170
D. N. O. Jacobson et al.
Data collection
Of the 49 subjects who participated on-site, 16 were
assisted by a proxy. Twelve participated via telephone,
4 independently and 8 through a proxy (all parents).
Reviews of medical records were added, with consent,
as needed to complete and confirm data, including
diagnosed co-morbidities.
Participant characteristics
The mean age of the participants was 21 years and
2 months (standard deviation (SD) 8 months). There
were 27 women (44%). Distributions of GMFCS,
MACS and CFCS levels, clinical subtypes and intel-
lectual disability are presented in Fig. 2a–c. Thirty-five
percent were born preterm (< 37 weeks gestational
age) and 14% post-term. Thirty-four percent were
diagnosed with epilepsy.
Socio-economic background
For 16 participants (26%) 1 or both parents were born
abroad, and in 7 cases (11%) both parents were born
in a non-Nordic country. Eleven participants (18%) in
total were born outside Sweden. Fifty-six percent of
the mothers and 58% of the fathers had completed 3 or
more years of higher education. Twenty-eight percent
of the parents had been separated/divorced during the
major part of the participant’s childhood.
Table I. Age, sex, and social outcomes for total sample, and sub-grouped by classification systems and by presence of intellectual disability
Total GMFCS
(n = 61) I–II
(n = 33)
Mean age, years and months (range) 21 years, 2
months (20–22
years)
Sex, female, n (%) 27 (44)
Social outcomes
Living arrangement, n (%)
Moved away from home
12 (20)
In parental home
49 (80)
Relationships: Intimate Relationships, n (%)
In an intimate relationship
12 (20)
MACS CFCS III–V
(n = 28) I–II
III–V
(n = 39) (n = 22) I–II
(n = 38) III–V
(n = 23) No
Yes
(n = 33) (n = 28)
7 (21)
26 (79) 5 (18)
23 (82) 10 (26)
29 (74) 10 (26)
28 (74) 2 (9)
21 (91) 9 (27)
24 (73)
7 (21) 5 (18)
Past intimate relationship a
19 (31)
10 (30)
9 (32)
No intimate relationship yet
30 (49)
16 (48)
14 (50)
Relationships: Friends, n (%)
Socializes with friends, outside home,
including on evenings
43 (70)
24 (73)
19 (68)
Occupation, n (%)
Regular employment
11 (18)
9 (27)
2 (7)
Higher education (university/college)
10 (16)
6 (18)
4 (14)
Vocational education or adult high school 3 (5)
3 (9)
0
Wage-subsidised employment/activity
b
programmes
3 (5)
3 (9)
0
No occupation or activity
9 (15)
7 (21)
2 (7)
Activity programmes for the intellectually
25 (41)
5 (15)
20 (71)
disabled c
Occupation: absence from scheduled activities, median (range)
Days absent from scheduled activities,
1
per month
0 (0–18)
0 (0–14) (0–18)
Personal finances, n (%)
Independent d
Dependent on governmental subsidies e
Dependent on parents f
Family support with ADL g , n (%)
Not needed
Needed on a weekly basis
Needed, on a daily basis (often day and
night)
Personal assistance, n (%)
Having personal assistance
2 (9)
20 (91)
ID
1
3 (11)
25 (89)
10 (26) 2 (9) 11 (29) 8 (24) 4 (14)
12 (31)
17 (44) 7 (32)
13 (59) 14 (37)
13 (34) 5 (22)
17 (74) 13 (39)
12 (36) 6 (21)
18 (64)
31 (79) 12 (55) 33 (87) 10 (44) 29 (88) 14 (50)
10 (26)
9 (23)
3 (8) 1
1
0 11 (29)
10 (26)
3 (8) 3 (8)
8 (21) 0
1 3 (8)
7 (18) 0
2 (9)
4 (11) 21 (91)
6 (15)
0
(0–14)
19 (86)
1 (0–18)
0
2 (6)
7 (21)
0
0
(0–10)
18 (55)
0
0
0
1
2 (7)
25 (89)
1
(0–18)
13 (39) 5 (18) 17 (44) 24 (39) 8 (24) 16 (57) 8 (21) 16 (73) 7 (18) 17 (74) 5 (15) 19 (68)
19 (31) 12 (36) 7 (25) 14 (36) 5 (23) 13 (34) 6 (26) 10 (30) 9 (32)
30 (49)
5 (8) 23 (70)
2 (6) 7 (25)
3 (11) 26 (67)
3 (8) 4 (18)
2 (9) 27 (71)
3 (8) 3 (13)
2 (9) 6 (21)
3 (11)
26 (43) 8 (24) 18 (64) 10 (26) 16 (73) 8 (21) 18 (78) 24 (73)
2 (6)
7
(21%) 19 (68)
24 (86) 8 (21) 21 (95) 7 (18) 22 (96) 5 (15) 24 (86)
5 (15)
18 (47)
1.75 (0–18)
11 (33)
10 (30)
3 (9)
18 (30)
29 (48)
1
0 (0–14)
0
0
0
0
The number (percentage) of participants with each characteristic and corresponding levels (I–II or III–V) as classified by the GMFCS, MACS and CFCS, and by
the presence of intellectual disability. Not all percentages add up to exactly 100 due to rounding. a Intimate relationship lasting ≥ 2 months, but not currently
in a relationship. b Not including activity programmes for intellectually disabled people. c Activities and schooling for individuals with an IQ < 70 in accordance
with Swedish legislation. d Defined as personal income and/or student loans for higher education covering all or almost all (≥ 75%) expenses for the individual.
e
Defined as personal income and/or student loans covering less than 75% of the individual’s expenses, without significant dependence on parents. f Defined as
predominantly dependent on parental financial support, but can also have a smaller personal income and/or some government subsidies. g Activities of daily
living. Not including when the family member is acting as employed personal assistant.
GMFCS: Gross Motor Function Classification System; MACS: Manual Ability Classification System; CFCS: Communication Function Classification System; ID:
intellectual disability; ADL: activities of daily living; IQ: intelligence quotient.
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