172
D. N. O. Jacobson et al.
previously mentioned study from southern Sweden
on adults with CP aged 18–23 years, 43% had moved
from the parental home (5). As independent living is
a prioritized goal for the young adults, efforts should
be made to facilitate the process (10).
The majority (79%) of the young adults without
intellectual disability were engaged in some form of
employment or higher or vocational education. Fifteen
percent of the total cohort, and 21% of those without
intellectual disability, had no activity at all. For com-
parison, the official Swedish statistics for 2015 show
that 9% of all 20–24 year-olds were neither employed
nor in ongoing education (20). Thus, regardless of
intellectual disability status the young adults with CP
were, to a larger extent, not in any occupation. In the
Netherlands, Verhoef and colleagues found that, simi-
larly, 17% of young adults with CP 20–24 years of age
(without intellectual disability) were neither employed
nor studying (6). Also in the Netherlands, in a cohort
of adults with CP, 50% of 25-year-olds without intel-
lectual disability were employed, but employment rates
were consistently lower than the general population
during follow-up (21).
Another study from the Netherlands in 2010 in
young adults with CP without intellectual disability
revealed that intimate relationships and sexuality were
set back compared with peers (22). In the referred
study, 77% had experience of intimate relationships.
This is somewhat higher than the corresponding 64%
among young adults without intellectual disability in
the present study. However, groups were not equal: the
participants in the referred study were predominantly
within high-functioning GMFCS-levels.
None of the subjects with intellectual disability and
none in CFCS levels III–V had independent personal
finances. There were, however, no clear predictors
of whether the personal finances were dependent on
governmental subsidies or dependent on the parents:
overall, approximately one-third of the young adults
were still financially dependent on their parents.
Almost half of the young adults were reliant on
family members; most often parents but also siblings
(not in a role as employed personal assistants) for ADL
on a daily basis, often including night-time, typically
helping with dressing, washing, toilet visits, and assis-
ting in changing sleeping positions and observing signs
of seizures at night. We claim that. at this age, this is a
major obstacle in transitioning to a life independent of
parental / parental family support. This issue has not
previously been extensively studied. Van der Slot and
colleagues in the Netherlands demonstrated that almost
half of adults with spastic bilateral CP had difficulties
with personal care at a mean age of 36 years (23).
www.medicaljournals.se/jrm
Associations with the classification systems and with
intellectual disability
In univariate analysis the social outcomes were, to
a large extent, determined by the (grouped) CFCS
levels, and by the presence of intellectual disability.
The MACS also displayed associations. The GMFCS
displayed no significant associations with the social
outcomes. When adjusting the results for presence of
intellectual disability, none of the classification sys-
tems were associated with the outcomes, except for
the CFCS being independently associated with having
experience of intimate relationships. These findings
implicate cognitive function and communication abi-
lities as particularly important for social functioning
in young adults with CP. In contrast, being classified
into different gross motor function levels was of limi-
ted importance in this aspect. Other researchers have
explored the independent impact of cognition and
communication abilities using other definitions than
the CFCS. Employing the socialization domain of the
Vineland Adaptive Behavior Score, Tan and colleagues
found that, for 1–24-year-olds with CP, speech impair-
ment was an independent risk factor for low social
participation, although intellectual disability, epilepsy
and GMFCS level V were more important risk factors
(24). An Australian postal survey of adults with CP at
a mean age of 24.7 years associated lack of speech
impairment with better educational achievements, with
“average intellect” being the most prominent predictor
of employment status, living arrangement and mari-
tal/partner status (25). In addition, it is important to
consider, when attempting to separate communication
and intellectual disability, reports that have shown that
children with CP and severely impaired communica-
tion display progressive cognitive decline (26). Similar
findings have been reported in children with specific
language impairment (27). The authors of these papers
have hypothesized that the ability to communicate
could be important for stable cognitive development.
The results of the communication add-on data collec-
tion indicate that interventions to improve communica-
tion function were plausible in this group.
Study limitations
Limitations of this study include that only a proportion
of the target population could be included. However, the
inclusion rate was equal to or higher than for other stu-
dies involving similar recruitment (23, 28). Although the
sample size was relatively small and certain estimates
thereby uncertain, the participants appear to be repre-
sentative in terms of sex, GMFCS levels, subtypes and
important co-morbidities (i.e. epilepsy and intellectual