Communication, quality of life and age: results of a 5-year prospective study in breast cancer patients

J. Kerr1, J. Engel1,+, A. Schlesinger-Raab1, H. Sauer2 and D. Hölzel1

1 Munich Cancer Registry, Munich; 2 Med Klinik III, Klinikum Großhadern, Ludwig Maximilians University, Munich, Germany

Received 10 May 2002; revised 5 August 2002; accepted 19 September 2002


    Abstract
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
Background:

Previous studies have employed short follow-up periods or examined only certain aspects of quality of life (QoL). This study aimed to examine the effect of communication on breast cancer patients’ QoL and to investigate the role of age in this relationship.

Patients and methods:

In a prospective, observational study breast cancer patients were sent questionnaires, including the European Organisation for Research and Treatment of Cancer QLQ-C30, over 5 years.

Results:

Forty-five per cent of the sample reported that some aspect of the communication they received was unclear and 59% wanted to speak with medical staff more. Patients under 50 years rated social and psychological help as more important, they were more aware of such services, had greater contact with support groups but were less satisfied with the information they received. Seventeen of the 27 QoL variables were significantly worse (P <0.01), up to 4 years after diagnosis, for those patients reporting unclear information. For patients over 50 years, QoL was significantly (P <0.001) worse when communication was unsatisfactory. Operation method or arm problems did not mitigate the association between communication and QoL.

Conclusions:

Communication is clearly a vital clinical skill that may play a role in patient QoL.

Key words: breast cancer, communication, elderly patients, quality of life


    Introduction
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
Information reassures cancer patients, provides them with realistic expectations, empowers them to enquire further and, as a result, prevents unnecessary distress [1, 2]. Although communication is a common topic, many studies do not look at its effect on patient health outcomes [3]. Psychological sequalae are often limited to anxiety and depression and only measured in the short term [3]. Many assessments take place in general practice and, when in oncology, are frequently confined to the early stages such as during treatment choice or radiation therapy [46]. Younger patients have been found to have greater information needs [1, 7, 8] but the relationship between age, communication and quality of life (QoL) has not been investigated. Patient numbers in studies may have also prevented analyses by operation groups. Moreover, few studies have employed standard, reliable questionnaires.

The impact of communication on long-term QoL and cancer-specific symptoms remains unclear. This study presents the results of a 5-year prospective study of breast cancer patients’ QoL, measured by the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30. The effect of age is also investigated.


    Patients and methods
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
The Munich Cancer Registry records all cancer patients treated in Munich and the surrounding area, a population of around 2.3 million. Essential clinical details such as tumour classification, surgery, therapy, disease progression and life status are registered. Physicians complete standard forms concerning diagnosis, primary therapy, follow-up and palliative care. Original clinical reports are also available. In 1996, the government provided funding for a focused field study in QoL in breast cancer patients treated and resident in the region. Patients were recruited over a 2-year period. At the time of primary treatment, clinicians requested informed consent from patients to receive a QoL survey. The first questionnaire was sent from the field study 6 months after the recorded diagnosis date and thereafter at regular intervals over 5 years to willing participants.

The first part of the patient survey established details of treatment, medicines being taken and aftercare. At this stage there was also a section concerning arm problems. The second part of the survey was the EORTC QLQ-C30. Thirty questions combine to make five functional scales, a global QoL measure, and symptom assessment including pain, fatigue, diarrhoea and constipation. Further questions addressed the issue of body image. The impact of the illness on the patient’s overall and sexual relationship with a partner was also assessed. Finally, patients were asked whether they were worried about their future health. These questions essentially reflected the EORTC BR23. The sexual questions, however, were toned down. Additional questions, termed as lifestyle variables, asked whether patients felt insecure, avoided contact with people and whether their daily habits were affected. Patient responses were converted to a 0–100 scale. High scores represent positive outcomes for all variables.

In the third section of the survey, demographic details were obtained including marital status, education, medical insurance and employment. Finally, patients’ satisfaction with their hospital stay, doctor communication and aftercare were assessed. Patients indicated whether the information they received concerning seven separate core communication elements (see Table 1, last line) was clear and complete or unclear and incomplete. If any of these elements were judged negatively then communication for that patient was coded as unclear. QoL was assessed at each time point, but satisfaction with doctor communication only in the first survey.


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Table 1. Support and communication variables by age
 
Data were analysed using SPSS for Windows (Version 10.0). Our own analysis and previous studies have shown that patients with disease progression have worse QoL scores [9]. Patients’ QoL scores were only considered, therefore, before disease progression was recorded. Thus, those with metastases at diagnosis were not included. Those who developed metastases, local recurrence or lymph node recurrence during the course of the study were excluded from the analyses after that time point. Patients’ reasons for not returning questionnaires were not sought. Chi-square tests were used to examine age differences across the psychosocial and communication variables and demographic and clinical differences between those experiencing clear or unclear communication, as well as differences in response rates. Since a number of QoL variables at various time points were skewed, a common phenomenon in QoL data [10], non-parametric tests were employed throughout, as recommended [11]. Mann–Whitney U tests were performed to assess variations in QoL. Due to multiple statistical testing, a significance level of P <0.01 was predetermined for the QoL analyses.


    Results
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
Questionnaires were sent to 1131 breast cancer patients of whom 88% (n = 990) returned at least one questionnaire. Those who did not respond were more likely to have disease progression (P <0.001). Out of the available clinical and demographic variables, only education (P <0.015) and comorbidity (P <0.001) varied between those who returned one, two or three or more questionnaires. There was no significant difference in global QoL in patients with different response rates. By the fifth year, 243 patients were excluded due to disease progression.

Of those who completed the third section of the survey (n = 980, 99%), 44.7% reported that the information they received was unclear and 58.6% wished they had more time to speak with medical staff. Table 1 indicates the percentage of patients who rated support as important, who received care and who lacked sufficient information. A higher percentage of younger patients rated social and psychological help as important, they were more aware of such services and had greater contact with support groups. Despite this, they still wished for more contact with fellow suffers, psychologists and social workers. Patients under 50 years of age were also more likely to report that information about their illness was incomprehensible and/or incomplete.

Table 2 indicates the clinical and demographic differences between those who reported clear or unclear communication. Generally disease and demographic differences did not affect judgement of communication. Those with arm problems, however, were significantly more likely to report that the information they received was unsatisfactory. Those in employment and in clinics treating more patients were also more likely to report information deficiencies. Since younger patients are generally treated in larger hospitals this calculation was repeated, stratified by age. This analysis revealed that only patients 50 years and over reported poorer communication in larger hospitals.


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Table 2. Communication variable by clinical and demographic groups
 
QoL scores, which varied significantly depending on whether communication was clear or unclear, are presented in Table 3. Seventeen out of 27 variables were significantly worse when communication was insufficient. Functioning, symptom, body image, lifestyle and other worries scores were all affected. Only the sexual relationship domain was not influenced by the quality of the doctor–patient interaction. Scores remained significantly different up to 4 years after diagnosis. By the fifth year no differences were statistically significant; however, the trend was in the same direction.


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Table 3. Significance of differences in mean quality-of-life (QoL) scores between those reporting clear or unclear communication
 
While non-parametric statistics do not allow for interaction testing, when stratified by age (Figure 1), for patients over 50 years, QoL was significantly (P <0.001) worse when communication was unsatisfactory. There was no significant effect of communication on younger patients’ QoL, except for their happiness with their appearance (P <0.01). For both operation groups, communication remained a significant (P = 0.001) influence on QoL (Figure 2). Both breast-conserving therapy and mastectomy patients reported lower scores when communication was suboptimal. Since arm problems have such a strong effect on QoL [12], the significance of communication for QoL was considered for both those with and without arm problems (Figure 3). For those without arm problems, communication was a significant influence on emotional (P <0.001) and social functioning (P <0.001) and financial (P = 0.005) and future health worries (P <0.001). For those with arm problems, who reported unclear communication, role (P = 0.006) and emotional functioning (P = 0.007), body image scores (P <0.001) and other worries (P = 0.01) were significantly worse. Overall, the trend remained that those reporting unclear communication also reported lower QoL.



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Figure 1. Significant quality-of-life variables stratified by age (year 1).

 


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Figure 2. Significant quality-of-life variables stratified by operation method (year 1).

 


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Figure 3. Significant quality-of-life variables stratified by arm problems (year 1).

 

    Discussion
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
When considering communication problems the issue of causality has to be discussed from the outset. First, patient reports of incomprehensible or incomplete information do not necessarily mean that the doctors failed to give sufficient information. The shock of a cancer diagnosis can affect information processing to such an extent that a patient does not register what information is given [13]. Patients accept their illness at different rates, so the appropriate time for information varies [14]. Nonetheless, doctors themselves admit that their communication skills are suboptimal and research testifies to the lack of digestible information from clinicians [15, 16]. Doctors can also be selective in what they report in an attempt to protect the patients [17, 18].

Secondly, does poorer communication lead to worse QoL or are those who are more distressed more likely to report communication problems? There is research which demonstrates that anxiety inhibits information processing [14, 19]. There is also evidence, however, that lack of information leads to distress [3, 6, 20]. Information can help patients gain a sense of control; on the other hand, some information can cause patients to worry more [21, 22]. Nonetheless, communication is vital to the doctor–patient relationship and a core clinical skill, especially in oncology.

This research did not measure ‘baseline’ QoL before or at diagnosis, principally because it would not have been a reliable assessment. If the patient was already ill then QoL must have been affected. As soon as the diagnosis is given, even before the deleterious effects of treatment, the patient’s outlook must alter. Nor did we directly assess the information which doctors provided. As a descriptive study we also cannot establish causal links. Four randomised control trials, however, have provided level-one evidence that patients whose doctors had received communication training, experienced better QoL [3]. While all the reasons for the missing data are not available, nonetheless, the sample can be considered representative. With these limitations in mind, the results can be discussed and compared with previous studies.

In this study, almost half the patients judged that the information they received on several medical aspects was incomprehensible or incomplete. Over half also wanted more opportunity to speak with medical staff. These rates are higher than in a recent survey in Austria where 12% were dissatisfied with the information they received and 28% wanted more time with their doctor [23]. Another study reported that over half the patients received inadequate information [24] and 20% were dissatisfied in a Scottish sample [6]. In our survey, patients were asked general questions about the information received and specific questions, in simple language, concerning diagnosis, prognosis etc. Most patients (95%) responded positively to the general questions. Only when more detailed questions were posed did problems arise. Clearly the type of question partly determines the level of satisfaction with information. Surveys should cover detailed medical aspects as well as life-management information as these have been identified by patients as important areas [8, 14, 20, 25].

Most patients rated social and psychological help as important. Despite this, only a third had contact with a self-help group, psychologist or social worker. In hospital, only half the patients were aware of such support facilities. Awareness of such services was higher (68–90%) in an Australian study, but their use was lower (2–8%) [26]. Higher awareness may increase use, but the support must also be convenient, accessible and not carry any stigma. In a ‘breast buddy’ care programme, 60% of patients requested a patient mentor suggesting that such offers, when appropriately framed, are utilised [27].

Overall, QoL differed by up to 10 points between those reporting clear and unclear communication. This amount of difference in QoL has been previously judged as clinically significant [28]. The effect of poor communication at diagnosis remained significant for up to 4 years. The trend, however, persisted in the fifth year, when patient numbers declined. Focus groups, conducted in breast cancer patients with at least 4 years’ disease-free survival, indicated that lack of information at the time of treatment continued to be a problem. The researchers suggested a single post-treatment feedback session as a solution [29].

In our study, those with limited movement and swelling of the arm reported more communication problems. If arm problems were not anticipated, because the doctor had not spoken about them, they may have had greater impact on the patient and led to higher reporting. In addition, those suffering arm problems who received insufficient information had worse QoL. Clearly poor communication exacerbates the significance of side-effects on QoL. Qualitative research, for example, revealed ‘...if I could understand what was happening to my body, then I could understand the symptoms, then they wouldn’t be frightening...’ [30]. Only recently has the extent of arm complications become clear, over 60% in this sample for example. If clinicians better appreciated the prevalence and consequences of arm comorbidity they might be encouraged to talk about it more openly with the patient, give more information concerning prevention, and encourage patients to seek early treatment.

Although patients under 50 years of age reported less satisfaction with communication, those who reported unclear information did not suffer significantly worse QoL. Several studies suggest that younger patients have greater information needs [1, 7, 8]. In our study these needs may not have been fulfilled. Younger patients also rated psychological and group help as more important, as well as feeling they wanted to talk more with other cancer patients, psychologists and social workers. Although doctor communication remains essential, perhaps these sources of support would help younger patients to adjust better. In addition, greater efforts should be made to communicate with older patients. In our study, larger hospitals in particular appeared to neglect this duty. It should be noted that patients over 70 years of age were grouped with over 50-year-olds in this analysis because they displayed the same trends. Previous research also indicates that doctors inform the elderly less [31]. Although fewer older patients judged communication as poor, this may simply reflect lower expectations [1]. Importantly, those who did feel a lack of information suffered worse QoL. Improving communication with over 50-year-olds may improve their QoL.

QoL is an important issue. Although these findings paint a bleak picture, it is vital to realise that much can be done to rectify the situation. Communication skills training studies show that oncologists can improve their ability to ask open questions, listen, empathise, evaluate patient needs, including psychological problems, and check understanding [15, 32]. Patients should also receive relevant written information and may benefit from the presence of a relative during bad-news consultations [1, 2]. In contrast to improvements in treatment, which are costly and slow to develop, giving information is a reasonably cheap intervention with much potential [2].


    Acknowledgements
 
We would especially like to thank all the patients who completed questionnaires and showed us how important it was for them to support our study. The authors also thank, in particular, E. Liebetruth, A. Hucke and B. Stegmann for processing the data and all colleagues of the Munich Cancer Registry (MCR) for their cooperation and the reliable infrastructure. Such a work-intensive observational study is impossible without dedicated staff. Additionally we thank all the hospitals and departments that participated in the documentation of the medical data and patient recruitment. The Munich field study was funded by the Federal Ministry of Health. The Munich field study was integrated in the MCR, which is part of the Munich Comprehensive Cancer Centre, an institution of the Ludwig Maximilians University. Additional funding was given by the Deutsche Krebshilfe, the Bavarian Ministry of Health and the Wilhelm Sander Foundation.


    Footnotes
 
+ Correspondence to: Dr J. Engel, Tumorregister München, Institut für Med. Informationsverarbeitung, Biometrie und Epidemiologie, Ludwig Maximilians Universität, München, Marchioninistraße 15, D-81377 Munich, Germany. Tel: +49-89-7095-4489; Fax: +49-89-7095-4753; E-mail: engel{at}ibe.med.uni-muenchen.de Back


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 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
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