Key words epidemiology - cancer registry - breast
Schlüsselwörter Epidemiologie - Krebsregister - Mammakarzinom
Introduction
In 2010, the breast cancer centres certified in accordance with the criteria of the
German Cancer Society (Deutsche Krebsgesellschaft e. V. [DKG])[
1
] were offered the opportunity to participate in a survey of patients with primary
mammary cancer. This survey was conducted by the Institute for Medical Sociology,
Health Services Research, and Rehabilitation Science (IMVR) of the Faculty of Humanities
and the Faculty of Medicine of the University of Cologne. The aim of the survey was
to record comparable data from as many breast cancer centres as possible by means
of cross-hospital, uniform questionnaires and survey design in order to allow for
a comparison between the results of the different hospitals, e.g. for the purpose
of benchmarking. The processing of the survey and the survey instrument are largely
identical to the patient surveys conducted according to the criteria of the certified
breast centres in North Rhine-Westphalia since 2006. The “Cologne patient questionnaire
for breast cancer” (KPF-BK), which surveys a variety of subareas of health care provision
in hospitals as well as health-related quality of life, was used. Clinical and treatment
data were supplemented by the hospital staff [1 ]. The survey presented here was free of charge for the participating hospitals. An
advantage for the hospitals was that the participation in the survey fulfilled a requirement
for (re-)certification. Nearly two thirds of the DKG-certified breast cancer centres
participated in the survey. The implementation of the survey, the questionnaire and
selected results are presented here.
Materials and Methods
All DKG-certified breast cancer centres were offered participation in the survey.
As the breast cancer centres in North Rhine-Westphalia, which are certified according
to the criteria of the federal state, were participating in a mandatory survey at
the same point in time, these centres were not offered participation in the survey
described here. Information about the survey and all documents required for the survey
were sent to all breast cancer centres included in the survey and all their operational
sites. Patients undergoing surgery during the survey period were asked for their consent
to participate in the study shortly before their discharge. The inclusion criteria
included in particular: surgery during the current hospital stay, initial diagnosis,
i.e. no local recurrence, discharge during the survey period: 22nd March until 30th
November 2010, at least one malignant finding, at least one post-operative mammary
carcinoma histology, and ICD code of the verified diagnosis: C50.x or D05.x.
Subject to the consent of the patients, the hospitals submitted the clinical indicators
(including grading, tumour size, nodular status, metastases and type of operation)
and the addresses once per week to the IMVR, which then sent out the questionnaires
to the patients.
The expenditure for the participating breast cancer centres was therefore manageable.
The declarations of consent were collected and sent to the IMVR once per week. The
survey was then conducted by post and, following the hospital stay, in accordance
with the “Total Design Method” [2 ]. The first letter sent included a postage paid return envelope and two reminder
letters.[
2
]
The Cologne patient questionnaire for breast cancer (KPF-BK) was used for the survey.
This is a modular questionnaire which measures a multitude of partial performance
dimensions of treatment on the ward, with more than 60 key indicators. These include
e.g. the admission procedure, the interaction with staff as perceived by the patients,
the quality of the accommodation, the quality of the information provided about the
treatment and psycho-social support, and overall satisfaction. In addition, the health-related
quality of life and socio-demographic information of the patients were collected with
the EORTC modules.
In most cases the items of the various key indicators in the KPF-BK were subjected
to factor analysis and reliability tests and then added on a scale (indicator) and
divided by the number of items. The items were encoded in such a way that disapproval
of a statement was assigned low values and approval high values (e.g. “do not agree
at all” = one point or “completely agree” = 4 points). The range of values of the
indicators is usually between one and four. The indicator names were chosen in such
a way that a high value corresponds to agreement with the substantive meaning of the
name and a low value to disapproval of this meaning. Accordingly, a high value such
as “support by doctors” expresses the opinion that the patients felt they had been
well supported by the medical staff during their stay in hospital. The 22 indicators
treated in this way are presented in the first part of the results report. The presentation
of the individual items then follows. The complete report is available on the websites
of the DKG and the IMVR.[
3
] Selected results are presented in the present paper.
Results
128 of 195 DKG-certified breast cancer centres and 160 of the 251 surgical locations
participated in the patient survey. 8226 of the 9354 patients who were asked for their
consent were prepared to take part in the survey ([Fig. 1 ]). A questionnaire was sent to all 8226 patients agreeing to take part in the survey.
A total of 7405 replies were received from the patients. For different reasons 87
patients were not able to participate in the survey.[
4
] 7318 patients sent back the completed questionnaire. 17 questionnaires could not
be included in the analysis, as only 30 % or less of all questions had been answered.
The analysis thus included a total of 7301 questionnaires: 88.76 % of the surveys
sent to patients were therefore suitable for evaluation. The number of completed and
evaluable questionnaires from the individual breast cancer centres ranged from 1 to
166. In order to ensure the anonymity of the respondents, only results from centres
from which at least 6 evaluable questionnaires were received were included in the
report.
Fig. 1 Declarations of consent: consent and rejection of survey.
The high return quota and the very satisfactory participation rate of the hospitals
testify that the random sampling for the included collective was highly representative.
The results in respect of the age of the respondents and type of operation confirm
this ([Tables 1 ] and [2 ]).
Table 1 Age distribution of patients in % (n).
Age in groups
%
n
18 to 29 years
0.5
38
30 to 39 years
3.5
250
40 to 49 years
17.4
1 256
50 to 59 years
27.3
1 976
60 to 69 years
29.6
2 143
70 to 79 years
17.3
1 252
80 years and older
4.4
319
Total
100
7 234
No information
67
Table 2 Type of operation (information by hospital staff) in % (n).
Type of surgery
%
n
Mastectomy without direct reconstruction
20.1
1 379
Mastectomy with direct reconstruction
4.8
326
Breast-conserving therapy
74.5
5 115
Other information
0.6
43
Total
100
6 863
No information
438
The survey data were prepared for the participating breast cancer centres in the form
of a results report. This report compared the results of all indicators for the different
breast centres. The presentation is in pseudonymised form: the breast cancer centres
are identified by a number which is available only to the respective breast cancer
centre. In this way, the centres are able to compare their own evaluation with those
of the other centres without their identity being apparent to others. The report can
be downloaded by the general public, however not the identification numbers. The results
serve as a comparison of breast cancer centres with each other, the analysis of strengths
and weaknesses, and as a starting point for measures for improvement in the sense
of the implementation of the ideal of a “learning hospital” [3 ].
Overall, the results demonstrated a high level of patient satisfaction with the treatment
in the DKG-certified breast cancer centres. For example, only a few patients were
dissatisfied with their medical treatment and the cleanliness of the hospitals. The
trust in doctors and nursing staff is also exceptionally high. However, clear potential
for improvement was demonstrated, for example in terms of the provision of information
and inclusion of patients in their treatment. In addition, in part distinct differences
exist between the different breast cancer centres.
Exemplary selected results of the survey on the subjects of opting for a breast cancer centre, support by doctors and nursing staff, provision
of information and self-help are presented. Furthermore, regional differences are examined.
Deciding on a breast cancer centre
When asked about the reasons for the decision on the treating breast cancer centre,
patients mostly stated recommendation, reputation of the breast cancer centre, proximity
to place of residence and certification. The reputation of a doctor was mentioned
by approximately one third of all patients ([Table 3 ]).
Table 3 Decision factors for the selection of the breast centre (ticks in % and n).
Which factors mainly influenced you in your decision on the breast centre?
ticked
%
n
Proximity to place of residence
43.2
3 156
Recommendation
45.7
3 335
Certification (= quality seal) of breast centre
35.8
2 616
Good reputation of the breast centre
43.6
3 186
Specialised treatment options
11.0
806
Good reputation of a doctor in the breast centre
31.2
2 281
Own good experience with the hospital
17.4
1 267
Information which I found in the Internet.
4.8
351
Other
3.6
265
No answer ticked
61
For the most mentioned reason of “recommendation”, the KPF-BK includes a question
about the person recommending the centre. The gynaecologist was mentioned most often
as the source of recommendation (59.4 %); however, 12 % of patients also named relatives/acquaintances
as the source of recommendation.
Support by doctors and nursing staff
The level of “support by doctors” was ascertained on the basis of three items ([Table 4 ]). The individual questions can be interpreted on their own or as an index, according
to the scale structure. Overall, it was demonstrated that a high level of doctorʼs
support was perceived by the patients. An overall mean value of 3.53 on a scale from
one to four was found. Clear differences exist between the breast cancer centres.
Accordingly, the mean values per centre range from 3.07 to 3.85.
Table 4 Support by doctors, scale items in % (n).
What is your opinion of the doctors on the ward?
Disapproval (1, 2)
Approval (3, 4)
No information
% (n)
% (n)
n
I could rely on the doctor when I had problems with my illness.
4.9 (346)
95.1 (6 753)
202
The doctors supported me in such a way that dealing with my illness was easier.
10.8 (769)
89.2 (6 354)
178
The doctors were prepared to listen to the problems relating to my illness.
9.7 (691)
90.3 (6 415)
195
The indicator “support by nursing staff” shows comparable results. An overall mean
value of 3.58 was found, while the mean values of the centres range between 3.13 and
3.87. The results of the items are summarised in [Table 5 ].
Table 5 Support by nursing staff, scale items in % (n).
What is your opinion of the nursing staff on the ward?
Disapproval (1, 2)
Approval (3, 4)
No information
% (n)
% (n)
n
I could rely on the nursing staff when I had problems with my illness.
3.6 (257)
96.4 (6 865)
179
The nursing staff supported me in such a way that dealing with my illness was easier.
6.3 (447)
93.7 (6 680)
174
The nursing staff was prepared to listen to the problems relating to my illness.
10.1 (715)
89.9 (6 358)
228
Information
While staff-related indicators (support and trust in doctors and nursing staff) as
well as the indicators of room quality (e.g. cleanliness and room equipment) showed
good overall results, the potential for improvement became clear in terms of the extent
of information and the way information is provided. This is demonstrated here for
the example of the indicator “emphatic communication of information” and the need
of information following discharge, the “psycho-social need for information”.
Fewer patients indicated their satisfaction with the five items of emphatic communication
of information by the doctor ([Table 6 ]) than on questions about the support by the medical staff. The scale mean value
for all patients is 3.40; the best value for a breast centre is 3.69 and the worst
3.04. The results on the indicator “psycho-social need for information” indicate the
subjects for which the patients would have liked more information ([Table 7 ]).
Table 6 Empathetic communication of information, scale items in % (n).
The doctors on the station …
Disapproval (1, 2)
Approval (3, 4)
No information
% (n)
% (n)
n
… informed me about the breast cancer diagnosis empathetically.
15.4 (1 070)
84.6 (5 903)
328
… explained the further treatment steps with sensitivity.
14.4 (1 020)
85.6 (6 074)
207
… explained procedures in detail.
12.2 (868)
87.8 (6 262)
171
… explained procedures in an understandable way.
10.6 (758)
89.4 (6 365)
178
… gave me sufficient time for consideration.
16.1 (1 121)
83.9 (5 825)
355
Table 7 Psycho-social information requirements, scale items in % (n).
Would you have liked …
No (1)
Yes (2)
Donʼt know
No information
% (n)
% (n)
% (n)
n
… more information about a healthy lifestyle (nutrition, alcohol, smoking, etc.)?
70.0 (5 019)
24.2 (1 733)
5.8 (414)
135
… more information about physical and nervous stress in everyday life?
57.6 (4 117)
36.0 (2 569)
6.4 (459)
156
… more information about self-help groups?
80.0 (5 711)
13.6 (969)
6.4 (457)
164
… more information on books and brochures about your illness?
83.2 (5 945)
12.1 (867)
4.6 (330)
159
… more information about health-promoting measures?
55.8 (3 972)
39.0 (2 778)
5.2 (372)
179
… more information about help and support at home?
72.7 (5 170)
19.3 (1 369)
8.0 (568)
194
When patients expressed a desire for additional information, this was mostly concerned
with the physical and nervous stress in daily life resulting from the treatments (36 %)
and the health-promoting measures (39 %). How this need for information could be met
often remained open at this point. The comparatively low number of patients who would
have liked more information on books and brochures suggests that patients prefer to
receive information from “personal sources”, e.g. the hospital staff. This refers
not only to doctors, but also to qualified (specialised) nursing staff.
Self-help
As can be seen from [Table 7 ], 80 % of the patients stated that they do not require more information on self-help
groups. For many patients, however, self-help groups are of great importance if support
is required during and after a hospital stay. The KPF-BK was developed in collaboration
with self-help groups and other parties and thus also documents the contact to and
information about self-help groups in the two questions shown in [Table 8 ].
Table 8 Information and contact with self-help groups in % (n).
What is your opinion?
No
Yes
Did not want
No information
% (n)
% (n)
% (n)
n
Were you informed about self-help groups in the hospital?
28.5 (2 047)
56.3 (4 042)
15.2 (1 092)
120
Did you have any contact with self-help groups during your hospital stay?
73.0 (5 184)
6.9 (488)
20.2 (1 433)
196
The majority of patients stated that they had been informed about self-help groups
in the hospital; a further 15 % indicated that they had no interest in this information.
However, 28.5 % of the patients had not been informed. This percentage varies considerably
between the breast cancer centres. In the best breast cancer centre, no patient indicated
that she/he had not been provided with information about self-help groups; in the
six worst centres, this percentage was, however, above 60 % (results not shown). Just
under 7 % of the patients also had contact to self-help groups during their stay in
hospital, and one fifth expressed no interest in this. 73 % had no contact. Again,
this percentage of patients differs significantly between the different breast cancer
centres (minimum: 34 %, maximum: 93 %).
Regional differences
The survey presented enables a comparison between the assessments of mamma carcinoma
patients for the entire Federal Republic of Germany and therefore allows conclusions
about regional differences for selected indicators. The federal states are summarised
in groups for the results presented in [Table 9 ], for which evaluable results were available in overall at least four centres.
Table 9 Regional differences in the scale results: Mean values of centre mean values by region
(number of breast cancer centres included).
Admission process
Client-friendly infrastructure
Support by doctors
Support by nursing staff
Empathetic communication of information
Baden-Wuerttemberg (23)
3.66
3.55
3.47
3.52
3.38
Bavaria (26)
3.61
3.46
3.50
3.56
3.37
Berlin (6)
3.60
3.35
3.44
3.53
3.40
Brandenburg/Mecklenburg-Western Pomerania (4)
3.42
3.63
3.67
3.63
3.42
Hesse (13)
3.46
3.46
3.44
3.42
3.31
Lower Saxony/Bremen (16)
3.60
3.53
3.53
3.58
3.37
Rhineland-Palatinate/Saarland/NRW (9)
3.59
3.54
3.55
3.57
3.36
Saxony (8)
3.71
3.61
3.64
3.67
3.44
Saxony-Anhalt (6)
3.65
3.59
3.64
3.66
3.53
Schleswig-Holstein/Hamburg (4)
3.71
3.31
3.57
3.62
3.45
Thuringia (6)
3.63
3.49
3.65
3.63
3.49
Total
3.61
3.51
3.52
3.56
3.39
The table summarises the mean values for the centres in respect of the indicators
“admission procedure”, “client friendly infrastructure”, “support by doctors”, “care
support” and “emphatic communication of information” for the 121 German breast cancer
centres for which evaluable figures were available. It should be noted that these
differences can be the result of regional characteristics of the respondents, e.g.
patients from certain regions could have higher expectations in terms of treatment,
while patients in other regions of Germany are more easily satisfied. However, the
results do not support this, as otherwise similar tendencies would have been expected
for all indicators in all regions. For example, Brandenburg/Mecklenburg-Western Pomerania
showed the best results for a client-friendly infrastructure and support by doctors,
however at the same time the worst results for the admission procedure. Overall only
minor regional differences, with a slight tendency to overall better result, were
found for the East German federal states.
Discussion
With over 7000 participating patients and 160 participating hospitals this study represents
one of the largest surveys of breast cancer patients in Europe. For the evaluation
of the results it is firstly important to examine the prerequisites of a certified
centre. According to the definition of the National Cancer Plan, certified centres
are “a network of qualified and jointly certified, interdisciplinary and trans-sectoral
[…] facilities, which […] form the entire care chain for those affected […]” [4 ]. This means that, with this certification, a network is formed for the patients
in which all medical disciplines and, in particular, all professional groups work
together trans-sectorally in order to provide competent and trustworthy contacts for
patients in any area of their illness.
Are these conditions reflected in the patientsʼ experiences and thus in the results
of the survey?
The survey was conducted by post following the hospital stay; the vast majority of
the patients were therefore in the early stage of an overall treatment. Only 7.6 %
of the patients had received neo-adjuvant chemotherapy prior to surgery. In summary,
94.3 % of patients were satisfied with their hospital stay and would recommend their
centre.
When examining the results of the scales and items individually, the trust towards
doctors and nursing staff is particularly noticeable. Patients had full confidence
in staff (97.3 % doctors, 96.7 % nursing staff) and rated them as very competent (98.4 %
doctors, 97.2 % nursing staff). Furthermore, they stated that they felt they had been
well supported by the medical staff and that this resulted in their being able to
deal more effectively with the illness (89.2 % doctors, 93.7 % nursing staff). The
patients were also very satisfied with the explanations given by doctors on their
diseases and on the benefits and risks for the selected treatment. However, 12.6 %
indicated that they received only little or no information on various alternative
treatment options. This is probably due to the fact that, based on clinical findings,
for the majority of the surveyed patients a standardised approach for treatment steps
was followed; e.g. 74.5 % of patients received breast-conserving therapy. In addition,
more than one third of the patients would have liked more information on general health-promoting
measures and on the physical and nervous stress in everyday life as a result of the
illness and therapy.
It also remarkable that for 35.8 % of the respondents the certification of the breast
cancer centre played a key role when deciding on a clinic. 59.4 % of the patients
followed the recommendation of their gynaecologist when deciding on a clinic. The
importance of referring doctors and, to a lesser extent, certification was also underscored
as a selection criterion for patients by Lux and colleagues [5 ]. This is most probably due to the comparatively high level of awareness of the concept
of certified breast cancer centres [6 ].
The information about and the contact to other professional groups and organisations
integrated in the certified centres is rated differently by the patients. For example,
31 % of the patients would have liked more information about rehabilitation options,
which is primarily provided by the social workers in the centres. Around 18 % of patients
stated that they had not received sufficient information about possible psycho-oncological
support, and approximately 11 % of the patients were sooner dissatisfied with the
psycho-oncological support they had received. Also, the information on the self-help
groups was not provided to all patients; 28 % of patients were not informed about
self-help groups, however here the point in time of the survey may have been a factor.
A further important area within the certified centres is the organisation of the interdisciplinary
cooperation and the processes within the network. While the organisation of admission
to the centres was perceived as good by the patients, waiting periods often occurred
in connection with admission and also for examinations and procedures (24.3 %). Discharge
from hospital was rated very positively, in particular the explanation of the further
treatment steps (93.8 % of patients) and the preparation for additional interdisciplinary
treatment (90.8 %).
The DKG-certified breast cancer centres in North Rhine-Westphalia were not included
in the survey, in so far as these had been certified in accordance with the requirements
of the federal state of North Rhine-Westphalia, which means that they had already
participated in a survey with an almost identical questionnaire. This survey overlapped
with the study presented here. A comparison of the results of both surveys is possible
only to a limited extent for a number of indicators, as potential differences may
be associated with the different survey periods or different lengths of the questionnaires.
This comparison and the analysis of the weighting of individual aspects by patients
could be the subject of further studies. There is also a potential for correlation
analyses, for example the correlation between satisfaction and primary case numbers
or the results of the key person survey [7 ].
In summary, it can be said that the survey of the patients in the breast case centres
demonstrates that the prerequisites and content of the certified centres according
to the definition of the National Cancer Plan are well reflected in the day-to-day
operations of the centres. Patient support is of a very high standard, and this is
reflected in the overall very good results. However, as demonstrated, there are areas
in which potential for improvement exists, both in the individual centres and in respect
of all centres. The differences in the results between the individual centres are
in part considerable. Particularly in these cases the individual analyses, which were
made available to the centres, are an important tool for the identification of strengths
and weaknesses in their own networks and for discussion in the centreʼs governing
bodies. In this way, processes and structures can be critically examined with the
patient as focus based on a classic PDCA cycle and, if required, modified. In addition,
after the conclusion of the survey, a workshop was held for the representatives of
the centres in which the content and the results of the survey were more closely discussed.
This was conducted by the German Cancer Association in cooperation with the “Womenʼs
self-help following cancer group” and the Institute for Medical Sociology, Health
Services Research and Rehabilitation Science (IMVR). In this context, the centres
which had achieved particularly good results for selected subject areas presented
their experiences and structures. These were then discussed together in order to learn
from the procedures of others in the sense of benchmarking.
Conclusion for Practice
The analysis of the survey shows that the objectives and contents of certified centres
as specified in the definition of the National Cancer Plan are well implemented in
the centres. The interdisciplinary, cross-professional and trans-sectoral cooperation
of the partners involved is reflected in the patientsʼ experiences and therefore in
the results of the survey. Patients are very well cared for in the certified breast
cancer centres; this was made clear by a number of individual aspects. The support
of or confidence in doctors and the nursing staff who make dealing with the illness
easier for the patients, listen to them and on whom the patients rely, was rated as
particularly positive. Potential for improvement could be shown for a number of aspects
in the survey, such as in the area of providing information as discussed in this study.
Furthermore, in part significant differences were revealed between the breast cancer
centres. Regional differences were negligible. The presentation of results in the
result report of individual centres allows the analysis of the strengths and weaknesses
of an individual breast cancer centre in comparison with the other breast cancer centres.
This can be utilised by the breast cancer centres for the initiation of targeted measures
in the sense of a “learning hospital”. The experience gained in previous years in
North Rhine-Westphalia shows that the results of the survey can be used successfully
and that improvements can be observed over time [8 ]. The goal of each breast cancer centre should be the improvement of the results.
From the perspective of the patients it is also important that the differences between
the hospitals are reduced and that both the quality of medical treatment and patient
orientation is of the highest standard nationwide [9 ].
Acknowledgement
We would like to thank the patients who participated in this study, the breast centres
supporting this survey, and AVON for generously funding the study.
