Introduction
In the past years communication skills of physicians disclosing cancer, the effect
of skills trainings on physicians’ communication, and on the needs of patients being
confronted with diagnosis of cancer have been investigated extensively [1]
[2]
[3]. Patients wish that physicians disclose reliably and name prognosis honestly [2]
[4]
[5]. Patient-centred communication includes shared decision-making regarding therapy
and may lead to better acceptance and adherence of patients in the course of treatment
[6]. During a disclosure it is necessary that physicians ensure that patients understand
all important information [7]. Patients tend to underestimate the extent of the disease and overestimate their
chance of cure [2]
[4]
[8]. This may lead to misunderstanding and lack of recollection about the goal of treatment
(palliative versus curative).
The design of this study is based on a previous study performed at a department of
Pneumology in Basel, Switzerland, with 71 lung cancer patients [9]. The Basel study showed that patients did not know if the aim of therapy was curative
or palliative, although they had understood they have lung cancer and knew the therapy
proposed to them. 61 % of the patients were not satisfied with communication about
the individual treatment goals.
The aim of the Berlin study was to replicate the Basel study on a wider scale to improve
validity, to promote a progressive mindset and to consider the following questions:
Why is it that patients don’t understand and/or are not sufficiently satisfied with
the communication(s) from the physician?
How do we make these conversations easier for both?
Methods and patient selection
Methods and patient selection
All consecutive patients with new diagnosed lung cancer between February 2010 and
October 2010 were eligible for the study. The stage of Lung cancer was in accordance
with the seventh edition of the TNM Classification of Malignant Tumours [10]. All treatments of lung cancers in stadium I, II, IIIa and IIIB had a curative intention
– knowing that stage IIIb has a poor outcome. All stage IV lung cancers were regarded
to be in a palliative situation. Those patients fulfilling the inclusion criteria (fluency
in German and not critically ill) were approached 1 to 3 days after the diagnosis
of lung cancer had been disclosed. The Ethical Committee of Berlin Medical University
(Charité) approved the study and written informed consent was obtained from each patient.
A total of 117 patients met the eligibility criteria. 12/117 (10 %) declined participation,
and 4/117 (3 %) were lost to follow-up. Records were excluded from analyses when incomplete.
If the patient was unavailable to meet in person, the questionnaire was administered
by telephone. Complete data sets were available for 101/117 (86 %) of patients.
All 28 physicians who did the disclosure conversations were approached and agreed
to participate (28/28, 100 %). Four were pulmonary specialists, and 24 were residents.
Measures
Patient information recall and satisfaction with communication were elicited with
a structured interview. Two interviewers were blinded to the content of prior physician-patient
communication. After disclosure of diagnosis physicians completed a report of information
regarding diagnosis, treatment procedure, and goal of treatment within 72 hours.
In accordance with the previous study [9] patients were asked the following three questions:
-
“What did your physician tell you about your diagnosis?”
-
“What did your physician tell you about the treatment procedure?”
-
“Did the physician discuss the treatment goal?”
Responses regarding diagnosis were rated “fully congruent” when patients could say
they had lung cancer with or without metastasis, “partially congruent” when they answered
with only partial descriptions, and “incongruent” when they did not mention cancer.
Answers about the treatment procedure were scored “fully congruent” when patients
exactly described the treatment procedure, “partially congruent” when they had mentioned
part of the proposed treatment procedure, and “incongruent” when they answered otherwise.
With respect to treatment goal patients´ answers were only rated “fully congruent”
if they could recall whether the primary goal was to cure or palliate the cancer.
Satisfaction with communication was assessed by the following questions:
-
“How would you rate the way the diagnosis of cancer was discussed with you?”
-
“How would you rate the way the treatment procedure for your cancer was discussed
with you?”
-
“How would you rate the way the goal of treatment was discussed with you?”
Patients could choose five different levels: excellent, good, satisfactory, inadequate
or poor.
Patients were administered the German version of the validated European Organization
for Research and Treatment of Cancer Quality of Life Questionnaire QLQ-C30 (EORTC
QLQ-C30) [11], and the Hospital Anxiety and Depression Scale (HADS) [12] regarding quality of life, depression and anxiety.
Statistical Analyses
Regarding satisfaction measures, response options were prioritized into two groups:
HIGH (excellent/good) and MID-LOW SATISFACTION (satisfactory/inadequate/poor). Sociodemographic
data and ratings of physician’s communication were characterized by descriptive statistics.
Quantitative variables were summarized as means ± standard deviations (SD). For comparisons
of categorical variables between groups chi-square tests were used. Multivariate logistic
regressions with forward selection (stepwise forward, pin 0.05, pout = 0.10) were used to examine the extent to which patient characteristics and physician
characteristics could predict patients’ recall and satisfaction. The significance level
for all tests was set to 0.05.
Results
Patient characteristics are summarized in [Tab. 1]. The higher proportion of the sample was male (59 %), married (59 %), with children
(76 %), retired (74 %). 41 % of patients were accompanied during the disclosure of
diagnosis.
Table 1
Patients’ sociodemographic and disease-related characteristics.
Characteristics
|
Patients
|
|
No.
|
%
|
Total no. of patients
|
|
101
|
|
Age
|
mean (± SD)
|
66.5 (± 10)
|
|
Sex, male
|
|
60
|
59
|
Civil state
|
never married
|
9
|
9
|
|
married
|
60
|
59
|
|
widower
|
11
|
11
|
|
divorced
|
17
|
17
|
|
seperated
|
1
|
1
|
|
in relationship
|
3
|
3
|
Children
|
none
|
24
|
24
|
|
1
|
24
|
24
|
|
2
|
36
|
36
|
|
3
|
5
|
5
|
|
4 and more
|
12
|
12
|
Country of birth
|
Germany
|
84
|
83
|
|
EU
|
10
|
10
|
|
non-EU
|
7
|
7
|
Education
|
academic
|
12
|
13
|
Employment
|
employed
|
26
|
26
|
Stage of disease
|
I
|
2
|
2
|
|
II
|
10
|
10
|
|
III
|
27
|
27
|
|
IV
|
62
|
61
|
Treatment approach
|
curative approach
|
28
|
28
|
|
palliative approach
|
73
|
72
|
“Quality of life” measure is shown in [Fig. 1]. The sample of this study had a high score for the functional scales, a high or
healthy level of functioning, and a low level of physical symptoms. In the fatigue
and dyspnea scale, patients scored slightly higher than in the other symptom scales.
The score for the global health status is high.
Fig. 1 Mean scores for the European Organisation for Research and Treatment of Cancer Quality
of Life Questionnaire (EORTC) QLQ-C30 for patients.
The prevalence of HADS scores indicative of anxiety disorder and depression were 8 %
and 11 %, respectively.
Patient recall of diagnosis, treatment procedure, and goal of treatment is presented
in [Tab. 2]. Patient recall of information was high: regarding diagnosis it was fully congruent
in 86 of 100 (86 %) patient cases; in 78 of 96 (81 %) patient cases it was fully congruent
with the information about treatment procedure; and in 39 of 93 (42 %) cases it was
fully congruent regarding treatment goal. Recall of goal of treatment was significantly
worse than recall of diagnosis or of treatment procedure (p < 0.001).
Table 2
Congruence between physicians’ information and patients’ recall regarding diagnosis,
the treatment procedure, and the goal of treatment.
Physician’s information
|
Congruence of patient and physician
|
|
Fully congruent
|
Partially congruent
|
Incongruent
|
Ntotal
[1]
|
No.
|
%
|
No.
|
%
|
No.
|
%
|
Diagnosis
|
100
|
86
|
86
|
10
|
10
|
4
|
4
|
Treatment procedure
|
96
|
78
|
81,3
|
3
|
3,1
|
15
|
15,6
|
Treatment goal
|
93
|
39
|
42
|
–
|
–
|
54
|
58
|
Curative
|
26
|
6
|
23
|
–
|
–
|
20
|
77
|
Palliative
|
67
|
33
|
49
|
–
|
–
|
34
|
52
|
1 Due to missing data, Ntotal differs from 101. Percentages were calculated using indicated totals.
Of the 26 patients who were informed that the therapeutic approach was to be curative,
six of them (23 %) recalled this information fully, compared with 33 of 67 (49 %)
patients in the palliative care group. Congruence of this information was significant
higher among patients in the palliative care group (p = 0.021).
Patients were highly satisfied with communication of diagnosis (83 /100; 83 %); likewise
with treatment procedure (75/97; 77 %) ([Tab. 3]). However, satisfaction with communication of the treatment goal was 53 % (51/97)
and significantly lower than satisfaction with communication of diagnosis (p < 0.001) and satisfaction with communication of treatment procedure (p < 0.001). There was no significant difference between patients with curative (11/27; 41 %)
versus palliative goal (40/70; 57 %) regarding satisfaction with communication of
treatment goal (p = 0.147).
Table 3
Patients’ satisfaction with communication about diagnosis, treatment procedures, and
goal of treatment.
|
Patient satisfaction with communication
|
|
|
High
|
Mid to low
|
|
No.
|
No.
|
%
|
No.
|
%
|
Diagnosis
|
100
|
83
|
83
|
17
|
17
|
Therapy
|
97
|
75
|
77
|
22
|
23
|
Treatment goal
|
97
|
51
|
53
|
46
|
47
|
Curative
|
27
|
11
|
41
|
16
|
59
|
Palliative
|
70
|
40
|
57
|
30
|
43
|
Patients who were informed by male physicians were significantly more satisfied with
the disclosure about the treatment goal (p = 0.007) ([Tab. 5]). Further, patients who were disclosed by male physicians recalled the treatment
goal significantly better (p = 0.027), and patients with progressed disease (stage IIIB and IV) did understand the treatment
goal significantly better than patients with limited disease (p = 0.018) ([Tab. 4]).
Table 4
Univariate analyses of patients’ and physicians’ factors associated with patients’
recall of the treatment goal and prognosis.
|
Patients’ recall of treatment goal and prognosis
|
|
Correct recall
|
Incorrect recall
|
p-value
|
Physician factor, n (%)
|
Age (> 34.5 years), in 46 of 93 cases (49.5 %)
|
24/39 (61.5 %)
|
22/54 (41 %)
|
p = 0,048
|
Sex (male), 53/93 (57 %)
|
29/39 (74 %)
|
24/54 (44 %)
|
p = 0,004
|
Patient factor, n (%)
|
Sex (male), 54/93 (58 %)
|
22/39 (56 %)
|
32/54 (60 %)
|
p = 0,784
|
Married, 55/93 (59 %)
|
23/39 (59 %)
|
32/54 (59 %)
|
p = 0,978
|
Children (yes), 71/93 (76 %)
|
30/39 (77 %)
|
41/54 (76 %)
|
p = 0,911
|
German, 76/93 (82 %)
|
29/39 (74 %)
|
47/54 (87 %)
|
p = 0.119
|
Employed, 22/93 (24 %)
|
8/39 (20,5 %)
|
14/54 (26 %)
|
p = 0.554
|
Academic (yes), 12/93 (13 %)
|
7/12 (58 %)
|
5/12 (42 %)
|
p = 0.217
|
Stage (IIIb, IV), 74/93 (80 %)
|
37/39 (95 %)
|
37/54 (68,5 %)
|
p = 0,002
|
Accompanied, 38/93 (41 %)
|
20/39 (51 %)
|
18/54 (33 %)
|
p = 0.082
|
GHS ( > 50), 34/93 (37 %)
|
12/39 (31 %)
|
22/54 (41 %)
|
p = 0,324
|
Depressive, 10/91 (11 %)
|
3/38 (8 %)
|
7/53 (13 %)
|
p = 0,424
|
DMP congruent, 40/93 (43 %)
|
15/39 (38,5 %)
|
25/54 (46 %)
|
p = 0,451
|
Religion (yes), 52/93 (56 %)
|
24/39 (61,5 %)
|
28/54 (52 %)
|
p = 0,353
|
Living alone, 27/93 (29 %)
|
11/39 (28 %)
|
16/54 (30 %)
|
p = 0,881
|
Table 5
Univariate analyses of patients’ and physicians’ factors associated with patients’
satisfaction with communication of the treatment goal and prognosis.
|
Patients’ satisfaction with communication of the treatment goal and prognosis
|
Satisfied
|
Not satisfied
|
p-value
|
Physician factor, n (%)
|
Age (> 34.5 years), in 46 of 97 cases (47 %)
|
27/51 (53 %)
|
19/46 (41 %)
|
p = 0,252
|
Sex (male), 54/97 (56 %)
|
35/51 (69 %)
|
19/46 (41 %)
|
p = 0,007
|
Patient factor, n (%)
|
Sex (male), 58/97 (60 %)
|
33/51 (65 %)
|
25/46 (54 %)
|
p = 0,299
|
Married, 57/97 (59 %)
|
30/51 (59 %)
|
27/46 (59 %)
|
p = 0,990
|
Children (yes), 74/97 (76 %)
|
37/51 (72,5 %)
|
37/46 (80 %)
|
p = 0,362
|
German, 80/97 (82,5 %)
|
43/51 (84 %)
|
37/46 (80 %)
|
p = 0,616
|
Employed, 25/97 (26 %)
|
16/51 (31 %)
|
9/46 (20 %)
|
p = 0,184
|
Academic (yes), 12/97 (12 %)
|
7/12 (58 %)
|
5/12 (42 %)
|
p = 0.670
|
Stage (IIIb, IV), 75/97 (77 %)
|
41/51 (80 %)
|
34/46 (74 %)
|
p = 0,447
|
Accompanied, 41/97 (42 %)
|
22/51 (43 %)
|
19/46 (41 %)
|
p = 0,855
|
GHS ( > 50), 36 /96 (37,5 %)
|
21 /51 (41 %)
|
15 /45 (33 %)
|
p = 0,428
|
Depressive, 11/95 (12 %)
|
3/49 (6 %)
|
8/46 (17 %)
|
p = 0,086
|
DMP congruent, 43/97 (44 %)
|
21/51 (41 %)
|
22/46 (48 %)
|
p = 0,510
|
Religion (Yes), 56/97 (58 %)
|
25/51 (49 %)
|
31/46 (67 %)
|
p = 0,067
|
Living alone, 29/97 (30 %)
|
14/51 (27,5 %)
|
15/46 (33 %)
|
p = 0,580
|
Sociodemographic and disease-related characteristics of the Berlin sample are similar
to those of the Basel sample. In the Berlin study more patients were treated with
palliative approach (72 %) than in the Basel study (52 %). Scores of the EORTC QLQ-C30
questionnaires in this study comply with the results of the Basel study.
Recall of diagnosis was significant better in the Berlin study (86 %) than in the
Basel study (57 %) (p < 0.001). Recall of treatment procedures and the treatment goal
was similar in both studies.
In both studies satisfaction with communication of diagnosis and treatment procedure
was comparable (76 % versus 83 % and 73 % versus 77 %). Satisfaction with communication
of the treatment goal was slightly better in the Berlin study (53 % versus 39 %).
Discussion
For the most part the results of the Basel study could be confirmed in the Berlin
study. Deviant from the results of the Basel study, patients in Berlin recalled significantly
better which diagnosis had been disclosed. Comparable to the Basel results recall
of treatment procedure were good, recall of the treatment goal and prognosis lower.
Similar to the Basel study patients in Berlin were satisfied with communication about
diagnosis and treatment procedure, less satisfied with communication about the treatment
goal and prognosis.
Academic status of patients had no influence on the results. It was not significant
and not even a non-significant trend (10 – 20 %; p = 0.217) that academics recall
the goal of therapy better and were more satisfied with the conversation about the
goal of therapy. We therefore think that this issue cannot be supported by our data.
However, we found a non-significant trend that, patients who had been accompanied
by a relative or loved one for the disclosure of diagnosis had a better recall of
the goal of treatment (p = 0.082). In contrast to academic status we think that this
factor may be important and only hampered by the sample size of the study. Future
studies need to further evaluate this factor.
Salient is that only a small number of patients presented with depression or anxiety
(8 % and 11 %, respectively), similar to the Basel study (7 % and 12.7 %). In the
general population and within cancer patients other authors mention twenty to twenty-five
percent for depression and anxiety [13]
[14]
[15]
[16]. Depression has no influence on recall of information and satisfaction with communication
after the disclosure of diagnosis.
Patients’ recall of diagnosis and treatment procedure after disclosure of lung cancer
diagnosis was very good, whereas recall regarding treatment goal and prognosis was
worse. Similar results revealed a study by Weeks et al [17]. Other authors discovered that patients are overwhelmed by medical details during
the disclosure of diagnosis [18]
[19]. Further explanations for insufficient patient knowledge after disclosure of lung
cancer might be found with physicians. Unlike other countries, training of communication
skills has not been established on a university level [20]
[21]
[22]. With adequate training physicians’ communication skills can be improved [23]
[24]
[25].
It is remarkable that more patients recall the palliative treatment goal. Perhaps
the “bad news” is not as difficult for the patient to absorb as the physician might
think it is.
Other studies have shown that patients often underestimate the extent of their disease
and overestimate prognosis [8]
[26]. In the present study patients more often failed to hear the chance of cure with
appropriate therapy. This suggests they have underestimated their prognosis. This
may be because the patient associates cancer with death, and does not hear the possibility
of a curative approach.
Usually physicians disclose the diagnosis first. Treatment options, treatment goal
and prognosis are mentioned in the second half of the disclosure conversation. Under
time pressure these rather sensitive fields for patients, and burdening themes for
physicians, may get less attention [27]. Especially in case of bad prognosis physicians without previous training in communication
tend to withdraw part of the information to protect the patient [28]
[29], and underestimate patients` need to be fully informed about their prognosis [30]. Maybe patients are less satisfied because they get insufficient information, insufficient
time and empathy to process these facts.
Significantly more patients were satisfied with communication about treatment goal
and prognosis if disclosed by a male physician. In previous studies satisfaction was
dependent on the physician’s competence to show empathy [6]
[31], female physicians were ranked better for their communication skills than male physicians
[32]. In this recent study male physicians may have discovered a new way of empathic
communication.
More patients in the Berlin study recalled the palliative treatment goal than in the
Basel study. The Berlin study took place in a large certified lung cancer center with
focus on consistent guidelines regarding diagnosis and treatment procedures and with
established palliative care. Furthermore this center provides patients with valuable
written information about the course of lung cancer. This fact might influence the
disclosing conversation and influences the recollection of the palliative treatment
goal significantly.
Limitations
To avoid influence on the way physicians communicate physician-patient interaction
was not documented at the time. Neither videotapes nor audiotapes nor the length of
interaction were recorded. Without documentation it is impossible to tell what really
happened and what information the physician provided, or how sensitive, empathetic,
clearly worded, thorough, or honest the physicians’ approach was, or the patient’s
reaction of course, which is critical indeed.
In summary, a representative sample of newly diagnosed lung cancer patients was investigated
in a specialized lung cancer center. Patients’ recall of and satisfaction with information
about diagnosis and treatment procedure was very good and moderately good about the
treatment goal and prognosis. More patients recalled the palliative treatment goal
and patients were significantly more satisfied with communication about treatment
goal and prognosis if disclosed by a male physician. Further research is needed to
understand how we can improve patients’ recall of and satisfaction with information
about the treatment goal and prognosis.