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© 2000 American Society for Clinical Oncology How Are You Feeling? Who Wants To Know? Patients’ and Oncologists’ Preferences for Discussing Health-Related Quality-of-Life IssuesFrom the Division of Psychosocial Research and Epidemiology and Department of Internal Medicine, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital Amsterdam, the Netherlands. Address reprint requests to N.K. Aaronson, PhD, Division of Psychosocial Research and Epidemiology The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, the Netherlands; email naaron{at}nki.nl
PURPOSE: This study investigated (1) the attitudes of cancer patients toward discussing health-related quality-of-life (HRQL) issues; (2) the association between such attitudes and patients’ characteristics; and (3) oncologists’ attitudes and self-reported behavior regarding these same issues. PATIENTS AND METHODS: Two hundred seventy-three patients receiving palliative chemotherapy and ten physicians were asked to complete a series of questionnaires. RESULTS: Almost all patients wanted to discuss their physical symptoms and physical functioning and were also willing to address their emotional functioning and daily activities. However, 25% of the patients were only willing to discuss these latter two issues at the initiative of their physician. Patients varied most in their willingness to discuss their family and social life, with 20% reporting no interest in discussing these issues at all. Female patients were more reluctant to discuss various HRQL issues than male patients. Older and less well-educated patients were more likely to prefer that their physician initiate discussion of HRQL issues. All physicians considered it to be primarily their task to discuss the physical aspects of their patients’ health, whereas four physicians indicated that discussion of psychosocial issues was a task to be shared with other health care providers. All physicians indicated that they generally defer to their patients in initiating discussion of psychosocial issues. CONCLUSION: Although both patients and oncologists seem willing to discuss a wide range of HRQL issues, communication regarding psychosocial issues may be hampered by competing expectations as to who should take the lead in initiating such discussions.
OVER THE COURSE of the past several decades, the assessment of patients’ health-related quality of life (HRQL) has come to play an increasingly prominent role in the field of clinical oncology. Most efforts, to date, have focused on the use of HRQL assessments in clinical research, where the aim is to better understand the impact of cancer and its treatment at the aggregate level (ie, in descriptive and evaluative studies among groups of patients undergoing both standard and experimental treatments).1,2 Although the process has been a gradual one, the use of HRQL assessments in clinical studies is now widely accepted and, in fact, is advocated by the major clinical trials groups both in the United States and in Europe.3-5 More recently, interest has been expressed in using standardized HRQL assessments in daily clinical practice as a means of monitoring changes in the symptom experience and self-reported functional health of individual patients over time and in facilitating communication between doctors and their patients.6-10 An important assumption underlying such use of HRQL assessments is that both patients and their physicians perceive the value of discussing a wide range of physical and psychosocial health issues during routine medical encounters and are willing to do so. Although there is a substantial body of empirical literature addressing communication between cancer patients and their physicians, most studies have focused on a unidirectional information-exchange process, ie, from the physician to the patient. The available evidence indicates that almost all patients want to be fully informed by their physician about the various aspects of their disease and their treatment.11-13 However, although the expressed desire for information is uniformly high, patients vary widely in the type and amount of information-seeking behavior they actually exhibit during medical visits. In general, younger, better-educated, and female patients tend to ask for and receive more information from their doctors than do older, less well-educated, and male patients.14-16 Relatively little research has been done on the preferences of patients for disclosing information about themselves to their doctors. Higher patient satisfaction and even better health outcomes have been found to be related to a communication style in which physicians ask their patients not only about their physical health problems but also about their emotional concerns.17-19 Not surprisingly, most patients express a desire to feel understood by their physician.20,21 This implies that patients want their doctor to be aware, at least in general terms, of the impact of their disease and of their treatment on the quality of their lives. However, it remains unclear as to whether patients consider it appropriate and are willing to discuss with their doctor the full range of psychosocial issues incorporated typically into HRQL assessments. With regard to physicians’ attitudes and behavior, studies in the primary care setting indicate that general practitioners vary widely in their willingness to discuss psychosocial issues with their patients.16,22-24 Importantly, it has been demonstrated that patients often look to their doctor for cues as to whether it is appropriate to discuss such issues during medical visits. For example, Levinson and Roter22 found that patients disclose significantly more information about their emotional and social functioning when their doctor has a positive attitude toward the psychosocial aspects of patient care. Few data are available on the attitude of oncologists toward discussing and incorporating (standardized) HRQL assessment in clinical practice. In a survey of 60 medical oncologists, Taylor et al25 found that the majority of respondents considered it important to elicit HRQL information from their patients but that they tended to do so informally. Only 7% of respondents reported that they assessed the HRQL of their patients in a structured manner, whereas an additional 14% stated that they routinely used published HRQL data in discussions with their patients. The current study was undertaken to investigate (1) the attitudes and preferences of cancer patients toward discussing a range of HRQL issues with their oncologists; (2) the association between such attitudes and patients’ sociodemographic characteristics, performance status, and self-reported HRQL; and (3) oncologists’ attitudes and self-reported behavior regarding the discussion of HRQL issues with their patients.
Study Sample and Procedures The patients and physicians were participating in a longitudinal study carried out between May 1996 and January 1999 in the Antoni van Leeuwenhoek Hospital, a specialized cancer treatment center located in Amsterdam, the Netherlands. This study investigated the efficacy of incorporating standardized quality-of-life assessments as a routine part of the outpatient palliative treatment of cancer patients as a means of facilitating doctor-patient communication and of increasing physicians’ awareness of their patients’ physical and psychosocial health problems. The study used a prospective, randomized, control-group design. Before randomization, the patients and physicians were queried about their attitudes toward and preferences for discussing specific HRQL issues, and the physicians were asked to report the extent to which they generally raised such issues with their patients. These baseline data form the basis of the current report.
Physician Sample
Patient Sample
Assessment of Patients’ Attitudes and Preferences
Assessment of Physicians’ Attitudes and Behavior
Patients’ Current Performance Status and HRQL
Patient and Physician Sociodemographic Data
Statistical Analysis
Physician and Patient Sample Ten of the 12 medical oncologists from the department of internal medicine agreed to participate in the study. The two oncologists who declined to participate, both male, expressed difficulty with having their consultations audiotaped (a procedure used as part of the larger experimental study in which they were being asked to participate). Of the 10 participating oncologists, four were female. Their mean age was 44 years (range, 35 to 53 years) and they had, on average, 11 years of work experience in oncology (range, 2 to 24 years). A total of 382 patients were invited to participate in the study, of whom, 273 agreed (response rate, 71%). Of the 109 nonparticipants, 50 declined because of very poor physical or emotional condition, 43 reported insufficient interest or lack of time, and 16 had difficulty with the audiotape recording. The demographic and clinical characteristics of the patient sample are listed in Table 1. Seventy-two percent of patients were female, with a mean age of 56 years (range, 24 to 85 years). Nearly 80% of the patients lived with their spouse and/or other family members. Approximately one quarter of the patients had completed primary school/lower-level high school (6 to 10 years of schooling), approximately half had completed middle-level high school (11 to 14 years of schooling), and the remaining one quarter had attended higher-level vocational training/university (16 years of schooling or more). Patients had a wide range of cancer diagnoses, with breast cancer being the most prevalent (45%). A substantial minority of patients (30%) were assessed as having a relatively impaired performance status (Eastern Cooperative Oncology Group status of 2, 3, or 4). The patients showed substantial variation in scores on the COOP/WONCA charts, with the full range of scores observed on all charts (Table 2). Combining the two response categories indicating the highest levels of symptoms or impaired functioning, approximately half of the patients reported moderately to severely compromised physical fitness and overall health, whereas approximately 30% reported moderate to severe limitations in daily role activities. Impaired emotional and social functioning was reported by approximately 18% of the patients. Moderate to severe fatigue and pain was reported by approximately 25% and 12% of the sample, respectively.
Patient Preferences Patient preferences for discussing various HRQL issues are listed in Table 3. More than 95% of the patients expressed a desire to discuss physical aspects of their disease and treatment, and between 80% and 90% were willing to initiate such discussions themselves. Similarly, more than 90% of patients expressed a desire to discuss problems in their daily lives and their feelings with their doctor; however, approximately one quarter of these patients were willing to do so only at the initiative of their doctor.
There was substantially greater reluctance on the part of patients to discuss their family and social life, with approximately 20% stating that they would prefer not to do so at all and another 28% to 36% indicating that they would do so only if their doctor raised the issue first.
Correlates of Patient Preferences Older patients (> 60 years) were more likely than younger patients to prefer that their physician initiate discussion of all HRQL issues. These differences were statistically significant for physical symptoms, functioning in daily living, and relationship with partner and family. Education was found to be associated significantly only with preferences for discussing physical condition, with a greater percentage of patients with lower levels of education preferring physician-initiation of such discussions as compared with those with higher levels of education. Neither patients’ performance status as rated by the physicians nor their self-reported HRQL was related significantly to preferences for discussing various HRQL issues.
Physicians’ Attitudes and Self-Reported Behavior
Physicians’ self-reported communication behavior during medical consultations is reported in Table 5. Half of the physicians reported that they were generally the one to initiate discussion of the physical aspects of their patients’ health, whereas the remaining half indicated that such discussions were initiated equally by themselves and by their patients. In contrast, none of the physicians indicated that they were generally the one to initiate discussion of their patients’ emotional functioning. Rather, in the majority of cases this was left up to the patient. For the remaining HRQL domains, five of the 10 physicians reported that their patients’ social functioning was generally not discussed at all during the consultations, and three reported this to be the case for their patients’ relationship with their partner or family.
The aims of the current study were to assess cancer patients’ preferences for and oncologists’ attitudes and self-reported behavior toward discussing various HRQL issues during outpatient medical visits in the palliative treatment setting. In general, the results indicate a willingness on the part of both patients and their physicians to discuss a wide range of such issues. However, this general conclusion needs to be qualified, in that the results varied as a function of the specific HRQL domain under consideration. As one might expect, the large majority of patients expressed a desire to discuss their physical condition and their symptom experience, and they were generally willing to initiate such discussions themselves. Whereas almost all patients also wanted to discuss the impact of their disease and its treatment on their daily lives and on their emotional condition, approximately one quarter of patients considered it appropriate to do so only if such issues were raised by their physician. An even larger percentage of patients (between 29% and 37%) indicated that they would generally await some signal from their doctor before discussing issues surrounding their relationship with their partner or family and their social functioning. Approximately 20% of patients indicated no interest at all in discussing these latter issues with their doctor. Similar results have been reported in other medical settings,16,29 suggesting that patients may feel uncertain as to whether it is appropriate to raise psychosocial issues with their doctor, and that they, in a sense, await permission to do so. This seems to be the case particularly among older and less well-educated patients. Patients’ self-reported health status was not found to be associated significantly with their preferences for discussing HRQL issues with their physician. This finding is consistent with other research30 and suggests that patients are willing to discuss a range of HRQL issues, even when they are not actually experiencing problems or symptoms in a specific HRQL domain at a given moment in time. Interestingly, we found that women were less likely than men to report interest in discussing their social or family life with their doctor. A possible explanation for this finding is that women may be more inclined to discuss such issues within their informal social network and, thus, may feel less of a need to do so with their health care provider. Such an interpretation is in line with previous research indicating that female cancer patients have significantly larger networks of support and are more likely than male patients to rely on friends or family for affective support.31 Strikingly similar findings were obtained when querying the oncologists about their attitudes and behavior toward discussing various HRQL issues with their patients. All of the physicians considered discussion of the physical aspects of their patients’ health to be primarily their responsibility. This was less so in the case of psychosocial health issues, where a number of the physicians indicated that this task was only partly their responsibility and was to be shared with other health care providers. Importantly, a number of the physicians in our sample reported that they tend to defer to their patients in raising psychosocial health issues during outpatient consultations. In some cases, this seems to lead to a conspiracy of silence, whereby psychosocial topics are left unaddressed because both physicians and their patients are reluctant to raise such issues without a clear signal from the other that this is appropriate and desired. Further research is needed to determine whether there are specific topic areas that patients and/or their physicians are particularly reluctant to discuss (eg, sexuality) and the perceived reasons for such hesitation (eg, lack of time, lack of experience, embarrassment, and so on). Additionally, it would be of interest to determine whether patients feel more comfortable discussing certain issues with other health care providers (eg, nurses, social workers, and so on). We recognize that these results need to be interpreted with some caution for several reasons. First, the study was conducted in a single hospital, and, although the patient sample was large, the number of physicians involved was limited. The setting in which this study was carried out, a specialized cancer treatment center, probably reflects a best case scenario, with experienced oncologists and an integrated, multidisciplinary approach to patient treatment and care. Second, our results are based on expressed attitudes and self-reported behavior, which may differ from the actual communication behavior exhibited during medical consultations. Any bias introduced by the self-reported nature of the data would probably be in the direction of overestimating the attention directed toward psychosocial issues during outpatient medical consultations.32,33 Third, although the same range of HRQL issues was used when querying both patients’ and physicians’ about their communication behavior, a slightly truncated list of HRQL issues was used in assessing physicians’ attitudes. This was done primarily out of concern with respondent burden. Our concern was that the physicians, whose cooperation was required for a longer period of time (for the longitudinal part of the study), would be annoyed by being asked a set of identical questions twice, once in reference to their attitudes and again in reference to their behavior. Nevertheless, we do not believe that fielding a few additional attitudinal questions would have led to different conclusions. The physicians in our study reported discussing social functioning and relationship with family (the two topics not included in the physicians’ attitude list) least often of all HRQL topics. We believe that this self-reported verbal behavior most likely reflects a parallel attitude; that it is not (entirely) their role to discuss such issues with their patients. Finally, patients were asked about their preferences for discussing various HRQL issues during the period of active treatment. Although the issues addressed would seem of general relevance, one cannot rule out the possibility that patients’ preferences may vary as a function of their location along the disease and/or treatment trajectory (eg, around the time of diagnosis, during active treatment, during follow-up, at the time of disease relapse, and so on). Use of a longitudinal study design could uncover any such patterns over time. In conclusion, although both patients and oncologists generally seem willing to discuss a wide range of HRQL issues during outpatient consultations, communication regarding psychosocial issues may, in some cases, be hampered by competing expectations as to who should take the lead in initiating such discussions. A number of studies have demonstrated that training programs can be effective in enhancing physician communication skills21,34-37 and in encouraging patients to verbalize their needs and concerns.38,39 More recently, the introduction of standardized HRQL assessments has been advocated as a means of both identifying HRQL issues of concern to individual patients and of triggering or cueing the discussion of those issues in routine outpatient clinical practice.40-43 Future research efforts should be directed at testing empirically the value of such interventions in enhancing doctor-patient communication.
Supported by grant no. NKI 95–1134 from the Dutch Cancer Society.
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Copyright © 2000 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
2 statistic was considered the most appropriate to test the relationship between patients’ sociodemographic and functional characteristics and their communication preferences. For purpose of these analyses, patient age was collapsed into two categories (
60 years and > 60 years), and the five response categories of the COOP/WONCA charts were collapsed into two (no to limited problems v moderate to severe problems). The statistical significance level was set at P < .05. 
