2010 THE AUTHORS; BJU INTERNATIONAL
Urological Oncology
2010 BJU INTERNATIONAL
ONLINE SUPPORT FOR DECISION-MAKING IN LOCALIZED PROSTATE CANCER
HUBER
ET AL.
BJUI
Decision-making in localized prostate cancer:
lessons learned from an online support group
BJU INTERNATIONAL
Johannes Huber, Andreas Ihrig*, Tim Peters†, Christian G. Huber‡, Anja Kessler,
Boris Hadaschik, Sascha Pahernik and Markus Hohenfellner
Department of Urology, *Division of Psychooncology, Department for General Internal Medicine and Psychosomatic,
University of Heidelberg, Heidelberg, Germany , †Institute for Medical Ethics and History of Medicine, Ruhr-University
Bochum, Bochum, Germany and ‡Centre for Psychosocial Medicine, University Medical Centre Hamburg-Eppendorf,
Hamburg, Germany
Accepted for publication 25 May 2010
Study Type – Patient (preference/
ecological)
Level of Evidence 2c
OBJECTIVE
• To investigate patient-to-patient
communication with regard to decisionmaking in localized prostate cancer; as
most of it is done in private, online
support groups are a unique means for this
task.
PATIENTS AND METHODS
• Over a 32-month period, we screened 501
threads in the largest German online support
group for prostate cancer.
• Threads started by questioners newly
diagnosed with localized prostate cancer and
stating decision-making as the key topic
were included; in all, 82 (16.4%) threads met
these criteria.
• Two independent investigators
characterized every thread following a
standardized protocol.
• Fisher’s exact test and Mann–Whitney Utest were applied for group analyses. A
INTRODUCTION
In localized prostate cancer, individual
treatment decisions cannot be made on
medical grounds alone [1,2] and, because of
this, a lot of our patients carry a heavy burden
[3]. Compared with other oncological entities,
there are a lot of treatment choices with
curative intent, ranging from active
surveillance to various types of radiation
therapy and different surgical approaches.
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What's known on the subject? and What does the study add?
Social support plays a major role for decision-making in localized prostate cancer and the
importance of online resources has become increasingly recognized. However, so far most
of the knowledge has been generated on formal and stylistic aspects. The study adds to
understanding the content and the dynamics of peer-to-peer counselling in an online
support group.
complementary qualitative linguistic
approach was chosen.
• Linguistic analysis showed that posters
frequently use a tentative language style and
that common language is avoided.
RESULTS
CONCLUSIONS
• Threads were most commonly started to
ask for therapy recommendations (66%),
information on the course of treatment
(46%) and emotional support (46%).
• Answers consisted of treatment
recommendations (40%), emotional support
(37%) and personal experiences (28%).
• A second opinion on the biopsy cores
(51%) and additional imaging (40%) were
common suggestions.
• The rate of advice for radical
prostatectomy (RP) vs radiotherapy
was 67 vs 82%. Thus, surgery was less
recommended in our sample (P = 0.01); 75%
of the men with an initial therapeutic
preference were finally confirmed herein.
Additionally, very private and delicate
questions arise and these information needs
can only partly be met by urologists and other
healthcare professionals [4,5]. Discussion in
social networks and with other peer groups
becomes very important in this setting.
Therefore, social support plays a major role for
most patients with prostate cancer [6].
Little is known about communication among
laypeople unrelated to conventional support
• Patients readily receive information,
advice and emotional support as part of an
online support group.
• The scientific evaluation of an online
support group is a complementary way of
getting to know our patients’ needs and
worries.
• Patient–physician contact can benefit
from this knowledge.
KEYWORDS
online support group, prostate cancer,
decision-making, peer-to-peer support,
patient education
groups [7] as it is neither institutionalized nor
publicly available for scientific investigation.
Thus, online support groups are a unique
means for investigating patient-to-patient
communication in medical decision-making.
Most of the work already done in the field
concentrates on formal and stylistic aspects,
e.g. by comparing online support groups for
breast and prostate cancer [8–10]. However,
until now no evaluation of the content itself
has been undertaken and the importance and
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BJU INTERNATIONAL
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2010 THE AUTHORS
2 0 1 0 B J U I N T E R N A T I O N A L | 1 0 7 , 1 5 7 0 – 1 5 7 5 | doi:10.1111/j.1464-410X.2010.09859.x
ONLINE SUPPORT FOR DECISION-MAKING IN LOCALIZED PROSTATE CANCER
TABLE 1 Content of the initial request (n = 82 threads; multiple contents possible)
Topic
Treatment recommendations
Searching for emotional support
Side-effects/course of treatment
Diagnostic matters
Physicians/institution
Urgency of decision
Organizational matters
Frequency
(%)
54 (66)
38 (46)
38 (46)
32 (39)
23 (28)
13 (16)
13 (16)
impact of peer-to-peer counselling is not
sufficiently understood.
In the present study, we present an
explorative quantitative investigation for
hypothesis-building enhanced by a
qualitative linguistic analysis. The resulting
picture could contribute to a better
understanding of our patients’ needs and
worries.
PATIENTS AND METHODS
The largest German online support group on
prostate cancer (http://forum.prostatakrebsbps.de; 1479 registered users and 33 073
postings at the time of data collection) is
maintained by the umbrella organization of
regional prostate cancer support groups
(Bundesverband Prostatakrebs Selbsthilfe
e.V.). This freely accessible forum was used as
a data source for the present study. As the
forum software had been migrated from a
previous platform, data were available from
May 2006 onwards. Inclusion criteria were as
follows: threads started between May 2006
and December 2008 in the forum subdomain
‘First aid and advice’; terminated discussions,
defined as threads that had been closed by
the moderators or that had not received
postings during the last 30 days; threads
started by questioners newly diagnosed with
localized prostate cancer and with decisionmaking as the key topic. Exclusion criteria
were as follows: off-topic threads, i.e. with
content not pertaining to decision-making;
threads started by proxy.
In all, 501 threads were screened. Of these,
48.1% (241/501) were excluded as being offtopic and 35.5% (178/501) as being written by
proxy; 16.4% (82/501) of threads, with a total
number of 1630 postings, were included in
the study. A total of 24.5% (399/1630) of the
postings had been written by men seeking
©
Mean hits ± SD
(topic present)
2006 ± 1696
2500 ± 2175
2682 ± 2313
2645 ± 2129
2288 ± 1893
2112 ± 1894
3762 ± 3037
Mean hits ± SD
(topic not present)
2175 ± 2086
1687 ± 1381
1529 ± 1028
1691 ± 1513
1976 ± 1810
2054 ± 1829
1744 ± 1302
P-value
0.984
0.040
0.031
0.013
0.353
0.834
0.078
advice. These men had a mean age of 58.3 ±
7.6 years and were diagnosed with a Gleason
score of 6.4 ± 1.1 and an initial PSA level of
9.2 ± 9.3 μg/L. Duration of a thread was 21.4
± 31.4 days with a mean number of 18.8 ±
17.9 postings per thread. Questions were
discussed by 8.1 ± 5.0 different consultants
per thread.
ANALYSES
Three members of our interdisciplinary team
(JH, AI and AK) coded different random
samples of 15 selected threads each. These
results were discussed in several joint sessions
to work out the protocol for thread analysis
according to grounded theory [11].
Subsequently two independent investigators
(JH and AK) characterized every thread
following this standardized protocol. The
content of the question, current treatment
preference, answers, feedback by the
questioner, final decision and number of hits
were noted for every conversation. Divergent
judgments were discussed and solved
consensually. For balancing different
conversation lengths, relative frequencies of
advisors’ answers and questioner’s feedback
were calculated: the absolute count of events
was divided by the number of corresponding
postings within the given thread and
presented as a percentage. For example, five
events of emotional support by advisors result
in a value of 50% in a thread with 10 answers
and 25% in a thread with 20 answers.
Distribution of categorical data was given by
absolute and relative frequencies and
compared using Fisher’s exact test between
groups. Continuous variables are presented as
mean ± SD. We applied the Mann–Whitney Utest for explorative univariate statistics. In all
tests, P < 0.05 was considered to indicate
statistical significance. All calculations were
performed using SPSS 16.0 (Chicago, IL, USA).
The statistical analysis was approved by the
institutional consulting programme. As a
complementary approach, a qualitative
linguistic analysis was performed:
conversation analysis involved ethnomethodological techniques and methods
from discourse analysis to generate
hypotheses based on grounded theory [11,12].
TRIAL REGISTRATION AND ETHICS
COMMITTEE APPROVAL
The present study was part of the project
‘Experienced involvement in counselling for
prostate cancer’ (German Clinical Trials
Register; DRKS00000296), which was
approved by the Institutional Review Board of
the University of Heidelberg (Vote S-333/
2009).
RESULTS
Specific questions were posed in 79% (65/82)
of the threads, while the remaining 21%
(17/82) covered more general areas. Most
commonly requested were therapy
recommendations 66% (54/82), information
on the course of treatment 46% (38/82) and
emotional support 46% (38/82). The content
of the question influenced readers’ interest,
resulting in more hits for threads on
emotional support (P = 0.04), treatmentrelated side-effects (P = 0.031) and further
diagnostics (P = 0.013). Topics and the
corresponding number of hits are given in
Table 1. A total of 30% (25/82) of the
conversations were completed, whereas the
remaining 70% (57/82) were not. This feature
did not depend on the type of question posed
(P = 0.375).
ANSWERS AND FEEDBACK
The 10 most active advisors account for 34%
(419/1231) of all the answers in our sample.
With respect to the whole online support
group this proportion is confirmed: the top 10
advisors wrote 36% (11 921/33 073) and the
most active 5% of all users (74/1479) wrote
70% (23 015/33 073) of the postings.
Answers and questioners’ feedback are
given in Table 2. Matching the requested
content, answers provided treatment
recommendations (40 ± 35%), emotional
support (37 ± 24%) and personal experiences
(28 ± 21%). Direct contact was rarely offered
via e-mail (4 ± 7%) and telephone (2 ± 7%),
and never in person. The advice to keep calm
(14 ± 21%) is more common than the
2010 THE AUTHORS
BJU INTERNATIONAL
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2010 BJU INTERNATIONAL
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H U B E R ET AL.
TABLE 2 Advisors’ answers and questioner’s feedback: total values and explorative comparison of subgroups
Event
Advisors’ answers
Specific answer to posed problem
Emphasis on individuality
Report of first-hand experience
Providing emotional support
Offer contact via e-mail
Offer contact via telephone
Advice to keep calm
Urging to hurry
Advice to gather more information
Advice for further diagnostics
Recommendation for a second opinion
Recommendation of specific address
Recommendation for specific treatment
option (advice or dissuasion)
Questioner’s feedback
Thanks
Providing emotional support
Explanation of personal treatment decision
recommendation to hurry up in a given
situation (6 ± 15%).
Additionally, we compared the answers for
two statistically independent (P = 0.171) pairs
of dichotomous subgroups of questioners
(undecided vs therapeutic preference; request
for emotional support vs none). This
comparison is also shown in Table 2.
There were several differences between
undecided questioners (54/82) and men
expressing a certain therapeutic preference
(28/82). The latter received increased
emotional support (P = 0.031) and were told
to gather further information (P = 0.013)
more often. Likewise, questioners who stated
a therapeutic preference were more active
in giving feedback: they expressed their
gratitude (P = 0.007), substantiated their
treatment decision (P = 0.002) and provided
emotional support (P = 0.034) more
frequently. In all, 75% (21/28) of the men
initially expressing a therapeutic preference
were finally confirmed herein.
By contrast, the explicit request for emotional
support (38/82) vs no such wish (44/82) did
not influence the spectrum of answers. In
particular, the frequency of providing
emotional support was equal for both groups
(P = 0.978). Nevertheless, those who have
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Total sample
(82)
xtotal ± σ , %
Undecided (54) vs therapeutic preference (28)
x undecided ± σ , % x preference ± σ , % P
Requesting emotional support:
no (44) vs yes (38)
x no ± σ , % x yes ± σ , % P
20 ± 19
6 ± 13
28 ± 21
37 ± 24
4±7
2±7
14 ± 21
6 ± 15
6 ± 11
19 ± 22
9 ± 13
25 ± 28
40 ± 35
19 ± 19
6 ± 15
27 ± 23
33 ± 23
4±7
3±8
15 ± 22
7 ± 17
5 ± 12
21 ± 22
9 ± 13
23 ± 26
41 ± 35
22 ± 20
5±9
31 ± 17
45 ± 24
4±8
1±4
13 ± 18
4 ± 11
9 ± 11
14 ± 22
7 ± 13
30 ± 33
37 ± 36
0.367
0.417
0.148
0.031
0.794
0.849
0.996
0.770
0.013
0.068
0.238
0.566
0.586
18 ± 21
6 ± 16
25 ± 22
37 ± 24
3±7
1±5
15 ± 23
6 ± 18
6 ± 12
18 ± 24
8 ± 13
26 ± 30
38 ± 38
23 ± 18
5±8
31 ± 21
38 ± 24
5±7
3±9
14 ± 18
6 ± 11
8 ± 11
20 ± 21
10 ± 13
25 ± 26
41 ± 33
0.126
0.431
0.222
0.978
0.076
0.138
0.679
0.082
0.075
0.194
0.279
0.810
0.406
32 ± 30
4 ± 15
7 ± 14
26 ± 29
2 ± 9.5
3 ± 10
43 ± 28
8 ± 22
13 ± 18
0.007
0.034
0.002
23 ± 26
6 ± 19
5 ± 12
41 ± 32
2±8
9 ± 15
0.005
0.318
0.041
TABLE 3 Dissuasion and advice concerning different treatment options for localized prostate cancer
Treatment option
Watchful waiting
RP
Complementary medicine
Radiotherapy
Dissuasion, n (%)
18 (35)
46 (33)
5 (23)
18 (18)
asked for emotional support were more
thankful (P = 0.005) and explained their
personal treatment decision (P = 0.041) to a
greater extent.
RECOMMENDATIONS, PREFERENCES AND
FINAL DECISION
Obtaining a second opinion on the biopsy
cores is suggested 74 times in about half of
the threads (51%, 42/82), and two particular
pathologists are named in 89% (66/74) of the
threads. Additional imaging is recommended
56 times in 40% of the threads (33/82), but
only 20% (11/56) of the recommendations
are medically sound according to current
guidelines [2]. Recommendations for
particular physicians are given 87 times in
57% of the threads (47/82) and advice to go
to university hospitals is given in 36% (31/87)
of the threads.
Advice, n (%)
33 (65)
92 (67)
17 (77)
84 (82)
Total number of mentions
51
138
22
102
The number of positive and negative
judgments regarding different treatment
options is shown in Table 3. While, in
terms of total numbers, positive advice
on radical prostatectomy (RP; n = 92)
was more common than that for
radiotherapy (n = 84), the rate of advice
vs dissuasion was significantly lower
for RP (67%, 92/138) than for radiotherapy
(82%, 84/102; P = 0.010). Thus, surgery
was regarded as more controversial in our
sample.
Figure 1 shows initial statements regarding
these two alternatives (n = 114) and final
decisions (n = 45) disclosed by a subgroup of
these men. When comparing initial positive
(preferred or decided) and negative (definitely
not or rather not) attitudes of the questioners
towards these treatment options, the attitude
towards RP (16 vs nine) was more positive
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BJU INTERNATIONAL
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2010 THE AUTHORS
2010 BJU INTERNATIONAL
ONLINE SUPPORT FOR DECISION-MAKING IN LOCALIZED PROSTATE CANCER
FIG. 1. Initial preference (n = 114) and final
treatment decision (n = 45) for RP and radiotherapy.
40
n = 114
35
30
25
20
15
10
5
0
n = 45
de
fin
ite
ra ly n
th o
er t
ne not
p r u tr
ef al
e
de rred
cid
ed
de
fin
it
ra ely n
th o
er t
ne not
pr utr
ef al
e
de rred
cid
ed
opinion-forming
Radiotherapy
Prostatectomy
than that towards radiotherapy (four vs 15).
This difference is statistically significant
(P = 0.006).
LINGUISTIC FEATURES: TENTATIVE STYLE AND
SOCIAL TABOO
The nomenclature used varied considerably,
thus indicating a wide range in the levels
of knowledge among people contributing
to the site [13]. A typical strategy used by
participants to avoid humiliation due to
content-related mistakes was the use
of the tentative style. Most of the nonprofessionals deliberately presented their
contributions as being in need of correction:
they used subjunctives (‘If I were in your
place, I would . . .’) and corresponding
grammatical particles (‘maybe‘, ‘actually’).
Moreover they quoted external experts
(‘I have read about several cases . . .’, ‘It was
explained to me . . .’, ‘My urologist told me . . .’)
or simply stated their level of knowledge right
from the start (‘I do not belong to the medical
experts here . . .’).
The use of professional phrases such as
‘prostate carcinoma’ or ‘positive biopsy
findings’ was extraordinarily common.
Contrary to our expectations that the word
‘cancer’ would be very common among
laypeople, this expression was rarely used.
The term ‘prostate cancer’ was avoided by
using acronyms (‘PC’), colloquial synonyms
and surrogate constructions (‘urological
problems’, ‘the described problem’).
Sometimes the disease was not mentioned
at all and elusive phrases concerning the
participant’s personal situation were used
instead (‘now it caught me, too’, ‘my
situation’).
©
DISCUSSION
For more than a decade, the importance of
online resources for decision-making has
become increasingly recognized [14].
However, until now researchers have mainly
evaluated professional information and sites
of healthcare providers [4,14,15]. In the
present study, using an approach that
combined quantitative and qualitative
methods, we analysed form, content and
language used in peer-to-peer
communication between patients with
localized prostate cancer in an online support
group. Furthermore, we explored the course
and possible impact on individual decisionmaking.
While most of the queries are asking for
treatment recommendations, emotional
support also plays a major role. It is explicitly
sought in 46% (38/82) of the threads and
frequently provided (37 ± 24%), making it the
most common subject after decision-making
itself. The analysis further shows that a
lot of information-seeking is answered by
emotional support. Therefore, the lay advisors
cover the support-needs of patients with
cancer [16] very well and regardless of their
specific request. The data in the present study
adjust former findings concerning patients
facing prostate cancer [9], as emotional
support is readily welcome and a substantial
part of nearly every conversation. Moreover,
social interaction via online support groups
might have therapeutic importance with
regards to the coping of affected people and
counsellors likewise [17].
Although an open access online discussion
board is one of the most democratic forms of
social interaction, we found evidence of
inhomogeneous participation (5% of all users
contributed 70% of the postings). Therefore,
only a few people influence the range of
opinions largely and are opinion-forming. This
oligarchic structure becomes especially
noticeable in the high frequency of
recommendations for a second opinion on
biopsy cores. This advice was commonly
proposed and mirrors the belief of only a few
users. At the same time, two pathologists are
named in most cases. There is also a trend
towards additional imaging that is not
medically necessary [2]. These potentially
negative effects of medical advice given by
laypeople are a well-known source of
criticism towards traditional support groups
[5].
Treatment recommendations appear to be
more balanced (Table 3). Surgical therapy
received less support in our sample than
radiotherapy (P = 0.01), but all three
guideline-conform options are adequately
represented [2,18]. Additionally,
complementary medicine did not play a
significant role, as it only accounted for
7% (22/313) of all treatment advice. Initially,
most of the questioners tended to prefer
a surgical approach, as they entered the
online support group after counselling
their urologist [19,20]. Whether advice from
the online support group actually affects
final treatment decisions cannot be judged,
as too few were documented in feedback
postings and additional influences were not
controlled.
The effect of an initially expressed therapeutic
preference is interesting. Besides receiving
more emotional support, these patients were
told to become better informed and to
undergo additional diagnostics. Thus, their
preference was actively questioned. Finally,
most of the men (75%) stuck with their initial
preference and gave feedback on the grounds
for their decision. The sample in the present
study depicts a well-founded process of
decision-making triggered by social
interaction where balancing reasons is
actively demanded. Therefore, online support
groups are a very strong tool for involving
patients with cancer in their own care [17].
Tentative use of language was very common,
showing that the participants originate from
quite diverse backgrounds with most of them
being non-professionals. As similar strategies
are used in verbal communication between
patients and physicians, these linguistic
features imply that written communication
within an online support group is
conceptually verbal [21].
Although widely used, tentative phrases are
rather vague and leave the weighting of
opinions and statements to the reader. This is
problematic as it can cause unease at the
worst. Uncertainty in the informational
domain could be further amplified by the
dominant use of medical terms. Lay
understanding of medical terminology is
often poor, yet, at the same time, nonprofessionals tend to overestimate this
understanding [22]. Also, medical expressions
appear more serious [23] and hamper a
genuine conversation about personal issues
[24]. Common words such as ‘cancer’ are
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2010 BJU INTERNATIONAL
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H U B E R ET AL.
avoided and the disease becomes a taboo with
the use of acronyms or paraphrases. It
therefore seems that not even the anonymity
of nicknames can counterbalance the public
nature of the internet and thus reserved
language characteristics prevail.
CONFLICT OF INTEREST
None declared.
12
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1
The main weaknesses of the present study are
its descriptive nature and a sample consisting
only of postings by men, due to our focus on
prostate cancer. This sample selection could
mean our results are not representative of
online support groups in general and limit
their generalizability. Furthermore, the large
standard deviations in the percentages of
answers and feedback can be interpreted
as evidence that the communication
characteristics are not uniform, and could be
further explained by factors not addressed in
the present study.
Another important aspect that is hardly
touched upon in the present study is the large
number of passive observers, the so-called
‘lurkers’. The threads of the chosen online
support group are easily found by web search
engines and readers benefit to a similar extent
even without making an active contribution
[25].
In conclusion, virtual peer-to-peer interaction
could provide similar positive benefits to
those known to be offered by conventional
support groups [26]. Without the necessity of
direct personal contact, patients readily
receive information, advice and emotional
support. Emotional issues are covered
whether or not they are requested. Focusing
on facts and figures does not rule patient-topatient counselling in patients with prostate
cancer. Instead, social interaction via the
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regular part of coping with the disease as well
as the decision-making process. Scientific
evaluation of peer-to-peer counselling is a
complementary way for clinicians to get to
know their patients’ needs and worries.
Moreover, the possible negative effects of
support groups [5,27] can be discussed during
patient–physician contact.
ACKNOWLEDGEMENTS
We thank Ralf-Rainer Damm and other
organizers of the online support group for
positive and valuable feedback on preliminary
results of the present study, which were
presented at the 2009 annual congress of the
German Society of Urology.
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Correspondence: Johannes Huber MD PhD,
Department of Urology, University of
Heidelberg, Im Neuenheimer Feld 110,
D-69120 Heidelberg, Germany.
e-mail: [email protected]
Abbreviation: RP, radical prostatectomy.
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