Population and participants
The study population comprised adults with CP born
between 1988 and 1991, living in the two southernmost
counties of Sweden (Skane and Blekinge) on the 1st of
January 2009. People born between 1990 and 1991 were
previously followed by the CPUP program for children, but
before the hip screening started. Adults with CP born
between 1988 and 1989 were usually followed by the child
rehabilitation units until 20 years of age, and continued
rehabilitation was offered at rehabilitation units for adults.
Adolescents with mild functional impairments were usually
not followed by the rehabilitation services after adolescence.
The reports in the CPUP register are based on regular
neuropaediatric inventories of medical records and diagnosis
lists from hospitals and rehabilitation units. The CP
diagnosis and subtypes were validated by a senior neuropaediatrician
during the inventories.17 Adults born between
1988 and 1989 were included in the inventory for 2009.
Place of residence on the 1st of January 2009 was ascertained
through the Swedish population register (Statistics
Sweden).18 A total of 172 people with CP born between
1988 and 1991 were living in the area at that date; corresponding
CP prevalence was 2.3 per 1000 at age 17 to
20 years. In ten people born between 1988 and 1989 CP
was unrecognized in the medical records; they were probably
not informed about the diagnosis and were not
approached. Invitations to the CP follow-up program were
sent to 162 people, of which 26 declined, 20 did not
answer, and 116 accepted. Four of them were recently
assessed in the child rehabilitation services according to
their CPUP program, and ten failed to appear before the
end of 2011 (Fig. 1). The remaining 102 people (63 males,
39 females) took part in this study at 19 to 23 years of age
(mean 20y 6mo). There were no statistically significant differences
found between the characteristics of participants
and non-participants, except the proportion of unknown
levels of gross motor function (Table I).