Siok Swan Tan1, Jetty van Meeteren2, Marjolijn Ketelaar3, Carlo Schuengel4, Heleen A Reinders-Messelink5, Hein Raat6, Annet J Dallmeijer7, Marij E Roebroeck2. 1. Department of Rehabilitation Medicine, Erasmus MC University Medical Center, Rotterdam, The Netherlands; Institute for Medical Technology Assessment, Erasmus University Rotterdam, Rotterdam, The Netherlands. Electronic address: s.s.tan@erasmusmc.nl. 2. Department of Rehabilitation Medicine, Erasmus MC University Medical Center, Rotterdam, The Netherlands; Rijndam Rehabilitation Center, Rotterdam, The Netherlands. 3. Brain Center Rudolf Magnus and Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands; Partner of NetChild, Network for Childhood Disability Research, Utrecht, The Netherlands. 4. Department of Clinical Child and Family Studies, VU University, Amsterdam, The Netherlands; EMGO+ Institute for Health and Care Research, Amsterdam, The Netherlands. 5. Department of Rehabilitation Medicine, University Medical Center Groningen, Groningen, The Netherlands; Rehabilitation Center Revalidatie Friesland, Beetsterzwaag, The Netherlands. 6. Department of Public Health, Erasmus MC University Medical Center, Rotterdam, The Netherlands. 7. EMGO+ Institute for Health and Care Research, Amsterdam, The Netherlands; Department of Rehabilitation Medicine, VU University Medical Center, Amsterdam, The Netherlands.
Abstract
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.
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.