ESSIC DISCUSSION ON DEFINITIONS AND CRITERIA ROUND 3

ESSIC DISCUSSION ON DEFINITIONS AND CRITERIA
ROUND 3
83. Nordling, Jørgen" [mailto:[email protected]]
[06/07/2006 11:34]
Subject: ESSIC classification
duplicated from discussion round 2
BPStypes_draft060706_1000.pdf (comment: link is available at the discussion page)
Second round has ended with only few, but very relevant comments. One reason might be that this is
the final consensus, another that people are on holiday. We might face considerable critics and attacks
coming out with this, so I want to be sure this are acceptable by everyone before spreading it out.
Because it is holiday time, I think we need a month to be sure everyone has had a chance to response.
So could everyone give me an OK on [email protected] if they accept. I think time has run out for
language massage, but severe objections are of course welcome. They must however be very important
to cause changes!
Jørgen Nordling
84. Magnus Fall [mailto:[email protected]]
[08/07/2006 19:56]
Subject: SV: what are other urinary symptoms ?
comment on e-mail 67 round 2
Dear All,
Being out of contact with my mail for a while and absent in the intense debate, I am probably a little offside and may have missed some information and conclusions. Trying to sum up what I have learned so
far, I have some points that I think are worth concidering:
1. About bladder pain: It is maybe too restrictive to state that pain is always associated with increasing
bladder filling, but still this is a very important and leading symptom. Would it be a reasonable compromise to say it like this? “that the diagnosis of PBS will be made on the basis of the symptom of pain related to the urinary bladder, typically increasing with bladder filling, accompanied by at least one other urinary symptom…
2. About BPS vs PBS: Although there are arguments of a practical nature aginst a change, BPS to my
mind is preferable to PBS, since it compares more logically and is in good uniformity to terms used for
pain states in other locations. I think the reason to use PBS in the ICS terminology was tradition, but if
we are trying to make a real change it is better to make it in one step, so BPS rather than the traditional PBS.
3. About biopsy: I suggest the following amendement and change of order, because of the important
impact on treatment:
a biopsy is indicated
- if cystoscopy gives rise to suspicion of carcinoma
- if in any doubt, to distinguish with certainity type 3 B 2 (the Hunner type lesion) from other abnormalities
- if cystoscopy is normal (a biopsy may yield a diagnosis of BPS type 1A, 1B or 1C or of a confusable
disease)
- if an abnormal non-diagnostic cystoscopic finding is seen (a biopsy could reveal or exclude a clinical
relevant diagnosis)
We are making history! I think it is a good idea as suggested to contemplate a little before making this
product final.
Best wishes,
Magnus
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85. Joop P van de Merwe [mailto:[email protected]]
[09/07/2006 13:12]
Subject: pain that (typically) increases with bladder filling
comment on e-mail 84
Dear all,
"Definition" or "broad description" of BPS
I recognize two different approaches in the discussion on the "definition". Some try to make a definition
that fits our target patients, while others try to make a broad description. And part of the discussion
results from the fact that we didn't decide on what we wanted: definition or description.
The reason that we want a "defiscription" could be that this would represent a kind of "entry criterium"
for patients to undergo further diagnostic procedures aimed at a diagnosis of BPS or a confusable disease.
The defiscription, then, must be broad enough to guarantee that all persons who may have some type of
BPS after all diagnostic efforts fullfil it. On the other hand, it should not be too broad to prevent that
urologists will have to "spend" time and diagnostic procedures for all kind op patients who will never and
can never have a diagnosis of BPS.
I think that the latest draft (06/07/2006 10:00) is close to both demands mentioned above. And that
those of us who were/are proposing to add that the pain (typically) increases with bladder filling are the
ones that try to make a definition.
I suppose that everybody acknowdledges the fact that (1) the pain does not increase with bladder filling
in 100% of BPS patients, and (2) the increase of pain with bladder filling is very typical.
If we want to make a definition, the addition that the "pain typically increases with bladder filling" makes
a much better definition in my opinion because it better defines the patients.
If we consider the description more or less as an entry criterium we probably don't need this addition.
The demand that the patient has "pain related to the urinary bladder" includes all patients with "pain
that increases with bladder filling". And I don't think that the description "pain related to the urinary
bladder" is too broad either.
Yours,
Joop
86. Nordling, Jørgen [mailto:[email protected]]
[11/07/2006 10:24]
Subject: ESSIC definition
comment on e-mail 84
Dear Magnus
I agree, that it would be nice to have something about bladder filling remaining in the definition, because
I also feel this is a typical finding. I am however afraid, that if we phrase the way you have done it,
someone might exclude patients not having this sign. If we instead write in the typical patient, this will
leave room for an atypical patient, but still with BPS.
It will then look like:
"that the diagnosis of PBS will be made on the basis of the symptom of pain related to the urinary bladder, in the typical patient increasing with bladder filling, accompanied by at least one other urinary symptom...
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Concerning the addendum on biopsies, I think the first - should be omitted. This is included in the confusable diseases and should not be mentioned again. The rest is sensible and express what we think.
Jørgen Nordling
87. Andrew Baranowski [mailto:[email protected]]
[11/06/2006 23:48]
Subject: ESSIC definition
comment on e-mails 86,84 and 67
Pain percieved in the bladder does not necessarily get worse with bladder filling. I saw a lady today,
where sometimes bladder filling made things worse and other times it did not. I feel that this term, PBS,
should include all conditions where the bladder is thought to be involved. The sub-divivions can be more
exclusive. The problem is how do you know the pain is perceived in the bladder. Confusable diseases
should be exclude. Then it comes down to history and examination. A single symptom may not give the
correct answer and therefore I would resist an emphasis on a single symptom.
Andrew Baranowski
88. Nagendranath Mishra [mailto:[email protected]]
[12/07/2006 18:14]
Subject: Re: ESSIC definition
comment on e-mails 86,84 and 67
i think it is important to note that bladder filling is not necessarily important.
we have many patient who have pain not related to bladder filling.
please leave the definition as it is.
nagendranath misrha.
89. Wyndaele Jean Jacques [mailto:[email protected]]
[12/07/2006 22:04]
comment on e-mails 88,86,84 and 67
Subject: RE: ESSIC definition
Dear Friends
Compromise will be needed
I would expect, as Magnus states, that a real IC bladder condition will give more pain when it fills but
agree that we will end up anyway with a less defined group of BPS that will probably consist of different
entities.
I await the final decisions and admire all the work done and the nice emails getting around for discussing
the items
Kind regards
Jean Jacques Wyndaele
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90. Joop P van de Merwe [mailto:[email protected]]
[13/07/2006 10:40]
Subject: "The ESSIC agreed:" - paragraph 3
Dear all,
In a discussion like this, it is essential to provide each other with the reasoning behind our view points.
The very interesting discussion of the last couple of weeks concentrated on paragraph 3 of "The ESSIC
agreed:". Paragraph 3 is a description of how we intend to arrive at a diagnosis of BPS and/or of a
confusable disease. In the consensus report on the Baden 2005 Meeting, the necessary steps were
summarized as follows:
1.
2.
3.
4.
5.
6.
patient with PBS/IC-like symptoms
medical history; physical examination
dipstick urinalysis; various urine cultures; serum PSA in males > 40 yrs
flowmetry; post-void residual urine volume by ultrasound scanning
cystoscopy and if indicated biopsy
diagnosis
Steps 2-4 may result in a diagnosis of a confusable disease but never in a diagnosis of BPS. Step 5 may
yield a diagnosis of a confusable disease but may also confirm the diagnosis (and the type) of BPS. As
steps 2-5 follow step 1 (yes, we are clever people ;), the patients in step 1 include all patients with BPS
and all with a confusable disease and all with both.
The definition (or description) of the patients in step 1, therefore, is not a definition of BPS. The reason
for this is that the final diagnosis of patients in step 1 may be BPS and/or a confusable disease; in other
words, the description of patients in step 1 must apply to patients with BPS and to patients with any of
the confusable diseases.
I think that what we are doing now is to modify the ICS definition of PBS for use as a description of the
patients in step 1. And, as was mentioned above, patients in step 1 also include patients with confusable
diseases as the cause of their cystitis-like symptoms, otherwise steps 2-5 were redundant. However, at
this phase we don't necessarily need a definition of BPS, we need a description of what kind of patients
need further evaluation of their "pain related to the urinary bladder etc."
One of the very nice things of the steps 2-5 is that every patient who fullfils the description in step 1, will
have a diagnosis (a confusable disease and/or one of the 16 BPS types) after steps 2-5 have been performed. The purpose of steps 2-5, therefore, is not limited to diagnose a patient as BPS but also to
diagnose a patient with a confusable disease or even with both.
Paragraph 3, therefore, should describe all patients in step 1 and should not be limited to BPS patients.
After all, we are working on the first part of a study on criteria for diagnosis and the results need future
validation. The validation will also yield information on many of the issues discussed so far. And after the
validation, we may be able to make a definition of BPS. In my opinion, it is premature to try to make one
now.
A first suggestion for paragraph 3 is something like:
3. The diagnosis of patients with cystitis-like symptomsa will be made after medical investigationsb and
may be BPS with type indicationc and/or a confusable diseased.
a. Cystitis-like symptoms are defined as pain related to the urinary bladder and at least one other urinary symptom
such as day-time or night-time frequency. In BPS patients, the pain typically increases with bladder filling in many but
not all patients.
b. Medical investigations are: medical history, physical examination, dipstick urinalysis, various urine cultures, serum
PSA in males > 40 yrs, flowmetry, post-void residual urine volume by ultrasound scanning and cystoscopy with hydrodistension and if indicated biopsy.
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The medical investigations are described in detail in: Nordling J et al. Primary evaluation of patients suspected of
having interstitial cystitis (IC). Eur Urol 2004;45:662-9.
A biopsy is usually considered to be indicated:
- if cystoscopy gives rise to suspicion of carcinoma
- if in any doubt, to distinguish with certainity BPS type 3C from other abnormalities
- if cystoscopy is normal as a biopsy may yield a diagnosis of BPS type 1A, 1B or 1C or of a confusable disease
- if an abnormal non-diagnostic cystoscopic finding is seen as a biopsy could reveal or exclude a clinical relevant
diagnosis
c. BPS types: see Table 1 (see also [d])
d. Confusable diseases and how they can be excluded or diagnosed are listed in Table 2. The finding of a confusable
disease does not exclude BPS. If a diagnosis of a confusable disease does not fully explain the symptoms of the
patient, medical investigations should be continued, see [b]. A diagnosis of both BPS and a confusable disease is,
therefore, possible. For scientific studies it should be mentioned whether BPS patients were also diagnosed with a
confusable disease or not, but it may be preferred not to include BPS patients who also have a confusable disease.
Table 1. ESSIC classification of bladder pain syndrome (BPS) types
Table 2. List of relevant confusable diseases and how they can be excluded or diagnosed
(for full tables 1 and 2: see the latest draft on the consensus)
Yours,
Joop
91. Nordling, Jørgen [mailto:[email protected]]
[13/07/2006 12:52]
Subject: "The ESSIC agreed:" - paragraph 3
comment on e-mail 90
Dear Joop
Thank you. It is nice to have someone able to stick to logics.
One comment.
Patients fulfilling step 1 criteria should include all patients with BPS but only a fraction of patients with
confusable diseases. Most of the confusable diseases does not always carry these symptoms.
I agree these criteria must be validated, but we are close to a definition, which might be changed after
validation.
I mean you first try to define criteria including all patients with BPS, you then exclude the noise from
confusable diseases and finally you look for positive, but not diagnostic signs of the disease. In my
mind, that comes close to a definition, but you are right, it might be wise not to call it a definition, but
just a description of a patient group.
Yours
Jørgen
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92. Andrew Baranowski [mailto:[email protected]]
[13/07/2006 13:35]
Subject: "The ESSIC agreed:" - paragraph 3
comment on e-mails 90 and 91
If I am following this correctly, its being suggested that patients in step 1 be labeled as BPS? That can
not be the case as the following steps are designed to rule out confusable diseases.PBS can only be used
when al confusable diseases have been ruled out. You need to decide as to whether that includes biopsy
and cystoscopy. I thought those were only necessary to subdivide. in which case BPS is after 4.
Prior to that it's pelvic pain syndrome as the specific diagnosis has not been reached.
Am I right? If not please tell me the flaw in my logic!
Andrew Baranowski
93. Hanno, Phil [mailto:[email protected]]
[13/07/2006 13:50]
Subject: "The ESSIC agreed:" - paragraph 3
comment on e-mails 90-92
It would seem that first you have a patient who meets the criteria for pelvic pain syndrome. You then
rule out confusable and diagnosable disorders, and they may become bladder pain syndrome. At that
point it is optional as to whether to proceed with diagnostic studies to further subclassify the BPS.
The definition is really a function of the diagnostic algorithm.
Phil Hanno
94. Joop P van de Merwe [mailto:[email protected]]
[13/07/2006 14:00]
Subject: step 1
comment on e-mail 92
Dear Andrew,
I understand the confusion as the report on the Baden 2005 consensus says:
1. patient with PBS/IC-like symptoms
Note the word “-like” here, this is essential. But that was 2005. In my presentations in London, I replaced this term with “cystitis-like symptoms”.
A patient with cystitis-like symptoms (= pain related to the urinary bladder and at least one other urinary
symptoms such as day-time or night-time frequency) will undergo one or more of the diagnostic steps 25. If no confusable disease (see updated list of the latest draft) can be diagnosed, then – depending on
whether cystoscopy with hydrodistension and biopsies were done or not – a patient will be classified as
one out of 16 BPS types (BPS type XX if no cystoscopy with hydrodistension and no biopsy was done
etc.).
Yours, Joop
95. Joop P van de Merwe [mailto:[email protected]]
[13/07/2006 14:00]
Subject: some slides from the ESSIC 2006 Meeting in London
Dear all,
For those who did not attend the ESSIC Meeting London 2006 (and for those who want to view them
again): I have put some slides of the presentations "Consensus on definitions and confusable diseases
obtained in Baden 2005" by Jørgen and me in London that are relevant for the discussion on the confusable diseases in the collection of e-mails (#95). I do not attach the slides to prevent overflow of your mail
box. You can view the slides via http://www.essic.eu/discussion2006.html and clicking “e-mail discussion
3rd and final round”.
Yours, Joop
ESSIC discussion round 3
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Some slides of the presentations by Jørgen Nordling and me at the ESSIC Meeting London 6-10 June
2005 "Consensus on definitions and confusable diseases obtained in Baden 2005"
1. elimination of confusable diseases
- medical history
diagnosis
of
PBS/IC
- physical examination
- dipstick urinalysis, routine and special cultures
- serum PSA in males >40 years
1.
elimination
of confusable
diseases
2.
confirmation
of PBS/IC
- flowmetry and post-void residual urine volume
measured by ultrasound scanning
- cystoscopy with biopsy if necessary
ESSIC London 2006
ESSIC consensus Baden 2005
11
cyclophosphamide-induced cystitis
tiaprophenic acid induced cystitis
bladder neck obstruction
neurogenic outlet obstruction
bladder stone
lower ureteric stone
urethral diverticulum
endometriosis
vaginal candidiasis
cervical, uterine and ovarian cancer
incomplete bladder emptying
(retention)
prostate cancer
benign prostatic obstruction
chronic bacterial prostatitis
chronic non-bacterial prostatitis
ESSIC London 2006
ESSIC consensus Baden 2005
13
cyclophosphamide-induced cystitis
tiaprophenic acid induced cystitis
bladder neck obstruction
neurogenic outlet obstruction
bladder stone
lower ureteric stone
urethral diverticulum
endometriosis
vaginal candidiasis
cervical, uterine and ovarian cancer
incomplete bladder emptying
(retention)
prostate cancer
benign prostatic obstruction
chronic bacterial prostatitis
chronic non-bacterial prostatitis
ESSIC London 2006
ESSIC consensus Baden 2005
15
cyclophosphamide-induced cystitis
tiaprophenic acid induced cystitis
bladder neck obstruction
neurogenic outlet obstruction
bladder stone
lower ureteric stone
urethral diverticulum
endometriosis
vaginal candidiasis
cervical, uterine and ovarian cancer
incomplete bladder emptying
(retention)
prostate cancer PSA confirmed
benign prostatic obstruction
chronic bacterial prostatitis
chronic non-bacterial prostatitis
ESSIC consensus Baden 2005
cyclophosphamide-induced cystitis
tiaprophenic acid induced cystitis
bladder neck obstruction
neurogenic outlet obstruction
bladder stone
lower ureteric stone
urethral diverticulum
endometriosis
vaginal candidiasis
cervical, uterine and ovarian cancer
incomplete bladder emptying
(retention)
prostate cancer
benign prostatic obstruction
chronic bacterial prostatitis
chronic non-bacterial prostatitis
ESSIC London 2006
ESSIC consensus Baden 2005
14
ESSIC London 2006
carcinoma
carcinoma in situ
infection with intestinal bacteria
infection with
Mycobacterium tuberculosis
Chlamydia trachomatis
Ureaplasma urealyticum
Mycoplasma hominis
Mycoplasma genitalis
Corynebacterium urealyticum
Candida species
Herpes simplex
Human Papilloma Virus
radiation cystitis
chemotherapy-induced cystitis
cyclophosphamide-induced cystitis
tiaprophenic acid induced cystitis
bladder neck obstruction
neurogenic outlet obstruction
bladder stone
lower ureteric stone
urethral diverticulum
endometriosis
vaginal candidiasis
cervical, uterine and ovarian cancer
incomplete bladder emptying
(retention)
prostate cancer
benign prostatic obstruction
chronic bacterial prostatitis
chronic non-bacterial prostatitis
ESSIC London 2006
ESSIC consensus Baden 2005
16
cystoscopy and biopsy eliminate:
PSA, flowmetry and ultrasound elimiate:
carcinoma
carcinoma in situ
infection with intestinal bacteria
infection with
Mycobacterium tuberculosis
Chlamydia trachomatis
Ureaplasma urealyticum
Mycoplasma hominis
Mycoplasma genitalis
Corynebacterium urealyticum
Candida species
Herpes simplex
Human Papilloma Virus
radiation cystitis
chemotherapy-induced cystitis
carcinoma
carcinoma in situ
infection with intestinal bacteria
infection with
Mycobacterium tuberculosis
Chlamydia trachomatis
Ureaplasma urealyticum
Mycoplasma hominis
Mycoplasma genitalis
Corynebacterium urealyticum
Candida species
Herpes simplex
Human Papilloma Virus
radiation cystitis
chemotherapy-induced cystitis
dipstick urinalysis and cultures eliminate:
physical examination eliminates:
carcinoma
carcinoma in situ
infection with intestinal bacteria
infection with
Mycobacterium tuberculosis
Chlamydia trachomatis
Ureaplasma urealyticum
Mycoplasma hominis
Mycoplasma genitalis
Corynebacterium urealyticum
Candida species
Herpes simplex
Human Papilloma Virus
radiation cystitis
chemotherapy-induced cystitis
12
medical history eliminates:
confusable diseases
carcinoma
carcinoma in situ
infection with intestinal bacteria
infection with
Mycobacterium tuberculosis
Chlamydia trachomatis
Ureaplasma urealyticum
Mycoplasma hominis
Mycoplasma genitalis
Corynebacterium urealyticum
Candida species
Herpes simplex
Human Papilloma Virus
radiation cystitis
chemotherapy-induced cystitis
ESSIC London 2006
ESSIC consensus Baden 2005
17
2. confirmation of IC/PBS
carcinoma
carcinoma in situ
infection with intestinal bacteria
infection with
Mycobacterium tuberculosis
Chlamydia trachomatis
Ureaplasma urealyticum
Mycoplasma hominis
Mycoplasma genitalis
Corynebacterium urealyticum
Candida species
Herpes simplex
Human Papilloma Virus
radiation cystitis
chemotherapy-induced cystitis
ESSIC consensus Baden 2005
cyclophosphamide-induced cystitis
tiaprophenic acid induced cystitis
bladder neck obstruction
neurogenic outlet obstruction
bladder stone
lower ureteric stone
urethral diverticulum
endometriosis
vaginal candidiasis
cervical, uterine and ovarian cancer
incomplete bladder emptying
(retention)
prostate cancer PSA confirmed
benign prostatic obstruction
chronic bacterial prostatitis
chronic non-bacterial prostatitis
ESSIC London 2006
18
pudendal nerve entrapment has been added to
the list of confusable diseases during the
meeting
cystoscopy with hydrodistension
- glomerulations and/or
- Hunner’s lesions
biopsy
- mononuclear inflammatory cells, including mast
cell infiltration and granulation tissue
ESSIC consensus Baden 2005
ESSIC discussion round 3
ESSIC London 2006
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Schematic representation of the road map to diagnose patients with "cystitis-like" symptoms
1
patients with pain related to the urinary bladder
and at least one other urinary symptom such
as day-time or night-time frequency
medical history
cystitis due to:
radiation
chemotherapy including
cyclophosphamide
tiaprophenic acid
lower ureteric stone
physical examination
Herpes simplex infection
Human Papilloma Virus infection
urethral diverticulum
endometriosis
vaginal candidiasis
cervical, uterine, ovarian cancer
prostate cancer
chronic bacterial prostatitis
chronic non-bacterial prostatitis
pudendal nerve entrapment
dipstick urinalysis
and cultures
infection with intestinal bacteria
infection with
Mycobacterium tuberculosis
Chlamydia trachomatis
Ureaplasma urealyticum
Mycoplasma hominis
Mycoplasma genitalis
Corynebacterium urealyticum
Candida species
PSA, flowmetry
and ultrasound
bladder neck obstruction
neurogenic outlet obstruction
incomplete bladder emptying
(retention)
PSA confirms prostate cancer
benign prostatic obstruction
cystoscopy
and biopsy
carcinoma
carcinoma in situ
bladder stone
bladder pain
syndrome
Joop P van de Merwe
2
bladder pain syndrome
(BPS)
biopsy
cystoscopy with hydrodistension
1
Hunner’s
lesion 2
not done
normal
glomerulations
not done
XX
1X
2X
3X
normal
XA
1A
2A
3A
inconclusive
XB
1B
2B
3B
positive 3
XC
1C
2C
3C
1 cystoscopy: glomerulations grade 2-3 *
2 with or without glomerulations
3 histology showing inflammatory infiltrates and/or detrusor mastocytosis *
and/or granulation tissue and/or intrafascicular fibrosis
* according to ESSIC definitions: Nordling J et al. Eur Urol 2004;45:662-9
Joop P van de Merwe
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96. Andrew Baranowski [mailto:[email protected]]
[13/07/2006 15:52]
To: Joop P van de Merwe
Under confusable disease, I can't see anything about the muscoloskeletal system, including pelvic floor
muscle related pain. Diagnosed by history and examination.
ANDREW
97. Jørgen Nordling [mailto:[email protected]]
[13/07/2006 22:25]
Subject: "The ESSIC agreed:" - paragraph 3
comment on e-mail 92
Dear Andrew
No! The BPS group is patients with pain related to the urinary bladder etc. and no confusable diseases
causing the symptoms.
Jørgen Nordling
98. Nagendranath Mishra [mailto:[email protected]]
[14/07/2006 17:41]
Subject: Re: step 1
comment on e-mail 94
i agree with joop.
nagendra nath mishra
99. Tomás Hanus [mailto:[email protected]]
[18/07/2006 7:28]
Subject: Re: some slides from the ESSIC 2006 Meeting in London
comment on e-mail 95
Great job! Well done - especially for us who are too busy by other items, however appreciating this discussion very much: Many thanks! Sincerely Tomas Hanus
100. Riedl Claus, Prim. Univ. Doz. Dr. Uro [mailto:[email protected]]
[21/07/2006 9:46]
Subject: AW: step 1
comment on e-mail 94
Dear Joop,
thank you for adopting my wording ("cystitis-like symptoms") in the description of BPS. This is simple
and also well defined for non-urologists!
And it is broad enough not to exclude patients we want to have included!
The discussion has slowed down due to summer vacations, as it seems. Have I understood that BPS has
been accepted by the majority?
Claus
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101 Joop P van de Merwe [mailto:[email protected]]
[21/07/2006 13:27]
Subject: RE: step 1
comment on e-mail 100
Dear Claus,
I have made a list of the reactions on the proposal to use the name Bladder Pain Syndrome:
e-mail
38
38
39
41
42
43, 54
48, 61
49, 65
51
52
63
70
71
84
Jørgen Nordling
Phil Hanno cited by Jørgen Nordling
Joop van de Merwe
Debuene Chang
Andrew Baranowsky
Nagendranath Mishra
Jurjen Bade
Jean-Jacques Wyndaele
Tomas Hanus
Claus Riedl
Paul Irwin
Gero Hohlbrugger
Mauro Cervigni
Magnus Fall
name BPS
introduction of BPS
OK
OK
mixed
strong OK
OK
mixed
OK
OK
OK
OK
OK
OK
OK
The following members did not give a reaction on the name BPS sofar:
Kirsten Bouchelouche
Pierre Bouchelouche
Kurosch Daha
Suzy Elneil
Hans Hedlund
Thomas Horn
Mikael Leppilahti
Sven Mortensen
John Nielsen
John Osborne
Ralph Peeker
Jukka Sairanen
Martina Tinzl
Arndt van Ophoven (is on vacation)
Andrey Zaitcev
Libor Zámecnik
Arndt van Ophoven is on vacation and participated in the discussion. So I am sure he will give a reaction
when he’s back.
The other members did not participate in the e-mail discussion sofar, I hope they will do this from now
on but my expectation is that most of them unfortunately won’t.
All e-mails are collected and accessible via: http://www.essic.eu/discussion2006.html
The third round of the discussion closes by 6 August 2006.
For privacy reasons, the discussion page cannot be accessed via the ESSIC website itself.
Yours,
Joop
ESSIC discussion round 3
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102 Libor Zámeèník [mailto:[email protected]]
[21/07/2006 14:16]
Subject: RE: step 1
comment on e-mail 101
I agree with use the name Bladder Pain Syndrome.
Libor Zámeèník
103 Pierre Bouchelouche [mailto:[email protected]]
[21/07/2006 15:14]
Subject: Svar: RE: step 1
comment on e-mail 101
Pierre, Kirsten OK for BPS
regards
104. Andrew Baranowski [mailto:[email protected]]
[23/07/2006 12:01]
To: Joop P van de Merwe
Dear Joop, you asked me to summarise some of the emails that have been held between a number of
those interested in taxonomy but also had other information (not related to taxonomy) that made them
inappropriate for general circulation.
Many of us are in agreement that the time has come for a final push on terminology. ESSIC has taken
this onboard and has accepted to drop the term IC. Debate around the terms PBS and BPS have occurred and for the most part it appears that BPS is the appropriate term as it fits in with the rest of the ICS
terminology. Those involved in producing the term PBS admit it was 'just one of those things' that it was
PBS and not BPS.
Some (many) will ask why we are taking this approach. I think that we as a group would be in agreement that in the absence of a proven pathology (confusable disease) we are dealing with a Pain
Syndrome and for research and patient care we must recocnise that. If a pathology is recocnised in the
future, then the new condition is recocnised and becomes a new confusable condition. Pudendal neuralgia is one such condition, which is becoming accepted.
Some recent emails have been discussions between myself and some end organ specialists (eg urologists). Some of these end organ specialists continue to look for an end organ pathology and to treat
patients as if such a pathology exists. They hold meetings of great scientific merit, but with blinkers and
no acceptance that they may be dealing with a Pain Syndrome. Several such meetings have continued to
propagate the myth of end organ pathology by sticking to the 'itis' terminology. When questioned they
had no Pain Management Specialists at those meetings. I was impressed with the London ESSIC meeting
that it took onboard the pain management perspective and was not threatened by the concept of 'persistent pain mechanisms' and the bio-psychogical model'. I agree, as do most of my pain colleagues that
confusable diseases must be excluded and treated as appropriate by end organ specialists. For pain syndromes a multidisciplinary approach is necessary. I am impressed that the EAU (in particular Magnus
Fall) has taken this on and at their next meeting to look at revising the EAU CPP guidelines they have
two medical pain specialists and a pain psychologist taking part. I feel that the onus is becoming 'why
are we not going with the trend to move forward?' and that groups will soon have to justify 'why are we
not recocnising persistent pain mechanisms?'.
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Several years ago we tried to involve several bodies in the EAU taxonomy and had little response. I was
a key person in developing the EAU taxonomy, based upon the ICS and IASP taxonomy. I accept there
are flaws. However, it is a very good model (though I say it myself) which works. PUGO/IASP contributed as did the ISSVD to those EAU guidelines. Now we have senior members of the NIH interested, and
several specialists that were not contributing last time taking an active part this time. The move is
towards a descriptive approach. Many of us are thinking about further sub-classifying the pain syndromes by symptom collection including psychological symptoms and sex symptoms. The IASP axial approach will form the frame work and the EAU table will be expanded as will the ICS terminology. The ESSIC
approach will also be incorporated. ESSIC has also shown the way with the confusable disease process. I
believe that by incorporating the ESSIC guidelines within it, and by expanding the ESSIC approach to
other areas such as 'prostate pain syndrome', we will make important progress for our patients.
One major question remains, 'how do we involve the interested parties to take matters forward?'.
Several emails have related to this. I hope that the book edited by Baranowski, Fall and Abrams will be a
start! But there is also the possibility of moving matters through the next version of the EAU guidelines
and through meetings that the NIH are organising. Several of us are organising a satellite meeting to
coincide with the IASP World Congress 2008.
I believe that the publication of the ESSIC guidelines (from the London meeting and subsequent email
discussions) will be pivotal in taking matters forward. I hope that they will be accepted for a high profile
journal. Many of my colleagues agree that it should be supported by an international editorial to increase
its standing, to raise its profile and to tackle any possible adverse response early on.
I feel that this matter is so important that IASP (through PUGO) should become more heavily involved
as it is an international, multidisciplinary group dedicated to the management and investigation of pain.
We are at the stage where we are because of some key figures, too many to name. There is no doubt
that your enthusiasm and that of Jorgen has played an important part. The visions of Paul Abrams who
chaired the ICS taxonomy group and Magnus Fall who allowed me to lead on the EAU taxonomy must
also be recognised. But, as I sit here I can think of so many others that should also be included for their
input that was decisive at times. At some point we must draw up a list of all those so important people.
I hope this is a fair summary of the email correspondence that has been occurring recently. Please forward this as you feel appropriate.
Andrew Baranowski
Consultant in Pain Medicine
National Hospital for Neurology and Neurosurgery
[email protected]
105. Joop P van de Merwe [mailto:[email protected]]
[23/07/2006 13:04]
To: ESSIC members
Subject: summary of non-ESSIC discussion
Dear Andrew,
Thank you very much for your summary. I think this broad approach is very important.
I will forward the e-mail to the ESSIC members and put it in the collected e-mails.
Yours,
Joop
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106 Jukka Sairanen [mailto:[email protected]]
[24/07/2006 7:57]
comment on e-mail 101
Hello from Finland,
I favor also this BPS term, which I have used for years in face to face conversations with patients.
One question. I am submitting now a paper to a journal considering IC. What term should I use in the
title and in the text respectively? PBS/IC ?
jukka sairanen
107. Joop P van de Merwe [mailto:[email protected]]
[23/07/2006 16:23]
comment on e-mail 106
Dear Jukka,
Thanks for your comment. As far as the name BPS is concerned, I would use the name PBS/IC as the
name BPS has not yet been formally accepted by ESSIC, has not been published and has not yet been
accepted internationally. But this may change in the next 3-4 months or so.
Best wishes,
Joop
108. Arndt van Ophoven [mailto:[email protected]]
[25/07/2006 16:02]
To: "Joop P van de Merwe", "Nordling, Jørgen"
Subject: Re: summary of non-ESSIC discussion
Dear Joop and Jorgen,
I have fought my self through the excellent discussion that took place over the last 3 weeks and the
group made definitely progress towards a new definition.
I feel fine with the term BPS, moreover I feel that pain at/under bladderfilling is not a mandatory condition of the disease.
Thank you very much to you for structuring and repeatedly summarizing the entire communication, you
are the true archivists of the entire process.
ARNDT
(outsite temp.: 37,2°C)
next page:
updated list of reactions of ESSIC members
to the proposal of changing
the name of PBS/IC into BPS
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ESSIC discussion round 2 on definitions and criteria – after London 2006
Updated list of reactions of ESSIC members to the proposal of changing the name of PBS/IC
into BPS [26/07/06 08:30]
e-mail
38
38
39
41
42
43, 54
48, 61
49, 65
51
52
63
70
71
84
102
103
103
106
108
Jørgen Nordling
Phil Hanno cited by Jørgen Nordling
Joop van de Merwe
Debuene Chang
Andrew Baranowsky
Nagendranath Mishra
Jurjen Bade
Jean-Jacques Wyndaele
Tomas Hanus
Claus Riedl
Paul Irwin
Gero Hohlbrugger
Mauro Cervigni
Magnus Fall
Libor Zámeèník
Kirsten Bouchelouche
Pierre Bouchelouche
Jukka Sairanen
Arndt van Ophoven
name BPS
introduction of BPS
OK
OK
mixed
strong OK
OK
mixed
OK
OK
OK
OK
OK
OK
OK
OK
OK
OK
OK
OK
The following members did not give a reaction on the name BPS sofar:
Kurosch Daha
Suzy Elneil
Hans Hedlund
Thomas Horn
Mikael Leppilahti
Sven Mortensen
John Nielsen
John Osborne
Ralph Peeker
Martina Tinzl
Andrey Zaitcev
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