Click here to return to the
main webpage for the
IBTA
Introduction
It is heartening
and hope-giving for brain tumour patients and their families to learn
about the
increasing number of meetings and conferences taking place around the
world
which are specifically addressing the substantial needs of this
population.
The IBTA’s 2009
conference website pages have this year listed no fewer than 78 brain
tumour
specific and/or relevant conferences (both scientific and
patient-focussed)
taking place around the world and although we maintain one of the most
comprehensive brain tumour meeting lists of this kind, it is possible
that
there were even more, perhaps local, conferences of which we were
unaware.
Nowadays at these
conferences, there are many packed rooms of interested delegates, eager
to
expand their knowledge of brain tumours.
In some conference sessions, there has been standing room
only – an
indication of the huge shift in interest about brain tumours that has
become
evident in the last half-dozen years or so.
At these
conferences, along with medical professionals, industry people,
scientists, and
allied healthcare professionals, an increasing number of patient group
representatives, individual patients and their caregivers have now
taken their
seats. This is an important and significant trend. It’s good to see
patients welcomed
at these events, and often playing an active
role - as presenters, panellists or exhibitors.
The IBTA
endeavours to have a presence at as many brain tumour and cancer
conferences as
manpower and funding allow. October
and
November were particularly busy months on the conference scene. See earlier in this E-News
for reports on
conferences attended by the IBTA Chair Denis Strangman. What follows is
a
combined report on conferences attended by IBTA Co-Director Kathy
Oliver.
1. 2009 Joint
Meeting of the Society for
Neuro-Oncology (SNO) and the AANS (American Association of Neurological
Surgeons)/CNS Section on Tumors, New Orleans, USA, 22-24 October 2009
2. The EPPOSI
(European Platform for
Patients’ Organisations, Science and Industry) 10th
Workshop on
Partnering for Rare Disease Therapy Development,
3. The Royal
Society of Medicine’s “Key
advances in research and treatment of brain tumours” in
Below are observations and photographs from the three above-mentioned
conferences. Please
note, the following commentaries do not purport to be a complete coverage of
all brain tumour relevant information from these conferences. See also “Important Note” (Disclaimer) at the
end of these reports.
1.
2009 Joint Meeting of the Society
for Neuro-Oncology (SNO) and the AANS (American Association of
Neurological
Surgeons)/CNS Section on Tumors, New Orleans, USA, 22-24 October 2009
This
summary of miscellaneous items from the scientific sessions at the
conference
is based on the writer’s notes and the abstracts of the presentations
and
posters which appear in “Neuro-Oncology” the official journal
of the Society for Neuro-Oncology, Volume 11, Issue 5, October 2009. The abstracts in their
entirety are available
online on a pay-per-article or pay-per-issue basis here:
http://neuro-oncology.dukejournals.org/cgi/content/full/11/5/563
This was an
historic meeting.
For the first
time ever, the Society for
Neuro-Oncology (SNO) and the AANS/CNS
Section on Tumors
joined
together to present the latest developments in neuro-oncology and brain
tumour
surgery.
The combination
of these two societies at this two-and-a-half-day conference in
“Sunrise
Sessions” began at 7.00 am and on the Thursday night of the congress a
number
of satellite symposia ran until 9.30 pm.
A particularly moving aspect of this year’s conference was
a tribute at
the start of the opening session to Mike
Traynor, President and Co-Founder of the Pediatric Brain
Tumor Foundation,
who passed away in September after a short illness. A short silence
was
observed in Mike’s memory. (This
is a link
to a tribute prepared by
the IBTA). Mention
was also made of Dr Samuel Hassenbusch who
passed away
from a brain tumour in 2008 and of whom more is said later in this
report.
Of course, conferences such as these provide an excellent networking forum and an opportunity to meet and talk with colleagues from the various brain tumour patient and caregiver groups. Representatives from a number of American brain tumour support organisations were at SNO and it was good to have the opportunity to see them again.
![]() New Orleans delegates (left to right): Al Musella, Dr Loice Swisher, Kathy Oliver (IBTA) |
![]() Reunion at AANS/SNO (left to right): Kathy Oliver (IBTA), Deneen Hesser (American Brain Tumor Association), Kay Verble (The Sontag Foundation), Elizabeth Wilson (American Brain Tumor Association) and Rob Tufel (Ben and Catherine Ivy Foundation). |
![]() Representatives of the National Brain Tumor Society at SNO (left to right): Harriet Patterson, Carrie Treadwell, David Hurwitz. |
It was also good to see Professor
Abhijit (Ab) Guha
at the AANS/SNO meeting.
Professor Guha (former Chair of SNO), had many friends around the world
concerned for his health after he developed a challenging illness.
Professor Guha is much better now and it was
great to see him back in action in
![]() Professor Ab Guha (centre) with (left to right): Kathy Oliver, Kay Verble, Elizabeth Wilson and Deneen Hesser. |
![]() Right: Dr Susan Chang, Chair of SNO. |
As is always the
case with major conferences such as this, the timetable is very hectic. At these meetings, there
is so much to
discover - the latest results of clinical trials, the predictions for
future
successes, and opinions on optimal treatment possibilities.
It was necessary
on the Education Half Day (Thursday) to choose between two excellent and very
tempting
sessions which ran side-by-side – one education
session
addressed the question of “Personalised Medicine: Is it the Future or
Now?” and
the second education session considered the topic of “Enhancing Quality
of Life
Throughout the Illness Trajectory”.
As personalised,
targeted medicine based on individual data relies heavily on technology
to
realise its potential, this session included topics on technology
supporting
personalised surgical care and radiation oncology as well as
presentations on
the role of molecular markers in clinical decision-making and guiding
the development
of clinical trials.
The “Quality of
Life” session was planned jointly by Terri
Armstrong (Associate Professor, Department of Integrative
Nursing Care, The
University of Texas M D Anderson Cancer Center), Kimberly
M Wallgren (CERN Foundation – Collaborative Ependymoma
Research Network) and Jennifer Brusstar
(Tug McGraw Foundation). It featured a range of thought-provoking
talks.
The QOL session
began with a video-taped message from Tim McGraw (Tug McGraw
Foundation). Following
this there were talks by two
caregivers: Kimberly Wallgren spoke movingly of her father’s brain
tumour
experience and Jason Hassenbusch described his father’s brain tumour
journey.
Having treated
brain tumour patients for two decades, and in what must be one of the
most
ironic and cruel twists of fate, neurosurgeon Dr Samuel
Hassenbusch (The University of Texas M D Anderson Cancer
Center, Houston) was himself diagnosed with a glioblastoma multiforme
brain
tumour in May 2005 and passed away from the disease in February 2008. A very moving and
inspirational book about Dr Hassenbusch – “Physician, Heal Thyself: A Brain Cancer Surgeon’s
Journey
Through Brain Cancer” – was available at the conference (ISBN:
978-0-9821409-1-8).
One of the
aspects of the brain tumour journey which is so vitally important to
patients
and their families is the way that communication takes place between
themselves
and their healthcare team. This
can be a
challenging area for both parties. From the medical professionals’
standpoint,
it is necessary to provide honest and truthful information and to
develop trust
and rapport with the patient while doing so.
From the patient and caregiver’s perspective, it is
important to hear
hope being voiced by medical teams and for everyone to be able to
sustain hope
during what can be an utterly devastating journey where hope is
sometimes
difficult to find. As
is often expressed
by patients and caregivers: “Fighting a brain tumour is hard enough
without
someone denying us hope.”
So the
presentation at the Quality of Life education session by Dr
Walter F Baile (University of Texas M D Anderson Cancer
Center)
delivered some crucially important messages on “Good News or Bad: Communicating with Your Patient”. Dr Baile,
Professor of Behavioural Science,
runs the “I*Care” (Interpersonal*Communication and Relationship
Enhancement)
programme at MD Anderson and his presentation reflected the “Dos and
Don’ts”
for doctors of mastering the art of successfully and sensitively
communicating
with brain tumour patients and their families.
Two other noteworthy
presentations from this session were on “The Other Healthcare
Professional:
Training the Caregiver” by Harriet
Patterson of the National Brain Tumor Society, and “Promoting
Comfort and
Choice at the End of Life” by Dr Sherry
Fox of the Cullather Quality of Life Center in
Caregiver burden
in the brain tumour journey is significant and Harriet Patterson
pointed out
that over 40% of family caregivers provide some type of nursing role.
Family
caregivers, she said, are “key extensions of the healthcare team…the
eyes and
ears that are there first.”
NBTS runs over 50
Caregiver Training Programs across the
Dr Sherry Fox
tackled the very difficult subject of end-of-life care in a
presentation which
was both informative and inspiring.
It
was important, she said, to plan effective management of end-of-life
care and
anticipate the supportive needs of patients approaching that stage.
Symptom
management at end-of-life is more difficult if there is no discussion
beforehand. The end
of life symptom
burden for brain tumour patients is different from other cancer
patients
because seizures, headaches and confusion play a role as well as issues
surrounding nutrition (for patients who have trouble swallowing),
hydration and
steroids.
A presentation by Jeffrey Wefel on “Chemobrain? Impact of Tumor and Treatment on Neurocognitive Function: What we Know, Where to Go” rounded off the QOL education session.
It
would be impossible to detail in this report all of the scientific news
from
this year’s
AANS/SNO conference. The abstracts from the AANS/SNO meeting have been
published in
“Neuro-Oncology” the official
journal of the Society for Neuro-Oncology, Volume 11, Issue 5, October
2009. These are
available online on a
pay-per-article or pay-per-issue basis here
A 52-minute
online overview discussion of
the neuro-oncology aspects of the
This online
video is divided into five
sections: 1. Highlights of Antiangiogenics; 2. Antiangiogenics in Newly
Diagnosed; 3. Overview of Randomized Control Trials; 4. Brain
Metastases; and
5. New Treatments for Glioma."
The SNO abstracts
are organised into 14 section titles:
Cell
biology/Signalling; Epidemiology; Experimental Therapeutics
(Preclinical);
Genetics/Genomics;
There were many
studies (over 70) presented in New Orleans on aspects of cell
biology and signalling which modulate glioma invasion and
which may provide attractive therapeutic targets for glioma therapy. Manipulation of pathways
by combinations of
pharmacologic agents is a promising avenue for brain tumour treatment.
Some interesting studies
on epidemiology included those on
the health experience of jet engine
manufacturing workers (Abs 85, 86, 88); survival trends of patients
with
primary central nervous system lymphoma (PCNSL – Abs 82) and factors
influencing the care of trauma patients who had incidentally-identified
CNS
tumours (Abs 90). There was an interesting study on the differences in
GBM
survival by race and sex (Abs 93 - Conclusion: “Race does not appear to
affect
survival in patients diagnosed with GBM, even after adjusting for the
type of
treatment and other prognostic variables. Married patients who undergo
total
surgical resection and radiation have significantly increased
survival”).
On the other
hand, one study (Abs 81) concluded that “ethnic, economic and insurance
disparities may exist in receiving radiation after a GBM diagnosis.
Immunotherapy
and immunology were
covered at SNO with no less than 37
abstracts on such topics as dendritic cell vaccines and
immunotherapy trials
targeting human cytomegalovirus antigens in GBM. (Abs 208.)
Medical
Oncology presentations and posters focussed on a range
of
therapeutic approaches.
But by far, the
greatest area of discussion centred around the use of antiangiogenic
therapies in both newly diagnosed
and recurrent disease.
Dominating the
conference were over 20 studies involving bevacizumab
across a range of tumour types and involving a variety of treatment
combinations. (It
should be noted,
however, that bevacizumab is not the only antiangiogenic agent
currently being
studied in the brain tumour community – there are also ongoing,
international,
trials for cediranib and
cilengitide )
A number of
papers related to the Phase 2 BRAIN study involving bevacizumab were
presented
at AANS/SNO.
One exploratory
analysis of the results of the BRAIN study (Abs 271), “Corticosteroid
Use in Patients with Glioblastoma at First or Second
Relapse Treated with Bevacizumab in the BRAIN Study”
concluded: “OR rate
and 6-month PFS with BEV treatment were clinically compelling. A
majority of
patients had decreased corticosteroid use. Patients with OR or PFS
> 6 months
had the associated benefit of corticosteroid reduction.”
Decreasing
steroid dependence has significance for brain tumour patients from a
clinical
perspective because in being able to do so, many of the morbidities
associated
with corticosteroid use are reduced.
This has been
hailed as a very noteworthy finding, also underlining the importance of
including studies such as this in clinical trials. Indeed, one of the
major
themes to come out of this year’s AANS/SNO meeting was the
consideration of the
importance of neuro-cognitive function and quality of life.
Another
presentation (Abs 270) described Patterns
of Progression in Patients with GBM, at First or Second Relapse, Treated
with Bevacizumab Alone or in Combination with Irinotecan.
The conclusion was that “The majority of BEV-treated patients
did not
experience a change in tumor pattern at the time of progression. Patients with a
progression-pattern shift
from local to diffuse had similar efficacy outcomes compared with
patients with
a pattern of local progression.”
A third
presentation linked to the BRAIN study was on “Neurocognitive
Function in Patients with Glioblastoma at First or Second Relapse Treated with Bevacizumab Alone or in Combination with
Irinotecan”.
While, of course,
both patients and doctors alike hope that many new answers come out of
conferences such as these, sometimes the opposite is the case and this
was true
of this year’s AANS/SNO meeting. There
seemed to be more questions than answers.
It will be
crucial to determine – hopefully in international, Phase 3 randomised
trials
for bevacizumab and other antiangiogenic treatments – the correct
responses to
a n umber of quandaries as were discussed at AANS/SNO and also mentioned in the online summary mentioned
above :
· Are
these agents best used in the upfront, newly diagnosed scenario or
should they
only be used as salvage therapy?
· What
timeframe should elapse between surgery and the use of antiangiogenic
therapies?
· What
truly is the extent of toxicity from these agents, and could the degree of
any possible toxicity be
related to the timing of their administration?
On this topic, the concept of risk versus benefit plays a
major role and
this also impacts on the choice of use in the newly diagnosed or
recurrent
setting. Does use
of bevacizumab, for
example, in the newly diagnosed setting need to be more circumspect
when it is
becoming evident that more and more patients (albeit still a relatively
tiny
number) are living longer? As
was
generally pointed out in the online summary of the conference, if patients have
the
potential of longer term survival, would it be putting them at undue
risk to
give them a treatment which could potentially result in a toxicity which could possibly
preclude
additional therapy?
· Is
there a sub-population of patients who would obtain optimal benefit
from antiangiogenic
therapies?
· What
is the appropriate end point for trials involving antiangiogenic agents?
· How
should treatments best be sequenced or combined to optimise therapy?
· Does progression
after
these therapies portend a very aggressive form of the disease?
· And
very importantly, how best can the responses to antiangiogenic
therapies be
measured and quantified?
Evidence of
pseudo progression, radiation necrosis and pseudo response, together
with other
challenges such as inter-observer variability and the difficulty of
measuring
complex tumour shapes, are aspects which have already alerted
clinicians to the
fact that existing radiological assessments, based on the “Macdonald
Criteria”
have their limitations. This was discussed at AANS/SNO (Abs 255) via an
update
of the work of the Response Assessment
in Neuro-Oncology (RANO) group. This is an ongoing
international
multidisciplinary collaboration working to develop new criteria to
assess the
impact of novel therapies on malignant glioma. [See reference to the
same
subject by Dr Laperriere at the COSA conference – reported earlier –
who
forecast that “The
main thrust of the new recommendations will be to take into account not
only
the gadolinium images (the old standard), but also the non-gadolinium
images on
assessing response.]
A laboratory study
on the anti-epilepsy drug (AED) levetiracetam
and MGMT (Abs 269) reported that: “…levetiracetam (LEV) is the most
potent MGMT
inhibitor among several AEDs with diverse MGMT regulatory actions.” The study on human
glioblastoma cells
concluded that “…the choice of AED in patients with malignant gliomas
may have
an underrecognized [sic] impact in clinical practice and research trial
design.”
The Quality of
Life/Symptom Management
stream at AANS/SNO provided a range of presentations and posters which
assessed
the information and support needs of brain tumour patients and
caregivers at
various stages of their journey. One
study looked at Internet usage by patients and caregivers in the first
four
months post diagnosis. It
found that
patients and caregivers “are using the Internet consistently and
frequently to
obtain information on disease and treatment options.” (Abs 392).
Some of the other
topics covered in this stream were a study on measuring the impact of
age at
diagnosis on quality of life (Abs 408); “Patient and Caregiver
Congruence in
Symptom Report and Association with Patient Neurocognitive Status” (Abs
386);
and “Assessing Information Needs, Support Needs and Likeliness to Use
Services
Among Brain Tumour Patients and Caregivers” (Abs 390) which considered
responses to a survey from 709 brain tumour patients and 702 family
caregivers. The
study reported that half
of the respondents had difficulty obtaining information about cognitive
changes, clinical trials and fatigue.
The Award for
Excellence in Quality of Life
Research was presented to Dr Andrea
Pace (Regina Elena National Cancer Institute, Rome, Italy)
for his study on
“Palliative Home Care for Brain Tumour Patients: Results and
Cost/Utility
Analysis of Six Years of a Pilot Project” (Abs 388). The aim of the model created
for
this study – a palliative home care pilot project for malignant brain
tumour
patients who had been discharged from hospital – was to provide for
patients’
care and rehabilitation requirements at home, quality of life and end
of life
care at home.
There were also
sessions at AANS/SNO on radiation oncology, radiology, pediatric basic
science,
pathology/prognostic markers, stem cells and surgical oncology.
Additionally, three
satellite symposia were held:
1. Case-Based
Discussion of Emerging
Evidence: Comprehensive Treatment Planning for Patients with High Grade
Gliomas
(supported by Schering-Plough Pharmaceuticals, now Merck in the
2. The Future
Treatment of High Grade Glioma
(supported by Ark Therapeutics)
3. Expanding
Glioblastoma Research with
Targeted Integrin Inhibitors (supported by EMD Serono)
The
following general themes seem to have run through
the AANS/SNO conference this year:
· the
importance of personalised medicine defined by subgroups of brain
tumour
patients with specific and individual genetic/molecular
characteristics;
· the
desire and crucial need to find the best way to use antiangiogenic
therapies
and to examine strategies which can provide a combination partner (ie
an
additional) agent for these therapies;
· the
absolute necessity of collaboration between all the different research
and
treatment specialities in order to bring efforts and results forward in
as
timely a way as possible
· a
greater understanding is needed of agents that are showing promising
activity
in brain tumour treatment
· there
is a strong and determined commitment from the scientific community to
achieve
optimal treatment for each brain tumour patient
Next year, the 2010
Society for Neuro-Oncology conference
will be held from 18 – 21 November at Le Centre Sheraton,
The 2011 Society for
Neuro-Oncology conference
will be held from 17 – 20 November at the Hyatt Regency,
2.
EPPOSI (European Platform for
Patients’ Organisations, Science and Industry) 10th
Workshop on
Partnering for Rare Disease Development,
EPPOSI, founded
in 1994, is a European Union partnership which provides a forum for
patient
groups and representatives of industry and science to come together for
the
purposes of exchanging information and discussing human healthcare
policies in
the EU. EPPOSI’s primary mission is “to establish a strong European
alliance of
patients’ organisations, academic science and industry jointly working
on
healthcare policies towards treatment and prevention of serious
disease.”
(EPPOSI website – www.epposi.org)
The main theme of
this
Each of the above
three topics had its own session at this two day conference in the
Belgian
Federal Parliament in Brussels which was attended by HRH
Princess Astrid of Belgium, patient group representatives,
regulators, medical professionals, pharmaceutical companies and others.

at
the Belgian Federal Parliament in
The last session
of this conference, on rare cancers, featured a range of speakers
including Karl Freese of DG Health
and Consumer
Affairs/European Commission; Kerstin
Westermark (COMP-Sweden); Jeanne-Marie
Brechot (Institut National du Cancer-France); Jean-Yves
Blay (Conticanet); Paolo
Casali (European Society for Medical Oncology - ESMO), Jean-Jacques Cassiman (European Society
for Human Genetics); Professor Garth
Cruickshank
(Birmingham, UK); industry representatives (Andras
Fehevary/Novartis, Katrin
Rupalla/Celgene and Adam Heathfield/Pfizer
UK). Speakers from
patient groups
included Jan Geissler from the
European Cancer Patient Coalition; Marcus
Wartenberg from Das Lebenshaus; and Kathy
Oliver from the International Brain Tumour Alliance.
Topics in this
section included “How to address the needs of patients with rare
cancers –
commonalities and differences with rare diseases”; “Clinical research,
therapy,
development and regulatory considerations”; and “Access (to
information; timely
and correct diagnosis; therapies; centres of excellence; to therapies
appraised
by health technology assessment/HTA; multidisciplinary teams; patient
mobility)”.
Of particular
relevance to the brain tumour community was the presentation by
Birmingham-based,
Recommendations
from this Guidance include, amongst other topics:
• All patients
with brain and CNS tumours are to be reviewed by multi-disciplinary
teams
(MDTs) and are database registered
• MDTs
are made up of dedicated core teams of nurses and clinical specialists
• Every
patient enters an audited treatment protocol
• Every
patient has a dedicated key worker
• Every
patient is considered for trial entry
• Every
patient has local home support identified
• There
are national tumour groups for very rare CNS tumours
Kathy Oliver,
representing the International Brain Tumour
Alliance, spoke on “Health Technology Assessment (HTA) and access to
promising
new therapies for patients with rare cancers”.
To read Kathy’s EPPOSI conference presentation, please go
to this webpage.

on rare cancers, left to right: Prof Jean-Jacques Cassiman
(European Society of Human Genetics), Kathy Oliver
(International Brain Tumour Alliance), Markus Wartenberg
(Das
Lebenshaus)
3.
Royal Society of Medicine’s “Key
advances in research and treatment of brain tumours” in
This Royal
Society of Medicine-organised conference followed on from a similar
event in
2006.
Over 60 UK-based
specialist clinicians, nurses, researchers and allied healthcare
professionals
involved in the treatment of adult and paediatric brain tumours were
joined by
representatives of industry at this one-day RSM meeting.
The programme
provided an update on key advances in brain tumour treatment and looked
at some
of the tools used in today’s armamentarium to fight the disease, which
–
despite some progress - still remains one of the most challenging and
intransigent of all cancers.
A presentation by neuropathologist Professor
Peter Collins (
Preferring to use
the term “brain tumour stem-like cells” he outlined the current
functional
definition of these cells as: (1) possessing proliferative
potential/driving
tumorigenesis; (2) being multipotent and (3) being capable of
self-renewal and
(4) tumorigenic in mouse brain (mice with a defect immune system that
cannot
reject human cells). However, this definition is not universally
accepted and
the terms ‘tumour stem cells’ and ‘tumour stem-like cells’ are used in
the
medical literature to describe cell populations defined in many
different ways.
There are a range
of markers used to identify brain tumour stem-like cells in addition to
the
functional definition outlined above, including Neston, CD133 and
others. These
tumour stem-like cells are believed to be resistant to therapy because
they
cycle slowly, express high levels of drug export proteins and may not
be as
dependent on the oncoproteins that new drugs try to block. Some studies
have
looked at the incidence of stem cells in a tumour type and depending on
the
method used to identify them the findings have varied from 1/1,000,000
to 1/100
as demonstrated in the study of Malignant Melanoma by Quintana et al
(Nature
2008 Dec 4; 456(7222):593-8).
Professor Collins
summed up his presentation by saying that there are cells in gliomas
that have
stem-cell like properties, that there are definitely a population of
tumour
cells that are resistant to therapy that give rise to recurrences and
that we have
to eliminate this therapy resistant population if we want a cure.
Professor
Martin van den Bent (
In terms of
predictive markers, Professor van den Bent stressed the importance of
having
reproducible results. Accurate and precise assays are needed as are
clear
positive and negative values. Predictive
markers must also be clinically useful.
Some of the molecular markers he described included the
methylation
status of MGMT, 1p/19q co-deletion,
and IDH1 status (this is an enzyme
associated with overall survival).
Professor van den
Bent went on to say that it was important that biomarker studies were
correctly
powered and that collecting tissue samples in well-designed clinical
trials is
pivotal.
A range of other
speakers presented on the following topics:
Dr Paul
Clarke (
Professor
Ian Whittle (
Professor
Michael Brada (
Dr Susan
Short (
Dr Darren
Hargrave (
Dr Hargrave went
on to say that one of the most significant aspects of pediatric brain
tumours
is the number of life years lost in this patient population. He said that
biomarker-driven drug
development is crucial as opposed to studies in random drugs. There is
a big
unmet need in pediatric brain tumours.
It is vital to prioritise studies so that the correct
targets are being investigated and
personalised drugs are developed.
Lessons can be learned from adult targeted therapy in
brain tumour
treatment. What is also needed are new and innovatively
designed
early clinical trials.
Dr Juliet
Britton (
Following Dr
Britton’s presentation and during the subsequent Question and Answer
period,
Kathy Oliver (IBTA) made the point that the brain tumour clinical nurse
specialist role is crucial. It
is vital,
she said, that various aspects of patient care are delivered in a
joined-up
way. The clinical nurse specialist could help ensure that this was the
case and
this type of positive and well-coordinated care management could
significantly
improve the patient’s quality of life and also that of the caregiver
and
family.
Dr Adam
Waldman (
· Overall,
there has been a modest improvement in patient outcomes but there
needs to be a much more concerted effort to change that. There is
an
urgent need for some sort of quantum leap in the treatment of brain
tumour
patients.
· Objective
evaluations of available evidence are needed in order to see the
effects of
interventions.
· Really well designed
studies are needed in order to look at novel therapies in the best and
most
correct way possible.
· International
collaboration and large-scale, multi-centre studies are crucial if
treatments
for brain tumour patients are to advance significantly and produce
better
outcomes.
IMPORTANT
NOTE:
This collection of
layman’s personal observations made during presentations at various
conferences
in 2009 is based on notes taken during these meetings.
Readers are advised to verify the information
and consult original published source material.
The comments in these notes are not in any way meant to
constitute
medical or other advice or recommendations.
These notes have been compiled in good faith. They are in no way
intended to be a complete
record of what took place and are based on personal notes taken without
the
backup of any recordings of speakers.
No
verification (research or otherwise) of matters included in these notes
has
been undertaken by or on behalf of the author.
The author does not accept responsibility for any
inaccuracies or
mis-information, errors, mis-quotes or omissions in or arising from these notes. Regardless of information
appearing in notes
such as these, medical professionals should always be consulted before
any
decision is considered or made or any course of treatment is
undertaken. This
report is not intended for general circulation and/or publication and
is
intended only for the general information of the addressees.
Ref: IBTA Conferences Report NOPIX AANSSNO/EPPOSI/RSM DRAFT 3Dec09 1809