Clinical review

Cerebral palsy: what parents and doctors want to know

Peter Rosenbaum

Cerebral palsy is a physical impairment that affects the development of movement. Impairment can
vary considerably and no two people with cerebral palsy are affected in exactly the same way. The
problems that children and adults with cerebral palsy face, including discrimination, are often similar

CanChild Centre Cerebral palsy is the most common physical disability

for Childhood
Disability Research,
in childhood. Children with cerebral palsy usually sur- Summary points
McMaster vive into adulthood, and the condition is often poorly
University, understood in adulthood. Recognising and managing
Hamilton, ON, Cerebral palsies are neurodevelopmental
Canada L8S 1C7 cerebral palsys many important comorbidities is as
conditions, are the commonest physical
Peter Rosenbaum important as treating the motor disabilities. Recent
disabilities in childhood, and severely affect a
professor of advances in the understanding of cerebral palsy
paediatrics childs development
include new ways of thinking about disability; recogni-
rosenbau@ tion of causal pathways; and improvements in
mcmaster.ca Comorbidities include epilepsy, learning
measurement, classification, and prognostication. difficulties, behavioural challenges, and sensory
BMJ 2003;326:9704
Challenges include ensuring the wellbeing of families impairments and are at least as important as the
as well as children; tackling the issues faced lifelong by motor disabilities
people with cerebral palsy; and the continuing need
for primary, secondary, and tertiary prevention of the Advances in research are increasing our
effects of cerebral palsy on peoples lives. understanding of causal pathways, opportunities
for primary prevention, and the value of specific
What is cerebral palsy? intervention strategies
Cerebral palsy is an umbrella term covering a group
of non-progressive, but often changing, motor impair- Cerebral palsy cannot be cured, but a host of
ment syndromes secondary to lesions or anomalies of interventions can improve functional abilities,
the brain arising in the early stages of development.1 A participation, and quality of life
total of 2-2.5 of every 1000 live born children in the
These conditions need to be recognised as
Western world have the condition2; incidence is higher
involving the whole family, and management
in premature infants and in twin births.3 4 Some causal
should always occur in the context of family
pathways have been described, which make it possible
needs, values, and abilities
to prevent, for example, athetoid cerebral palsy due to
kernicterus associated with Rh isoimmunisation, and
The needs of adults with cerebral palsy, who
potentially to eliminate cerebral palsy associated with
currently are underemployed and face major
maternal iodine deficiency.2 5 The common perception
barriers in the community, must now be tackled
that perinatal asphyxia is an important cause of
cerebral palsy almost certainly overstates the case6;
occult infection or inflammation is increasing impli-
when children fail to reach their motor milestones and
cated.7 Often a cause cannot be found in the history of
when they show qualitative differences in motor
children with clear clinical evidence of cerebral palsy.
development, such as asymmetric gross motor function
Many efforts are under way in the basic and clinical
or unusual muscle stiffness or floppiness. Cerebral palsy
sciences to describe the cascades of pathophysiological
is usually characterised clinically by the parts of the body
events that cause neurological damage, particularly in
affected (box 1), although conventional terminology
compromised premature infants.8 As the mechanisms
used to describe cerebral palsy is less precise or reliable
of injury to the developing central nervous system are
than the terms imply. Descriptions of the predominant
better understood, neuroprotective agents are likely to
motor disorder refer to spastic, dystonic, athetotic, and
play an increasing role in continuing efforts at primary
ataxic features (box 2).9 Functional status can be catego-
prevention of cerebral palsy.
rised (with respect to gross motor activity) by using the
five levels of the gross motor function classification sys-
Clinical presentation tem for cerebral palsy (box 3),10 a reliable and valid
Cerebral palsy, except in its mildest forms, can be seen in system with prognostic importance now available on the
the first 12 to 18 months of life. The condition presents CanChild web page (box 4).11 12

970 BMJ VOLUME 326 3 MAY 2003 bmj.com


Box 1: Topography of cerebral palsy
Hemiparesis (hemiplegia)(predominantly)
unilateral impairment of arm and leg on the same side
Diplegiamotor impairment primarily of the legs
(usually with some relatively limited involvement of
arms)
Triplegiathree limb involvement
Quadriplegia (tetraplegia)all four limbs, in fact the
whole body, are functionally compromised
Developmental implications
Cerebral palsy is in many ways the prototype for devel-
opmental disabilities. By definition the problems stem
from one of many impairments of the developing cen-
tral nervous system.2 Cerebral palsy affects gross motor
function to a varying extent. A childs resulting overall
development, specifically in mobility and other aspects
of development and learning, is compromised by rela-
tive deprivation of experience. Delayed or aberrant
motor function affects the development of a childs
capacity to explore actively and to learn about space,
effort, independence, and the social consequences of
moving, touching, and getting into mischief. Limits to a
childs functioning can cause parents to perceive their
child as damaged, impaired, or disabled (and therefore
limited); parents may interact with their child
differently than if the child had better function.
People with cerebral palsy are considerably more
likely to have functional difficulties unrelated to move-
ment but related to their central nervous system
(including sensory, epileptic, learning, behavioural, and
related developmental impairments).13 These impair-
ments may begin early in life as difficulties in feeding,
irritability, and disordered sleep patterns. These
problems, when present, affect day to day life and can
cause considerable distress to children, parents, and
carers. These problems are not inevitable or intracta-
ble, but it is essential to ask about, identify, and
intervene before problems become entrenched.
Children with chronic functional limitations have
considerably more difficulties in the social and behav-
ioural aspects of their lives than typical children.14
Intellectual and behavioural problems in children with
hemiplegic cerebral palsy reported by teachers in
WILL AND DENI McINTYRE/SPL
BMJ VOLUME 326 3 MAY 2003 bmj.com
Clinical review
mainstream schools indicate that such children are at
high risk of rejection by peers, lack of friends, and vic-
timisation.15 It is essential to recognise the coexistence
of physical functional and neurobehavioural disabilit-
ies in children with cerebral palsy and to provide inte-
grated services to tackle these manifestations.16
Parents first questions about
cerebral palsy
From the outset parents want to know how bad the
cerebral palsy is and whether their child will walk. These
questions can be difficult to answer, particularly for
healthcare professionals with limited experience of chil-
dren with the condition. The literature on truth
disclosure and communication with patients and
families calls unequivocally for honesty, openness, com-
munication with both parents together, and sensitivity to
the individual needs of each family.17 A reliable and vali-
dated functional classification system for cerebral palsy9
that carries prognostic information has made it possible
to provide evidence based answers to inform both
parents and service providers (fig 1).12 In future this
Box 2: European classification of (motor impairment in)
cerebral palsy9
Spastic cerebral palsy is characterised by at least two of
Abnormal movement pattern of posture or movement
Increased tone (not necessarily constant)
Pathological reflexes (increased reflexes, hyperreflexia, or pyramidal
signsfor example, Babinski response)
Spastic bilateral cerebral palsy is diagnosed if
Limbs on both sides of the body are involved
Spastic unilateral cerebral palsy is diagnosed if
Limbs on one side of the body are involved
Ataxic cerebral palsy is characterised by both
Abnormal pattern of posture and/or movement
Loss of orderly muscular coordination so that movements are performed
with abnormal force, rhythm, and accuracy
Dyskinetic cerebral palsy is dominated by both
Abnormal pattern of posture or movement
Involuntary, uncontrolled, recurring, and occasionally stereotyped
movements
Dystonic cerebral palsy is dominated by both
Hypokinesia (reduced activitystiff movement)
Hypertonia (tone usually increased)
Choreoathetotic cerebral palsy is dominated by both
Hyperkinesia (increased activitystormy movement)
Hypotonia (tone usually decreased)
Box 3: Severity of cerebral palsy: gross motor function
classification system (for children between 6 and 12 years)10
Level IWalks without restrictions; limitations in more advanced gross
motor skills
Level IIWalks without devices; limitations in walking outdoors and in the
community
Level IIIWalks with mobility devices; limitations in walking outdoors and
in the community
Level IVSelf mobility with limitations; children are transported or use
power mobility outdoors and in the community
Level VSelf mobility is severely limited even with the use of supporting
technology
971
Clinical review
Gross motor function measure (GMFM-66)
100
90
D illusory goal) toward the achievement of functional
80
70
60 C
50
40
B
30
20 A
10
0 similar argument can be made for the early
0 1 2 3 4 5 6 7
Fig 1 Predicted average development of gross motor ability for each
category of the gross motor function classification system (level I to
level V). Dashed lines show the age in years at which children are
expected to achieve 90% of their potential for motor development. A
to D on the vertical axis identify four gross motor items, located
where children are expected to have a 50% chance of successfully
completing that item. A=therapist holds child sitting upright, child
lifts head for 3 seconds; B=child maintains sitting, arms free, for 3
seconds; C=child walks forward 10 steps; D=child walks down 4
steps, alternating feet12
information may also be used to develop intervention
programmes appropriate to a childs age and stage.
Modern goals: treatment and
management
Cerebral palsy cannot be cured. The World Health
Organizations model of health and disease focuses on
function and is an important framework to guide
modern thinking about treatment for children with cer-
ebral palsy (fig 2).18 The goals of management should be
to use appropriate combinations of interventions
(including developmental, physical, medical, surgical,
chemical, and technical modalities) to promote function,
to prevent secondary impairments and, above all, to
increase a childs developmental capabilities.
Many of the conventional approaches used in
developmental treatment more or less target the
primary impairments that underlie the functional
challenges faced by children with cerebral palsy. With
increased emphasis on promoting function, two
Health condition
Body structure
and functions
Activity
Environmental factors
Fig 2 World Health Organization model of the international
classification of functioning, disability, and health
972
important issues should be considered. Firstly, there is
a need to move beyond efforts to promote normal
Level 1 function in children with cerebral palsy (often an
abilities that facilitate independence. Secondly, the lib-
Level 2
eral use of adaptive equipmentfor example, powered
mobility or walkersmay support early development
of capacities such as independent ability to move about
Level 3 with the important effect of improving overall
development.
Level 4 The common concern that making things too easy
for children will inhibit normal function is unfounded;
there is strong evidence that, for example, the
Level 5 provision of powered mobility to children with
disabilities as young as 36 months can have pervasive
impacts on social, language, and play skills as well as
increase efforts to try independent movement.19 A
8 9 10 11 12 13 14 15
introduction of augmentative communication systems
Age (years) for children with communicative difficultiesfor
example, sign language, and picture boardswhich
make communication possible and often help to
promote the development of oral language. Parents
are often initially reluctant to accept augmentative
interventions, preferring to work toward normal func-
tion. Introducing new parents to others who have
chosen to provide devices to their children can be
helpful to let the experienced parents discuss how they
made the decisions about the use of equipment and
sharing their perceptions about the value (or not) of
this special equipment.
The role of the family and how doctors
can help
Modern services for child health are increasingly being
offered within a framework that espouses family
centred service.20 Parents and providers work together
in a partnership quite different from the traditional
management of a childs rehabilitation programme
directed by a doctor. These new relationships are
predicated on mutual respect, empowered parents, and
appropriate sharing of information with which
decisions can be made. Parents experiences of family
centred service and their satisfaction with services, as
well as the stress they experience in their dealings with
their childs treatment centre, are strongly correlated.21
There is also a measurable link between family centred
service and parents mental health.22
Parental values and goals can form an important
component of the management programme that is
created for a child. Goal setting should be a joint ven-
ture between parents (and older children) and health-
care providers. This approach has recently been shown
to lead to more effective outcomes and to be more effi-
cient in terms of the amount of intervention by profes-
sionals.23 From a developmental perspective this
Participation finding makes senseparents and especially children
are more likely to follow through with recommenda-
tions for treatment that tackle their goals and needs.
(Some parents may wish professionals to make
decisions for them; an active choice by parents to be
Personal factors advised what to do is still a family centred approach to
delivering services.)
Cerebral palsy is a long term condition; parents
(and people with cerebral palsy) will have questions
BMJ VOLUME 326 3 MAY 2003 bmj.com

and issues to resolve throughout their lives. Continuity
in the relationship between parents and trusted coun-
sellors is important; professionals such as family
doctors and therapists are people who will listen,
support, advocate, and be there when challenges arise.
Challenges are especially likely at times of transition in
the life of the child and family, such as at the time of
diagnosis, starting primary or secondary school,
leaving school, and when entry to the broader commu-
nity is being considered. Continuous and consistent
service is valued by parents.24
New developments in treatment
The array of biomedical and surgical innovations for
the treatment of cerebral palsy is ever expanding,
much of it aimed at the reduction of what can at times
be disabling spasticity. These include the use of botuli-
num toxin for temporary relief of spasticity,25 selective
dorsal rhizotomy for more permanent relief,26 and
intrathecal baclofen as a titratable antispasticity agent.27
Recent work to promote strength training for people
with cerebral palsy may provide important new
avenues to improve function.28
At the same time as innovative treatments are being
developed, complementary treatments have emerged.29
These approaches range from apparently sensible but
untested methods of teaching, training, or treating chil-
dren (such as conductive education based on edu-
cational principles, which is as effective as, but not better
than, conventional approaches),30 to interventions based
on anecdotal evidence and testimonials but usually no
credible research. New treatments are greeted with an
expectation of impact that rarely happens. One such
innovation which has attracted a lot of attention in the
past few years is the use of hyperbaric oxygen, an
approach that has been clearly shown in a well designed
randomised clinical trial to provide no benefit.31 Other
essentially untested ideas include subthreshold electrical
stimulation of muscles, intensive passive muscle
manipulation (patterning), and the use of an astronaut
suit to promote independent mobility. In each case the
claims about the effectiveness of the treatments are
unsupported by solid clinical trial based research.32
Doctors are often called on to advise about
treatment approaches with which they are unfamiliar.
Specialty organisations such as Scope in the United
Kingdom and UCPA in the United States, and research
groups such CanChild in Canada have well developed
websites (box 4). These websites may provide infor-
mation on topics that are not available in published
literature about complementary treatment (because so
little research on these modalities has been undertaken).
The future for research
Considerable research efforts are under way toward
the primary prevention of brain injury in infants at
high risk who are exposed to perinatal abuse.
Although most of this work is still at the development
stage, clinical trials will soon be under way to evaluate a
host of strategies.
An important and growing concern is the unmet
needs of young adults with cerebral palsy. Community
services for adults are often ill prepared to understand,
let alone to meet, the needs of todays young people
BMJ VOLUME 326 3 MAY 2003 bmj.com
Clinical review
Box 4: Website resources for parents and doctors
CanChild Centre for Childhood Disability Research (www.fhs.mcmaster.ca/
canchild)Many downloadable resources for service providers and parents
on its website and links to several other related websites
United Cerebral Palsy Association (www.ucpa.org/ucp_general.cfm/1/4)
Links to their Research and Educational Foundation on its website, where
more than 100 fact sheets are posted on topics of interest to parents and
service providers
Scope (www.scope.org.uk)A UK based organisation concerned with the
needs of people with cerebral palsy
Mac Keith Press (distributed by Cambridge University Press)
(http://publishing.cambridge.org/stm/medicine/mackeith)Publishes
Developmental Medicine and Child Neurology, the most highly cited
developmental journal in the world, and Clinics in Developmental Medicine, an
ongoing series of more than 160 books on a wide variety of topics pertinent
to developmental disabilities of childhood
American Academy for Cerebral Palsy and Developmental Medicine
(www.aacpdm.org)The pre-eminent multiprofessional childhood disability
organisation in the world. Their website links to resources for parents as
well as professionals. The academys annual meeting draws several hundred
professionals from around the world to attend symposiums and
instructional courses and give papers on topics concerned with cerebral
palsy and related developmental issues
European Academy of Childhood Disability (www.eacd-org.org)Presents
an annual conference tackling issues in childhood disability offering
symposiums and workshops of interest to professionals
with disabilities, who have generally grown up at home
and in the community and have been more integrated
than children with cerebral palsy in any previous
generation.33 The challenge to be addressed by service
providers, educators, prospective employers, policy
makers, and others is to begin to anticipate and plan
appropriately for the full incorporation of adults with
cerebral palsy into the life of their community, a goal
fully consistent with the World Health Organizations
focus on participation. This challenge is one that must
be addressed by the whole community, and should
involve the imagination and political will of profession-
als and families from all areas of society. To do less would
be to marginalise young people with cerebral palsy and
to squander the developmental and functional gains
they have made in their developing years.
I thank Doreen Bartlett, Robert Palisano, Richard Stevenson,
and Martin Bax. I also thank colleagues at CanChild Centre for
Childhood Disability Research.
Contributors: PR reviewed contemporary information and con-
cepts about cerebral palsy drawn from his clinical and research
experience and the current literature.
Competing interests: None declared.
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(Accepted 6 March 2003)

Interactive case report

A 42 year old man with acute chest pain: case progression
G Sodeck, B Partik, H Domanovits

Department of Last week we presented the case of Peter Hartl, a heavy

Emergency
Medicine, Vienna
smoker with a history of hypertension, who went to his Questions
General Hospital, local emergency department complaining of severe
Whringer Grtel chest pain. His electrocardiograph suggested myocar- 1 What would you do next and why?
18-20, A-1093
Vienna, Austria dial ischaemia. We invited responses on bmj.com about
G Sodeck the differential diagnosis, further investigations, and 2 What issues does this case raise for cardiovascular
registrar how to respond to his wifes concern. To look at the risk management in primary care?
H Domanovits rapid responses and discussion of the case so far go to
consultant Please respond through bmj.com
bmj.com (BMJ 2003;326:920)
Department of Because he had severe symptoms and inconclusive
Radiology, Vienna
General Hospital electrocardiographic findings, he had transthoracic left ventricular function was normal, and there was no
B Partik echocardiographic ultrasonography to confirm acute pericardial effusion. As there were no echocardio-
consultant myocardial ischaemia. Motion of the ventricular wall graphic signs of cardiac ischaemia, he was not given
Correspondence to: was normal, but he had mild aortic valve insufficiency systemic thrombolytic drugs.
H Domanovits and severe left ventricular concentric hypertrophy
hans.domanovits@ Results from the blood tests taken on admission
akh-wien.ac.at (interventricular septal thickness 14 mm). His global (including creatine kinase, creatine kinase MB isoen-
zyme, and troponin T as serum markers of acute myo-
BMJ 2003;326:974
cardial ischaemia) were within the normal range. Liver
and renal function tests also gave normal results. He
had high concentrations of C reactive protein
(171 mg/l, normal < 10 mg/l), fibrinogen (6.24 g/l,
normal <3.9 g/l), and D dimer (5.31 mg/l, normal
This is part 2 of a 3 <0.5 mg/l). His full blood count was normal except for
part case report
where we invite a raised white blood cell count (15.1109/l, normal
readers to take part <10109/l).
in considering the
diagnosis and
Chest radiography showed right sided posterobasal
management of a shadowing, which was reported as being indicative of
case using the rapid pulmonary embolism or the start of pneumonia.
response feature on
bmj.com. In three Non-significant enlargement of the heart and of the
weeks time we will aortic arch was also noted. There were no signs of car-
report the outcome diac decompensation (figure).
and summarise the Chest radiograph showing posterobasal shadowing and enlargement
responses of the heart and aortic root Competing interests: None declared.

974 BMJ VOLUME 326 3 MAY 2003 bmj.com