Introduction

Delivering bad news and truth telling are complex and frequently discussed topics in the international medical literature. Questions regarding whether and how a patient has to be informed [11, 16], the ethical implications of telling the truth and giving bad news [19, 20] have been discussed. Major cross-cultural differences in truth-telling attitudes and practices have been demonstrated [21, 22], and these disparities seem to be significant between western and nonwestern countries [10, 13]. For example, in the United States, physicians show greater interest in patient autonomy [24], usually referred to as patient involvement in medical decisions; the role of the physician seems to be that of providing honest and complete information while the patients and caregivers are elected decision makers [17]. In Italy, however, until recently, autonomy was synonymous with isolation, and it was considered appropriate for the physicians and the staff to conceal both the diagnosis and prognosis of seriously ill patients to maintain their hope [2, 9, 22]. The practice of partial- or nondisclosure—especially in the oncology ward—is still common, and the general level of patients’ awareness of diagnosis and prognosis is still limited. Two examples from truth-telling studies in Italy highlight this issue. Only 34% of Italian respondents in a survey of different European Intensive Care Units believed that full information should always be given to patients. Moreover, a discrepancy between what physicians state they believe and what they actually do in their own practice is discussed in the paper [23]. In a second study, the percentage of Italians dying of cancer who had received information on diagnosis and prognosis had been estimated. Results showed that only 37% had received information on diagnosis and 13% on the poor prognosis [4]. Despite persistent cultural resistance, the shift in truth telling attitudes and—to a lesser extent—in truth telling practices in Italy appears to reflect a genuine growing tendency toward patients’ right acknowledgment [22]. Over the past decade, informed consent policies and truth-telling attitudes have suddenly evolved in Italy [5, 22]. The reasons for this shift in attitude seem comparable to the ones in the U.S. and Western countries, including diagnostic and therapeutic advances in medicine (in particular in the field of oncology), widely available clinical knowledge (via mass media and internet research), and legal requirements for privacy and informed consent [1].

In a context where truth-telling attitudes and practices are slowly evolving, a very important issue to explore is patients’ perceptions and preferences regarding the manner in which physicians deliver bad news—especially in the oncology setting, since effective communication has been closely related to better emotional adjustment and increased patient’s compliance with doctor recommendations [6, 7]. Despite the growing interest in the patients’ perspective, most of the suggestions about how to give unfavorable news have been described from the physicians’ point of view rather than on the basis of real patients’ preferences and emotions. One study, conducted in the United States in 2001 by Parker et al. [15], assessed to what extent the current guidelines regarding delivering bad news are considered as important by cancer patients themselves. In a sample of 351 cancer patients, the results showed that the U.S. patients’ preferences fell into three main categories: content (what and how much information is told), support (emotional support during the interaction), and facilitation (setting and context). Furthermore, patients in this study identified the informative aspects and physician expertise as the most important factors in the doctor–patient relationship. The study was replicated in different nonwestern contexts in order to explore differences and similarities among countries. Both a Singapore [3] and a Japanese [8] study were conducted using a similar questionnaire and similar data collection methods, but with only partially similar results. In the Singapore study, content and support were found to be the only two important categories. In the Japanese study, four factors were important, with support identified as the most important dimension.

To our knowledge, no previous study has explored the issue of Italian patients’ preferences about how they are told about their cancer. Due to cross-cultural differences, it is possible that the Italian patients may have unique issues to be considered as important. The aim of the study was to assess Italian patients’ preferences regarding the physicians’ way of delivering the news of their cancer diagnosis. We examined the factor structure of the MPP-It and whether demographic and medical variables were associated with patients’ preferences.

To reach our primary goal, we used the Measure of Patients’ Preferences (MPP) developed by Parker et al. for their study [15] The MPP includes 46 items and was generated by an extensive review of the literature on breaking bad news including consensus guidelines. The questionnaire was used to examine whether the current recommendations in cancer communication are considered important to cancer patients themselves.

Materials and methods

Patients

All the patients involved were treated at the A. Manzoni Hospital, in Lecco, Italy, which has around 850 beds. The study was approved by the hospital’s ethical committee. To be eligible to participate in the research, patients must have been diagnosed with cancer and informed of their condition at least 1 month earlier; diagnoses included new cancer, recurrence, or disease progression. Other eligibility criteria included: 18-years of age or older at diagnosis; no history of psychiatric disorders noted in history taking for cancer diagnosis; and a native Italian speaker.

Patients were either actively receiving chemotherapy or they were visiting the clinic for follow-up monitoring. The head nurse or the physician-on-call identified patients who met the study’s inclusion criteria. The patients were approached before their visit or the chemotherapy in the waiting room, informed about the study, and asked to participate. Patients who agreed to participate were asked to think back to the first time they were told about their cancer while responding to the items in the questionnaire. At least one of the researchers remained available to answer questions while participants completed the questionnaire.

Method

The Measure of Patients’ Preferences (MPP) questionnaire was used. The questionnaire was developed by Parker et al. [15] and was designed to assess patients’ preferences regarding the manner in which physicians deliver news about cancer. The MPP consisted of 46 items regarding the main aspects of doctor–patient communication and was generated by an extensive review of the literature and interviews with physicians, researchers, and patients. The questionnaire was translated for the present study by an American native English speaker who has lived in Italy for 6 years, fluent in Italian, and with a clear understanding of the Italian culture and language nuances. Next, the research team reviewed the questionnaire to improve the language and format. For practical reasons, the layout of the questionnaire was modified in the way patients marked their answers: the scores were presented for each item in a pre-print form of a Likert scale from 1 point (not at all important) to 5 points (absolutely important); patients had to cross out the chosen number instead of writing it. Five cancer patients were asked to complete the questionnaire to confirm its clarity and comprehensibility. No modifications were introduced at this stage, and the questionnaire—the Italian Measure of Patients’ Preferences, MPP-It—was considered ready for use. Clinical and demographic data were collected in a separate sheet in order to maintain anonymity.

Statistical analysis

Descriptive analysis was used to examine the clinical and demographic data collected.

The 46 items were entered into a factor analysis (extraction method: principal components analysis; rotation: varimax). Factor analysis was used to group the items according to the different aspects of patients’ preferences. Items with factor loadings of 0.50 or more were considered reliable and retained.

The means and SDs of the factors were also organized in descending order. A regression analysis was used to examine the relationship (p < 0.05) between the medical and demographic characteristics and the MPP-It factors previously identified.

Results

Patients and disease characteristics

Two hundred twenty patients were invited to participate in the study. Ten patients declined to participate (for ethical reasons no further details were asked of declining patients); thus, the final sample included 210 patients, resulting in an overall consent rate of 95.5%. Fifty-seven patients were men (27.1%) and 153 were women (72.9%). The mean age was 59 years (range, 28–94 years). Ninety-two patients (43.8%) completed the questionnaire during their chemotherapy and 118 (56.2%) while waiting for their follow-up visit. The majority of patients had less than a college degree (63.5%). As far as their profession is concerned, most were retired (40.5%) or housewives (22.4%). The majority were married or with a domestic partner (67.6%) and lived in Lecco or nearby (85.5%). The mean time since patients received their first diagnosis was 39 months (range, 1–172). Breast (46.7%) and digestive (23.3%) cancer were the most represented. Forty-nine and one-half percent of patients were free of disease when they completed the questionnaire.

The sociodemographic and medical characteristics of the sample are shown in Table 1.

Table 1 Socio-demographic and medical characteristics of patients (N = 210)
Full size table

Factor analysis

We identified three main factors on the basis of a Scree plot. Together the three factors accounted for 44.31% of the total variance. This total variance represents the proportion of variance across all the items accounted for by the three factors.

The three factors with their loaded items are shown in Table 2.

Table 2 Factor analysis of the measure of patients’ preferences (Extraction method: Principal Component Analysis. Rotation Method: Varimax with Kaiser Normalization)
Full size table

Factor 1—Information (Talking About the Disease). Fourteen items were loaded on this factor, accounting for 30.94% of the total variance. Items in this factor were concerned with the dialogue about the disease and treatment options (e.g., “My doctor telling me the best treatment option” and “Being given information about new experimental therapies”) and with the patients’ opportunity to participate in the visit (e.g., “Being given enough time to ask all of my questions” and “Having my doctor ask me how much I want to know about my cancer”).

Factor 2—Support (The Emotional World of the Patient). Ten items werer loaded on this dimension and accounted for 7.68% of the total variance. These items referred to the supportive and relational aspects of the physician–patient encounter (e.g., “Comforting me if I become emotional” and “Telling me it’s okay if I become upset”). Also included were elements related to the physician’s role as a “consultant” about changes in the patients’ home and social lives (e.g., “Having the doctor tell me about resources in the community” and “My doctor helping me to figure out how to tell my family and friends about the cancer”).

Factor 3—Care (The Ideal Doctor). Ten items loaded on this factor, accounting for 5.69% of the total variance These items related to the patients’ desires and expectations about their doctors visits and the doctor’s personal attributes (e.g., “The doctor telling me how I can get in touch with him/her,” “Making me feel comfortable enough to ask any question on my mind,” and “My doctor telling me that he/she will do everything he/she can to cure my cancer”).

As for the psychometric properties of the three factors, internal consistency was assessed by calculating Cronbach’s alpha for each of the three subscales of the MPP-It. These subscales have good internal reliability (0.93 for the Information subscale, 0.89 for the Support one, 0.88 for the Care one). Furthermore, as in Parker et al. [15], the correlation among the three subscales were significant but of low magnitude (Pearson’s r < .35).

Ratings of patients’ preferences in receiving bad news

Of the 46 questionnaire items, we identified those that the participants rated the highest and lowest. The mean ratings and standard deviations are listed in descending order in Table 3.

Table 3 Items rated ad more and less important by patients
Full size table

The majority of items that received the highest ratings referred to the informative nature of the doctor regarding the biological aspects of the disease when delivering bad news. Delivering the diagnosis in person was rated by patients as the most important item (mean rate 4.65, SD 0.60) when receiving a cancer diagnosis. Physical contact between the physician and the patient during the visit was the lowest marked item (mean rate 2.36, SD 1.55).

Relationship between patients’ preferences and demographic and medical data

Multiple regression analysis was used to examine the associations between the three identified factors of the MPP-It and the demographic and medical characteristics of the patient sample. Sociodemographic (gender, age, education, marital status) and medical (cancer recurrence, stage of disease) data were converted into dummy variables. Cancer status was divided into primary disease (with or without metastasis) and remission; treatment status was distinguished as chemotherapy vs follow-up; the level of education ranking was categorized into college or no college degree. Marital status was categorized as unmarried or married.

No significant associations between the demographic and medical characteristics and the information and care factors were identified. On the contrary, the support subscale was significantly related to the level of education (stand. beta = −2.9, p < 0.05). Patients without a college degree rated the support subscale as more important than those with university education (t test=3,62, p < 0.001).

Discussion

Truth telling is an important issue in the international medical literature on the doctor–patient relationship in particular when a poor diagnosis had to be told. Differences in the process of delivering news arise from the delicate balance between autonomy and beneficence in medicine, under the influence of cultural variables. Cultural differences between western and nonwestern countries seem to be still present in this field, although signs of change are present in those countries with a well-known attitude of nondisclosure, such as Italy. In a changing Italian medical context, the question that the study aimed to answer was whether the current recommendations in the cancer literature and the patient-centered style are considered as important by cancer patients themselves.

Factor analysis indicated that the patients’ preferences can be grouped into three factors: information, support, and care. The first two factors seem to indicate that the patients look for an open dialogue regarding the medical and therapeutic characteristics of the disease and for an encounter in which shared decision-making is valued. It is interesting to note that these two factors seem to be cross-cultural, being present in the American study [15] but also in similar Singapore [3] and Japanese [8] replications. In these countries, as well as ours, the content and process of information giving are crucial components of the disclosing of the diagnosis, alongside with the necessity of having support. The factor “care” seems to be an Italian peculiar one. The study from Singapore identified only two previously mentioned factors, while the Japanese study presented two different factors for the providing of information (named “method of disclosure of the bad news” and “provision of additional information”). The American patients identified a third factor, named “facilitation,” concerning setting and context variable. The Japanese study presented a forth factor, named ‘setting’: in both studies these factors may be described, as the elements of the physical or social environment of the consultation. The Italian patients seem to introduce a different factor, that of the emotional setting due to the mental status of the interactional subject (i.e., the physician) involved in the communication process. This difference may be interpreted as a cultural distance from the American population, which shift from a paternalistic view to a more informative and open truth-telling attitude that happened between the 1960 s and the late 1970 s [14, 18], while for our country, it is a still ongoing process [22]. The crucial importance of the doctor as a person who cares and is personally involved with the patient may lookout a still asymmetric relation between the doctor and the patient, a relation in which the doctor is up. It is interesting to note that, while the Italian and the Japanese medical cultures have been described as similar in terms of the strong western influence resulting in a shift from the traditional doctor–patient relationship to a less protective role of the physician [10, 22], this do not seem to be the case in our study.

As far as the most and least important items are concerned, a comparison between the ten highest and the lowest rated items in the American and Italian studies showed that five out of the ten most important items are the same in the two countries. The same could be observed for the study conducted in Singapore. Interestingly, the two highest-rated items present only in the Italian sample (“Waiting until all test results are in and he/she is certain before telling me” and “Being told as soon as possible”) regard the “when” the news should be told, and seem to be contradictory. At the same time, among the lowest rated items, two out of ten are present only in our study (“The doctor giving me a written summary of the information to take home,” “Doing things to show his/her concern for me.”), and they seem very different ways for favoring patients’ participation.

Conclusion

Although there is increasing interest in the international literature on the topics of bad news communication and truth telling, relatively little empirical work has focused on the patients’ preferences about the existing guidelines. The aim of our study was to explore the Italian patients’ way of thinking about the current reccomendations about how bad news should be delivered.

Overall, the data seem to reflect some ambiguity among Italian patients, who mostly want to be informed about the diagnosis but are confused about this opportunity: the right to be informed in a timely manner in order to participate in their care is both desired and avoided; a participatory model of relationship that is less asymmetric is not considered as important. These data are consistent with the professional perspective regarding truth telling. The absence of extensive research in this field in Italy could reflect—as Surbone et al. pointed out [22]—a persistent benevolent paternalism leading to lack of interest in this type of research. A recent study by our group aimed at identifying cross-cultural implicit definitions of the concept of patient-centeredness in an American and an Italian group of health care professionals further provided evidence that, despite claims, professionals’ attitudes regarding truth telling and the patient’s involvement is slowly moving [12]. Results of this study demonstrated that the respect for the patient’s autonomy was a core aspect of patient-centered care only by the American group. The Italian group showed a more implicitly paternalistic approach. The findings of the present study seem to confirm this caution in the practice of telling the truth also from the patients’ point of view.

Although our work presents some interesting information about Italian cancer patients’ preferences, we recognize its limitations. First of all, the sample of the study is relatively small and nonrepresentative. Despite the high rate of patients’ acceptance in participating in the study, the recruitment was from one hospital in Lecco, and over 85% of the patients included in the study reside in Lecco or the surrounding area in Northern Italy. The largely nonsignificant results of the regression analyses may be also due to the small sample size and insufficient power to detect associations. Lastly, in our study, we used the same method for collecting data as in the American study which was developed for a different country and culture. This choice allowed us to make a direct cross-cultural comparison. But it is possible that a preliminary—qualitative—in depth analysis of cancer patients’ preferences would have generated different items not even imaginable at this point. Further research could better explore the issue of which are the Italian patients’ preferences about the manner in which physicians deliver news about cancer diagnosis by directly asking patients’ opinion and point of view in an in-depth interview and with a qualitative research method.