SYMPOSIUM: CEREBRAL PALSY
followed up after attending paediatric clinics when younger e
Outcomes for people with
cerebral palsy: life
expectancy and quality of life
Allan Colver
Abstract
Cerebral palsy has tended to be regarded as a paediatric condition,
whereas it clearly is a lifelong one. The over-emphasis on childhood
has meant that the implications of therapeutic, environmental and family
support have not been provided or evaluated in terms of their implica-
tions for adult life; nor has study of the natural history of cerebral
palsy in adulthood received the attention it deserves; and nor have the
outcomes of social participation and subjective wellbeing been properly
considered in adulthood.
In this review, outcomes in adulthood of life expectancy, subjective
wellbeing, participation, mental health, physical health including pain,
and impact on family are presented. On all these domains, adults with
cerebral palsy have poorer outcomes than in the general population. It
is argued that this may be due in part to misplaced interventions in
childhood.
Keywords adults; cerebral palsy; children; outcomes
The outcomes that people with cerebral palsy (CP) seek are the
same as those that all people seek. There is debate about which
are the most important outcomes that should be considered.
I have discussed choice of outcomes in previous articles (see
recommended reading); in this article I will present data on the
outcomes life expectancy, subjective wellbeing, participation,
mental health, physical health including pain, and impact on
family.
Although it is self evident that cerebral palsy is a lifelong
condition, much research has regarded it as a paediatric condi-
tion, and investigated epidemiology, aetiology and therapeutic
interventions. The realizations that cerebral palsy should be
considered across the lifecourse, that outcomes in adulthood may
not be good and that services for adults may be poorly co-
ordinated or absent, has begun to influence how interventions
in childhood should be planned and directed.
Many paediatric studies have been able to sample children
from population based registers of children with cerebral palsy.
This makes them epidemiologically sound and all the studies
I mention about children will be from such studies. This is not
the case for adult studies where a convenience sample is usually
studied, such as those attending a clinic, or those who could be
Allan Colver MA MD FRCPCH is Donald Court Professor of Community Child
Health at the Institute of Health and Society, Newcastle University,
Sir James Spence Building, Royal Victoria Infirmary, Newcastle, UK.
Conflict of interest: none.
PAEDIATRICS AND CHILD HEALTH 22:9
such studies therefore need to be interpreted with caution.
Life expectancy
Studies from California, UK, Australia and Scandinavia all show
that life expectancy in people with cerebral palsy is broadly
similar to that in the general population, provided there are not
also severe learning difficulty and/or swallowing, nutritional and
scoliosis problems. If such additional problems are present, then
life expectancy is reduced. Children with Gross Motor Function
level V or gastrostomy have a nine fold increased risk of dying.
A Swedish study suggests there are geographical variations in
mortality; however a larger UK study showed that geographical
variation was eliminated when socio-economic factors were
controlled for. Comparisons between studies are difficult because
they depend on the age at which the total population of children
with cerebral palsy is deemed to have been reliably ascertained.
Cerebral palsy may not be easy to diagnose in the first few
months of life, yet this is when many babies very ill from birth
will die. So studies should examine the life expectancy of all
children with cerebral palsy alive at say age 2 years or 5 years. Of
children in the UK, alive at age 2 years, with cerebral palsy, IQ
less than 50 and non-ambulant, 86% lived to age 10, 60% to age
20, 53% to age 30 and 46% to age 40.
A report by the UK association for people with intellectual
impairment (MENCAP), and a subsequent government report,
found evidence that in adults with severe intellectual impair-
ment, features of severe physical illness may be not be noticed e
this being a particular problem in those with additional
severe CP.
Quality of life
Studies of Quality of Life (QoL) differ according to whether the
concept measured addresses Health-related quality of life
(HRQoL), which focuses mainly on health-related functioning
and perceptions, or Global QoL which refers to perceived satis-
faction with functioning and life. Two widely used instruments
for adults are the SF-36 measuring HRQoL and the WHOQOL-
BREF addressing global QoL.
In a Norwegian sample of 406 adults with CP, HRQoL was
assessed with the SF-36, and compared to a Norwegian reference
group. Table 1 shows the results as mean sum scores, 100 being
the best health score. The health-related problems are significant
in adults with CP compared to the general population, and have
a negative impact on physical and social function. Adults with CP
had significantly lower mean scores across all domains except
vitality. The largest differences were in the domains of physical
and social function. Multivariate regression analyses showed that
the factors significantly associated with low HRQoL were chronic
pain, chronic fatigue, deterioration of function, living alone and
unemployment.
Adults with CP tend to present higher levels of depressive and
stress symptoms when compared to the general population. In
addition, satisfaction with sexuality is significantly lowered and
this was associated with depressive symptoms.
Global QoL is, in my view, better called subjective wellbeing.
In children and teenagers with cerebral palsy who can self report
subjective wellbeing is similar to that in the general population;
384 Ó 2012 Elsevier Ltd. All rights reserved.
 SYMPOSIUM: CEREBRAL PALSY

Health-related quality of life (assessed with the SF-36) of adults with CP compared with a reference group
Domains Reference n [ 2323 Adults with CP n [ 406 p value
Mean (SD) Mean (SD)

Physical function 88.4 (17.4) 52.8 (35.5) <0.001

Physical role function 79.7 (34.4) 63.2 (40.3) <0.001
Bodily pain 75.7 (25.6) 63.6 (28.4) <0.001
General health 77.4 (21.8) 51.8 (12.2) <0.001
Vitality 60.3 (20.7) 59.3 (13.0)
Social function 86.1 (21.8) 49.3 (12.2) <0.001
Emotional role function 82.5 (31.8) 74.2 (36.9) <0.001
Mental health 78.8 (16.4) 67.7 (10.0) <0.05

Table 1

but this does not mean all children with cerebral palsy are happy; with a developmental quotient (DQ) of less than 50 or inability to
rather it means children with cerebral palsy have the same range walk at age 5 years, the odds ratios for not being competitively
and distribution of QoL as other children of their age. Pain is an employed were 2.0 for those with diplegia versus hemiplegia, 22
important determinant of subjective wellbeing; this is well for DQ 50e85 versus more than 85, and 3.7 for those with and
known but we have needed to be reminded of it in people with without epilepsy. The severity of motor impairment among
cerebral palsy e and it has been appreciated that both children participants with CP able to walk had only a minor influence.
and adults with CP experience much more pain than had been Half the participants with CP who had attended mainstream
previously thought. schooling were employed.
A Portuguese study of 37 adults from both institutional and There was no sign of increased social integration over the past
community settings looked at subjective wellbeing in those with three decades in Denmark. 68% of adults with CP percent lived
different types of CP. Most were male, less than 45 years old, and independently, 13% lived with their parents, and 16% lived at
all were single. A control sample was selected with similar socio- a county institution. 28% were cohabiting and 19% had children.
demographic characteristics. Subjective wellbeing was assessed The presence of epilepsy and the severity of physical or cognitive
using the WHOQOL-BREF. Table 2 shows that adults with CP had impairment as assessed in childhood predicted independent
significantly lower values in all domains, including the Global living; physical and cognitive impairment predicted cohabitation,
wellbeing. but parents’ socio-economic position and region of living did not.
55% of the participants, compared with 4% of the comparison
Participation group, had no competitive employment, cohabiting partner, or
Studies from Europe, Canada and Australasia show that children biological children. The remaining participants had at least one
with CP have reduced participation, which is still further reduced of these types of social contact, but this more socially integrated
in those with more severe motor impairment and more associ- half of the participants only combined all three types of social
ated impairments. contact half as often as the comparison group. This Danish study
Important Danish studies have examined participation in shows that much participation is possible at a given level of
adulthood. Denmark was able to link national data sets on health severity because of the significant variation that existed across
and social indices in order to compare adults with cerebral palsy Denmark. In children there are even more striking variations
with a matched control group. Excluding participants with CP between countries but such studies have not yet been undertaken
with adults.
Dutch studies of young adults (16e20 years) with CP and
without significant learning difficulties show 50% were restricted
Global quality of life (assessed with the WHOQOL- in their daily activities and participation in social roles. They
BREF) of adults with CP compared with matched encountered most difficulty in employment, leisure activities,
controls mobility outdoors and preparing meals. These young adults also
Domains Controls Adults with CP p value had less experience of intimate relationships (73%) and sexual
Mean (SD) Mean (SD) relationships (22%) compared with able-bodied Dutch people of
the same age with 84% and 66% respectively.
Physical health 80.9 (11.6) 68.2 (14.3) <0.001 In a rehabilitation-based sample of 406 Norwegian adults with
Psychological 71.4 (14.9) 63.4 (16.5) <0.001 CP aged 18e72 years, only 33% had part-time or fulltime paid
Social relationships 70.5 (16.3) 59.5 (20.5) <0.001 work, even when their educational level was high. About 25% had
Environment 65.6 (12.6) 58.7 (14.2) <0.001 education from college or university, or were still studying. Nearly
Global QoL 74.7 (11.2) 58.5 (15.9) <0.001 all respondents (85%) lived in an ordinary house or flat, 45% were
living alone. 24% were married or cohabiting, 22% had children
Table 2 and 7% had the triad of paid work, partner, and children.

PAEDIATRICS AND CHILD HEALTH 22:9 385 Ó 2012 Elsevier Ltd. All rights reserved.
 SYMPOSIUM: CEREBRAL PALSY
Mental health
Children with cerebral palsy have an increased rate of psycho-
logical difficulties compared to children in the general pop-
ulation e children with hemiplegia being especially prone to
such difficulties, perhaps because of the closeness of their func-
tion to that of their peers, with associated frustration and perhaps
embarrassment or risk of being teased. Studies of the mental
health of adults with cerebral palsy find increased rates of
depression compared to the general population. Emergency
hospital admission of people with cerebral palsy is commoner
than in the general population and, perhaps surprisingly, a recent
Canadian study found in people with cerebral palsy that admis-
sion for mental illness was the third commonest cause of
admission, after epilepsy and pneumonia.
Physical health and unmet needs
Two Dutch studies of young adults with CP aged 18e22 years
and 25e36 years provided information on the presence of health
problems, impairments and unmet needs of these groups. In the
group aged 18e22 years, 50% had not visited a rehabilitation
team in the past year, and 15% were still attending a paediatric
team; 30% were attending an adult rehabilitation team.
Remarkably, 50 percent identified a need for information on
cerebral palsy and the consequences of their condition for
adulthood. Those young adults with CP over 25 years of age
frequently had pain (59%), joint deformities (59%), visual
problems (22%) and speech and swallowing impairments
(20%). In addition, fatigue was common.
Pain
27% of the adults with CP have chronic pain, compared with 15%
in the general population. However, pain appears not to increase
with age, which is different from the general population. The most
frequent site was back pain, both in adults with CP and in the
general population. Pain in different body parts was associated
with body parts exposed to special strain in the different types of
CP; for example, there was a high prevalence of neck and shoulder
pain in persons with dyskinetic CP. More pain was significantly
associated with being female, having high fatigue score, low life
satisfaction and low and deteriorating physical function. Pain was
associated with both overuse and inactivity.
Whilst data on pain in adults with CP have been available for
some time, only recently (now that studies ask children about
their pain) has it been realized that pain is also a significant
feature of the lives of children with cerebral palsy and the pain
affects adversely their participation and subjective wellbeing.
Once again a life course understanding of cerebral palsy is
crucial, so that children do not come to view pain as normal, and
indeed be conditioned to enhanced sensitivity to pain which may
then persist into adulthood.
Physical fitness and fatigue
Fatigue is usually taken to mean a subjective feeling of tiredness,
with reduced energy level, muscle strength, and cognitive
capacity, such as concentration. It is common in the general
population, and thus reference-based interpretation is essential.
In a Norwegian study, adults with CP reported significantly more
physical but not mental fatigue than the general population. The
PAEDIATRICS AND CHILD HEALTH 22:9
strongest predictors of fatigue were bodily pain, deterioration of
locomotor skills, limitations in emotional and physical role
function and low life satisfaction.
Locomotor skills
In 406 Norwegian adults with CP 53% walked without support,
25% walked with support, 10% had lost their walking skills, and
12% had never been able to walk. 27% reported improvement of
walking skills, mainly before age 25 years, 28% reported no
change, and 44% reported deterioration, mainly before 35 years
of age. Deterioration was significantly associated with age, low
scores on physical function, pain, fatigue and lack of adapted
physical activity. These results suggest that nearly half the adults
with CP experience deterioration of walking ability in early
adulthood. However, this ‘deterioration’ will sometimes be due
to the decision some adults with CP make to use a wheelchair at
times to save energy for other goals.
In general, functional skills in all people deteriorate with age.
However, skills that are actively and regularly used are devel-
oped and preserved even in older adults. Brain lesions such as CP
that cause perceptual problems and lack of motor control will
affect the preservation of functional skills and create vicious
circles of no use, disuse or overuse of different systems of the
body. Secondary impairments such as contractures of muscles
and deformities of joints and bones may develop due to spasticity
and immobilization, and make it difficult to develop and preserve
functional skills. “Physiological burn-out”, caused by continuous
high energy consumption, has been postulated as a cause of early
deterioration.
Impact on parental stress and family life
Parents of children and young people with CP experience
considerably more stress than parents in the general population e
for instance 26% reach the score for ‘very high parenting stress’
on the Parenting Stress Index e the threshold for being likely to
benefit from formal psychological help. This is five times
commoner than in parents in the general population. Having
a child with cerebral palsy doubles the risk of maternal depres-
sion. I found little literature on the impact on carers of living with
an adult with CP.
What should be done to improve outcomes?
Most interventions in childhood over the last 50 years have been
directed to improving physical function, but they have been
remarkably unsuccessful. There has been an implicit assumption
that childhood interventions worked and that, even if they reduced
participation or quality of life in childhood (for instance by taking
children out of schooling or causing pain), they were justifiable if it
was believed they led to better adult outcomes. We now realize the
adult outcomes are not good and there is a need now, within
a lifecourse framework, to develop interventions that prepare the
person for adult life. So, as in all children, there is the need in
childhood to ensure high subjective wellbeing, participation in life
and in particular in its social domains and to foster self determi-
nation and decision making, rather than allowing or requiring
children to be passive recipients of therapy, care and sometimes
pity. Further the somewhat self-congratulatory view that paedi-
atric services are multi-disciplinary, comprehensive and caring
386 Ó 2012 Elsevier Ltd. All rights reserved.
 SYMPOSIUM: CEREBRAL PALSY
can all too easily become paternalistic as children enter adoles-
cence; such paternalism fails to prepare young people for the adult
world where people have to seek the services they need and
become the main instigators of co-ordination. Moreover, being
adult allows the person to balance choices between therapy,
education, pain relief, employment to suit them; children usually
have much less control of such choices but as they enter adoles-
cence, such independence should be encouraged, rather than
maintaining a protective attitude determined by the views of
parents and clinicians. A Practice points
FURTHER READING
Colver A. What are we trying to do for disabled children? Curr Paediatrics
2006; 16: 501e5.
Dickinson HO, Parkinson KN, Ravens-Sieberer U, et al. Self-reported
quality of life of 8-12-year-old children with cerebral palsy: a cross-
sectional European study. Lancet 2007; 369: 2171e8.
Michelsen SI, Uldall P, Hansen T, Madsen M. Social integration of adults
with cerebral palsy. Dev Med Child Neurol 2006; 48: 643e9.
Michelsen SI, Uldall P, Kejs AM, Madsen M. Education and employment
prospects in cerebral palsy. Dev Med Child Neurol 2005; 47: 511e7.
PAEDIATRICS AND CHILD HEALTH 22:9
Roebroeck ME, Jahnsen R, Carona C, Kent RM, Chamberlain MA. Adult
outcomes and lifespan issues for people with childhood-onset phys-
ical disability. Dev Med Child Neurol 2009; 51: 670e8.
Vargus-Adams JN, Martin LK. Domains of importance for parents, medical
professionals and youth with cerebral palsy considering treatment
outcomes. Child Care Health Dev 2011; 37: 276e81.
C Although manifesting itself in infancy, cerebral palsy is a life-
long condition
C The outcomes in adulthood of life expectancy, subjective
wellbeing, participation, mental health, and physical health
including pain are poorer than in the general population
C Most interventions in cerebral palsy are not evaluated against
such outcomes
C The implications of therapeutic, environmental and family
support in childhood need to be considered in a life course
framework
387 Ó 2012 Elsevier Ltd. All rights reserved.