EDITORIAL
Outcome measures
for lymphoedema
Neil Piller
T
here are a range of significant
issues that affect a person with
lymphoedema which concern not
only the patient, but also the clinician,
healthcare professional, medical funds
and the government. I acknowledge we
must maintain a holistic view with these
issues, such as the impact on quality of
life (QOL), activities of daily living (ADL),
time off work, productivity and social and
psychological stigma.
However, our major focus and
concern has always been an attempt to
answer the question:
How severe is the lymphoedema,
how is it progressing, and what has
been the effect of any treatment or
management regimen on it?
To answer that question we have
traditionally relied on circumferential
measurements, linked to limb volume
calculations on the basis of truncated
cones. Sometimes these measurements
are only of the affected limb, or in
comparison with the contralateral limb.
Rarely has the impact of limb dominance
on this been acknowledged.
These measurements have been
used as the major outcome gauge for
short, medium and long-term studies.
However, in middle and long-term studies,
using such measurement can lead to
errors, inaccuracy and misinterpretation.
For example, a limb might increase in
Neil Piller is a Professor and Director of the Lymphoedema
Assessment Clinic, Department of Surgery, Flinders
University and Medical Centre, South Australia
6
Can we talk about our
clinical findings and
outcomes with precision
and certainty? Is there
a gold standard?
circumference (and volume) not because
of a worsening of the lymphoedema, but
due to an increase in body weight and/or
perhaps an increase in muscularity as
a consequence of increased limb
use — thus, in reality, the patient has
actually improved.
At a more subtle but practically
important level, if we do not
acknowledge lateralisation and
handedness (i.e. a person’s strongest
hand, often the one used to write with)
(Bourgeois et al, 2010), not only are we
ignoring the fact that these will influence
overall limb composition (mainly in terms
of muscularity), but also limb volume
and the fact that there are significant
underlying differences in asymmetry
of the structure and functioning of the
superficial lymphatic system in both
normal tissues (Stanton et al, 1997) and
those at risk of, or with lymphoedema
(Stanton et al, 2001).
Rockson (2007) produced a summary
of bioimpedance in the diagnosis and
management of lymphoedemas and
summarised the literature indicating
that bioimpedance (when performed
correctly) may ‘antedate the appearance
of clinically identifiable disease’ and be
able to help in the identification of
‘at risk’ individuals.
If we do not acknowledge and
measure the variables Stanton et al
(2001) know well, and if we only measure
after the swelling is apparent, then we
have some problems.
In an earlier issue of JOL there was
an interesting debate about this (Piller et
al, 2009). It is clear that early detection
and early recognition of lymphoedema
have significant benefits, such as reducing
excess medical costs and the incidence
of cellulitis. However, the debate also
revealed a paucity of evidence to
indicate that early identification can
really reduce the prevalence and severity
of lymphoedemas.
Nevertheless, if there is one significant
positive maybe we should act on it. So,
why don’t we?
We also have another problem.
On reading the plethora of papers
regarding the incidence and prevalence of
lymphoedema, and the effect (long and
short) of treatment, we often seem to
base many of these arguments on rather
different foundations. The lack of a gold
standard, when there could be one given
our current knowledge and technologies,
is a significant barrier to comparative
interrogation of many trial outcomes.
Again, why is there a reticence
to accept new technologies and use
recommended standards?
We have excellent national and
international consensus documentation
to help us, but who has recently read
them (European Wound Management
Association [EWMA], 2005;
Lymphoedema Framework, 2006a and b;
Template for Practice, 2009; International
Society of Lymphology [ISL], 2009), but
who has recently used them? Admittedly
they are often a little out of date when
published, but they can be invaluable.
Maybe we feel most comfortable
with what we learnt in our training
programmes and pay little heed to
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EDITORIAL
what we read in the literature or gain
from masterclasses, or from continuing
professional development (CPD) courses.
In the author’s opinion, changing seems
to be a great problem for most of us.
However, there must be a tipping point
somewhere when an informed clinician
or therapist says, ‘yes, there is enough
evidence, I’m going to change’. But, are
we there yet? I am convinced we are, but
how do we enable it and act?
Ward (2009) in his paper asked the
question, ‘Is bioimpedance spectroscopy
ready for prime time as the gold
standard measure?’, and discussed the
serious issues we suffer through using
inappropriate technologies (or making
the incorrect interpretation from them),
and strongly suggested that the evidence
is out there for considering bioimpedance
spectroscopy (BIS) as ‘the reference
method’ for measuring lymphoedema.
For those using other current
technologies, such as immersion
plethysmography and perometry, it
does not mean that their techniques
are invalid. In fact, we already have much
evidence to support strong correlations
between BIS and perometry on a point
comparison basis (Jain et al, 2010). We
do not have to stop using any of these,
just consider adding another, or using just
one technique that measures what we
are all most concerned with: the sign of
lymphatic failure — excess fluids subclinically or clinically in the tissues.
Of course, our wide range of
methods for assessment also means
that we lack a definitive measurement
standard base on which we can compare
outcomes, present strong findings to
funding and government and private
health funds and get the best outcomes
for the patient. Without this, we, the
discipline and the patient, miss out on the
opportunity to progress.
We had a paper in JOL about
BIS (Ward, 2009) — but we had
problems finding views of dissent. Why
... changing seems to be a
great problem for most of
us. However, there must be
a tipping point somewhere
when an informed clinician
or therapist says, ‘yes, there
is enough evidence, I’m
going to change’.
this imbalance in our enthusiasm and
acknowledgment of the benefits of BIS
and yet a seeming reticence to use it, or
critically comment?
It is time that we all entered into
a debate about this and similar issues
relating to standards and consensus
documentation. Why don’t more of us
use the best technology available and
recommendations made by expert
groups. Too hard, too complex, too
expensive, don’t know how to use them,
or... . Let’s hear your opinions. What are
the pros and cons of a ‘gold standard’,
why are many of us unwilling to change
what we measure and how we measure
to determine the status of lymphoedema,
or of the effect of treatment on it? What
is your reason, what are your views? Log
on now to www.lymphormation.org and
be heard. A summation of the views will
be published in the next issue of JOL. JL
References
Bourgeois P, Leduc O, Belgrado J-P, Leduc A
(2010) Effect of lateralization and handedness
on the function of the lymphatic system of the
upper limbs. Lymphology 43(2): 78–84
European Wound Management Association
(2005) Focus Document. Lymphoedema
bandaging in practice. MEP Ltd, London
Jain MS, Danoff JV, Paul SM (2010)
Correlation between bioelectrical
spectroscopy and perometry in assessment of
upper extremity lymphoedema. Lymphology
43(2): 85–94
International Society of Lymphology (2009)
The diagnosis and treatment of peripheral
lymphoedema. Lymphology 42(2): 51–60
Lymphoedema Framework (2006a)
Template for Practice: compression hosiery in
lymphoedema. MEP Ltd, London
Lymphoedema Framework (2006b) Best
Practice for the Management of Lymphoedema.
International consensus. MEP Ltd, London
Piller NB, Keeley V, Ryan T, Hayes S, Ridner, S
(2009) Early detection — A strategy to reduce
risk and severity. J Lymphoedema 4(1): 89–95
Rockson S (2007) Bioimpedance analysis in
the assessment of lymphoedema, diagnosis
and management. J Lymphoedema 2(1): 44–8
Template for Practice: Compression hosiery in
upper body lymphoedema (2009) HealthComm
UK Ltd, Aberdeen
Stanton AW, Kadoo P, Mortimer PS, et al
(1997) Quantification of the initial lymphatic
network in normal human forearm skin
using fluorescence microlymphangiography
and stereological methods. Microvasc Res 54:
156–63
Stanton AW, Svensson WE, Mellor RH, et
al (2001) Differences in lymphatic drainage
between swollen and non-swollen regions in
arms with breast cancer-related lymphoedema.
Clin Sciences (London) 101: 131–40
Ward L (2009) Is BIS ready for prime time as
the gold standard measure. J Lymphoedema
4(2): 52–56
A one-click site for keeping abreast of up-to-date lymphoedema-related
resources, events and developments, both nationally and internationally.
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