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


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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.
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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
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.
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 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;
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
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;
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
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(%)
Female 68 (39.5) 39 (38) 29 (41)
Male 104 (60.5) 63 (62) 41 (59)
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
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(%)
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.
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.
[1] Prevalence and characteristics of children with cerebral palsy
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... Social engagement decreased with age [43]. Living arrangements differed significantly among GMFCS levels, with 70% of participants with severe disability living with their parents [21]. Nonetheless, 55.9% of young adults with CP lived with their parents overall [21,22]. ...
... Living arrangements differed significantly among GMFCS levels, with 70% of participants with severe disability living with their parents [21]. Nonetheless, 55.9% of young adults with CP lived with their parents overall [21,22]. Unmet needs in daily living healthcare and personal assistance were associated with increased severity of motor impairment (GMFCS) and attending non-specialist education [21,42]. ...
... Nonetheless, 55.9% of young adults with CP lived with their parents overall [21,22]. Unmet needs in daily living healthcare and personal assistance were associated with increased severity of motor impairment (GMFCS) and attending non-specialist education [21,42]. Unmet needs tended to increase over time but were not significantly related to whether the young person had transferred from child services [42]. ...
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Purpose The transition from pediatric to adult care can be complex and difficult to navigate for adolescents with cerebral palsy (CP). We aimed to assess the current state of transitional care for young persons with CP and delineate guidelines for best practice with opportunities for intervention. Methods A systematic review was conducted using PRISMA guidelines to search PubMed, Embase, and Scopus databases. Articles were screened for relevance via title and abstract prior to full-text review. Results Of 3151 resultant articles, 27 observational studies were included. Fourteen (52%) studies assessed clinical outcomes of patients with CP during and post-transition. Transition-associated poor outcomes included housing instability, unemployment, difficulty forming relationships, increased hospital admission rates, and decreased use of rehabilitation services. Factors associated with improved outcomes included family participation, promotion of self-efficacy, and meeting the adult team before transition. Nine (33%) studies conducted interviews with transition-age persons with CP. Key themes were a lack of transition preparedness, difficulty navigating the adult system, gaps in seamless care, and limited accessibility to specialists and environments suitable for patients with complex care needs. Four (15%) studies examined features of current transition services. Perceived barriers included poor communication within health service teams, limited adult providers accepting CP patients, and the lack of financial resources for specialized care. There was no standardized transition tool or approach. Conclusion These findings underscore the importance of a planned transition process in optimizing long-term medical and psychosocial outcomes for persons with CP. Further research, including translational, team-based, and community-engaged research, are needed.
... In addition, two articles containing only the study protocol were excluded from the remaining 15. Finally, 13 articles met the inclusion criteria [31][32][33][34][35][36][37][38][39][40][41][42][43]. According to the quality assessment, the average score of each selected article was > 1.5 (Table 2). ...
... The 13 eligible studies were categorised into three groups to describe the population and service use during the transition period [31,[35][36][37][38][39][40][41]43], validate the assessment tools [34,42], and examine the effect of the transitional intervention [32,33]. ...
... The study participants of the 13 eligible studies were recruited through regional CP registries [32,33,37,38,43], a university CP registry [34], a centre for youth and young adults with childhood conditions [41], regional hospitals [40,42], a regional CP network [31], special schools [35], and a transitional medical clinic [36]. Additionally, one study was performed as part of a national survey of children with special needs [39]. ...
Objective: Today, most individuals with cerebral palsy are adults who need a paediatric-to-adult health care transition. However, many remain in paediatric care for treatment of adult-onset health issues. Therefore, a systematic review based on the 'Triple Aim' framework was performed to determine the status of paediatric-to-adult health care transition for people with cerebral palsy. A comprehensive evaluation of transitional care was proposed for using this framework. It consists of 'experience of care', meaning satisfaction with the care, 'population health', meaning the well-being of patients, and 'cost', meaning cost-effectiveness. Method: Electronic database (PubMed) searches were performed. The inclusion criteria were original articles published between 1990 and 2020. The search terms used in this study were ('cerebral palsy' AND 'transition to adult health care') OR ('cerebral palsy' AND 'transition'). The study type had to be epidemiological, case report, case-control, and cross-sectional, but not qualitative. The outcomes of the studies were categorised into 'care experience', 'population health', and 'cost', according to the Triple Aim framework. Results: Thirteen articles met the abovementioned inclusion criteria. Few studies have examined the effect of the intervention of transition for young adults with cerebral palsy. Participants in some studies had no intellectual disability. Young adults were dissatisfied with the 'care experience', 'population health', and 'cost' and had unmet health needs and inadequate social participation. Interpretation: Further transition intervention studies with a comprehensive assessment and proactive involvement of individuals are warranted. The presence of an intellectual disability should be considered.
... They either studied or had their occupation at activity centres; 34 out of 70 young adults had personal assistance. The study included 102 individuals in their early twenties, explaining the high number of individuals living at home and in higher education (11). A Danish study showed that 55% of Danish adults with CP (aged 29-35 years) were unemployed, did not cohabit with a partner and did not have children, compared with only 4% of the control population (12). ...
... This difference might be explained by our larger cohort (1,888 vs. 416). In line with previous studies (11,12,21,26), we found that one in five adults lived in assisted-living facilities, most frequently for adults at GMFCS levels II and V. This observation is most likely explained by the higher proportion of individuals attending special schools or activity centres for these two groups, indicating cognitive disabilities. ...
... We found that 45% of our adult population with CP received personal assistance, and one out of five had assistance more than 160 h per week. In a study from 2014, 49% of 102 young adults had personal assistance (11) and in a study from 2001, 55% received assistance. These studies included individuals with CP, but without cognitive disabilities (10). ...
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Objectives: To analyse the living conditions and social outcomes (housing, engagement in employment or higher education, access to personal assistance and having a partner) in adults with cerebral palsy (CP) relative to their age, sex, communication ability, and motor skills. Methods: Cross-sectional registry-based study of 1,888 adults (1,030 males/858 females) with CP in the Swedish CP follow-up programme, median age 25 years (range 16–78 y). Type of housing, occupation, access to personal assistance and having a partner were analysed relative to their age, sex, and the classification systems for Gross Motor Function (GMFCS) and Communication Function (CFCS). Binary logistic regression models were used to calculate odds ratios (OR) for independent living, competitive employment, and having a partner. Results: Most of the 25- to 29-year olds (55.6%) lived independently, increasing to 72.4% in 40- to 49-year olds, while the majority (91.3%) of those under 20 years lived with their parents. Independent living was almost equal in adults at GMFCS levels I (40.2%) and V (38.6%). This parity was explained by access to personal assistance, which increased with higher GMFCS and CFCS levels. Personal assistance of >160 hours/week was associated with a high probability of independent living (OR 57). In the age span 20–64 years, 17.5% had competitive employment and 45.2% attended activity centres for people with intellectual disabilities. In the younger age group up to 24 years old, 36.9% went to mainstream/higher education and 20.5% went to special schools. In total, 13.4% had a partner and 7.8% lived together. Slightly more women than men had a partner, and most individuals were classified at CFCS level I. Conclusion: Only one in eight adults with CP has a partner, and one in six has competitive employment. Access to personal assistance is the single most important factor for independent living. It is vital to support adults with CP throughout their lifespan to achieve the best possible outcomes in all aspects of life.
... The initiative to develop the CPCog protocol for children was taken by the umbrella organization for the user organizations in the Nordic countries (CP Norden) and the subsequent development was described as the result of a natural experiment (6). Based on our experiences from this (34) and the development of procedures to systematically follow-up adults with CP in other domains (65,66), professionals in Scandinavia involved in the development of the CPCog took the initiative to develop the CPCog-Adult (In 2012, an initiative was taken to include the other two Nordic countries, Iceland and Finland, in the development of the CPCog protocol, but was unfortunately not successful at that time). ...
... Healthcare for adults tends to be less multidisciplinary and more fragmented and requires more personal responsibility in terms of arranging and getting to appointments and coordinating different types of services. Many adults with CP or other disabilities thus report that they feel left to cope on their own (65,72). ...
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Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2–2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a “childhood disability,” but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CP Cog , has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CP Cog -Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual–spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CP Cog- Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood.
... The literature also suggested that age might be a determinant of participation [20] and valued previous experiences of participation an anchor for future participation [21]. However, there is increasing evidence that social participation of young adults with CP remains uncertain and highly dependent on parental support [4,22,23]. As adults, they still have few opportunities for personal development [24] and poor involvement in meaningful activities such as employment [25,26]. ...
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Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.
Aim: To estimate the probability of independent walking and wheeled mobility in individuals with cerebral palsy (CP) at home and in the community in relation to age and gross motor function. Method: This was a longitudinal cohort study using data reported into the combined Swedish CP follow-up programme and national quality registry from October 2000 to October 2022. Walking, walking with aids, wheeled mobility, and assisted mobility defined independent or assisted mobility at home and in the community, based on the Functional Mobility Scale with additional data on wheelchair performance, were assessed. Results: There were 52 858 examinations reported for 6647 individuals with CP (age range 0-32 years, follow-up period 0-22 years). Most children and adults in Gross Motor Function Classification System (GMFCS) levels I or II walked without assistive devices. The probability of dependence on others for mobility in the community was high for both children and adults in GMFCS levels III to V. Interpretation: Although independent mobility is vital for participation and social inclusion, many children and adults with CP are dependent on others for mobility. We recommend clinicians, together with families and individuals with CP, explore how to increase access to independent mobility from an early age and continuously throughout the life course.
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Objective: In Australia, the National Disability Strategy provides a framework to guide actions and investment to achieve equity in social inclusion and economic participation for people with disability. We investigated the social outcomes of school leavers with cerebral palsy (CP) in Victoria, Australia and explored the determinants of desirable outcomes. Methods: We used the Victorian CP Register to invite all adults with CP aged 18–25 years ( n = 649). On-line and/or paper-based surveys explored participation in education, employment, community activities, living situation, relationships and life satisfaction. Functional and health status data were collected. Social outcomes were summarized descriptively and compared between individuals with CP and non-disabled peers aged 18–25 years from the Household Income and Labor Dynamics in Australia dataset. Within the CP cohort we explored whether physical and mental health and level of functioning were associated with social outcomes. In addition, a descriptive comparison was undertaken between the social outcomes of the current CP cohort with that of a previously reported 2007 cohort. Results: Ninety participants (57% male; mean age 22.4 years (SD: 2.2) in 2020; 61.1% self-reported) provided data for analyses; response rate 16.9%. CP characteristics were similar between respondents and non-respondents. In comparison to similar aged peers, 79.8% had completed secondary school (compared to 83.2%); 32.6% (compared to 75.8%) were in paid work; 87.5% (compared to 48.2%) were living in their parental home; and 3.4% (compared to 31.6%) were married or partnered. Individuals with CP and higher levels of functional capacity and better physical health were more likely to undertake post-secondary education. Higher levels of functional capacity and physical health, as well as lower mental health status were associated with being employed. Conclusions: While foundational education completion rates were similar to non-disabled peers, significant gaps in social outcomes remain, including residence in the parental home and single status. While addressing these issues is challenging, substantial efforts are needed to reduce these disparities—work that needs to be done in collaboration with people with CP and their families.
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Introduction Children and adolescents with cerebral palsy may be trapped in a vicious circle of low physical fitness, resulting in deconditioning that causes a further decrease in physical activity (PA), a lower quality of life and an increased risk of developing non-communicable diseases. Therefore, establishing a healthy and active lifestyle during childhood is even more important for individuals with a disability. However, the factors that influence habitual PA in children and adolescents with cerebral palsy remain unknown. The present protocol outlines a prospective cohort study with the aim of investigating potential predictors of habitual PA in children and adolescents with cerebral palsy in order to provide evidence for optimising PA levels and associated overall health. Methods and analysis This prospective cohort study will enrol participants with cerebral palsy between the ages of 8 and 15 years at Gross Motor Function Classification System levels I–III. Using a modified version of the International Classification of Functioning, Disability and Health model as a conceptual analytical framework, the analysis will be divided into six components and will provide predictors for habitual PA measured by accelerometry. The potential predictive variables are registry data on physical function (Danish Cerebral Palsy Follow-Up Programme); validated proxy-reported questionnaires on quality of life (Paediatric Quality of Life Inventory), overall health, pain and participation in daily activities (Paediatric Outcomes Data Collection Instrument) and supplementary questions regarding sleep, screen time and socioeconomic status. Ethics and dissemination The project is approved by the Danish Data Protection Agency (19/16396) and has been declared not notifiable by the Regional Committee on Health Research Ethics, cf. Committee Act Art. 14, paragraph 1 (S-20192000-23). The study results will be published in international peer-reviewed journals, presented at international conferences, and published in a PhD dissertation. Trial registration number NCT04614207 .
Despite facing multidimensional inequalities, some adults with cerebral palsy achieve positive social outcomes (e.g., independent living, employment, and romantic relationships). We interviewed 23 adults (aged 23–47 years) about how they successfully negotiated the challenges of adulthood. Common to all life situations was doing what others (people without cerebral palsy) do. Origins of success lay in their formative experiences (e.g., typical parental expectations with commensurate support and acceptance and supported involvement in school life). Their present functioning (e.g., positive self-concept, well-honed social skills, and physical fitness) combined with present contexts (e.g., expectations of involvement in adult activities and accessible and accommodating environments) enabled them to find ways of negotiating challenges. Finding a way included drawing on knowledge and skills, gravitating toward those who are comfortable with difference, maintaining function, and using natural and paid supports. The findings suggest multiple avenues for supporting people with cerebral palsy to achieve positive social outcomes.
Background: Children with neuromuscular disorders regularly seek care from pediatric orthopaedic surgeons. These conditions can have a significant impact on the growth and development of children and their function and well-being as adults. Questions exist about the long-term outcomes of musculoskeletal interventions performed during childhood. Methods: A search of recent literature pertaining to the musculoskeletal and functional consequences of cerebral palsy, spina bifida, Duchenne muscular dystrophy, and spinal muscle atrophy was performed. Information from those articles was combined with the experience of the authors and their institutions. Results: Neuromuscular conditions can result in limb and spine deformities that lead to impaired physical function. Orthopaedic interventions during childhood can improve function and well-being and can be durable into adulthood. Unfortunately, many individuals with these conditions transition to adult health care that lacks the informed, collaborative multidisciplinary care they received as children. This can lead to unmet health care needs and a shortage of long-term natural history and outcome studies that would inform the care of children today. Conclusions: Adults with childhood-onset neuromuscular conditions need, and deserve, dedicated health care systems that include the best aspects of the care they received as children. Pediatric orthopaedic surgeons have a role in promoting the development of such systems and a responsibility to learn from their adult patients. Level of evidence: Expert Opinion.
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Objective: To examine current US performance on transition from pediatric to adult health care and discuss strategies for improvement. Methods: The 2009-2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17 114 parent respondents who have youth with special health care needs (YSHCN) ages 12 and 18. They are asked about transition to an adult provider, changing health care needs, increasing responsibility for health care needs, and maintaining insurance coverage. We analyzed the association of selected characteristics with successful transition preparation. Results: Overall, 40% of YSHCN meet the national transition core outcome. Several factors are associated with transition preparation, including female gender; younger age; white race; non-Hispanic ethnicity; income ≥400% of poverty; little or no impact of condition on activities; having a condition other than an emotional, behavioral, or developmental condition; having a medical home; and being privately insured. Conclusions: Most YSHCN are not receiving needed transition preparation. Although most providers are encouraging YSHCN to assume responsibility for their own health, far fewer are discussing transfer to an adult provider and insurance continuity. Although changes in sample design limit trend analysis, there have been no discernible improvements since this transition outcome was measured in the 2005-2006 National Survey of Children with Special Health Care Needs. The 2011 release of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians clinical recommendations on transition, new transition tools, and the spread of medical home should stimulate future improvements in transition performance.
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Background Because of advances in medical treatment, most children with physical disabilities can expect to achieve near normal life spans. Typically, coordinated teams of health care providers in specialized pediatric settings care for these children. As these children reach adulthood, however, the availability of services and expertise changes because the adult health care system has different processes designed to meet their specialized needs. Gaps in continuity of care during the transition from pediatric to adult services, and associated poor health outcomes are well documented. In response, new models of care are being introduced to address the complex process of health care transition. This paper describes a study protocol of a client-centred, prospective, longitudinal, mixed-method evaluation of linked model of health care across the lifespan (the LIFEspan Model), offered by a pediatric rehabilitation centre and an adult rehabilitation centre. Method This project will include a process and an outcome evaluation of the LIFEspan Model. The process evaluation will detail the specific service delivery that occurs with respect to preparation for transition and transfer of care through chart audits of pediatric medical records and qualitative interviews with LIFEspan staff. The outcome evaluation will measure the effect of the model on: 1) maintaining continuity within the health care system from pediatric to adult care; and 2) secondary outcomes related to health, well-being, social participation, transition readiness, and health care utilization of youth with cerebral palsy and acquired brain injury. Standardized instruments will include Health Utilities Inventory, Assessment of Life Habits, Arc’s Self-Determination, Assessment of Health-Related Quality of Life, Partners in Health Questionnaire, Social Support Questionnaire, and Self-Efficacy for Managing Chronic Disease. Discussion The LETS study will be original in its undertaking of a prospective examination of outcomes 1-year post-transition, use of multiple comparison groups, and absence of disability-related exclusion criteria ensuring that the transition experiences of varied populations of young people and their families will be represented. Trial registration, ID NCT00975338
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To describe family distress as reported by parents of children with cerebral palsy (CP) and to identify factors associated with distress. In this descriptive, historical cohort study, parents of school-age children (9.2 ± 2.1 years) with CP completed the Parenting Stress Index, the Impact on Family Scale and family-related items on the Child Health Questionnaire. Predictor variables considered were sociodemographic factors, motor, cognitive and behavioral difficulties and functional limitations. These were assessed using the Gross Motor Function Measure, Leiter IQ, Strengths and Difficulties Questionnaire and Vineland Adaptive Behavior Scale. Parents of 95 children were recruited, of whom 45% were highly stressed and 11% defensive. Half indicated that their child's health impacted on their time, emotional status and family activities. Family distress measures were modestly associated with motor (r = 0.30-0.48) and cognitive abilities (r = 0.29-0.37) but more strongly correlated with particular behavioral difficulties (r = -0.42 to 0.55). Activity limitations across domains were highly associated with measures of distress. Parents of school-aged children with CP are likely to experience high stress, increased time constraints and financial and psychological burden. Findings illustrate the need to monitor family functioning intermittently as the child develops and direct appropriate resources to optimize child and family well-being.
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Hip dislocation is a serious complication among children with cerebral palsy (CP). The aim of this study was to compare the prevalence of hip dislocation among children with CP in an area providing regular care with an area providing hip surveillance services. This is a cross-sectional study in seven Norwegian counties providing regular care and one Swedish healthcare region where a hip surveillance programme was introduced in 1994. Data were provided by the Norwegian Cerebral Palsy Register and the CP Register in Southern Sweden. Children born 1996 - 2003 with moderate to severe CP, defined as Gross Motor Classification System (GMFCS) levels III - V, were included. In all, 119 Norwegian and 136 Swedish children fulfilled the criteria. In Norway, data on hip operations and radiographs of the hips were collected from medical records, while these data are collected routinely in the Swedish register. The hip migration percentage was measured on the recent radiographs. Hip dislocation was defined as a migration percent of 100%. The proportion of children at GMFCS levels III - V was 34% in the Norwegian and 38% in the Swedish population. In the Norwegian population, hip dislocation was diagnosed in 18 children (15.1%; CI: 9.8 - 22.6) compared with only one child (0.7%; 95% CI: 0.01 - 4.0) in Southern Sweden (p = < 0.001). Hip surgery was performed in 53 (44.5%) of the Norwegian children and in 43 (32%) of the Swedish children (p = 0.03). The total number of hip operations was 65 in Norway and 63 in Sweden. Norwegian children were first operated at a mean age of 7.6 years (SD: 2.9) compared with 5.7 years (SD: 2.3) in Sweden (p = 0.001). The surveillance programme reduced the number of hip dislocations and the proportion of children undergoing hip surgery was lower. However, with the surveillance programme the first operation was performed at a younger age. Our results strongly support the effectiveness of a specifically designed follow-up programme for the prevention of hip dislocation in children with CP.
Background: Despite over 500,000 adolescents with special health care needs transitioning to adulthood each year, limited information is available on their health status or their access to care after transition. Objective: To describe the change in health status and access to care of a nationally sampled, longitudinal cohort of young adults with special health care needs (ASHCN). Methods: We analyzed follow-up data collected in the 2007 Survey of Adult Transition and Health on young adults who were 14-17 years of age when their parents participated in the 2001 National Survey of Children with Special Health Care Needs. We describe changes in access to care and health status over time, and used logistic regression to identify characteristics that were associated with declining health status in this cohort. Results: 1,865 participants, aged 19-23 years, completed the Survey of Adult Transition and Health. Between 2001 and 2007, there was a 3.6 fold increase in the proportion experiencing delayed or forgone care; 10% reported a decline in health status. There was a 7.7-fold increase in the proportion reporting no insurance. In regression analysis, factors associated with declining health status between 2001 and 2007 included underlying disease severity and delayed or forgone care in young adulthood. Conclusions: We found significant deterioration in insurance coverage, usual source of care and receiving timely health care as ASHCN aged into adulthood, and that this was associated with decline in health status. Our findings suggest that further population-based analyses of health outcomes are needed to plan for interventions to assist this vulnerable population.
Aim: To assess life situation, and bladder and bowel management in individuals with myelomeningocele (MMC) after transferal to adult medical care. Materials and methods: All individuals (134) with myelomeningocele from western Sweden, born before 1981, and assessed on at least two occasions by a pediatric urologist, were invited to participate in a telephone interview according to a structured protocol. Sixty-nine individuals (32 males, 37 females) with a median age of 34 years (range 27-50) agreed to participate. Results: Sixty-two individuals (90%) passed high school or had university education and 46 (67%) were employed. Fifty-three (77%) had their own apartment and 27 (39%) lived with a partner. Clean intermittent catheterization was used by 49 (71%), more commonly in females (p < 0.05). Pads were used by 60 (87%) individuals. Ten (14%) had urotherapy support. Of those operated on, 16 (53%) had a consultation with a urologist every 3 years; the corresponding number for the non-operated was 12 (31%). Eight individuals were treated with anticholinergic drugs. None had support for improvement of the fecal emptying regimen. Conclusions: Of the participants in the study, one third had no or rare contact with a urologist, few had urotherapy support and none had support for bowel regimen.
Epidemiological total population study based on a prospective follow-up cerebral palsy (CP) registry. To describe the prevalence of scoliosis in a total population of children with CP, to analyze the relation between scoliosis, gross motor function, and CP subtype, and to describe the age at diagnosis of scoliosis. Children with CP have an increased risk of developing scoliosis. The reported incidence varies, partly due to different definitions and study groups. Knowledge of the prevalence and characteristics of scoliosis in an unselected group of children with different CP types and levels of function is important for health care planning and for analyzing the risk in an individual child. A total population of 666 children with CP, aged 4 to 18 years on January 1, 2008, followed with annual examinations in a health care program was analyzed. Gross Motor Function Classification System (GMFCS) level, CP subtype, age at clinical diagnosis of scoliosis, and the Cobb angle at the first radiographical examination were registered. Of the 666 children, 116 (17%) had mild and another 76 (11%) had moderate or severe scoliosis based on clinical examination. Radiographical examination showed a Cobb angle of more than 10° in 54 (8%) children and a Cobb angle of more than 20° in 45 (7%) children. The risk of developing scoliosis increased with GMFCS level and age. In most children, the scoliosis was diagnosed after 8 years of age. Children in GMFCS level IV or V had a 50% risk of having moderate or severe scoliosis by 18 years of age, whereas children in GMFCS level I or II had almost no risk. The incidence of scoliosis increased with GMFCS level and age. Observed variations related to CP subtype were confounded by the GMFCS, reflecting the different distribution of GMFCS levels in the subtypes. Follow-up programs for early detection of scoliosis should be based on the child's GMFCS level and age.
Young people with complex healthcare needs (CHNs) face the challenge of transferring from child to adult health services. This study sought to identify successful models of transitional care for young people with CHNs. Three conditions were used as exemplars: cerebral palsy, autism spectrum disorders and diabetes. Scoping review: using search terms concerning transitional care, four databases were systematically searched for papers published in English between 1980 and April 2010. Additional informal search methods included recommendations from colleagues working with young people with each of the three conditions and making contact with clinical and research teams with expertise in transitional care. Inclusion and exclusion criteria were applied to define the papers selected for review. A separate review of policy documents, adolescent health and transition literature was also undertaken; 10 common summary categories for the components of high-quality services were identified. All papers were coded using a framework analysis which evaluated the data in two ways using the 10 transition categories and four elements of Normalization Process Theory that are important for successful implementation and integration of healthcare interventions. Nineteen papers were selected for review. A very limited literature of models of service provision was identified for young people with cerebral palsy and diabetes. No models were identified for young people with autism spectrum disorders. Furthermore most publications were either descriptions of new service provision or time-limited pilot studies with little service evaluation or consideration of key elements of effective implementation. Despite agreement about the importance of effective transitional care, there is a paucity of evidence to inform best practice about both the process of and what constitutes effective transitional care. There is therefore an urgent need for research to evaluate current transitional care practices for young people with CHNs.