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the contextual factors in the individual’s life (8). From
the perspective of young adults with CP, interviews
using qualitative methods have shown that living
arrangements, occupation, issues with personal care
and inter-personal relationships are amongst the more
important issues to address; these span the components
of activity, participation and contextual factors (9, 10).
Given the heterogeneity of CP, several classifica-
tion systems have been developed to describe level of
functioning; the Gross Motor Function Classification,
Extended and Revised (GMFCS-ER), the Manual
Ability Classification System (MACS) and the Com-
munication Function Classification System (CFCS)
(11–13). These classification systems share similar
properties, with 5-level ordinal scales classifying fun-
ction ranging from mild disability (Level I) to severe
disability (Level V). The systems are commonly used
for analysing sub-groups. The GMFCS and the MACS
are thought to be relatively stable over time and have
been used for prognostic purposes (14, 15). Intellec-
tual disability is also of central importance, as it has a
large impact on social life trajectories and is present
in approximately half of individuals with CP (16, 17).
Young adulthood involves transitioning to indepen-
dence from the parental family, and as such, this period
offers possibilities to explore key factors that promote
or disrupt a healthy and well-integrated life.
Thus, the aim of this study was to describe a set
of social outcomes in young adults with CP, using a
population-based approach. The second aim was to
explore associations between the social outcomes with
the classification systems GMFCS, MACS, CFCS, and
intellectual disability.
METHODS
Study design
A cross-sectional study performed with population-based in-
clusion approach and collection of data through direct contact.
Study participants and setting
In 2011, a hospital-based registry was created on behalf of
Stockholm County Council to evaluate the effect of a new care
programme for youth and children with CP. All individuals born
in 1992–95 who had visited any of the 3 neuropaediatric clinics
or the paediatric orthopaedic clinic serving all of Stockholm, and
received an International Statistical Classification of Diseases
and Related Health Problems Tenth Revision (ICD-10) diag-
nosis of CP within the last 5 years were identified. In Sweden,
all children with CP are expected to have regular follow-up at
the neuropaediatric clinic at least biannually. This registry was
the basis of the study population.
Beginning in September 2013, letters of invitation were sent
out to publicly available addresses linked to the personal identity
numbers (18). Those who expressed interest were contacted with
additional information and invited to the clinic. The recruitment
www.medicaljournals.se/jrm
process was scheduled so that the individual would be in the
range 20–22 years of age at the time of data collection. If no
contact could be established despite letters and telephone at-
tempts, the individual was considered “Unable to reach”. After
providing informed consent, the responders were scheduled for
structured interviewing, questionnaires and clinical assessment
at Astrid Lindgren’s Children’s Hospital, Stockholm as a part
of a broader data collection. For individuals with intellectual
disability and/or significantly impaired communication, the
legal representative of the young adult (most often a parent)
provided informed consent and acted as his/her proxy.
Telephone and/or Skype was used for those unable to attend
the clinic (e.g. because of university studies elsewhere). In these
cases, there was no physical examination and health data were
obtained from records of recent clinical examinations. Telep-
hone interviews were performed with the proxy if the individual
was unable to attend the clinic and had intellectual disability
and/or significantly impaired communication.
All sessions were conducted by the same medical doctor
investigator (DJ), together with 1 of 2 physiotherapists with
extensive experience of CP (KL, EH), and took 1 full afternoon
per participant.
Data collection was completed in August 2016.
Variables collected
The social outcomes of interest were identified in a multimodal
approach. The first steps were reviews of the literature on the to-
pic and review of the outcomes used in previous studies. Special
emphasis was on studies with patient perspectives, which aided
in selecting outcomes of particular interest for further analysis
(9, 10). Topics addressed by adolescents and caretakers in the
author’s clinical practice were also considered. Lastly, voluntary
pilot participants (young adults with CP known to the authors)
underwent the structured interview and gave qualitative feed-
back on the validity of the outcomes and the categorization of
the items. The social outcomes identified in this manner were
living arrangements, occupation, personal finances, personal care
(in this context as the extent of family support with activities
of daily living (ADL)), and relationships; both as intimate rela-
tionships and friendships. Details on personal assistance were
also identified as important in this process, and were included
for descriptive purposes. The responses on the outcomes were
grouped into categories determined, in the multimodal approach,
to be meaningful both clinically and for the individual.
Data on socioeconomic background included country of birth,
parental level of education and parental social status.
The clinical subtype of CP was defined, and everyday functio-
ning classified within GMFCS-E&R; describing gross motor
functional level, MACS; describing manual ability level, and
CFCS; describing functional level of sending and receiving
communication (11–13). In accordance with the CFCS des-
cription, all methods of communication (including usage of
augmented and alternative communication (AAC)) were taken
into account in the assessment (11). Present or earlier enrollment
in schools for individuals with intellectual disability was used
as a marker of intellectual disability. In Sweden, only those with
an intelligence quotient (IQ) ≤ 70 are eligible for such schools.
In addition, as preliminary analyses following data collection
revealed associations with the CFCS on important outcomes, an
add-on data collection focusing on communication by indivi-
duals with CFCS levels III–V was then designed. The proxies
of these individuals (incidentally always a parent) were con-
tacted and additional data were collected, thereby ascertaining
the usage and impact of AAC and the extent to which com-