TY - JOUR
T1 - Long-term trajectories of health-related quality of life in individuals with cerebral palsy
T2 - a multicenter longitudinal study
AU - Tan, Siok Swan
AU - van Meeteren, Jetty
AU - Ketelaar, Marjolijn
AU - Schuengel, Carlo
AU - Reinders-Messelink, Heleen A
AU - Raat, Hein
AU - Dallmeijer, Annet J
AU - Roebroeck, Marij E
N1 - Copyright © 2014 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
PY - 2014/11
Y1 - 2014/11
N2 - OBJECTIVES: To (1) determine the long-term trajectory of health-related quality of life (HRQOL) for the dimensions of physical complaints and motor, psychological, and social functioning for groups of individuals with cerebral palsy (CP) aged 1 to 24 years; (2) assess the variability in HRQOL within individuals with CP over time; (3) assess the variability in HRQOL between individuals with CP; and (4) compare the HRQOL in individuals with CP to reference data of typically developing individuals.DESIGN: Multicenter prospective longitudinal study.SETTING: Rehabilitation departments of 3 university medical centers and various rehabilitation centers in The Netherlands.PARTICIPANTS: Dutch individuals with CP (N=424; age, 1-24y).INTERVENTIONS: Not applicable.MAIN OUTCOME MEASURES: The HRQOL dimensions of physical complaints and motor, psychological, and social functioning. Each individual visited the rehabilitation department for 3 or 4 measurements. The time between measurements was 1 or 2 years.RESULTS: Individuals with CP experience an HRQOL that, on average, remains fairly stable over time. Variability in HRQOL within individuals with CP was similar to that within typically developing individuals. Variability between individuals with CP could be explained by type of CP (motor functioning), Gross Motor Function Classification System level (physical complaints and motor and social functioning), and intellectual disability (physical complaints and social functioning). Finally, individuals with CP experienced a lower HRQOL than did typically developing individuals, especially for the dimensions of motor and social functioning.CONCLUSIONS: Many changes take place in the psychosocial development of the individual with CP, which accordingly change their expectations and those of their caregivers, peers, and professionals. As a result, perceived physical complaints and motor, psychological, and social functioning remain fairly stable over many years.
AB - OBJECTIVES: To (1) determine the long-term trajectory of health-related quality of life (HRQOL) for the dimensions of physical complaints and motor, psychological, and social functioning for groups of individuals with cerebral palsy (CP) aged 1 to 24 years; (2) assess the variability in HRQOL within individuals with CP over time; (3) assess the variability in HRQOL between individuals with CP; and (4) compare the HRQOL in individuals with CP to reference data of typically developing individuals.DESIGN: Multicenter prospective longitudinal study.SETTING: Rehabilitation departments of 3 university medical centers and various rehabilitation centers in The Netherlands.PARTICIPANTS: Dutch individuals with CP (N=424; age, 1-24y).INTERVENTIONS: Not applicable.MAIN OUTCOME MEASURES: The HRQOL dimensions of physical complaints and motor, psychological, and social functioning. Each individual visited the rehabilitation department for 3 or 4 measurements. The time between measurements was 1 or 2 years.RESULTS: Individuals with CP experience an HRQOL that, on average, remains fairly stable over time. Variability in HRQOL within individuals with CP was similar to that within typically developing individuals. Variability between individuals with CP could be explained by type of CP (motor functioning), Gross Motor Function Classification System level (physical complaints and motor and social functioning), and intellectual disability (physical complaints and social functioning). Finally, individuals with CP experienced a lower HRQOL than did typically developing individuals, especially for the dimensions of motor and social functioning.CONCLUSIONS: Many changes take place in the psychosocial development of the individual with CP, which accordingly change their expectations and those of their caregivers, peers, and professionals. As a result, perceived physical complaints and motor, psychological, and social functioning remain fairly stable over many years.
KW - Adolescent
KW - Cerebral Palsy
KW - Child, Preschool
KW - Female
KW - Health Status
KW - Humans
KW - Infant
KW - Intellectual Disability
KW - Longitudinal Studies
KW - Male
KW - Psychomotor Performance
KW - Quality of Life
KW - Severity of Illness Index
KW - Social Participation
KW - Time Factors
KW - Young Adult
UR - https://www.sciencedirect.com/science/article/pii/S0003999314004171?via%3Dihub
U2 - 10.1016/j.apmr.2014.04.031
DO - 10.1016/j.apmr.2014.04.031
M3 - Article
C2 - 24929026
SN - 0003-9993
VL - 95
SP - 2029
EP - 2039
JO - Archives of Physical Medicine and Rehabilitation
JF - Archives of Physical Medicine and Rehabilitation
IS - 11
ER -