. What doctors tell patients with breast cancer about diagnosis and treatment: Findings from a study in general hospitals. Br J Cancer 1986; 54: 319-26. 9. MackiUop WJ, Stewart WE, Ginsburg AD, et al. Cancer patients' perceptions of their disease and its treatment. Br J Cancer 1988; 58: 355-8. 10. Siegel S, Castellan NJ. Non parametric statistics for the behavioral science. Second Edition. New York: McGraw-Hill Book Company, 1988. 11. Maguire P. Faulkner A. Improve the counselling skills of doctors and nurses in cancer care. BMJ 1988; 297: 847-9. 12. Davis AR, Ware JE. Involving consumers in quality assessment Health Aff 1988; 7: 33-48.