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Q J Med 2003; 96:731–738
doi:10.1093/qjmed/hcg126
Original papers
Lymphoedema: an underestimated health problem
C.J. MOFFATT
1
, P.J. FRANKS
1
, D.C. DOHERTY
1
, A.F. WILLIAMS
1
, C. BADGER
2
,
E. JEFFS
3
, N. BOSANQUET
4
and P.S. MORTIMER
2
From the
1
Centre for Research and Implementation of Clinical Practice, Faculty of Health & Human
Sciences, Thames Valley University, London,
2
St George’s Hospital Medical School, London,
3
The Haven Trust, London,
4
Department of Bio-engineering, Imperial College, London, UK
Received 20 January 2003 and in revised form 7 August 2003
Summary
Background: Lymphoedema/chronic oedema is an
important cause of morbidity in the population, but
little is known of its epidemiology and impact on
patients or health services.
Aim: To determine the magnitude of the problem
of chronic oedema in the community, and the likely
impact of oedema on use of health resources,
employment and patient’s quality of life.
Design: Questionnaire-based survey.
Methods: Health professionals from dedicated lym-
phoedema services, specific out-patient clinics,
hospital wards and community services (GP clinics
and district nurses) were contacted to provide
information on patients from within South West
London Community Trust. A subset of the identified
patients was interviewed.
Results: Within the catchment area, 823 patients
had chronic oedema (crude prevalence 1.33/1000).
Prevalence increased with age (5.4/1000 in those
aged > 65 years), and was higher in women (2.15 vs.
0.47/1000). Only 529 (64%) were receiving treat-
ment, despite two specialist lymphoedema clinics
within the catchment area. Of 228 patients inter-
viewed, 78% had oedema lasting > 1 year. Over
the previous year, 64/218 (29%) had had an acute
infection in the affected area, 17/64 (27%) being
admitted for intravenous antibiotics. Mean length
of stay for this condition was 12 days, estimated
mean cost £2300. Oedema caused time off work in
> 80%, and affected employment status in 9%.
Quality of life was below normal, with 50%
experiencing pain or discomfort from their oedema.
Discussion: Chronic oedema is a common problem
in the communi ty with at least 100 000 patients
suffering in the UK alone, a problem poorly
recognized by health professionals. Lymphoedema
arising for reasons other than cancer treatment is
much more prevalent than generally perceived, yet
resources for treatment are mainly cancer-based,
leading to inequalities of care.
Introduction
Lymphoedema is a chronic condition characterized
by oedema, usually of one or more limbs and in
some cases involving the trunk, head or genital area.
While it is acknowledged as a serious complication
following treatments for cancer, there has been little
appreciation that lymphoedema may affect many
Address correspondence to Professor C.J. Moffatt, Centre for Research and Implementation of Clinical Practice,
Faculty of Health & Human Sciences, Thames Valley University, 32–38 Uxbridge Road, London W5 2BS.
e-mail: christine.moffatt@tvu.ac.uk
QJM vol. 96 no. 10
!
Association of Physicians 2003; all rights reserved.
other types of patient where the cause is not
oncology-related, and provision of care has focused
on patients following treatment for cancer. There is
no proven drug treatment for lymphoedema. Man-
agement aims to reduce or delay the progression of
swelling and prevent associated infection. This is
usually achieved using a combination of skin care,
external pressure (bandaging or hosiery), isotonic
exercise and massage.
1,2
The proof of concept for
using physical means to stimulate a failing lymph
drainage has a sound physiolo gical basis, but the
quality of evidence on the relative effectiveness of
therapies is poor. Few randomized controlled trials
have been published, and none has evaluated
patients’ treatment preferences or effects on qua lity
of life.
3
At present, service delivery is based on the
relationship of lymphoedema with cancer, and
patients with other forms of lymphoedema are
often denied access to care. As part of the National
Service Framework for cancer services, lymph-
oedema treatment is highlighted for provision.
4
This two-tiered system has developed due to a
lack of appreciation of the true prevalence of
lymphoedema within the general population, lead-
ing to lymphoedema being a low priority in an
already over-stretched health service.
It is difficult to make recommendations about
service delivery when little is known about either
the magnitude of the problem or the deficits of care.
Current epidemiology estimates are based fre-
quently on small selected populations with specific
clinical problems such as breast cancer.
5
Little is
known of the numbers of patients being managed in
general practice or by community services. Many
of the existing lymphoedema services are based
in hospices or oncology departments of acute
hospitals, by their nature restricting access to other
patient groups. The patients’ representative body,
the Lymphoedema Support Network (LSN), has
identified major deficits in care delivery across the
country.
6
Anecdotal reports suggest that patients
travel many miles for diagnosis and treatment of
their problem.
The present study is the first stage of a strategy
to develop effective lymphoedema services within
the UK, using best available evidence on cost-
effective care. The objective of this epidemiology
study was to identify all patients with chronic
oedema, likely to be lymphoede ma, of > 3 months
duration who were known to, or being treated
by, health professionals within a specified geogra-
phical area at the time of survey. Ideally, the
diagnosis of lymphoedema is made on clinical
grounds and confirmed by lymphoscintigraphy.
7
For the purposes of this epidemiological study,
lymphoscintigraphy on all suspected cases was
impractical and therefore the diagnosis was made
according to set clinical criteria, namely: (i) persis-
tent oedema of > 3 months duration; (ii) minimal
response to ov ernight elevation or diuretics; and
(iii) the presence of skin changes indicating early
elephantiasis (thickened skin, hyperkeratosis and
papillomatosis). Criticism that chronic oedema
due to other aetiologies was included can be
defended on the basis that (a) patients with systemic
disorders likely to cause oedema, e.g. acute
heart failure, were excluded from the study and
(b) all other forms of oedema, whatever the under-
lying cause, are due to an imbalance between
capillary filtration and lymph drainage.
8
Increases
in filtration should be compensated for by an
increase in lymph drainage. Any oedema therefore
implicates the lympha tic system to some extent,
even though it may not be primarily at fault.
9
Methods
The research partnership included clinicians,
researchers, organisational consultants and the
LSN, who shared responsibility for the development
and delivery of the project. The study was carried
out in the former South West London Community
Trust (SWLCT) in 2000. At the time of study, the
Trust was responsible for delivering care to a
population of approximately 619 000, of whom
14% were over the age of 65, an d 15% were from
ethnic minority groups. In addition to the commu-
nity services, the area was served by two specialist
lymphoedema services (St George’s Hospital and
the Royal Marsden Hospital, Fulham Road and
Sutton). Acute general services were also provided
by St Helier and Epsom Hospitals and Care of the
Elderly at Bolingbroke and Epsom Hospitals. All
local ethics committees were contacted and gave
consent for the study to be undertaken in their
clinical areas.
Case ascertainment
Aim
The aim of the case ascertainment was to identify
all patients with chronic oedema/lymphoedema
receiving care or known to health professionals
within the geographical area bounded by South
West London Community Trust. An expert panel of
lymphoedema specialists defined chronic oedema/
lymphoedema using the following definition:
‘Chronic oedema is a broad term used to describe
oedema which has been present for more than 3
months and involves one or more of the following
areas: limb/s, hands/feet, upper body (breast/chest,
732 C.J. Moffatt et al.
shoulder, back), lower body (buttocks, abdomen),
genital (scrotum, penis, vulva), head, neck or face.
Oedema which develops as a result of a failure in
the lymphatic system is referred to as lymphoedema
but chronic oedema may have a more complex
underlying aetiology. At this stage we do not expect
to make a differential diagnosis but need to record
the actual numbers of people with oedema sugges-
tive of chronic oedema/lymphoedema, even if a
medical diagnosis has not been confirmed.’
The clinicians were asked to identify patients
based on these criteria. Many of the patients had
been previously diagno sed with lymphoedema by
virtue of past cancer treatment or investigation by a
lymphoedema clinic.
A process of consultation was undertaken with
relevant managers and staff prior to the formal
identification process. As part of the process,
community clinical staff were involved in designing
and piloting the questions used. A proforma was
designed to identify all patients suffering from
chronic oedema/lymphoedema. The information
requested included simple demographic details
and GP contact details. The site of oedema was
identified using a diagram of anterior and posterior
views of the body and tick boxes. Questions relating
to the definitions of lymphoe dema were asked,
including duration of oedema, complete resolution
overnight or on elevation, and proven diagnosis or
treatment for lymphoedema. Professionals were
asked to descri be whether treatment was provided,
and if so, what treatments were used for these
patients. A subjective assessment of whether the
clinician felt the patient’s oedema was well con-
trolled or not was also included.
Study design
The questionnaire was sent to all health profes-
sionals within the area. Apart from community and
acute trust staff this included all private and social
service residential nursing homes and day care
centres, hospice units and private lymphoedema
practitioners. Named staff were contacted to ensure
completeness of data. In addition, the acute services
were visited, and all patients on wards assessed for
inclusion into the study, with each hospital assessed
over a two-week period using a trained research
team. Designated out-patient clinics were identified,
and patients attending these were screened for
inclusion. The specialist lymphoedema services at
St George’s and Royal Marsden Hospitals provided
additional data from their patients’ notes and
database systems. To avoid double cou nting, an
individual patient coding system was developed.
Each patient’s postcode was found to ensure that
all patients identified were living within the bound-
aries of the study area. The recording of postcodes
allowed for evaluation of patients attending
the two national centres who fell outside the
immediate catchment area. Three weeks after the
initial contact, the returned forms were che cked
to identify health professionals who had failed to
respond. A further contact was made either by
telephone or by a clinical visit to ensure complete-
ness of data. Patients were entered on to a dedicated
database. A further check was made to ensure
completeness of data, and professionals were re-
contacted to provide missing data.
Clinical interviews
Within this study, there was an opportunity to
interview patients who attended for care over a four-
week period. While this group of patients may not
truly reflect the population suffering from lymph-
oedema, the interviews allowed for a detailed
examination of some of the key issues in lymphoe-
dema management. This process also allowed us to
profile patients in terms of their clinical and psycho-
social status.
Questionnaire design
A questionnaire was developed by the research
group following a literature search of methods of
assessing lymphoedema outcomes and their validity
in clinical populations. The first section aimed to
clarify the presence of lymphoedema and consisted
of: demographic and socio-economics; details of
oedema and complicati ons; and clinical examina-
tion (clarification of proven lymphoedema and
volume measurement of affected limbs). After
physical examination, patients without lymph-
oedema did not progress further in the study. The
second section was completed for patients with
proven lymphoedema, and consisted of: medical
history; the McGill short form pain assessment
tool;
10
treatment history and use of health resources;
and the SF-36.
11
Lymphoedema specialists trained the clinical
research team in questionnaire administration and
in the clinical measurements.
The research team were able to interview all
patients who attended the acute services on the
wards and patients attending community services
over a four-week period with concurrent lymph-
oedema. Many patients identified in the specialist
lymphoedema out-patient services were not attend-
ing for treatment during the four-week period, and
were not interviewed.
Lymphoedema 733
Statistical analysis
Information from all questionnaire responses was
entered into a database system, and when complete,
downloaded to SPSS for analysis. Calculation of
age-specific rates used information on the catch-
ment population provided by the Trust. Compara-
tive analysis of the SF-36 was undertaken using
previously published normative data,
12,13
the
results being expressed as mean differences with
95% CIs.
Results
Case ascertainment
In all, 1609 patients were identified, of whom 1578
had oedema present for > 3 months, and of whom
823 (52%) were resident in the study area. Mean
(SD) age was 66.9 (16.5) years with 683 (83%)
women. The total crude estimated prevalence was
1.33/1000 population (Table 1). There was a clear
age gradient, with a prevalence of 5.4/1000 in those
aged > 65 years, and 10.3/1000 in those aged > 85
years. Ninety percent of men presented with leg
oedema, compared with only 51% of women.
Conversely, 48% of women suffered from arm
oedema compared with only 6% of men (Table 2).
The clinical services that were contacted and the
proportion of respondents are shown in Table 3.
Table 2 Oedema of arms and legs, by age and gender
Male Female Total
Arm oedema
< 5 0 (–) 0 (–) –
5–14 0 (–) 0/1 (0) 0
15–44 0/14 (0) 27/69 (39.1%) 27/83 (32.5%)
45–64 2/33 (6.1%) 165/249 (66.2%) 167/282 (59.2%)
65–74 3/38 (7.9%) 73/117 (62.4%) 76/155 (49.0%)
75–84 4/39 (10.3%) 44/141 (31.2%) 48/180 (26.7%)
85þ 0/16 (0) 16/106 (15.1%) 16/122 (13.1%)
Total 9/140 (6.4%) 325/683 (47.6%) 334/823 (40.6%)
Leg oedema
< 5 0 (–) 0 (–) –
5–14 0 (–) 1/1 (100%) 1/1 (100%)
15–44 13/14 (92.8%) 44/69 (63.8%) 57/83 (68.7%)
45–64 29/33 (87.9%) 76/249 (30.5%) 105/282 (37.2%)
65–74 35/38 (92.1%) 41/117 (35.0%) 76/155 (49.0%)
75–84 35/39 (89.7%) 98/141 (69.5%) 133/180 (73.9%)
85 þ 14/16 (87.5%) 90/106 (84.9%) 104/122 (85.2%)
Total 126/140 (90.0%) 350/683 (51.2%) 476/823 (57.8%)
Table 1 Ascertainment of patients with chronic oedema/
lymphoedema by age within South West London Trust
Age (years) n Population
Prevalence
(per 1000)
Total group
< 5 0 42 967 0
5–14 1 66 407 0.02
15–44 83 303 980 0.27
45–64 282 120 534 2.35
65–74 155 43 660 3.55
75–84 180 29 287 6.14
85 þ 122 11 822 10.31
Total 823 618 657 1.33
Women
< 5 0 21 110 0
5–14 1 32 290 0.03
15–44 69 150 645 0.46
45–64 249 61 522 4.05
65–74 117 24 609 4.75
75–84 141 18 701 7.53
85 þ 106 9037 11.73
Total 683 317 914 2.15
Men
< 5 0 21 857 0
5–14 0 34 117 0
15–44 14 153 335 0.09
45–64 33 59 012 0.56
65–74 38 19 051 1.99
75–84 39 10 586 3.68
85 þ 16 2785 5.75
Total 140 300 743 0.47
734 C.J. Moffatt et al.
Patient sources
Only 529/823 (64%) were receiving treatment for
their lymphoedema. Of the total 445/823 (54%)
patients were seen by specialist lymphoedema
practitioners. Sixty-one (12%) were receiving care
from community services alone. Patients were also
treated by a number of acute hospital departments,
including dermatology and vascular surgery depart-
ments (128, 24%).
Treatment provision
Skin care (88%) and elastic hosiery (82%) were the
most commonly used treatments. However, patients
treated by communi ty services would only have
access to hos iery avail able through the Drug
Tariff and not the specia list garments required for
lymphoedema care. Despite the value of exercise
in the control of lymphoe dema, only 53% patients
were using exercises in their management. Although
13% patients were receiving bandaging, this picture
is likely to be obscured by the numbers of patie nts
receiving below-knee bandaging designed for leg
ulcer treatment rather than lymphoedema banda-
ging regimens. Manual lymph drainage was rarely
used (4%), but self-massage was more frequent
(17%). Three percent of patients were receiving
psychological support. Diuretics were used in 8%
patients despite their lack of effect in the treatment
of lymphoedema.
Health professionals consider ed control of swel-
ling to be better in women compared with men
(62.5% vs. 44.3%) (Table 4). In the youngest age
group (< 45 years), only 11.9% were reported to
have uncontrolled oedema. This increased with age
to 59.0% in those aged > 85 years. Professionals
reported that patients with arm oedema experienced
better control than patients with leg oedema (85.0%
vs. 42.0%). Nearly 80% of patients who were being
actively treated for their lymphoedema had control,
compared with just 29.4% in those not being offered
treatment.
Clinical interviews
A total of 239 patients were interviewed, of whom
11 were found not to be suffering from lymph-
oedema on clinical examination, and were
excluded from the analysis. This would suggest that
prevalence may be overestimated during the case
ascertainment by the same proportion. The total
number of patient interviews was therefore 228.
Demographics and details of oedema
As with the case ascertainment, patients were
elderly with mean (SD) age of 71.4 (16.6) years;
170 (75%) were women. A high proportion (97,
44%) were widowed, with 114 (51%) living alone.
Over half were owner-occupiers (51%), with 73%
Table 3 Services contacted and respondents to case
ascertainment
Contacted
(% response)
Patients
identified
St George’s Hospital
Lymphoedema Service 2 (100%) 325 (39%)
Dermatology
Specialist Nurse
1 (100%) 45 (6%)
Leg ulcer service 3 (100%) 43 (5%)
Physiotherapy 1 (100%) 3
Occupational therapists 1 (100%) 1
Other hospital services
Royal Marsden Hospital 2 (100%) 125 (15%)
St Helier 1 (100%) 48 (6%)
Epsom 1 (100%) 5
Hospices 2 (100%) 0
Community services
District Nursing teams 50 (100%) 184 (22%)
GPs and practice nurses 50 (78%) 24 (3%)
Nelson Hospital 1 (100%) 4
Community podiatry 1 (100%) 3
Community
physiotherapy
1 (100%) 0
Macmillan nurses 3 (100%) 6
Nursing home – 2
Elderly surveillance 1 (100%) 1
Other/missing – 5
Table 4 Control of oedema, by gender, age, site and
treatment
Controlled Not controlled Don’t know
Gender
Female 427 (62.5%) 179 (26.2%) 77 (11.3%)
Male 62 (44.3%) 56 (40.0%) 22 (15.7%)
Age (years)
0–44 70 (83.3%) 10 (11.9%) 4 (4.8%)
45–64 199 (70.6%) 40 (14.2%) 43 (15.2%)
65–74 98 (63.2%) 37 (23.9%) 20 (12.9%)
75–84 81 (45.0%) 76 (42.2%) 23 (12.8%)
85 þ 41 (33.6%) 72 (59.0%) 9 (7.4%)
Site
Arm 284 (85.0%) 14 (4.2%) 36 (10.8%)
Leg 200 (42.0%) 221 (46.4%) 55 (11.6%)
Treatment
Treated 412 (77.9%) 59 (11.2%) 58 (11.0%)
Not treated 74 (29.4%) 169 (67.1%) 9 (3.6%)
Lymphoedema 735
retired. In all, 85% had an income < £15 000 per
year.
Of the patients interviewed, just 36 (16%) were
suffering from arm oedema compared with 189
(83%) with leg oedema. This compares with 334
(41%) and 476 (58%) in the ascertainment study.
The difference in patient groups was also seen for
gender with 75% women in this part of the study,
compared with 83% in the ascertainment. This
difference is probably a reflection of the difference
between those patients receiving care during the
interview period and the overall population of
patients suffering from lymphoedema within the
community. Nine patients (4%) had oedema of
another body part. In all, 169 (78%) had oedema
present for longer than one year, of whom 71 (33%)
had oedema for > 10 years.
Fifty-seven (25%) suffered from oedema related to
cancer therapy. Oedema following cancer treatment
occurred rapidly in many patients, with 15/48 (31%)
who could recall this experienced oedema within
3 months of treatment and a further seven (15%)
experienced it within 1 year. Only three patients
developed oedema > 10 years after their cancer
therapy. When directly questioned about their
diagnosis, 124 (54%) had never been told the
reason for their oedema.
Use of health-care resources
Few patients had undergone specialist investigations
to confirm a diagnosis of lymphoedema, with just 16
patients having undergone a lymphangiogram and
15 having lymphoscintigraphy. In all, 137 of 201
respondents (68%) stated that they had used
compression hosiery, although 24% had recei ved
it, but never worn it. Only 11/208 respondents (5%)
had ever received manual lymphatic drainage,
despite this being considered a cornerstone of
effective lymphoedema treatment.
1,2
Approximately
one third (81/203) of all patie nts were currently
receiving bandaging of the affected limb, although
the majority of these were elastic regimens used
in the treatment of venous leg ulceration, rather
than the recommended short-stretch multi-layer
lymphoedema bandaging. When bandaging was
undertaken, it was for prolonged periods, with a
median duration of 9 months.
Acute infections and medical admissions
In all, 64/218 (29%) of patients had experienced at
least one acute infection in the affected area over
the previous year, with 16 experiencing > 3
episodes during this time. Of those experiencing
acute infections, 17/64 (27%) were admitted for
intravenous antibiotics. Over the duration of their
oedema, 33 (15%) had experienced at least one
hospital admission for their oedema. The mean
length of stay was 12 days, with an estimated cost
of hospital stay of £2300.
14
Employment
Over 80% of patients (188/217) had taken time off
work due to their oedema, with an estimated mean
time off work of 10.5 days for medical appoint-
ments. Overall, 9% stated that the oedema affected
their emp loyment status, with 4/209 (2%) respon-
dents having to change jobs because of their
oedema, and 17/209 (8%) having to give up work
because of it.
Pain and quality of life
Despite the popular belief that lymphoedema is not
painful, one half of pa tients (50%) stated that they
experienced pain or discomfort from their oe dema,
with 56% of these taking regular prescribed
analgesia. Most common pain symptoms were
those of aching (36%), heaviness (33%) and
tenderness (29%). For those who reported pain,
the median score on the McGill visual analogue
scale (0–10) was 4.2 (IQR 2.8–6.5). While 28% of
these with pain reported it to occur most frequently
at night, 38% felt that it was changeable in nature.
Comparison of scores of the SF-36 in these
patients with published normative data showed
clear deficits in all sub-scores of the SF-36, with
the exception of mental health and general health
scores. The largest mean differences (d) occurred in
role physical (d ¼ 27.1, 95% CI 20.9–33.3), role
emotional (d ¼ 25.5, 95% CI 18.9–32.1), social
functioning (d ¼ 23.1, 95% CI 18.1–28.2) and phy-
sical functioning ( d ¼ 21.5, 95% CI 17.0–26.0).
All of these differences were significant at the
p < 0.001 level.
Discussion
This study shows that chronic oedema/lymph-
oedema is a common but under-reported condition,
with a prevalence similar to other conditions such as
leg ulceration. There are clear parallels to be drawn
from the two conditions. The identification of
the magnitude of the leg ulcer problem stimulated
the development of national service provision
for this patient group, through changes in policy
and the development of the NSF for elderly care.
15
With cancer-related lymphoedema, there are
recommendations for service provision within
the NSF for Cancer services, but little reference to
it in the Cancer Plan or Manual for Cancer
736 C.J. Moffatt et al.
Studies.
4,16,17
However, this study shows that care is
poorly provided for patients with non-cancer-related
lymphoedema. There is a clear need for
an integrated approach to care provision for this
patient group.
While chronic oedema/lymphoedema can occur
at any age, there was a clear increase in rate with
age. Over the age of 65, the prevalence was 1 : 200.
There was also a clear gender difference, with 83%
of all patients identified being women. The differ-
ence between men and women is not explained
purely by arm oedema related to breast cancer,
as the prevalence of leg oedema was more than
double in women compared to men.
Due to the difficulties in making a definite
diagnosis of lymphoedema, we chose to provide
health professionals with a clear working definition
of chronic oedema, which included its presence
for > 3 months. Of the 823 patients, only 29 (4%)
experienced resolution of their oedema during
bed rest or elevation, supporting the presence of
lymphoedema. In the clinical interviews, 78% of
patients had oedema present for > 1 year, and 34%
for > 10 years indicating that these patients have
chronic oedema rather than a transient problem.
The ascertainment of patients through health
professionals is limited, in that it may underestimate
the true prevalence of a condition, as patients
may not be receiving care for their condition.
However, we can use the prevalence of arm
lymphoedema as an indication of the under-report-
ing using this method. In the UK, it is estimated
that 160 000–200 000 patients have had a diagnosis
of breast cancer.
18
While there are a range of
prevalence figures for arm oedema in patients with
breast cancer,
5,19–21
we have assumed that approxi-
mately 29% will have arm oedema.
19
The results
from this study were chosen since it was carried
out within the same area of south-west London.
Using these figures, some 1696–2120 women in
south-west London should have a history of breast
cancer, of whom 490–615 wou ld have breast-
cancer-related lymphoedema (BCRL). In the present
study (using arm oedema as a proxy for BCRL)
we have identified 325 women with arm oedema.
It is therefore likely that we have underestimated
prevalence of arm oedema in this population by
between 33% and 47%. Whil e it is likely that a
slight over-estimation will occur due to incorrect
classification (4% in the present study), this effect
is small in comparison with the predicted under-
estimation of numbers. Also, patients with BCRL
are likely to be better provided for than other non-
cancer-related lymphoedema, so our estimates of
prevalence are likely to considerably underestimate
the problem.
A key finding of this project has been the impact
that lymphoedema has on many aspects of patients’
lives. One third had experienced an acute infection
over the previous year, with 14 patients having
more than three episodes, and 16 requiring admis-
sion for intravenous antibiotics. The combined
effects of these episodes are likely to have a major
impact on the patients’ quality of life, as well as
a clinical deterioration due to further lymphatic
damage. Whil e the acute complications associated
with lymphoedema will cause major disruptions
to daily life, there was clear evidence that even
in the chronic phase, patients experienced signifi-
cant deficits in quality of life, with particular
emphasis on their ability to function physically
and socially, and the emotional consequences of
their condition. Despite professional perceptions
that lymphoedema is not associated with pain, one
half of all patients stated that they were experiencing
pain or discomfort from their oedema. There was
clear evidence that the condition affected their
ability to work, forcing some to give up work
completely, or take periods a way from work for
treatment.
The study showed major deficits in care provision
for patients with lymphoedema, with only 64%
reported to be receiving any treatment, this despite
better provision of lymphoedema services within the
catchment area. Nearly one half of all patients
identified in this study seen in the specialist
lymphoedema centres came from outside the local
catchment area. This highlights the national prob-
lem that patients face of receiving care locally.
Patients in this study came from as far as Ireland,
Scotland and the Channel Islands. Set against the
background that patients in the community were
receiving sub-optimal care, these findings support
the need for improved service provision. Evidence
on reported treatment during the case ascertain-
ment, showed that the cornerstones of treatment
(bandaging and manual lymph drainage) were
infrequently used. The type of hosier y prescribed
was linked to the service provider, with community
patients unable to access specialized garments.
Inappropriate treatments such as diuretics were
considered treatment options, indicating a lack of
knowledge. Despite the obvious quality of life issues
raised in this study, practitioners reported only 3%
of patients received psychological support as a
treatment strategy.
This study aimed to define the problem of chronic
oedema/lymphoedema in the population. Rational-
ization of services will require a careful classifica-
tion of the different types of lymphoedema in order
to ensure that appropriate care is provided to all the
patient groups, ranging from those at genetic risk
Lymphoedema 737
of developing the condition, through to those with
severe complicated elephantiasis. The evidence
base on the management of lymphoedema is
currently weak and further work is required to
assess the best practice and cost effectiveness of
different management regimens.
Service development must seek to incorporate
the specialis t component of practice while introdu-
cing lymphoedema management into mainstream
service provision to avoid the current two-tiered
system for cancer and non-cancer patients. The
high prevalence of chronic oedema and the cost
implications, particularly from admissions for
infection cannot be ignored by health planners
in the future.
Acknowledgements
The work was undertaken with financial support
from Smith & Nephew. CJM and PJF also receive
financial support from Smith & Nephew for other
research undertaken within their unit.
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