Best Practice Guidelines - The management of lipoedema WUK BPG
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
WUK BPG
Best Practice Guidelines
The management of lipoedema
2017
Diagnosis and assessment
Lipoedema management
Life style support and
self care
Compression therapy
Non-surgical and surgical
interventions
BEST PRACTICE GUIDELINES: EXPERT WORKING GROUP:
THE MANAGEMENT OF Tanya Coppel, Specialist Lymphoedema Physiotherapist,
LIPOEDEMA Belfast Health & Social Care Trust, Belfast
PUBLISHED BY: Julie Cunneen, Macmillan Clinical Lead for
Lymphoedema Service/Nurse Consultant, Moseley Hall
Wounds UK
Hospital, Birmingham
A division of Omniamed,
1.01 Cargo Works Sharie Fetzer, Chair, Lipoedema UK, London
1–2 Hatfields, London SE1 9PG, UK
Tel: +44 (0)203735 8244 Kristiana Gordon, Consultant in Dermatology and
Web: www.wounds-uk.com Lymphovascular Medicine, St George’s Hospital, London
Denise Hardy, Lymphoedema/Lipoedema
Nurse Consultant, Kendal Lymphology Centre,
Kendal, Cumbria; Nurse Adviser, Lipoedema UK/
Lymphoedema Support Network (LSN), Cumbria; Co-
Chair of the Expert Working Group
© Wounds UK, March 2017
This document has been developed Kris Jones, Patient; Joint Managing Director & Nurse
by Wounds UK and is supported
Consultant, LymphCare UK; Nurse Consultant,
byActiva Healthcare, BSN
Medical, Haddenham Healthcare, Lipoedema UK
Lipoedema UK, medi UK, Sigvaris
and Talk Lipoedema. Angela McCarroll, Trustee, Talk Lipoedema; Patient,
Northern Ireland
Caitriona O’Neill, Lymphoedema Care Lead Nurse,
Accelerate CIC, London
Sara Smith, Senior Lecturer in Dietetics and Nutrition,
Queen Margaret University, Edinburgh
Cheryl White, Lymphoedema Specialist Physiotherapist,
Cheshire
Anne Williams, Lymphoedema/Lipoedema Nurse
Consultant, Lecturer in Nursing, Queen Margaret
University, Edinburgh; Trustee, Talk Lipoedema,
Edinburgh; Co-Chair of the Expert Working Group
This publication was coordinated
by Wounds UK with the Expert
REVIEW PANEL:
Working Group. The views
Rebecca Elwell, Macmillan Lymphoedema CNS, Univer-
presented in this document are
sity Hospitals of North Midlands NHS Trust, Staffordshire
the work of the authors and do not
necessarily reflect the views of the Peter Mortimer, Professor of Dermatological Medicine,
supporting companies. Consultant Dermatologist, St George’s University of
London
How to cite this document:
Wounds UK. Best Practice Alex Munnoch, Consultant Plastic Surgeon and Clinical
Guidelines: The Management of Lead, Ninewells Hospital, Dundee
Lipoedema.
London: Wounds UK, 2017. Dirk Pilat, General Practitioner; Medical Director for
Available to download from: ELearning at the Royal College of General Practitioners
www.wounds-uk.com (RCGP), London
Melanie Thomas MBE, National Clinical Lead for
Lymphoedema, NHS Wales and the
Lymphoedema Network Wales
INTRODUCTION
Developing best practice guidelines for the
management of lipoedema
People with lipoedema in the UK face The meeting participants recognised a
significant challenges. Many are not general paucity of clinical evidence relating GUIDE TO USING THIS
DOCUMENT
recognised by healthcare professionals as to the management of lipoedema. The
Each section of the
having the condition or are misdiagnosed. conclusions of the meeting formed the basis
document helps
Awareness of lipoedema among medical for this document, which draws, where
healthcare practitioners
practitioners is poor, and little clinical possible, on relevant literature. Where
to provide appropriate
research is focused on the condition. To evidence is lacking, expert opinion has been
support and effective
date, no good quality guidelines for the used to inform the guidelines and make
treatment and care for
management of the disease have been recommendations. The content was subject
patients with lipoedema.
published, resulting in inconsistent and to review by the Expert Working Group and
The key points for each
frequently inappropriate care for people additional reviewers before being finalised.
section summarise
with lipoedema.
the information most
This document will be of interest to anyone
relevant to clinical
Even when lipoedema is diagnosed correctly, involved in delivering support and clinical
practice
accessing appropriate care within the NHS services to people with lipoedema, including
may be difficult because of poor general practitioners, lymphoedema
understanding of treatment and referral therapists, community nurses, plastic
routes, and geographical variations in clinic surgeons, dietitians, commissioners,
availability, funding and capacity. third-sector organisations and more.
Lipoedema is a chronic, incurable disease There is still a considerable amount to learn
that can have a severe impact on quality of about lipoedema. Undoubtedly, the next few
life, and physical and psychosocial years will bring rapid advances in
wellbeing. Some patients are so seriously understanding of the pathophysiology of
affected that they lead very restricted lives, lipoedema and the most effective ways of
sometimes to the extent of being unable to managing the condition. As a result, the
leave their homes. The complexity of the Group recognises that this document is likely
issues faced by patients with lipoedema to need to be reviewed within three years.
necessitates interprofessional,
multidisciplinary care with an emphasis on The Group hopes that the document will be
supporting self management and working in useful to people with lipoedema, and the
partnership with the person to identify wide range of professionals who have
realistic goals and to manage expectations. contact with them. This document is an
early step towards achieving tangible
These best practice guidelines on lipoedema benefits for patients, enhancing recognition
were inspired by a group of clinicians who and diagnosis of the condition by
first started discussing the need for clear professionals and the public, improving
guidance in 2015. The discussions access to best practice management, and
culminated in a meeting in September 2016 providing scope for future development of
that had the specific aim of developing lipoedema services in the UK.
guidelines on management that improve the
lives and outcomes of people with Anne Williams and
lipoedema. The meeting was ground Denise Hardy
breaking: not only did it bring together key Co-Chairs
opinion leaders and experts involved in the
treatment of lipoedema from all around the
UK, but, significantly, it also included people
with lipoedema representing UK third
sector organisations.
BEST PRACTICE GUIDELINES: THE MANAGEMENT OF LIPOEDEMA 3
EPIDEMIOLOGY AND
PATHOPHYSIOLOGY
OF LIPOEDEMA
SECTION 1: EPIDEMIOLOGY AND
PATHOPHYSIOLOGY OF LIPOEDEMA
Lipoedema was first described in 1940 and suggests: cases may be ‘hidden’ because of Box 1. Synonyms for
is a chronic incurable condition involving a their mild nature or because the person is lipoedema (Schmeller &
pathological build-up of adipose tissue reluctant to contact health services. Other Meier-Vollraith, 2007;
(Allen & Hines, 1940). It typically affects the cases may be unrecognised or misdiagnosed Langendoen et al, 2009;
thighs, buttocks and lower legs, and by health services. Common misdiagnoses Herbst 2012a; Cornely,
2014)
sometimes the arms, and may, although not include obesity or lymphoedema (Box 2)
always, cause considerable tissue (Goodliffe et al, 2013), although both ■■ Adiposalgia
enlargement, swelling and pain. It may conditions may co-exist with lipoedema. ■■ Adiopoalgesia
significantly impair mobility, ability to ■■ Lipalgia
perform activities of daily living, and Cause ■■ Lipedema (American
psychosocial wellbeing. Current The precise mechanisms responsible for the spelling)
conservative management involves development of lipoedema are unknown, ■■ Lipohyperplasia dolorosa
encouraging self-care, managing symptoms, but it is likely that multiple factors are ■■ Lipohypertrophy
improving functioning and mobility, involved (Okhovat & Alavi, 2014). dolorosa
providing psychosocial support, and ■■ Lipomatosis dolorosa of
the legs
preventing deterioration in physical and Lipoedema often first presents during
■■ Painful column legs
mental health and wellbeing. puberty, although oral contraceptive use, ■■ Painful fat syndrome
pregnancy and the menopause also appear ■■ Riding breeches
Lipoedema is predominantly a chronic to be triggers. These observations suggest syndrome
adipose tissue disorder (the word lipoedema that hormonal change may be involved ■■ Stovepipe legs.
means ‘fat swelling’), with clinically apparent in initiating the characteristic build-up of
oedema due to fluid accumulation in the adipose tissue (Fonder et al, 2007; Bano et
tissues occurring as a secondary feature in al, 2010; Godoy et al, 2012). Onset of the
some individuals (Todd, 2010; Herbst, disease after periods of significant weight Box 2. Lymphoedema and
2012a; Reich-Schupke et al, 2013; Herbst et gain have also been reported (personal lipoedema (Harwood et
al, 2015). Although most commonly called communication, K Gordon). al, 1996; Lymphoedema
Framework, 2006;
lipoedema, the condition has a variety of Goodliffe et al, 2013)
other names (Box 1). There is also evidence of a genetic
predisposition to lipoedema. A family Patients with lipoedema
Prevalence history of the condition has been found may be misdiagnosed as
Lipoedema almost exclusively affects in 15%–64% of patients (Harwood et having lymphoedema.
women, but a few cases have been reported al, 1996; Child et al, 2010; Schmeller & Lymphoedema results
in men (Chen et al, 2004; Langendoen et al, Meier-Vollrath, 2007). The genetic variants from malfunction of the
2009). Relatively little epidemiological involved have not been identified fully, lymphatic system, whereas
research has been carried out on lipoedema but research suggests that autosomal lipoedema is thought to
and so it is unclear exactly how many dominance with male sparing is the most primarily be a disorder
people are affected and to what extent. likely mode of inheritance (Child et al, of adipose tissue (a
The research so far has produced widely 2010). Investigations into the genetics lipodystrophy). Confusingly,
varying figures. In the UK, the minimum of lipoedema are ongoing, and include however, patients with
prevalence of lipoedema has been estimated researching whether men may act as lipoedema may develop
to be 1 in 72,000 (Child et al, 2010). carriers for the associated genetic factor(s). lymphatic dysfunction.
However, the authors noted that this is This combination of
likely to be an underestimate (Child et al, lipoedema and secondary
2010). In Germany, the prevalence of lymphoedema is
lipoedema has been estimated to be 11% in sometimes referred to as
women and post-pubertal girls (Földi et al, lipolymphoedema.
2006; Szél et al, 2014).
Further research is needed to establish
clearly the proportion of the population
affected by lipoedema. It is likely to be more
common than the limited evidence available
4 BEST PRACTICE GUIDELINES: THE MANAGEMENT OF LIPOEDEMA
VENOUS LEG EPIDEMIOLOGY AND
PATHOPHYSIOLOGY
ULCERATION OF LIPOEDEMA
Enlargement of fat tissue joint problems, may act to decrease the
The characteristic increase in subcutaneous effectiveness of the venous and lymphatic Key points
fat tissue seen in lipoedema may be due to systems (Harwood et al, 1996; Cornely, 1. Lipoedema is
adipocyte hypertrophy (increase in size but 2006; Langendoen et al, 2009). As a result, underdiagnosed and
not necessarily number of fat cells) and/or the rate of interstitial fluid accumulation almost exclusively
hyperplasia (increase in number of fat cells) may exceed the rate of clearance, and affects women
(Suga et al, 2009; Schneble et al, 2016) oedema may occur. 2. Although lipoedema is
(Figure 1). In addition, there is evidence of often misdiagnosed as
an increase in the rate of adipocyte death, In patients with lipoedema who also have simply being obesity,
possibly due to hypoxia induced by excessive chronic venous insufficiency (CVI) the lipoedema and obesity
tissue enlargement, and infiltration of fat tendency for interstitial fluid accumulation can co-exist
tissue by scavenger inflammatory cells may be compounded. 3. Hormonal and
(macrophages) (Suga et al, 2009). genetic factors are
Age-related changes that cause the likely to contribute
By inducing growth of new fragile capillaries lymphatic vessels to harden to the adipose
in the fat tissue, it has been suggested that (lymphangiosclerosis) and become less tissue enlargement
hypoxia may contribute to the easy bruising effective at removing fluid may also characteristic of
often reported by patients with lipoedema contribute to the development of lipoedema
(Fife et al, 2010). Other tissue changes that lipolymphoedema (Cornely, 2006). 4. Patients with lipoedema
may occur include reduced elasticity of the may develop secondary
skin and connective tissue (fascia) Some women with lipoedema report lymphoedema
(Jagtman et al, 1984; Herbst, 2012a). premenstrual fluid retention that can have a (lipolymphoedema),
considerable cyclical impact on the size and which may be
The cause of the pain and hypersensitivity shape of lipoedematous areas. compounded if chronic
often mentioned by patients with lipoedema venous insufficient is
is unclear, but may relate to compression of also present.
nerve fibres by enlarged fat deposits,
inflammation and/or central sensitisation (a
process which involves changes in the brain
and spinal cord that are associated with the
Genetic, hormonal
development of chronic pain) (Langendoen and other factors
et al, 2009; Peled & Kappos, 2016).
Development of oedema
In many patients, lipoedema is
accompanied by the formation of fluid
Hypertrophy and/or hyperplasia Reduced connective
oedema. It has been suggested that the of adipose tissue tissue elasticity
oedema may result from overloading of an
essentially normal lymphatic system (see
Appendix 1, page 32 for information on the
lymphatic system). Although, changes in Compression
the structure and function of the lymphatic of nerve fibres,
system have been observed in some inflammation,
Increased capillary Impaired
Impaired functioning
and/or central of the venous and
patients, much research is needed to sensitisation
fragility mobility
lymphatic systems
discover whether these changes are a
common feature of lipoedema and whether
they relate to the pathophysiology of the
condition (Amann-Vesti et al, 2001; Increased interstitial fluid
Bilancini et al, 1995).
Increased interstitial fluid formation due to Pain Bruising Oedema (lipolymphoedema)
capillary fragility and possible mechanical
obstruction of small lymphatic vessels by
adipose tissue enlargement, combined with
reduced skin and connective tissue
elasticity, reduced mobility due to pain or Figure 1: Possible pathophysiology of lipoedema
BEST PRACTICE GUIDELINES: THE MANAGEMENT OF LIPOEDEMA 5
DIAGNOSIS AND ASSESSMENT
ASSESSMENT
SECTION 2 : DIAGNOSIS AND ASSESSMENT
Lipoedema is often not recognised in the early stages or in mild forms as the
primary care, and awareness and symptoms and signs may be subtle. The Lipoedema UK and the
understanding of the condition among characteristics of lipoedema become more Royal College of General
medical professionals is limited (Goodliffe obvious as the disease progresses and in Practitioners (RCGP)
et al, 2013; Evans, 2013). more severe forms (Table 4, page 11). have partnered to develop
an online course called
A diagnosis of lipoedema is made on clinical Although the lower limbs and buttocks are the Lipoedema — An Adipose
grounds that are based on the history and most commonly affected areas, it is suggested Tissue Disorder. The Royal
examination of the patient. Currently, there that lipoedema may occur in any part of the College of Nursing (RCN)
are no known blood or urine biomarkers, body (Herbst et al, 2015) and there is a great has endorsed the course,
nor are there any specific diagnostic tests, deal of variation between individuals in areas which takes about 30
for lipoedema (Herbst, 2012a). affected. In one study, about 30% of patients minutes to complete and
with affected lower limbs also had affected can be accessed at: www.
In the absence of definitive diagnostic tests, arms (Fife et al, 2010). However, anecdotal elearning.rcgp.org.uk/
clinicians need to have a clear understanding reports suggest the proportion of patients with lipoedema
of the unique characteristics of lipoedema and affected lower and upper limbs is much higher,
how they differ from other apparently similar particularly in established lipoedema (stage 2
conditions such as lymphoedema and obesity onwards). In about 3% of cases of lipoedema,
(Fife et al, 2010) (see pages 8–9). the arms alone are affected, usually with
sparing of the hands (Fife et al, 2010).
Diagnosis of lipoedema may be delayed due
to poor recognition of the condition by In patients with lower limb lipoedema, the
health professionals. Making an accurate lower body will often be disproportionately
diagnosis may be challenging, particularly in large: individuals may require clothes for
the early stages or when a patient has their lower body that are several sizes
co-existing obesity. larger than those needed for their upper
body (Fife et al, 2010).
The course of lipoedema over time is not
fully understood, but is highly variable and The adipose tissue enlargement may be
unpredictable. The condition may progress accompanied by bruising without apparent
relentlessly in some patients, and yet in cause or due to minor trauma only. Many
others the only symptom is a relatively patients with lipoedema also often mention
minor increase in subcutaneous fat that pain and extreme sensitivity/tenderness to
remains stable for many years (Langendoen touch and pressure in the affected areas.
et al, 2009; Dutch Guidelines, 2014). They also report that the affected areas are
cooler than unaffected areas. (The skin over
History and symptoms obese tissue may also feel cooler because of
Typically, a patient with lipoedema is the insulating effect of fat.)
female and reports onset at puberty or at
another time of hormonal change. Only a Patients with lipolymphoedema may
handful of male cases have been reported mention that standing for long periods, hot
in the literature: all were thought to have environments or weather, and aeroplane
developed lipoedema secondary to journeys may exacerbate pain, swelling and
hormonal disturbances, with reduced feelings of heaviness in the limbs, probably
testosterone levels being a common factor due to fluid accumulation in the tissues.
(Child et al, 2010).
Mobility may be restricted due to pain,
The development of tissue enlargement is mechanical hindrance, and/or hip and
often insidious (Todd, 2016). It is usually knee joint problems, particularly in
bilateral and symmetrical, and most patients with severe lipoedema. There are
commonly affects the legs, thighs, hips anecdotal reports of a possible association
and/or buttocks, with sparing of the feet. between lipoedema and hypermobility
Diagnosis of lipoedema may be difficult in (Willams & MacEwan, 2016; Lontok et al,
6 BEST PRACTICE GUIDELINES: THE MANAGEMENT OF LIPOEDEMA
ASSESSMENT DIAGNOSIS AND
ASSESSMENT
Box 3. Areas for discussion with a patient suspected of having lipoedema
■ Age at onset and association with potential hormonal ■ Clothing sizes for upper and lower body
triggers, e.g. puberty, oral contraceptive use, pregnancy, ■ Impact on:
weight gain - Daily living
■ Areas of the body affected, and whether and how the degree - Mobility (e.g. need for aids such as walking stick or wheel-
and extent of enlargement or swelling have changed over time chair)
■ Effect of dieting, calorie restriction and physical activity/ - Personal relationships
exercising on weight and limb size - Work
■ Presence and severity of pain, discomfort or hypersensitivity - Emotional state
to touch ■ Family history
■ Presence, extent and triggers (if any) of bruising ■ Previous investigations and management (including surgery
■ Presence of knee or hip pain, and related mobility issues such as liposuction)
■ Differences in skin texture and temperature between affected ■ Other medical and surgical history (e.g. comorbidities,
and unaffected areas regular medication, allergies, previous episodes of cellulitis
■ Effect of rest or leg elevation on leg size and pain/discomfort and previous surgery)
in patients with lower limb enlargement ■ Reasons for presenting now, understanding of disease, and
■ Effect of prolonged standing, heat or hot weather on swelling expectations of treatment outcomes.
and pain/discomfort
2017). Muscle weakness may also play a clinicians to examine them. In addition to Box 4. Stemmer’s
part: a study in women with lipoedema and characteristic signs such as braceleting at sign (Lymphoedema
women with obesity found that those with the ankles, reduced skin temperature and Framework, 2006)
lipoedema had statistically significantly lower altered tissue texture may be present and
leg muscle strength (Smeenge, 2013). Some require palpation to detect (Table 1, page 8). Stemmer’s sign is
people become so restricted that they are Clinicians should check for Stemmer’s sign negative or not present
when a fold of skin can
housebound or unable to care for themselves. (Box 4), which can assist in differentiating
be pinched and lifted up
lipoedema from lymphoedema, and for at the base of the second
In addition, patients with lipoedema may pitting oedema (Box 5, page 8), which if toe or at the base of the
report family history of relatives with similar present may indicate lipolymphoedema. middle finger.
tissue enlargement. They often mention A positive sign (a) in a
repeated attempts to lose weight through Differential diagnosis patient with lipoedema,
calorie-restricted diets and exercising that Part of the reason that lipoedema may be when a fold of skin
have little or no impact on lipoedema- underdiagnosed is that it may be mistaken cannot be lifted, indicates
affected areas and result in weight loss from for other conditions that cause sub- secondary lymphoedema.
unaffected areas only (Fife et al, 2010). cutaneous tissue enlargement/swelling or fat Stemmer’s sign is usually
deposition. The two most frequent negative (b) in patients
Box 3 lists areas for discussion during history misdiagnoses are generalised obesity with ‘pure’ lipoedema.
taking in a patient suspected of having (particularly in young, otherwise well
lipoedema. It is important to recognise that patients) and lymphoedema (Table 2, page 9).
the patient may be presenting for the first time
or may have had investigations and Medical causes of bilateral symmetrical
management elsewhere previously. Also, in lower limb swelling are listed in Box 6 (page
some cases, the patient may have encountered 10). Infrequent causes of unusual fat
dismissive or negative responses during their deposition include Dercum’s disease,
contact with health services. Ascertaining the polycystic ovary disease, Cushing’s
patient’s reasons for presenting and their syndrome, growth hormone deficiency and
hopes for treatment and outcomes will form a lipodystrophies that cause lipohypertrophy
good basis for a partnership approach to (e.g. analbuminaemia) (Box 7, page 11).
management.
Investigations
Examination Currently, there are no diagnostic tests for
As lipoedema is a clinical diagnosis, lipoedema and the main purpose of
examination is particularly important, and investigations is to exclude other diagnoses or
individuals appreciate time taken by to inform lipoedema management strategies.
BEST PRACTICE GUIDELINES: THE MANAGEMENT OF LIPOEDEMA 7DIAGNOSIS AND ASSESSMENT
ASSESSMENT
Table 1. Characteristic signs of lipoedema that may be found during clinical examination
Sign Description
Subcutaneous tissue • Usually bilateral and symmetrical without involvement
enlargement of the hands and feet (at least initially)
• However, the pattern of areas affected and overall
shape may vary between patients
Cuffing or braceleting at the • The tissue enlargement stops abruptly at the ankles
ankles/wrists or wrists so that there is a ‘step’ before the feet or hands
which are usually unaffected
• May also be called ‘inverse shouldering’
Loss of the concave spaces • Occurs in lower limb lipoedema
either side of the Achilles • The concave areas posterior to the malleoli (retromalleolar sulci) and either side of the Achilles tendon are filled
tendon in
Bruising • Bruising may occur anywhere in areas affected by lipoedema,
often with no known cause
Altered skin appearance, • The skin of affected areas may feel softer and cooler than unaffected areas
temperature and texture • The skin may have the texture of orange peel or have larger dimples
Abnormal gait and limited • May be due to bulk of the legs and/or fat pads on the medial aspect of the knees
mobility • May include:
- Reduced or poor heel to toe strike during walking
- Flat feet
- Genu valgum (knock knees)
• Muscle weakness
Stemmer’s sign negative • Usually negative
(Box 4, page 7) • A positive Stemmer sign represents failure to pinch a fold of skin at the
base of the second toe, and is pathognomonic of lymphoedema
Pitting oedema (Box 5) in • Usually absent in the early stages of the disease
patients with lipoedema • Patients with lipoedema may find testing for pitting oedema
and secondary lympoedema particularly uncomfortable
(lipolymphoedema) • Pitting indicates the presence of excess interstitial fluid and may be
and/or chronic venous insuf- present in patients with lipolymphoedema
ficiency
Pictures supplied courtesy of BSN Medical
Box 5. Pitting oedema (Lymphoedema Framework, 2006)
Pitting oedema is a sign of excess interstitial fluid. It can be detected by applying
a thumb or finger to tissues with pressure that is sustained for at least 10 seconds.
Oedema is present when a dimple or pit remains in the tissues when the pressure
is removed. The depth of the pit produced may indicate the severity of the
oedema. Repetition of the test across the area suspected of involvement can help
to determine the extent of the oedema. N.B. Elucidation of this sign may cause
discomfort or pain and should be performed gently.
8 BEST PRACTICE GUIDELINES: THE MANAGEMENT OF LIPOEDEMAASSESSMENT
DIAGNOSIS AND
ASSESSMENT
Table 2. Differentiating lipoedema from lymphoedema and obesity (Forner-Cordero et al, 2009; Langendoen et al, 2009; Fife et al, 2010;
Child et al, 2010; Fetzer & Wise, 2015)
Characteristic Lipoedema Lymphoedema Obesity
Gender • Almost exclusively female • Male or female • Male or female
Age at onset • Usually 10–30 years • Childhood (mainly primary); adult (primary or • Childhood onwards
secondary)
Family history • Common • Only for primary lymphoedema • Very common
Areas affected • Bilateral • May be unilateral or bilateral depending on • All parts of the
• Usually symmetrical cause body
• Most frequently affects legs, hips • Usually
and buttocks; may affect arms symmetrical
• Feet/hands spared
Effect of dieting on condition • Weight loss will be • Proportionate loss from trunk and affected • Weight reduction
disproportionately less from limbs with uniform loss
lipoedema sites of subcutaneous fat
Effect of limb elevation • Absent or minimal • Initially effective in reducing swelling; may • None
become less effective as the disease progresses
Pitting oedema (Box 5, page 8) • Absent or minor in the early stages • Usually present but pitting may cease as the • No
of the disease disease progresses and tissues fibrose
Bruises easily • Yes • Not usually • No
Pain/discomfort in affected • Often • May be uncomfortable • No
areas • Hypersensitivity to touch in affected • No hypersensitivity to touch
areas
Tenderness of affected areas • Often • Unusual • No
Skin consistency • Normal or softer/looser • Thickened and firmer • Normal
History of cellulitis • Unusual (unless lipolymphoedema is • Often • Unusual
present)
Stemmer’s sign (Box 4, page 7) • Usually negative (unless secondary • Usually positive • Usually negative
lymphoedema is present)
Laboratory tests Imaging investigations
Routine screening blood tests useful in Imaging investigations such as ultrasound
excluding or identifying other or concomitant scans, magnetic resonance imaging (MRI)
conditions, especially if weight gain and scans and computed tomography (CT) scans
lethargy are present, may include urea and are usually not necessary to diagnose
electrolytes (U&Es), full blood count (FBC), lipoedema, but may have a role if there is
thyroid function tests (TFTs), liver function diagnostic uncertainty.
tests (LFTs), plasma proteins (including
albumin), brain natriuretic peptide (BNP – a Lymphoscintigraphy, a method of imaging
test for congestive heart failure) and glucose the lymphatic system that involves injection
(Forner-Cordero et al, 2012; NVDV, 2014). of radioactive tracers into the skin, should
detect lymphoedema (Keeley, 2006).
Even though hormonal factors are thought to
contribute to the development of lipoedema, Ultrasound measurement of dermal
there is no evidence that endocrinological thickness may help to differentiate
tests will detect any abnormalities (NVDV, lymphoedema and lipoedema
2014). Similarly, blood tests to measure the (Naouri et al, 2010).
levels of inflammatory markers, such as
C-reactive protein (CRP) or erythrocyte Venous duplex ultrasound scanning may
sedimentation rate (ESR) are unlikely to be indicated if chronic venous insufficiency
provide abnormal results. is suspected (Wounds UK, 2016).
BEST PRACTICE GUIDELINES: THE MANAGEMENT OF LIPOEDEMA 9DIAGNOSIS AND
ASSESSMENT
Hand-held devices Classification and staging Box 6. Other causes
There is increasing interest in the potential Lipoedema has been classified according to: of bilateral lower limb
role of hand-held devices that measure the ■ Distribution of the adipose tissue chronic oedema (Ely et al,
electrical properties of skin and superficial enlargement 2006; Trayes et al, 2013)
subcutaneous tissues as a way of ■ The shape of the enlargement (Table 3).
differentiating lipoedema and ■■ Chronic venous
lymphoedema. The reading obtained (the However, these classifications are of limited insufficiency (CVI)
tissue dielectric constant) is a measure of clinical use because neither indicates ■■ Congestive cardiac
the amount of water in the tissues. Higher severity or disease progression, and neither failure
readings indicate higher water content. guides treatment. ■■ Dependency or stasis
Although patients with lymphoedema have oedema
been found to have higher readings than The first system devised to describe the ■■ Obesity
patients with lipoedema, further research is severity and progression of lipoedema ■■ Hepatic or renal
needed to determine the role of this comprised three stages. More recent dysfunction
technology in diagnosis and management versions include a fourth stage to account ■■ Hypoproteinaemia
(Birkballe et al, 2014). for the development of lipolymphoedema ■■ Hypothyroidism
(Table 4, page 11). However, as oedema can ■■ Pregnancy and
Another device under development arise at any stage of lipoedema (Fife et al, premenstrual oedema
examines the effect of a small area of 2010), inclusion of this fourth stage is ■■ Drug-induced swelling,
suction over affected tissues. The suction is potentially confusing. e.g. calcium channel
maintained for 30 seconds and an blockers, steroids,
associated smartphone app videos the skin The staging system in Table 4 may indicate non-steroidal anti-
being tested (Levin-Epstein, 2016). a patient’s position in the progression of inflammatories.
lipoedema. However, it does not take
N.B. These conditions will usually
In patients with lipoedema, the suction is account of the severity of symptoms, e.g.
cause pitting oedema, and may
thought to produce characteristic skin pain and impact on lifestyle, neither of co-exist with lipoedema
changes that do not occur in patients which is necessarily related to the degree
without the disease. A pilot trial is of tissue enlargement.
underway (Levin-Epstein, 2016).
Table 3. Classifications of lipoedema (Meier-Vollrath & Schmeller, 2004; Földi & Földi, 2006; Langendoen et al, 2009; Herbst, 2012a)
According to the anatomical areas affected
Type Anatomical areas affected
Type I Pelvis, buttocks and hips (saddle bag phenomenon)
Type II Buttocks to knees, with formation of folds of fat around
the inner side of the knees
Type III Buttocks to ankles
Type IV Arms
Type V Lower leg
According to the shape of the tissue enlargement
Type Description
Columnar Enlargement of the lower limbs which become column-shaped or cylindrical
Lobar Presence of large bulges or lobes of fat overlying enlarged lower extremities,
hips or upper arms
Columnar lipoedema is much more common than lobar lipoedema
Pictures supplied courtesy of BSN Medical
10 BEST PRACTICE STATEMENT: THE MANAGEMENT OF LIPOEDEMADIAGNOSIS AND
ASSESSMENT
Table 4. Lipoedema staging (Schmeller & Meier-Vollrath, 2007; Herbst, 2012a; NVDV, 2014) Box 7. Other diseases
that may have unusual
Stage Description patterns of fat deposition
(Sam, 2007; Florenza et
1 • Skin appears smooth
al, 2011; Herbst, 2012a;
• On palpation, the thickened subcutaneous Kandamany & Munnoch,
tissue contains small nodules 2013; Melmed, 2013;
Nieman, 2015)
2 • Skin has an irregular texture that resembles ■■ Dercum’s disease —
the skin of an orange (‘peau d’orange’) or a mattress individuals have painful
• Subcutaneous nodules occur that vary from fatty nodules often
the size of walnut to that of an apple in size accompanied by a wide
range of other symp-
toms including fatigue;
3 • The indurations are larger and more prominent may be on the ‘lipo-
than in Stage 2 edema spectrum’
• Deformed lobular fat deposits form, ■■ Multiple symmetrical
especially around thighs and knees, lipomatosis (Mad-
and may cause considerable distortion elung’s disease) —
of limb profile painless symmetrical
4 • Lipoedema with lymphoedema (lipolymphoedema) tumour-like accumula-
tions of fat in the sub-
cutaneous tissues
■■ Polycystic ovary
disease — a hormonal
disorder with increased
Pictures supplied courtesy of BSN Medical production of androgen
hormones often accom-
panied by generalised
obesity
Future developments secondary lymphoedema is present ■■ Cushing’s syndrome
Some studies of the impact of liposuction (i.e. whether lipolymphoedema is present). — due to excess cortisol
(see pages 29–31) on patients with production; obesity is
lipoedema have used assessments of Such a system would need to be defined one of a wide range of
symptoms and functioning to monitor fully and formally validated, but could be symptoms and may be
outcomes (Schmeller et al, 2012; based on a scoring system for each of the accompanied by a char-
Baumgartner et al, 2016). following items: acteristic dorsal fat pad
• Degree of limb enlargement ■■ Growth hormone de-
Questionnaires were used to grade • Level of pain ficiency — causes may
spontaneous pain, pain upon pressure, • Presence and extent of bruising include pituitary disease
oedema, bruising, restricted movement, • Presence and extent of lymphoedema or trauma; the accom-
cosmetic impairment and reduction of • Alterations in gait panying obesity is often
quality of life on a five-point scale. Scores • Restrictions to mobility centralised
for individual items as well as a total score • Restrictions to performing activities ■■ Lipodystrophies that
were compared pre- and post-operatively. of daily living cause lipohypertrophy
• Impact on quality of life. (e.g. analbuminaemia)
The Expert Working Group suggested that — rare; may be congen-
a similar approach that considers symptoms The scoring system would need to be clear ital or acquired.
and functioning could be developed to and simple. Total scores could be used to
indicate non-surgical treatment needs and indicate whether the patient falls into the
response in patients with lipoedema. The mild, moderate or severe grade. In addition,
Group also suggested that the terminology the system could be used for monitoring,
‘mild’, ‘moderate’ or ‘severe’ is more intuitive e.g. changes in total or individual item
than the use of stages, and that each grade scores could be used to assess the
could include scope for indicating whether effectiveness of management approaches.
BEST PRACTICE STATEMENT: THE MANAGEMENT OF LIPOEDEMA 11DIAGNOSIS AND
ASSESSMENT
Assessment
Assessment of a patient with lipoedema
should be holistic and aim to define the Holistic assessment of a person with lipoedema
patient’s current disease severity, to indicate
suitability for management options and History - including symptoms of lipoedema,
to signal need for referral (Figure 2). In medical/surgical history
practice, diagnosis and assessment are often Extent, distribution and severity of
conducted concurrently and elements of the adipose tissue enlargement
two processes often overlap.
Pain
Degree and extent of adipose
tissue enlargement Mobility and gait
Measurement of the degree and extent of
adipose tissue enlargement in lipoedema
Psychosocial assessment
is not straightforward and is not used
for diagnosis. However, sequential
measurements may be useful for Dietary assessment
assessment and monitoring purposes. A
wide range of types of measurement may be Skin assessment
employed, from bodyweight to limb volume
measurement (Table 5, page 13). Vascular assessment
In general, simple methods are likely to be the Assessment of comorbidities
most useful and the easiest to use consistently.
Clinicians may find that they tailor the
measurement method used to the needs of
individuals. Documentation of the details of Pain Figure 2: Holistic
the measurement method used is important Pain is a common and often distressing feature assessment of a patient
to ensure that future measurements are of lipoedema that can impact significantly on with lipoedema
performed consistently and that changes daily life. The pain may take several forms,
detected are not artefacts of differences in including aching, heaviness, tenderness or
measurement location or technique. pain on touch. The cause of the pain is unclear,
but may be related to compression of nerves
For some patients, tracking measurements and/or inflammation (Lontok et al, 2017).
is highly motivating. However, the distortion
and flaccidity of the tissues in patients Pain may also be related to joint problems,
with lipoedema may make measurement especially of the knees and hips, arising from
impractical. In such situations, serial increased tissue laxity that may cause joint
photographs may be useful. misalignment or hypermobility, or from
degenerative changes (Hodson & Eaton, 2013).
Body mass index (BMI) is a measure of
the ratio between weight and height. It is Assessment should aim to determine the
used widely to define and diagnose obesity cause, nature, frequency, site, severity and
and to monitor efforts to lose weight. In impact of the pain. Rating scales can be
lipoedema, however, BMI is likely to be used to ask patients to quantify their pain at
high even when the person is not obese and the initial and ongoing assessments. Rating
is therefore of limited value (Reich-Schupke scales include:
et al, 2013). ■■ Numerical rating scale — e.g. individuals
are asked to rate their pain on a scale from
It should be noted that measurement for 0 to 10, where 0 is no pain and 10 is the
fitting compression garments is a separate worst pain imaginable
process from measuring for monitoring ■■ Visual analogue scale (VAS) — e.g.
purposes. Where available, clinicians individuals are asked to mark or indicate
should follow the measuring requirements the level of pain on a 10cm line where
for compression garments as stipulated by 0cm is no pain and 10cm is the worst pain
the manufacturer (see pages 23–27). imaginable (Dansie & Turk, 2013).
12 BEST PRACTICE STATEMENT: THE MANAGEMENT OF LIPOEDEMAHOSIERYAND
DIAGNOSIS
CLASSIFICATION
ASSESSMENT
AND PRODUCT
Table 5. Measurement for assessment and monitoring in lipoedema (de Koning et al, 2007; Langendoen Box 8. Lipoedema UK’s
et al, 2009; Lopes et al, 2016; Madden & Smith, 2016) Big Survey 2014 key
Weight • The simplest method of monitoring change in body size findings on quality of life
• Not a specific measure of body areas affected by lipoedema (Fetzer & Fetzer, 2016)
Waist • Waist measurement provides information about the distribution of body fat The 250 respondents to
• Increased waist circumference can be used to indicate whether a person is Lipoedema UK’s Big Survey
overweight or obese, and is associated with increased risk for metabolic syndrome 2014 reported that lipoedema
(≥80 cm and ≥94 cm for Caucasian women and men, respectively) had a considerable impact on
• Not a specific measure of a body area usually affected by lipoedema, but may be useful
their lives:
in helping to avoid obesity and to monitor efforts to lose non-lipoedematous fat
■■ 95% reported difficulty in
Waist to hip ratio • A higher waist-to-hip ratio (waist circumference ÷ hip circumference; using same buying clothes
units) is associated with increased risk for metabolic syndrome and cardiovascular ■■ 87% reported that
disease (≥0.85 for women and ≥0.90 for men)
lipoedema had a negative
• In lower limb lipoedema waist to hip ratio may be unreliable because of
effect on quality of life
disproportionate adipose tissue enlargement over the buttocks and upper thighs. A
changing ratio may be due to a reduction in waist size or an increase in hip size ■■ 86% reported low self
esteem
Circumferential • For example, in lower limb lipoedema: at ankle, calf, knee, thigh
■■ 60% reported restricted
• A simple method, but requires consistent use of measurement location for
meaningful monitoring over time social life
■■ 60% reported feelings of
Limb volume • Limb volume measurement is a complicated process
hopelessness
• Methods include water displacement and the use of computer programs that
■■ 51% reported that
calculate volume from circumferential limb measurements taken at 4cm intervals
with a spring-tension tape lipoedema had an impact
on ability to carry out
Body mass index (BMI) • A ratio that is calculated by dividing weight by height squared
their chosen career
(weight (kg) ÷ height2 (m2) )
• Widely used to diagnose obesity (BMI ≥30) and monitor weight change ■■ 50% reported restricted
• Of limited value in patients with lipoedema sex life
■■ 47% reported feelings of
self blame
Mobility and gait contribute to oedema if present by reducing ■■ 45% reported eating
Patients with lipoedema should be asked the effectiveness of the foot and calf muscle disorders
about mobility and observed when walking pump on venous return. ■■ 39% felt that lipoedema
so that gait and footwear can be assessed. had restricted their career
Shape distortion and fat pads at the inner Psychosocial assessment choices.
knee area may alter gait, which in turn may Patients with lipoedema may suffer
cause other problems in the legs, knees, considerable psychosocial distress and have
hips and back. Lipoedema may hinder significantly reduced quality of life (Box 8 and
mobility because of tissue bulk, pain or hip Box 9, page 14). The initial relief of finding out
and knee problems. what is wrong when a diagnosis is received
is often followed by feelings of frustration
Muscle strength may also be reduced: a and despair when the patient realises that
study of quadriceps strength found that treatment may not improve symptoms as
patients with lipoedema had significantly much as they had hoped.
lower strength than people with obesity
(Smeenge, 2013). The social stigma attached to increased body
size and physical restrictions, coupled with
Asking whether aids are needed for walking shame and embarrassment can damage
and in what circumstances may highlight self-esteem, lead to difficulties with personal
issues that may otherwise have gone relationships and work, and cause mental
unmentioned. Patients with lipoedema may health issues including anxiety and depression
also have flat feet or genu valgum (knock (Hodson and Eaton, 2013; Kirby, 2016; Fetzer
knees) and require podiatric biomechanical & Fetzer, 2016).
assessment. Restricted ankle mobility (e.g.
poor ankle dorsiflexion) and reduced heel to Practical difficulties, such as those due
toe movement with reduced heel strike may to reduced mobility and difficulties in
induce a laboured or plodding gait. This may finding clothes that fit, along with fear of
BEST PRACTICE STATEMENT: THE MANAGEMENT OF LIPOEDEMA 13DIAGNOSIS AND COMPRESSION
ASSESSMENT
Box 9. Quality of life assessment in lipoedema
Formal quality of life assessment is usually reserved for For decades, the medical profession was sceptical about
research purposes or for health economic evaluations the veracity of a person’s description of their illness. Yet
undertaken for regulatory purposes. General tools available the words of the individual are likely to provide the most
include the Short-Form (36) Health Survey (SF-36) accurate account of what it is like to live with a condition.
(Lins & Carvalho, 2016). Currently, there is no quality of Through such narratives the complexity of the illness
life assessment tool for people with lipoedema, although experience can be seen. As Hyden (1997) stated: “One
a tool has been developed for people with lymphoedema of our most powerful forms for expressing suffering and
(LYMQOL) (Keeley et al, 2010). A Patient Benefit Index, a experiences related to suffering is the narrative. Patients’
scoring system that evaluates the benefit of treatment from narratives give voice to suffering in a way that lies outside
the individual’s perspective, has been developed for people the domain of the biomedical voice.”
with lymphoedema and lipoedema (Blome et al, 2014).
Gathering information using the illness narrative enables
The illness narrative clinicians to gain a more complete understanding of how
An illness narrative (Hyden, 1997) is derived from an the condition is impacting each individual person and
individual’s explanation of their struggle with a chronic or therefore how to best meet their needs, in particular, how to
disabling illness. It is their story of living with the condition. better address their psychosocial needs.
discrimination or not fitting into seats in have produced weight loss from non-
public spaces, may discourage a patient lipoedematous areas, but may also have
from leaving their home, resulting in resulted in disordered eating behaviours,
social avoidance, withdrawal and isolation. including anorexia nervosa, binge eating and
These issues may be compounded by lack bulimia (Fife et al, 2010; Forner-Cordero et
of understanding and fear expressed by al, 2012; Williams & MacEwan, 2016; Todd,
family, friends and colleagues. Patients with 2016; Fetzer & Fetzer, 2016). However, up
lipoedema have also reported receiving to half of patients with lipoedema may also
verbal abuse from members of the public be overweight or obese (Langendoen et al,
(Kirby, 2016). 2009; Fife et al, 2010).
Patients with lipoedema should be Dietary assessment should be approached
asked about their home situation sensitively and include:
(e.g. accessibility, general living standards, ■■ Current diet, eating habits, and fluid and
household members, involvement of alcohol consumption
carers), activities of daily living, social ■■ Previous attempts to lose weight and
interactions, recreational/physical activities the effects of these
and exercise. Psychological assessment ■■ The patient’s:
should include evaluation of mood for signs - Beliefs about eating, weight gain
of depression or anxiety, ability to cope, and physical activity
energy levels and sleep quality. - Willingness to change
- Understanding of the role of diet in
Assessment should also include gaining an the management of lipoedema
understanding of the patient’s insight into (NICE CG189, 2014).
the condition and their personal goals and
expectations of the components and Skin assessment
outcomes of treatment. Skin should be assessed for general condition
and the effectiveness of personal care. The
Dietary assessment skin of patients with lipoedema is soft and
Many patients with lipoedema have tried easily damaged and some patients develop
repeatedly and often unsuccessfully over ulceration. It is particularly important to
many years to reduce the size of the examine any skin folds as these may develop
affected areas through dieting and physical friction or moisture-related skin damage,
activity or exercise. These efforts may and fungal or bacterial infections.
14 BEST PRACTICE STATEMENT: THE MANAGEMENT OF LIPOEDEMACOMPRESSION DIAGNOSIS AND
ASSESSMENT
Vascular assessment Furthermore, inflation of a cuff around the
Compression therapy is an important limb may be very painful for patients with More information on
element of the management of lipoedema. lipoedema. the role of ABPI in
Patients with lipoedema should undergo determining suitability
vascular assessment according to local Comorbidities for compression
protocol. Significant arterial disease is a Comorbidities should be identified and therapy can be found
contraindication to compression therapy management optimised to minimise impact in the Wounds UK Best
(Wounds UK, 2015). on patients with lipoedema. Patients with Practice Statement on
lipoedema have self-reported the presence Compression Hosiery,
The vascular assessment should include of several conditions: fibromyalgia, gluten which is available at:
consideration of signs, symptoms and allergy (coeliac disease), hypothyroidism, www.wounds-uk.com
risk factors for arterial disease. Doppler polycystic ovary syndrome, vitamin D
ultrasound to determine ankle-brachial- deficiency and arthritis (Herbst et al, 2015;
pressure index (ABPI) is a method often used Smidt, 2015; Williams & MacEwan, 2016).
for vascular assessment. However, tissue However, evidence of direct links between
enlargement may make it difficult to get an lipoedema and many of these conditions is
accurate ABPI in patients with lipoedema. currently very limited.
Key points
1. The diagnosis of lipoedema is made on clinical grounds: there are no diagnostic tests
for the condition
2. Lipoedema is a condition that is distinct from lymphoedema
3. Lipoedema may have a significant impact on a patient’s physical and
mental health and wellbeing
4. Patients with lipoedema generally report a history of bilateral symmetrical limb
enlargement, with sparing of the hands and feet, which is not responsive to dieting.
They may also report pain, sensitivity to touch and easy bruising, and a family history of
similar tissue enlargement and shape disproportion
5. Affected areas of the body may be softer and cooler, with a texture that is dimpled or
resembles a mattress
6. The presence of pitting oedema in affected areas indicates lipolymphoedema
7. Routine blood tests may be useful to exclude or identify other conditions
8. Imaging investigations are not used routinely
9. Further work is required to develop a classification/staging system for lipoedema
that takes into account disease progression along with symptoms such as pain or
restrictions to mobility
10. Holistic assessment should include the degree and extent of adipose tissue enlargement,
presence and level of pain, mobility and gait, psychosocial assessment, dietary
assessment, skin assessment, vascular assessment and assessment of any comorbidities
11. Psychosocial assessment is particularly important in people with lipoedema because of
the long-term nature of the disease and the importance of self-management.
BEST PRACTICE STATEMENT: THE MANAGEMENT OF LIPOEDEMA 15PRINCIPLES OF COMPRESSION
MANAGEMENT
SECTION 3 : PRINCIPLES OF MANAGEMENT
Box 3. Dos and don’ts of hosiery care
Lipoedema is a long-term condition that
has wide-ranging impacts on the health
and psychosocial wellbeing of patients. Facilitation and enhancement
Consequently, an interprofessional or of the patient’s ability to self-care:
including education, healthy lifestyle
multidisciplinary approach to management (diet/physical activity/weight reduction)
is often required. However, there is
currently inconsistency and inequity across
the UK in referral patterns and care for
patients with lipoedema.
Patients recognised as possibly having Optimisation of health and Management of symptoms:
lipoedema in a primary care setting may prevention of progression: including mangement of pain,
be referred to a lymphoedema service, including weight management, impaired mobility, oedema and
compression therapy, treatment psychosocial issues
where available, for investigation, diagnosis, of concomitant conditions
management and co-ordination of care.
However, there is variation throughout the
UK in provision of lymphoedema services,
and some services do not have sufficient
capacity to manage patients with lipoedema.
Where there is no provision of lymphoedema
services, a referral to vascular or plastic Figure 3: Principles of lipoedema management
surgery services may be appropriate. In keeping with the NHS goal for
personalised care for people with long-
Even so, the Expert Working Group term conditions, clinicians should take a
concluded that lymphoedema services are the collaborative approach to the management
most appropriate setting for the management of a patient with lipoedema, providing
of patients with lipoedema, not least because individualised care plans according to need
of the expertise held within these services and person-centred treatment goals (NHS
in differentiating the two conditions and in Outcomes Framework; Coulter et al, 2013;
the use of compression therapy. The Group WHO, 2004; Woods & Burns, 2009; Welsh
considers that improved recognition of the Assembly Government, 2007).
disease and appropriate referral patterns
are reliant on enhancing awareness and The main components of lipoedema
recognition of the disease in primary care management are:
settings, and in the wider provision of ■■ Psychosocial support, management of
lipoedema/lymphoedema services. expectations and education, including
family planning, pregnancy advice and
Third sector organisations, such as genetic counselling
Lipoedema UK (www.lipoedema.co.uk) and ■■ Healthy eating and weight management
Talk Lipoedema (www.talklipoedema.org), ■■ Physical activity and improving mobility
provide help with self-management and are ■■ Skin care and protection
important sources of peer support. ■■ Compression therapy
■■ Management of pain.
Principles of lipoedema management
The management of lipoedema requires a Each element needs to be tailored according
holistic approach (Figure 3) that includes: to the severity of symptoms, degree
■■ Facilitating and enhancing the patient’s and complexity of tissue enlargement,
ability to self-care and cope with the whether there has been progression to
physical and psychosocial impact of the lipolymphoedema, and the psychosocial
condition status of the patient.
■■ Managing symptoms
■■ Optimising health and preventing Patients with lipoedema may be well
disease progression. informed about their condition and possible
16 BEST PRACTICE STATEMENT: THE MANAGEMENT OF LIPOEDEMACOMPRESSION PRINCIPLES OF
MANAGEMENT
management routes following internet Table 6. Involvement of the multidisciplinary team in the management of lipoedema
searching and participation in social media.
However, the advice and information found Indication Clinician/service
may not be necessarily grounded in evidence. • Tissue enlargement ± oedema → Lipoedema/lymphoedema specialist clinician
Individuals may be susceptible to • Pain, aching, sensitivity to touch
misinformation and may need help in • Abnormal gait → Physiotherapist
understanding what is best practice and most • Muscle weakness
likely to be of benefit based on current • Joint pain
evidence, and what is not yet clear or may be
• Mobility problems → Occupational therapist
detrimental. Such discussions require a
• Difficulty with day-to-day activities
sympathetic, non-judgemental approach to
avoid discouraging or offending individuals in • Advice and education about weight → Dietitian
their efforts to improve their condition. management, healthy eating, disordered
eating, nutritional supplements, diabetes
Discussions should also bear in mind that • Flat feet → Podiatrist
individuals are often very vulnerable and • Abnormal gait
sensitive after a long journey to diagnosis, • Unmanageable/chronic pain → Pain clinic
which may have included disheartening
• Concomitant conditions → Appropriate specialist service (e.g.
and upsetting comments from healthcare vascular service, diabetic clinic,
professionals seen previously. psychological services)
• In carefully selected patients, after non- → Plastic surgeon
Support and encouragement alongside
surgical approaches have been implemented: → Bariatric surgeon
working in partnership with the patient
• Severe tissue enlargement causing
and their carer(s) with careful management
mobility impairment
of expectations, including sensitive
• Management of severe obesity
discussions about the life-long nature of the
condition, should underpin the best practice Patient pathway
management of lipoedema. Appendix 2, page 33, summarises the patient pathway through assessment and management
Clinicians specialising in the management ■■ Reduced likelihood of progression to
lipolymphoedema Key points
of lipoedema have a key role in providing
■■ Where present, reduced severity of 1. A multidisciplinary
education and support around a healthy
lipolymphoedema and reduced risk of approach to the
lifestyle, and in implementing and managing
complications such as cellulitis management
compression therapy. Potential roles for
■■ Minimisation of secondary joint of lipoedema is
other members of the multidisciplinary team
problems, such as knee and hip necessary
are listed in Table 6. It should be noted that
osteoarthritis 2. Management aims to
referral may not always be available within
■■ Minimisation of impact on ability to manage symptoms,
the NHS; where available, individual services
perform daily activities, including work to facilitate and
may have specific restrictions and criteria for
■■ Enhanced ability to self-care enhance the patient’s
referral. Private referrals may be possible for
■■ Improved psychosocial wellbeing. ability to self-care and
patients with sufficient financial resources.
optimise health and
Primary care and community-based services
to prevent disease
have an important role in supporting and These effects are also likely to result in wider
progression
enabling self-care and ensuring referral when benefits to the healthcare system including
3. The main
appropriate (Todd, 2016). an overall reduction in healthcare utilisation
components
due to lipoedema and for obesity-related
of lipoedema
Benefits of lipoedema management conditions such as diabetes.
management are:
Lipoedema is a long-term condition that
psychosocial support
is not curable. However, management of Although there is currently no evidence
and education,
lipoedema according to best practice has that early treatment improves prognosis
healthy eating,
the potential to produce benefits including: in lipoedema, the Expert Working Group
weight management,
■■ Reduction in pain considers that early diagnosis, intervention
physical activity, skin
■■ Improved limb shape and initiation of self-care would produce the
care, compression
■■ Avoidance of impairment or greatest health and economic benefits. As yet,
therapy and
improvement in mobility no formal health economic analyses have been
management of pain.
■■ Management or avoidance of obesity done on the impact of lipoedema management.
BEST PRACTICE STATEMENT: THE MANAGEMENT OF LIPOEDEMA 17You can also read
