Young adults with cerebral palsy
Social outcomes
The main descriptive results are shown in Table I.
Twenty percent of young adults had moved away from
the parental home and, of these, most lived in a single
household (3 young adults lived with a partner). Ap-
proximately half of the study subjects had experience
of intimate relationships and 5% were currently living
with a partner. Forty-four percent were in some form
of employment or tertiary or vocational education,
whereas 15% had no activity at all. Thirty-one percent
were dependent on parents for personal finances and
43% needed parental family support with ADL on a
daily basis. Typical ADL activities where support was
needed were: eating, dressing, washing, and toilet vi-
sits, and assisting in changing sleeping positions and
observing signs of seizures at night.
Seventy-one percent were socializing with friends,
outside home, including on evenings.
Forty-eight percent had access to employed personal
assistance. Of these, most (20 out of 29 participants)
were granted 2 assistants working side-by-side at least
parts of the day.
There was substantial variation in the outcomes
when the results were plotted by sub-groups, as shown
in Table I.
Analysis of associations (Table II)
In unadjusted analysis, having moved away from the
parental home was not statistically significantly associa-
ted with the levels within the classification systems, or
intellectual disability. Having experience of an intimate
relationship was associated only with the CFCS. Oc-
cupational status and personal finances were associated
with the levels within the MACS, the CFCS, and with
intellectual disability. Socializing with friends outside
the home, including in the evening, was associated with
the CFCS, and with intellectual disability. All associa-
tions described were negative, e.g. increasing disability
on the levels of the classification systems meant a lower
probability of having achieved the item. There were no
statistically significant associations with sex on any of
the above items (not shown in table).
Most associations became non-significant when con-
trolling for the presence of intellectual disability. Having
experience of an intimate relationship was associated
with the CFCS after adjusting for intellectual disability.
Communication
Of the 23 participants (38% of total) within CFCS
levels III–V, 20 (87%) had at some point during child-
hood or adolescence used augmented and alternative
communication (AAC). Eleven of these 20 individuals
(55%) reported experiencing a significant improvement
in communication (defined here as changing to a higher
functioning level within the CFCS) with AAC use.
DISCUSSION
Social outcomes
Twenty percent of participants in this study had moved
away from home, compared with 44% in age-matched
official Swedish statistics (19). This represents a sub-
stantial difference, whereby young adults with CP, to
a large extent, appear to remain in the parental home.
However, some caution is warranted in interpreting
this, as the reference statistics refer to the country as a
whole, and the housing market in the Stockholm area
is considered tougher than the rest of Sweden. In the
Table II. Analysis of the associations between social outcomes and the levels within the functional classification systems GMFCS, MACS
and CFCS, and with intellectual disability (ID). Odds ratios (crude and adjusted for ID) of having achieved the social outcome, given
that the individual is in levels III–V compared with levels I–II. For ID, the crude odds ratio of having achieved the social outcome, given
that the individual has ID compared with not having ID
GMFCS a
OR (95% CI) MACS a
OR (95% CI) CFCS a
OR (95% CI) ID
OR (95% CI)
0.8 (0.2–3.4) 0.3 (0.03–1.6) 0.3 (0.03–1.5) 0.3 (0.1–1.5)
0.9 (0.3–2.9) 0.5 (0.2–1.8) 0.2** (0.1–0.7) 0.3 (0.1–1.0)
0.3 (0.1–1.1) 0.1** (0.01–0.6) 0*** (0–0.1) 0*** (0–0.1)
0.3 (0.1–1.2) 0.1** (0.001–0.5) 0*** (0–0.2) 0*** (0–0.1)
0.8 (0.2–2.8) 0.3 (0.1–1.1) 0.1** (0.03–0.5) 0.1** (0.03–0.6)
1.7 (0.4–7.9) 0.5 (0.1–3.8) 0.4 (0.03–5.3) 2.5 (0.6–10.1) 1.4 (0.3–6.6) 0.1* (0.01–0.95) Employed/high. Education e NA b NA b NA b Independent personal finances f NA b NA b NA b 4.3 (0.8–24.2) 1.2 (0.2–5.5) 0.2 (0.02–2.0)
Crude odds ratios
Moved out c
Intimate relationships d
Employed/ high. education e
Independent personal finances f
Friends g
Odds ratios adjusted for ID
Moved out c
Intimate relationships d
Friends g
171
*p ≤ 0.05, **p ≤0.01, ***p ≤0.001 (totally predicted outcomes generate odds ratio = 0)
a
Dichotomized into binary variable; levels III–V and levels I–II. b NA = adjusted odds ratio not available due to totally predicted outcome by the variables intellectual
disability and CFCS. c Moved out = moved away from parental home. d Intimate relationships = experience of intimate relationships. e Employed/high. Education = in
regular employment or attending higher education. f Independent personal finances = independent personal finances. f Friends=socializes with friends, outside of
home, including on evenings. OR: odds ratios; CI: confidence interval; GMFCS: Gross Motor Function Classification System; MACS: Manual Ability Classification
System; CFCS: Communication Function Classification System; ID: intellectual disability.
J Rehabil Med 51, 2019