Health conditions, functioning and social outcomes in adults with cerebral palsy
Abstract
Background: A majority of individuals with cerebral palsy (CP) are adults,
and yet healthcare and research are focused on children. In comparison to the
consequences in childhood, little is known about the long-term consequences
of CP.
Aims: To explore the health, functioning, and social outcomes in a populationbased
cohort of middle-aged adults with CP in western Sweden.
Methods: The total cohort of individuals with CP born between 1959-1978 in
the CP Register of western Sweden formed the basis for this thesis. Childhood
data from the CP Register was used to compare survivors from the total cohort
with the total cohort. Register data on the survivors’ social outcomes and of
sex and age matched controls in the general population were gathered from
Statistics Sweden and compared. All survivors still residing in the region were
invited to a follow-up assessment of impairments and health conditions. The
presence of impairments at the follow-up assessment in adulthood were
compared to childhood data from the CP Register.
Results: The survivors differed from children with CP in the distribution of
CP subtypes and had less severe associated impairments. Among the survivors,
there was a decline in walking ability from childhood to adulthood and an
increase in individuals with intellectual disability and epilepsy. In adulthood,
pain and gastrointestinal, respiratory, and psychiatric disorders were common,
and social outcomes, such as education, living arrangements, employment, and
income differed greatly from the general population.
Conclusions: CP has serious long-term consequences for health and social
outcomes. From childhood to adulthood, the presence and severity of CPrelated
impairments may change, and other health conditions may develop. In
order to improve health and functioning and provide equal opportunities for
adults with CP so that they can fully participate in society, it is recommended
that specialized services and follow-up be extended into adulthood.
Parts of work
I. Jonsson, U., Eek, M. N., Sunnerhagen, K. S., &
Himmelmann, K. (2019). Cerebral palsy prevalence,
subtypes, and associated impairments: A population‐based
comparison study of adults and children. Developmental
Medicine & Child Neurology, 61(10), 1162-1167.
https://doi.org/10.1111/dmcn.14229 II. Jonsson, U., Eek, M. N., Sunnerhagen, K. S., &
Himmelmann, K. (2021). Changes in walking ability,
intellectual disability, and epilepsy in adults with cerebral
palsy over 50 years: a population‐based follow‐up study.
Developmental Medicine & Child Neurology, 63(7), 839-
845.
https://doi.org/10.1111/dmcn.14871 III. Jonsson, U., Eek, M. N., Sunnerhagen, K. S., &
Himmelmann, K. (2021). Health conditions in adults with
cerebral palsy: the association with CP subtype and severity
of impairments. Frontiers in Neurology, 12, 732939.
https://doi.org/10.3389/fneur.2021.732939 IV. Jonsson, U., Himmelmann, K. Social outcomes in middle-aged adults with cerebral palsy compared to the general population - a register study. In Manuscript.
Degree
Doctor of Philosophy (Medicine)
University
University of Gothenburg. Sahlgrenska Academy
Institution
Institute of Neuroscience and Physiology. Department of Clinical Neuroscience
Disputation
Fredagen den 15 mars 2024, kl. 9.00, Hörsal Arvid Carlsson, Academicum, Medicinaregatan 3, Göteborg.
https://gu-se.zoom.us/j/64579799639?pwd=bDlPS3NnQ3AySFkwWDRITjJ6MkdQUT09
Date of defence
2024-03-15
Date
2024-02-21Author
Jonsson, Ulrica
Keywords
Cerebral palsy
prevalence
adults
CP subtypes
impairments
healt conditions
social outcomes
Publication type
Doctoral thesis
ISBN
978-91-8069-571-8 (PRINT)
978-91-8069-572-5 (PDF)
Language
eng