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82 Lymphoedema and ChroniC SweLLing
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TABLE 2.20
Untreated non- pitting chronic lymphoedema
Known or suspected deep vein thrombosis
Pulmonary embolism
Thrombophlebitis
Acute skin inammation such as cellulitis or erysipelas
Uncontrolled or severe cardiac failure
Pulmonary oedema
Ischaemic vascular disease
Active metastatic disease aecting the lymphoedematous area
Oedema at the root of the aected limb or in the adjacent trunk
Severe peripheral neuropathy
Source: Adapted from Lymphoedema Framework (2006), p.31.
Contraindications tointermittent pneumatic compression.
etal.2017). However, more research is needed to conrm how laser
treatment works and its benets in lymphoedema (Lymphoedema
Framework2006, p.51).
SURGERY
A variety of surgical options are available for lymphoedema, although
access to surgery via the NHS is limited (British Lymphology Society 2022b). The options available are reconstructive microsurgery
and debulking surgery. Risks associated with surgery include infection, bleeding, abnormal scarring and lymphorrhoea. Surgery should
only be performed by surgeons who have experience of lymphoedema and are specialists in the lymphatic system.
Reconstructive Microsurgery
The aim of reconstructive microsurgery is to improve the functioning
of the remaining lymphatic system, improve drainage, reduce swelling and reduce the patient’s need for ongoing use of non- surgical
treatments (British Lymphology Society2022b). One type, lymphaticovenular anastomosis (LVA), is suitable for patients with good
remaining lymphatic function. It is minimally invasive. The surgery
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introduces ne channels connected to veins that enable lymphatic
uid to bypass scarred or damaged tissues and return to circulation
within the aected limb (Koshima etal.2003; Campisi etal.2007).
Lymph node transfer is more invasive and requires hospitalisation for three to ve days (British Lymphology Society 2022b). It
involves transplanting healthy lymph nodes from the neck or abdomen, for example, to the aected area, where over time the healthy
lymph nodes regenerate lymphatics by absorbing excess uid (British
Lymphology Society2022b).
Debulking Surgery
If the lymphoedema is advanced, the accumulating lymphatic uid
in the leg changes into fatty tissue and brous scar tissue through the
action of proteins and growth factors in the uid. At this stage, reconstructive surgery is not an option because it is no longer possible to
redirect the uid (Hague etal.2020).
Lymphatic liposuction removes fatty and scar tissue that has
formed in the aected limb. It requires hospitalisation for two to
three days due to the high risk of serious complications. It reduces
limb volume and improves limb shape. Compression hosiery needs
to be worn day and night indenitely after the operation to maintain
good lymphatic function (Schaverien etal.2018).
PALLIATIVE CARE
Lymphoedema at the end of life may be associated with long- standing
lymphoedema or with other diseases such as cancer, chronic heart
failure, advanced renal or liver disease, advanced neurological disease
or end- stage respiratory disease. The causes are often complex.
Advanced disease may impair capillary ltration as a result of venous
hypertension or hypo- albuminaemia, or impaired lymphatic drainage
as a result of surgery, radiotherapy, metastatic lymphadenopathy,
long- standing lymphoedema or immobility (International Lymphoedema Framework and Canadian International Lymphoedema Framework2010, p.4) (Table2.21). Immobility at the end of life is also a
problem that may exacerbate oedema.
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TABLE 2.21 End- of- life diseases associated withlymphoedema.
Disease Symptoms and complications
Advanced pelvic cancer Soft and pitting oedema may aect the legs,
genitalia and lower abdomen
Neuropathic pain, bladder spasms, stulae,
haemorrhage and malodorous exudate may be
part of ‘pelvic syndrome’
Lymphorrhoea is also common
Chronic heart failure Peripheral oedema
More widespread oedema and ascites can occur
Immobility exacerbates the symptoms
End- stage renal disease Hypoalbuminaemia
Fluid load may become intractable with dialysis
End- stage liver disease Ascites, jaundice, hepatic encephalopathy,
bleeding from oesophageal or gastric varices
Advanced
neurological disease
End- stage
respiratory disease
Soft, pitting oedema
Immobility promotes oedema
In Parkinson disease, the weaker side usually
has more oedema
Extensive soft, pitting lymphoedema as a result
of immobility or cor pulmonale
Source: Adapted from International Lymphoedema Framework and Canadian International Lymphoedema Framework (2010), pp.6–7.
The prevalence of oedema at the end of life is estimated at 5–10%
(International Lymphoedema Framework and Canadian International Lymphoedema Framework2010, p.3). The patient may experience oedema for an extended period before death, in some cases
with limited access to specialist care (Real etal.2016). Lymphoedema
of the lower limbs is a common problem in palliative care patients. In
an evaluation of 63 cases aged 45–97 years from a specialist palliative
care oedema service, almost 9in 10 patients had lower limb lymphoedema (Real etal.2016). It is essential for the palliative care team
to focus eorts on providing the best possible combination of eective treatments to suit the individual patient and relieve pain and
discomfort as much as possible.
The aim of palliative care is to avoid further harm and to
promote comfort. Early intervention is important. Many patients
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experience additional, preventable harm and suering because
intervention is not provided (Cobbe 2021; International Lymphoedema Framework and Canadian International Lymphoedema
Framework2010). It is therefore important to identify patients who
require a palliative care approach at an early stage so that the necessary treatment regime and professional and institutional support
can be put in place.
Assessment
Early assessment and intervention are essential to provide the patient
with the best chance of managing symptoms well and achieving
the greatest possible comfort (Lymphoedema Framework 2006).
Too often patients do not present to health professionals until the
lymphoedema is advanced and much more dicult to treat (Shah
etal.2016).
Assessment needs to consider the patient’s priorities and
goals. The cause of the lymphoedema should be diagnosed and the
most appropriate treatment pathway determined that can improve
symptoms. The stage of the underlying condition and the rate of
progression should also be considered (International Lymphoedema Framework and Canadian International Lymphoedema
Framework2010, p.8). It is most important to consider the symptoms’ impact on the patient in several ways:
How the symptoms aect their physical health and mobility.
Impact on the patient’s capacity to carry out daily tasks and
activities.
Impact on the patient’s family situation and the availability of
support and carers.
Presence and degree of pain.
Tools such as the Palliative Care Outcome Scale (PCOS) (Sherry
and McAuley2004) or the Memorial Symptom Assessment Scale can
be helpful to assess the impact of symptoms in palliative care patients
(Tranmer etal.2003). LYMQOL (Keeley etal.2010) is also available
to measure the specic impact of lymphoedema on the palliative
patient’s quality of life.
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Management
It is likely that the palliative patient with lymphoedema will have a
complex regimen combining several therapies designed to control
oedema, including compression, MLD, exercises and skincare. This is
sometimes referred to as complete decongestive therapy. All of these
therapies need to be focused on the comfort of the palliative patient
and the treatment regimen may need to be adapted (International
Lymphoedema Framework and Canadian International Lymphoedema Framework2010, p.15). MLD may provide some symptom
relief and improve comfort.
Compression Therapy
Compression therapy for the palliative patient remains a critical part
of management, but provision at a therapeutic level or dose may not
be suitable even in the presence of lymphorrhoea. Lymphoedema
compression in a reduced dose may be more suitable for comfort
dependent on the extent and site of the lymphoedema.
Exercise is important to generate muscle activity to improve the
propulsion of uid through the lymphatic system. It helps avoid limb
deconditioning by building muscle strength. It softens brosis and
increases venous and lymphatic return. Deeper breathing activates
the diaphragm to support lymphatic drainage. However, it is important to avoid overstraining in palliative patients, as trauma and
inammation worsen the symptoms of lymphoedema (International
Lymphoedema Framework and Canadian International Lymphoedema Framework2010, p.14).
Skincare in palliative patients restores hydration, counteracting
the mechanical stressors of compression therapy and maintaining
hygiene (International Lymphoedema Framework and Canadian
International Lymphoedema Framework2010, p.14). It is an opportunity to observe the skin for signs of infection and signs of risk factors such as cellulitis.
Summary
Lymphoedema has a signicant prevalence within the population
and has the potential to continue to increase further with the ageing
population, the increase in obesity and the longer- term survivorship
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from cancer treatment. In addition, the correlation with lower limb
wounds, venous insuciency and decreased mobility demonstrates
the need for a system- wide approach to management. Lymphoedema
baseline education for all levels of healthcare professionals and
increased awareness for the public are required to support early
detection and management. Through early diagnosis and intervention, patient harm will be avoided and the risk of an increased economic burden will be reduced, alongside a reduction in the negative
impact for those who live with lymphoedema. A tiered approach to
management is required, allowing for early identication and screening, prompt assessment and management, and escalation to specialist services with the ability to take a multidisciplinary approach for
the most complex cases.
LIPOEDEMA
What Is Lipoedema?
Lipoedema is a poorly understood long- term condition aecting adipose tissue. Commonly known as fat, adipose is a loose connective
tissue consisting mainly of adipocytes (fat cells). Its primary function
is for storing energy, but it is also involved in endocrine function
through the release of hormones. In lipoedema, the adipocytes of the
subcutaneous layer (under the skin) expand and replicate in an irregular way, leading to painful lumps beneath the skin. Lipoedema can
be progressive and as progression occurs these lumps enlarge, leading to large overhanging fat pads and signicant distortion of limb
shape. In addition to causing pain, lipoedema restricts mobility, limits life choices and often has a profound impact on a patient’s mental
health. Lipoedema almost exclusively aects women, but some cases
have been reported in men. Research from Germany estimates that
11% of women and post- pubertal girls are aected (Szél etal.2014);
however, the condition is under- recognised by health professionals,
so the true percentage is almost certainly higher.
Outside of specialist services, lipoedema is generally not recognised and, since it appears at rst glance similar to obesity or lymphoedema, it is often misdiagnosed. Lipoedema, lymphoedema and
obesity are separate conditions with dierent pathologies, although it
is possible to have them concurrently. For example, a patient with
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lipoedema may also have chronic secondary swelling (lymphoedema) or may still have obesity even if the abnormal lipoedema fat
were not present. It is therefore essential that a holistic assessment is
completed to ensure that advice is appropriate for the individual
patient. Table 2.22 highlights key dierences between lipoedema,
lymphoedema and obesity.
How toRecognise Lipoedema inPractice
The frequent lack of recognition, particularly in primary care, often
leads to patients being given unhelpful or harmful advice. Many
patients report being dismissed as obese by their GP and end up pursuing a cycle of aggressive dieting, which will not address the
lipoedema. One of the key features of lipoedema is that the aected
adipose tissue does not respond in the same way to conventional dieting as normal body fat does, so little improvement is made and symptoms persist. The exact aetiology of lipoedema is not fully understood,
but it is widely accepted that there are genetic, hormonal and inammatory components to it. A family history of relatives with similar
leg shapes is often noted, and the onset of the condition is typically
seen around times of hormonal change such as puberty, childbirth or
menopause (Al- Ghadban etal.2021). Concurrent inammatory conditions such as chronic bowel disorders and skin problems like acne
and psoriasis are not uncommon for lipoedema patients. It is also
estimated that around 40% of lipoedema patients have a thyroid disorder such as hypothyroidism or Hashimoto disease (Lukowicz
etal.2021).
In addition to an enlarged and distorted limb prole, the skin of
lipoedematous areas often feels cool compared to unaected areas.
On palpation it also usually feels soft, oppy, and may have indentations and a texture like that of orange peel (also known as peau
d’orange). In the early stages, a granular texture may be felt below the
skin. Patients may report that the limbs feel tired, uncomfortable or
tender to touch. Another common feature is being easily bruised. As
lipoedema advances and the tissues expand, the size and shape of the
limbs can change dramatically.
Visual examination is important because lipoedema can aect
dierent parts of the body. Examples include full leg from buttocks to
ankles (see Figures2.4 and2.5) or only around the hips and buttocks,
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TABLE 2.22 Key dierences between lipoedema, lymphoedema
andobesity.
Characteristic Lipoedema Lymphoedema Obesity
Sex of patient Almost always
women,
rare in men
Age of onset Times of hormonal
change
Causes Possibly genetic
and/
or hormonal
Familial
history of
the condition
Impact of
weight loss
Body location Legs, buttocks,
Laterality Bilateral Unilateral
Presence of
pain
Common Yes if primary,
Very little,
disproportionate
if any
hips and less
frequently arms
Usually painful Not directly
Men or women Men or women
Any age
depending
on the cause
Primary
(genetic) or
secondary
(lifestyle,
injury,
cancer, etc.)
coincidental
if occurring
via secondary
causes
Benecial,
proportional
weight loss
across the
body
Any body part Any body part
or bilateral
painful
Any age
Usually lifestyle
but sometimes
triggered by
other
conditions
(e.g. Cushing
disease)
Common, but
more to do
with
socioeconomic
factors
than genetics
Very benecial,
proportional
weight loss
Bilateral
Not directly
painful but
can impact
other body
parts (e.g.
joint pain)
FIGURE 2.4 Type III, Stage 2lipoedema, anterior view. Note the excess
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tissue around the inner aspect of the knees.
FIGURE 2.5 Same patient as in Figure2.4, posterior view. Note the stance
and position of the knees and ankles.
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FIGURE 2.6 Close- up anterior view of ankles to demonstrate ‘cu’
phenomenonin early stages. This becomes more prominent as the condition progresses.
but other presentations have been documented. The arms can also be
aected, but lipoedema does not aect the feet or hands. If present
below the knees it will stop suddenly at the ankles with a prominent
‘cu’ eect, and the concave spaces behind the malleoli will be lled
in (see Figures 2.6 and 2.7). Fat pads usually develop around the
inner part of the knees, and these steadily become larger and more
cumbersome as the condition progresses. Lipoedema presents bilaterally and the overall limb shape is usually symmetrical; however,
one limb may be larger if there is secondary oedema.Figures 2.8, 2.9
and 2.10 show a more advanced case displaying many of the features
described.
Venous disease is a common co- morbidity that occurs in patients
who have lipoedema, with many patients displaying symptoms such
as varicose veins and telangiectasia. Chapter 1 explores these and
other venous conditions in more detail. Evidence suggests that
lipoedema weakens connective tissue, including that of blood vessel
walls, meaning that they are more susceptible to damage, which
leads to venous disease (Allen et al.2020). This could also explain
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