Follow-up of individuals with cerebral palsy through the transition years and description of adult life: The Swedish experience

Abstract

Objective:
To describe the process of providing healthcare through the transition years to individuals with cerebral palsy (CP) and to present data on living arrangements, education/occupation status, and use of personal assistance in young Swedish adults with CP.

Methods:
A descriptive cross-sectional study of 102 participants (63 males) participating in a standardized follow-up program called CPUP. Data were analyzed in relation to the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS).

Results:
Of the participants, 58 "lived with parents", 29 reported "independent living", and 15 reported "special service housing". Living arrangements differed among GMFCS levels (p< 0.001) and 14 of 20 with severe disabilities lived with their parents. Thirty-four of 70 reported personal assistance; use of assistance correlated (p< 0.001) with GMFCS (r(s) =0.71) and MACS (r(s) = 0.70). Thirty five were "students", 20 "employed", 36 in "daily activities", and 9 were "unemployed". Of those employed, 18 had GMFCS levels I-II.

Conclusion:
Some young adults with CP and severe functional limitations manage independent living - however, many still live with their parents. Although many are students, a large number are unemployed. There is disconnect between the pediatric and adult healthcare systems. CPUP may facilitate in making the transition smoother.

Full text

Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 7 (2014) 53–61 53
DOI 10.3233/PRM-140273
IOS Press
Follow-up of individuals with cerebral palsy
through the transition years and description of
adult life: The Swedish experience
Ann Alriksson-Schmidta,∗, Gunnar Hägglunda, Elisabet Rodby-Bousquetband Lena Westbomc
aDepartment of Clinical Sciences, Lund University, Lund, Sweden
bCentre for Clinical Research, Uppsala University, Central Hospital Västerås, Västerås, Sweden
cDepartment of Paediatrics, Lund University, Skåne University Hospital, Lund, Sweden
Accepted 20 December 2013
Abstract.
OBJECTIVE: To describe the process of providing healthcare through the transition years to individuals with cerebral palsy
(CP) and to present data on living arrangements, education/occupation status, and use of personal assistance in young Swedish
adults with CP.
METHODS: A descriptive cross-sectional study of 102 participants(63 males) participating in a standardized follow-up program
called CPUP. Data were analyzed in relation to the Gross Motor Function Classification System (GMFCS) and the Manual
Ability Classification System (MACS).
RESULTS: Of the participants, 58 “lived with parents”, 29 reported “independent living”, and 15 reported “special service
housing”. Living arrangements differed among GMFCS levels (p<0.001) and 14 of 20 with severe disabilities lived with their
parents. Thirty-four of 70 reported personal assistance; use of assistance correlated (p<0.001) with GMFCS (rs
=0.71) and
MACS (rs
=0.70). Thirty five were “students”, 20 “employed”, 36 in “daily activities”, and 9 were “unemployed”. Of those
employed, 18 had GMFCS levels I-II.
CONCLUSION: Some young adults with CP and severe functional limitations manage independent living – however, many still
live with their parents. Although many are students, a large number are unemployed. There is disconnect between the pediatric
and adult healthcare systems. CPUP may facilitate in making the transition smoother.
Keywords: Transition, cerebral palsy, young adulthood
1. Introduction
Cerebral palsy (CP) is the most common cause of
mobility disability in childhood, with a prevalence of
about 2.1/1,000 live births [1]. Although the brain le-
sion that causes CP is not progressive, the clinical man-
ifestations change over time, posing the risk of devel-
oping musculoskeletal complications and deterioration
∗Corresponding author: Ann I. Alriksson-Schmidt, Department of
Clinical Sciences, Lund University, Lund, Orthopedics SE-221 85,
Sweden. Tel.: +46 046177168; Fax: +46 0468888328; E-mail: ann.
alriksson-schmidt@med.lu.se.
of motor function, if not prevented. At school-age, 2
out of 3 children with CP have good walking and man-
ual abilities [2–4] and these days most people with CP
can expect to reach adulthood [5]. Even amongst those
with the most severe disability, 6 out of 10 individuals
with CP survive into adulthood [6]. The clinical man-
ifestations in CP, such as contractures and joint defor-
mities, do not only impede motor abilities but are also
associated with pain and fatigue [7–9], and may result
in activity limitations and participation restrictions. Al-
though CP is generally considered a pediatric condi-
tion, the majority of individuals with CP are, in fact,
adults [6].
1874-5393/14/$27.50 c
2014 – IOS Press and the authors. All rights reserved

54 A. Alriksson-Schmidt et al. / Follow-up of individuals with cerebral palsy through the transition years
1.1. CPUP
Almost twenty years ago, pediatric orthopedic sur-
geons and child habilitation specialists in southern
Sweden became concerned with the high prevalence of
painful hip dislocations and severe contractures in chil-
dren with CP. As a result, CPUP – a combination pre-
vention follow-up program and health care quality reg-
istry – was created to systematically follow all children
with CP and to simultaneously collect data for health
care quality improvement purposes. CPUP has ex-
panded substantially since its inception, both in terms
of reach and scope. In the southern regions (Skåne and
Blekinge) where the program originally began, 98% of
the total pediatric population with CP participate [3],
and since 2005 all regions in Sweden offer participa-
tion in the program. Professional disciplines affiliated
with the CPUP program have increased throughout the
years and now include orthopedic and hand surgery at
the hospital and physiotherapy, occupational therapy,
and pediatric neurology at the child habilitation units.
Social workers, speech therapists, psychologists, spe-
cial educators, and, at times, dieticians and recreational
leaders are also part of the multi-professional habilita-
tion teams. Recently, a Nordic user organization pro-
posed that an assessment of cognitive abilities be in-
cluded in CPUP. Current plans are to incorporate an
optional cognitive test battery to be administered by
pediatric neuropsychologistsstarting in 2014. CPUP is
not a multidisciplinary clinic in the traditional sense,
but rather a secondary prevention program used by the
habilitation services to detect early signs of deteriora-
tion that can then be remedied before they escalate.
CP is a complex condition and opinions differ on
how and when to treat the medical complications that
are likely to occur. In CPUP, preventive as opposed
to reactive treatment is the guiding framework and it
has been shown that CPUP has been effective in pre-
venting hip dislocations and reducing the number of
contractures and deformities in children and adoles-
cents with CP [10–14]. In brief, the children are as-
sessed by their occupationaland physiotherapists at the
habilitation units once or twice per year (depending
on level of motor function and age). During the as-
sessment, mobility function, hand function, pain, types
of orthoses, assistive devices used, and surgeries are
recorded. Passive joint range of motion is measured
with goniometer in a standardized manner according
to a manual (see www.cpup.se). Muscle tone is mea-
sured using the modified Ashworth scale [15]. The hips
and spine are followed with repeated clinical and ra-
diographical examinations. Pediatric orthopedic sur-
geons measure the degree of hip displacement (Migra-
tion Percentage) [16] and scoliosis (Cobb Angle) [17].
At 4–5 years of age, pediatric neurologists confirm that
the criteria for CP-diagnosis are met and diagnose the
subtype of CP [18]. These data as well as informa-
tion on perinatal and other etiological factors, brain
imaging, comorbidities, and co-occurring disabilities
are entered into a secure web-based database. Prior to
an appointment, a healthcare provider can retrieve a re-
port tailor-made for a specific patient that shows back-
ground information, progress in time, and current sta-
tus. Entering data during the appointment gives real
time feedback on development of joint range of mo-
tion and other areas, with warning signals if deterio-
ration is noted. Moreover, national guidelines provide
ranges and cut-off points that guide the providers in
terms of indicated follow-up post assessment. The traf-
fic light principle is used – green means “clear” and
that no indications of deterioration were noted during
assessment, yellow indicates that vigilant observation
or potentially treatment is recommended, and red indi-
cates “alert” and that treatment is urgently needed (as-
suming no specific contra indications). Treatment tra-
ditions differ among regions. As long as sufficient ev-
idence to clarify what treatment strategies result in the
“best” outcomes is lacking, these differences will con-
tinue; nevertheless, the same data variables are entered
into the database regardless of site. Other countries, or
specific regions of countries, have adapted CPUP (e.g.,
Norway, Denmark, Iceland, New South Wales in Aus-
tralia, and Scotland) or some abbreviated version of the
program, and now systematically follow their pediatric
CP populations. As both a registry and clinical follow-
up program, CPUP is one of very few programs able to
provide prospective population based data on a number
of processes and outcomes relevant to CP.
1.2. Transition
In spite of nation-wide coverage of multi-professio-
nal child habilitation teams that follow up children
with special health care needs (CSHCN) throughout
childhood, Sweden – like much of the rest of the
world [19] – struggles with the process of transition
to adulthood. The unfortunate tradition of a well-cared
for pediatric population that “age out” of childhood
into uncharted territories in adulthood is not unique
to Sweden, but is a dilemma in most of Europe and
the United States [20,21]. The same diligent monitor-
ing and cohesive level of care and expertise offered in

A. Alriksson-Schmidt et al. / Follow-up of individuals with cerebral palsy through the transition years 55
Fig. 1. Assessment scheme in the CPUP follow-up program. (Colours are visible in the online version of the article; http://dx.doi.org/10.3233/
PRM-140273)
childhood for CSHCN have generally not continued or
been available in adulthood or at older ages [22,23].
Sweden has universal healthcare coverage and does not
have to tackle the additional burden of young adults
losing insurance coverage when they become ineligi-
ble to be listed as dependents on their parents’ insur-
ances, which has been, and still may be, a concern in
the U.S. [24]. Yet, there is still a disconnect between
the Swedish pediatric and adult healthcare systems that
impedes a smooth transition [22,23]. Who ultimately
becomes charged with providing care and services for
these young adults varies depending on the level of
function of the person and the region of the country.
Adult habilitation services, organized for people with
congenital or early-onset disabilities are not available
everywhere and do not always have all required med-
ical professions on staff. Adult rehabilitation services
are primarily geared towards those with acquired dis-
abilities. In many regions, primary care physicians pro-
vide the care. Irrespective of who assumes the respon-
sibility, the result has been that the previous longitu-
dinal tracking and follow-up at the child habilitation
units was discontinued – and no one quite knows how
these young adults with CP are faring. As has been
described elsewhere [20], it now falls on the adoles-
cent or young adult (or family) to organize his or her
care – a task the young adult may not have been pre-
pared for as a recent graduate of the sheltered pedi-
atric world. Moreover, many of the adult health care
providers charged with caring for this population have
been caught off guard and have, at times, been ill-
prepared. In 2009, CPUP began a pilot project to con-
tinue to follow a cohort of adolescents and young
adults born 1988–1991. At the end of the pilot in 2011
the Swedish Association of Local Authorities and Re-
gions (SALAR) decided to provide additional funds for
the continuation of the CPUP program into adulthood.
1.3. Inclusion of adults
Currently, CPUP is being developed also for adults
and the continuation through the transition years was

56 A. Alriksson-Schmidt et al. / Follow-up of individuals with cerebral palsy through the transition years
Age 234567891011121314151617181920212223242526
GMFCS
I
II
III
IV
V
Examination once a year Examination twice a year
Fig. 2. Assessment intervals in the CPUP follow-up program (based on GMFCS-level and age). Children with GMFCS and MACS levels I are
generally not assessed annually. (Colours are visible in the online version of the article; http://dx.doi.org/10.3233/PRM-140273)
first implemented in the two southern regions of Swe-
den where the program initially started. In the near
future, individuals from other regions and individuals
who did not participate in CPUP as children will be
eligible – and actively encouraged – to participate as
well. Based on a 2010 questionnaire, CPUP has been
very well-received by parents and providers alike [25],
and the goal is to reach the same high levels of partic-
ipation and satisfaction among adults with CP, despite
their more scattered health care situations. The under-
lying principles for adults are similar to those used
in childhood, but with some necessary changes imple-
mented. Along with the medical data, data are also be-
ing collected on variables that may be more applica-
ble to adults – such as activities of daily living, occu-
pation/education status, living arrangements, and rela-
tionship status. Figures 1–2 depict the process flow and
the recommended follow-up schedule for children and
the young adults who are followed up in CPUP.
In addition to this review of how transition for in-
dividuals with CP is taking shape in Sweden, baseline
data from the pilot project that led to the establishment
of CPUP for adults are presented.
2. Methods
This is a cross-sectional study based on data from
the CPUP registry. Data included all adults examined
from October 2009 until December 2011 in southern
Sweden.
2.1. Participants
In January of 2009, a total population of 172 per-
sons, born 1988–1991, and with a diagnosis of CP
resided in the Skåne and Blekinge counties. This to-
tal population was determined using a range of differ-
ent methods in combination with the Swedish popula-
tion registry [26]. Most of the cohort born 1988–1989
were well-known from previous pediatric clinical con-
tacts, and the cohort born 1990–1991 was already fol-
lowed by CPUP. Pediatric, orthopedic, and habilitation
services medical records were also searched to find all
persons with CP born these years (to also include in-
dividuals who had relocated to the catchment area).
Rosenbaum et al.’s definition of CP was used [18]. Mo-
tor impairment with specific neurological signs (ataxia,
dyskinesia, and/or spasticity) caused by different ge-
netic syndromes without progressive brain dysfunction
were included in the CP-definition. Medical records re-
view by a pediatric neurologist indentified 10 individ-
uals who met the criteria for the CP definition used
herein. They had not previously received a diagnosis of
CP, and were therefore not approached for this study.
Invitation letters to participate were sent to 162 indi-
viduals and of those 60 did not participate for various
reasons: the remaining 102 accepted and were included
in the CPUP project and in this study (Fig. 3).
2.2. Procedure
The participants were examined by a physiothera-
pist and an occupational therapist who collaboratively
completed the examinations and forms. The adult ha-
bilitation services in Skåne and Blekinge contributed
by letting their physio- and occupationaltherapists also
assess individuals with CP who were not included in
their regular practice. Caregivers or personal assistants
answered the items as proxy if needed. Each assess-
ment lasted approximately one and a half hours. Refer-
rals to specialists were given to those deemed to need
specialty care. All participants (or caregivers/personal
assistants) were informed about the continued follow-
up and that they would be offered to continue to
be seen in CPUP. The gross motor function was de-
termined by using the expanded and revised version

A. Alriksson-Schmidt et al. / Follow-up of individuals with cerebral palsy through the transition years 57
Fig. 3. Participation tree of individuals with a diagnosis of CP born 1988–1991 in Southern Sweden.
of the Gross Motor Function Classification System
(GMFCS) [27], a 5-level system based on self-initiated
movement in which Level I describes the highest level
of function and Level V the lowest. Hand function
was determined using the Manual Ability Classifica-
tion System (MACS) [28], also a 5-level system with
the highest level of hand function being Level I and
the lowest Level V. The participants’ living arrange-
ments were categorized as: (1) independent living, (2)
living with parents, or (3) special service housing. “In-
dependent living” meant that the individual had his or
her own housing, with or without assistance. “Special
service housing” comprised various arrangements, but
the most common types were group homes and service
housing provided by the municipality. Occupation sta-
tus was categorized as: (1) employed, (2) student, (3)
daily activity, and (4) unemployed. The “student” cate-
gory included all types of schooling (e.g., students with
mild-to-moderate intellectual disability), except for 2
participants with severe intellectual disability included
in the category “daily activity”. “Daily activity” refers
to a program administered by the Swedish municipal-
ities where working age individuals with intellectual
disability who do not partake in subsidized sheltered
work are involved in activities based on their functional
ability and interests during the weekdays at so called
“day centers”. In addition, data on personal assistance
were collected (yes or no). In Sweden, by law, indi-
viduals with certain severe disabilities are entitled to a
government stipend to pay for personal assistance. The
study was approved by the Medical Research Ethics
Committee at Lund University (LU-443-99).
Tab le 1
The total population of adults with CP born 1988–1991; study par-
ticipants and non-participants. Number and proportions (%)
Total population Participants Non-participants
n(%) n(%) n(%)
Sex
Female 68 (39.5) 39 (38) 29 (41)
Male 104 (60.5) 63 (62) 41 (59)
Birthyear
1988 41 (24) 21 (21) 20 (29)
1989 41 (24) 29 (28) 12 (17)
1990 41 (24) 24 (24) 17 (24)
1991 49 (28) 28 (27) 21 (30)
GMFCS level
I 64 (37) 38 (37) 26 (37)
II 24 (14) 21 (21) 3 (4)
III 19 (11) 13 (13) 6 (9)
IV 14 (8) 10 (10) 4 (6)
V 26 (15) 20 (20) 6 (9)
Unknown 25 (14.5) 0 (0) 25 (36)
Total 172 102 70
Note. Not all percentages add up to 100 because of rounding. No
significant differences were found between participants and non-
participants on sex, birth year, or GMFCS level except the higher
proportion of unknown GMFCS levels among non-participants.
2.3. Statistical analysis
Demographic information was presented as percent-
ages. Z-test comparisons of column proportions af-
ter Bonferroni adjusted p-values were used to analyze
differences between participants and non-participants.
Spearman’s correlation test and Chi-square test for
trend (linear-by-linear association test, 2-sided) were
used to analyze the relationship between ordinal data
such as GMFCS and MACS. Some of the cell sizes
were smaller than 5 and therefore Fisher’s exact test
was also used to analyze differences between sub-

58 A. Alriksson-Schmidt et al. / Follow-up of individuals with cerebral palsy through the transition years
groups. SPSS version 21 was used for all statistical
analyses and p-values less than 0.05 were considered
significant.
3. Results
There were no statistically significant differences
between the participants and non-participants on gen-
der, age, or levels of GMFCS, except for a higher
proportion of unknown GMFCS levels in the non-
participant group (Table 1).
The majority (63 of 102) of the participants were
male and the median age at assessment was 20.6 years
of age (total range 18.3–23.7). The distribution of GM-
FCS and MACS is presented in Table 2. GMFCS and
MACS levels were strongly correlated (rs=0.714,
p<0.001). Of the 102 participants, 58 still lived at
home with their parents, 29 reported independent liv-
ing (but may still have assistance), and 15 reported spe-
cial service housing. “Living arrangements” differed
significantly between levels of GMFCS (p<0.001)
and MACS (p=0.013). Those with lower functioning
were more likely to report “special service housing”
and those with higher functioning were more likely
to report “independent living”. In the group with the
most severe disability, GMFCS level V, 14 of 20 per-
sons still lived with their parents. Thirty-four of 70
individuals reported having personal assistance. The
use of personal assistance showed a strong correlation
(p<0.001) to levels of GMFCS (rs=0.71), and
MACS (rs=0.70). As expected, those with the high-
est level of functioning were more likely to not re-
port personal assistance. Thirty-five of the participants
were students, 20 were employed, 36 in daily activities,
and 9 reported being unemployed. Occupation status
showed a moderate correlation (p<0.001) to GMFCS
(rs=0.62) and MACS levels (rs=0.49). Of the 20
participants who were employed, 18 had gross motor
and manual functions at GMFCS and MACS levels I-
II, respectively. The functional levels of the 36 partici-
pants in daily activities ranged from II to V on GMFCS
and MACS.
There were no significant gender differences on liv-
ing arrangement, personal assistance, or occupation
status. Twelve referrals to see specialists (neurolo-
gists, orthopedic surgeons, and therapist) were made
because of problems related to spasticity, pain, diffi-
culties sleeping, and deformities. Twenty-three partic-
ipants were given advice regarding physical exercise,
15 received advice on how to use orthoses, and 7 were
advised on assistive devices. The referrals and advice
were distributed in all levels of GMGFS (I =13, II =
10, III =4, IV =8, V =10). Employment status by
lining arrangement is presented in Table 3.
4. Discussion
To our knowledge, this is the first study on living
arrangements and occupation status in a total popula-
tion of young adults with CP, illustrating the participa-
tion and activity restrictions that may be linked back
to the characteristic conditions of body functions such
as movement, posture, cognition, communication, and
body structures, such as secondary musculoskeletal de-
formities. The study population most probably repre-
sents the non-biased total population with CP, as those
who did not participate were known and had the same
make-up in terms of gender, years of birth, and levels
of GMFCS. It should be noted that the current study
included a substantial proportion of individuals who
functioned at a high level; the gross and fine motor
functional ability was classified at GMFCS level I in
37% and MACS level I in 40%. This reflects the fact
that the participants were drawn from a full popula-
tion of individuals with a diagnosis of CP in a defined
area, and therefore also individuals with more subtle
disability were recruited. Many other studies include
individuals functioning at lower levels where the CP
is clearly obvious, and results should be interpreted
with that in mind. Although level of motor function in
CP correlates strongly with cognitive function [29], in-
dividuals with average or high cognitive abilities are
found at all GMFCS levels. Cognitive function was not
measured but would have provided informative data.
Body structures, personal factors, and physical and so-
cial environmental factors may be facilitators and/or
inhibitors through the transition process to adult life.
This study shows that young adults with CP and se-
vere functional limitations manage independent living,
although some of them employ assistants to be able to
have their own housing.The Swedish Assistance Com-
pensation Act provides compensation to people with
certain disabilities to cover the costs of personal assis-
tance. In our study population, with a median age of
20.6 years, 58 of the 102 young adults still lived with
their parents – even those with severe disabilities, who
require extensive help. This finding is in accordance
with the experience in other countries as well [30].
Data from Statistics Sweden show that the median age
for young Swedish adults (born in 1985) to leave home

A. Alriksson-Schmidt et al. / Follow-up of individuals with cerebral palsy through the transition years 59
Tab le 2
Cross-table of MACS, living arrangement, personal assistance, and employment status by level of GMFCS
Levels of GMFCS
In(%) II n(%) III n(%) IV n(%) V n(%) Total n(%)
MACS
I 22 (71) 8 (57) 9 (82) 2 (20) 0 41 (48)
II 9 (29) 4 (29) 1 (10) 1 (10) 0 15 (17)
III 0 1 (7) 1 (10) 0 1 (5) 3 (3)
IV 0 1 (7) 0 3 (30) 2 (10) 6 (7)
V 0 0 0 4 (40) 17 (85) 21 (24)
Tot al 31 1 4 11 10 20 8 6
Living arrangement
Independent living 19 (50) 3 (14) 4 (31) 1 (10) 2 (10) 29 (28)
With parents 18 (47) 14 (67) 6 (46) 6 (60) 14 (70) 58 (57)
Special service housing 1 (3) 4 (19) 3 (23) 3 (30) 4 (20) 15 (15)
Total 38 21 13 10 20 102
Personal assistance
Yes 0 4 (24) 5 (50) 8 (89) 17 (89) 34 (49)
No 15 (100) 13 (76) 5 (50) 1 (11) 2 (11) 36 (51)
Total 15 17 10 9 19 70
Employment status
Employed 16 (43) 2 (10) 2 (15) 0 0 20 (20)
Student 15 (41) 10 (48) 3 (23) 5 (56) 2 (10) 35 (35)
Daily activity 1 (3) 8 (38) 7 (54) 3 (33) 17 (85) 36 (36)
Unemployed 5 (14) 1 (5) 1 (8) 1 (11) 1 (5) 9 (9)
Total 37 21 13 9 20 100
Note. Chi-square test for trend showed significant differences (p<0.001) between GMFCS levels for all variables. Not all percentages add up to
100% because of rounding. GMFCS =Gross Motor Function Classification System. MACS =Manual Ability Classification System. Fisher’s
exact test resulted in the same associations being statistically significant but are not presented herein.
Tab le 3
Employment status by living arrangement
Employment status
Employed n(%) Student n(%) Unemployed n(%) Daily activity n(%) Total
Living arrangement
Independent living 14 (70) 6 (17) 3 (33) 5 (14) 28
With parents 6 (30) 28 (80) 4 (44) 19 (53) 57
Special service housing 0 1 (3) 2 (22) 12 (33) 15
Total 20 35 9 36 100
Note. (rs=0.47, p<0.001).
was 21.2 years [31]. A more informative comparison
of when young adults living with or without CP leave
home will be possible in the next few years, as the
study cohort will then be older. As to be expected,
many of the young adults are students, yet a large num-
ber reported being unemployed or looking for work. In
light of the young ages and the current global financial
climate, this is not all that surprising. It will be inter-
esting to see if this has changed in a few years time,
as well as examining more in depth how employment
correlates with health, function, pain, and fatigue. It
will also be important in the context of care-giving. Al-
though the parents in the current study are likely rela-
tively young and want their adult child to live at home,
caring for a child who needs extensive assistance may
take its toll physically, mentally, and emotionally [32,
33], and this may be magnified when caring for adult
children. In addition, it may not be conducive with the
grown child gaining independence. Young adults with
CP (or other complex conditions) who have left the pe-
diatric system have reported worse health than those
without CP [30]. Young and colleagues (2006) found
that although youth with CP reported similar health
scores to their peers without CP (slightly lower),adults
with CP reported lower scores than both youth with CP
and the general adult population [30].
Transition of CSHCN from pediatric to adult health-
care is a quandary in Sweden and we believe there are
many advantages of continuing CPUP at older ages.
The adult providers will, assuming the patient con-
sents, have fast and easy access to long-term data on
their patients’ progression through childhood in differ-
ent areas and domains. Overall, the same definitions
and standardized ways of measuring are used even

60 A. Alriksson-Schmidt et al. / Follow-up of individuals with cerebral palsy through the transition years
in adulthood, which should facilitate the early detec-
tion of deterioration (or progress) that would instigate
proactive treatment. Moreover, it is also possible – and
important – to compare healthcare across regions for
quality assurance purposes. If significant differences
are found on outcomes of interest based on where in
the country care is received, indicated changes can
be implemented to reduce such disparities. CPUP will
also be able to add to the limited knowledge base of
what happens to body structure, function, activity, and
life circumstances as a person ages with CP. The de-
mographic shift that is underway in many parts of the
world has led to increased focus on “healthy aging”.
There is a distinction between aging into disability and
aging with a disability [34] and it is important that re-
search on aging with an early-onset disability is also
given priority.
Although CPUP is being implemented to also fol-
low adults some hurdles remain to fully integrate the
program. Transition is a marathon, not a sprint, that re-
quires preparation and planning and not only for the
patients but for the healthcare systems as well. In a
large review on transition; preparation, flexible timing,
care coordination, transition clinic visits, and inter-
ested adult-centered health care providers were listed
as facilitators of successful transition [35]. The lack
of experienced providers to care for adults with CP is
prevalent also in Sweden; however, efforts are under-
way to try to resolve these issues. Currently, the pedi-
atric orthopedic surgeons consult with adult orthope-
dic surgeons on an as-needed basis. Other initiatives
are being developedas well such as a user-friendly sys-
tem that will allow a person to log-in to a secure web-
site and track his or her own development on certain
variables throughout time. Ideally transition should not
only be considered in the context of health care but be
more all-encompassing in scope. In addition to health
it is clearly important to consider psycho social issues
and educational and vocational needs [36]. Reaching
out to different partners whose expertise covers these
areas will be important in the future.
Acknowledgements
We would like to thank all of the children and young
adults (and their families) who are participating in
CPUP and all the dedicated professionals engaged in
the continuous development of the program and the
follow-up. We would also like to thank Stiftelsen för
Bistånd åt Rörelsehindrade i Skåne for their support.
Conflict of interest
The authors report no conflict of interest.
References
[1] Prevalence and characteristics of children with cerebral palsy
in Europe. Dev Med Child Neurol 2002 Sep; 44(9): 633-40.
[2] Arner M, Eliasson AC, Nicklasson S, Sommerstein K, Häg-
glund G. Hand function in cerebral palsy. Report of 367 chil-
dren in a population-based longitudinal health care program.
J Hand Surg Am 2008 Oct; 33(8): 1337-47.
[3] Westbom L, Hägglund G, Nordmark E. Cerebral palsy in a
total population of 4-11 year olds in southern Sweden. Preva-
lence and distribution according to different CP classification
systems. BMC Pediatr 2007; 7: 41.
[4] Rodby-Bousquet E, Hägglund G. Better walking performance
in older children with cerebral palsy. Clin Orthop Relat Res
2012 May; 470(5): 1286-93.
[5] Hutton JL, Colver AF, Mackie PC. Effect of severity of dis-
ability on survival in north east England cerebral palsy cohort.
Arch Dis Child 2000 Dec; 83(6): 468-74.
[6] Westbom L, Bergstrand L, Wagner P, Nordmark E. Survival
at 19 years of age in a total population of children and young
people with cerebral palsy. Dev Med Child Neurol 2011 Sep;
53(9): 808-14.
[7] Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Mus-
culoskeletal pain in adults with cerebral palsy compared with
the general population. J Rehabil Med 2004 Mar; 36(2): 78-
84.
[8] Jahnsen R, Villien L, Stanghelle JK, Holm I. Fatigue in adults
with cerebral palsy in Norway compared with the general pop-
ulation. Dev Med Child Neurol 2003 May; 45(5): 296-303.
[9] Opheim A, Jahnsen R, Olsson E, Stanghelle JK. Walking
function, pain, and fatigue in adults with cerebral palsy: A
7-year follow-up study. Dev Med Child Neurol 2009 May;
51(5): 381-8.
[10] Elkamil AI, Andersen GL, Hägglund G, Lamvik T, Skranes
J, Vik T. Prevalence of hip dislocation among children with
cerebral palsy in regions with and without a surveillance pro-
gramme: A cross sectional study in Sweden and Norway.
BMC Musculoskelet Disord 2011; 12: 284.
[11] Hägglund G, Andersson S, Duppe H, Lauge-Pedersen H,
Nordmark E, Westbom L. Prevention of severe contractures
might replace multilevel surgery incerebral palsy: Results of a
population-based health care programme and new techniques
to reduce spasticity. J Pediatr Orthop B 2005 Jul; 14(4): 269-
73.
[12] Hägglund G, Andersson S, Duppe H, Lauge-Pedersen H,
Nordmark E, Westbom L. Prevention of dislocation of the
hip in children with cerebral palsy. The first ten years of a
population-based prevention programme. J Bone Joint Surg
Br 2005 Jan; 87(1): 95-101.
[13] Persson-Bunke M, Hägglund G, Lauge-Pedersen H.
Windswept hip deformity in children with cerebral palsy. J
Pediatr Orthop B 2006 Sep; 15(5): 335-8.
[14] Persson-Bunke M, Hägglund G, Lauge-Pedersen H, Wagner
P, Westbom L. Scoliosis in a total population of children with
cerebral palsy. Spine 2012 May 20; 37(12): E708-13.
[15] Bohannon RW, Smith MB. Interrater reliability of a modi-
fied Ashworth scale of muscle spasticity. Phys Ther 1987 Feb;
67(2): 206-7.

A. Alriksson-Schmidt et al. / Follow-up of individuals with cerebral palsy through the transition years 61
[16] Reimers J. The stability of the hip in children. A radiological
study of the results of muscle surgery in cerebral palsy. Acta
Orthop Scand Suppl 1980; 184: 1-100.
[17] Cobb J. Outline for the study of scoliosis. In Instructional
Course Lectures Rosemont I, editor: American Academy of
Orthopaedic Surgeons 1948.
[18] Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M,
Damiano D, et al. A report: The definition and classification
of cerebral palsy April 2006. Dev Med Child Neurol Suppl
2007; 49(Feb s109): 8-14.
[19] Watson R, Parr JR, Joyce C, May C, Le Couteur AS. Mod-
els of transitional care for young people with complex health
needs: A scoping review. Child Care Health Dev 2011 Nov;
37(6): 780-91.
[20] Tsybina I, Kingsnorth S, Maxwell J, Bayley M, Lindsay S,
McKeever P, et al. Longitudinal Evaluation of Transition Ser-
vices (“LETS Study”): Protocol for outcome evaluation. BMC
Pediatr 2012; 12: 51.
[21] Okumura MJ, Hersh AO, Hilton JF, Lotstein DS. Change in
health status and access to care in young adults with special
health care needs: results from the 2007 national survey of
adult transition and health. J Adolesc Health 2013 Apr; 52(4):
413-8.
[22] Mattsson S, Gladh G. [Children with meningomyelocele
become adults!]. Läkartidningen2005 Sep 12-18; 102(37):
2566-70.
[23] Vu Minh Arnell M, Seljee Svedberg K, Lindehall B, Jodal
U, Abrahamsson K. Adults with myelomeningocele: An in-
terview study about life situation and bladder and bowel man-
agement. Journal of Pediatric Urology 2013; 9(3): 267-71.
[24] McManus MA, Pollack LR, Cooley WC, McAllister JW, Lot-
stein D, Strickland B, et al. Current status of transition prepa-
ration among youth with special needs in the United States.
Pediatrics 2013 Jun; 131(6): 1090-7.
[25] Bättre kvalitet för varje patient. Report No.: ISBN 978-91-
7164-579-1.
[26] http://www.ssd.scb.se/databaser/makro/start.asp?lang=2.
Statistics Sweden, Statistical database, Population. [accessed
31 May 2011].
[27] Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. Con-
tent validity of the expanded and revised Gross Motor Func-
tion Classification System. Dev Med Child Neurol 2008 Oct;
50(10): 744-50.
[28] Eliasson AC, Krumlinde-Sundholm L, Rosblad B, Beckung
E, Arner M, Ohrvall AM, et al. The Manual Ability Classifi-
cation System (MACS) for children with cerebral palsy: scale
development and evidence of validity and reliability. Dev Med
Child Neurol2006 Jul; 48(7): 549-54.
[29] Himmelmann K, Beckung E, Hagberg G, Uvebrant P. Gross
and fine motor function and accompanying impairments in
cerebral palsy. Dev Med Child Neurol 2006 Jun; 48(6): 417-
23.
[30] Young N, McCormick A, Mills W, Barden W, Boydell K, Law
M, et al. The transition study: A look at youth and adults with
cerebral palsy, spina bifida and acquired brain injury. Phys
Occup Ther Pediatr 2006; 26(4): 25-45.
[31] Statistics Sweden, Demographic reports 2008: 5, Leaving
home: Statistics Sweden, Forecasting Institute 2008. http://
www.scb.se/statistik/_publikationer/BE0701_2008A01_BR_
BE51BR0805.pdf.
[32] Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swin-
ton M, et al. The health of primary caregivers of children with
cerebral palsy: How does it compare with that of other Cana-
dian caregivers? Pediatrics 2004 Aug; 114(2): e182-91.
[33] Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P. In-
dicators of distress in families of children with cerebral palsy.
Disabil Rehabil 2012; 34(14): 1202-7.
[34] Krahn GL, Suzuki R, Horner-Johnson W. Self-rated health
in persons with spinal cord injury: relationship of secondary
conditions, function and health status. Qual Life Res 2009
Jun; 18(5): 575-84.
[35] Binks JA, Barden WS, Burke TA, Young NL. What do we
really know about the transition to adult-centered health care?
A focus on cerebral palsy and spina bifida. Arch Phys Med
Rehabil 2007 Aug; 88(8): 1064-73.
[36] Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA,
Orr DP, et al. Transition from child-centered to adult health-
care systems for adolescents with chronic conditions. A posi-
tion paper of the Society for Adolescent Medicine. J Adolesc
Health 1993 Nov; 14(7): 570-6.

CopyrightofJournalofPediatricRehabilitationMedicineisthepropertyofIOSPressandits
contentmaynotbecopiedoremailedtomultiplesitesorpostedtoalistservwithoutthe
copyrightholder'sexpresswrittenpermission.However,usersmayprint,download,oremail
articlesforindividualuse.