In 1994 a cerebral palsy (CP) register and healthcare programme was established in southern Sweden with the primary aim of preventing dislocation of the hip in these children. The results from the first ten years were published in 2005 and showed a decrease in the incidence of dislocation of the hip, from 8% in a historical control group of 103 children born between 1990 and 1991 to 0.5% in a group of 258 children born between 1992 and 1997. These two cohorts have now been re-evaluated and an additional group of 431 children born between 1998 and 2007 has been added. By 1 January 2014, nine children in the control group, two in the first study group and none in the second study group had developed a dislocated hip (p< 0.001). The two children in the first study group who developed a dislocated hip were too unwell to undergo preventive surgery. Every child with a dislocated hip reported severe pain, at least periodically, and four underwent salvage surgery. Of the 689 children in the study groups, 91 (13%) underwent preventive surgery. A population-based hip surveillance programme enables the early identification and preventive treatment, which can result in a significantly lower incidence of dislocation of the hip in children with CP.
Background and purpose - Surveillance of scoliosis in individuals with cerebral palsy (CP) is important for ensuring timely diagnosis and identification of curve progression. We analyzed the incidence of scoliosis in relation to age, sex, and gross motor function in a population-based cohort of individuals with CP. Patients and methods - This was a prospective register study of all 1,025 individuals born 1990-2012 in southern Sweden (1.4 million inhabitants) in the Swedish surveillance program for CP, which included >95% of the total population of people with CP in the area. Annual clinical examinations and radiographic measurement of the Cobb angle of those with a moderate or severe scoliosis were registered. We determined the incidence of scoliosis related to age, sex, and the Gross Motor Function Classification System (GMFCS) level. Results - The inclusion criteria were fulfilled by 962 individuals. The number of people (140/962) with scoliosis increased up to 20-25 years of age. The incidence of scoliosis was related to age and GMFCS level. In individuals at the lowest level of gross motor function (GMFCS V) scoliosis was seen in 10/131 before 5 years of age and at the age of 20 years 75% of these individuals had a Cobb angle ≥40°. No one in the highest level of motor function (GMFCS I) developed a Cobb angle ≥40° Interpretation - Surveillance programs for scoliosis in CP should be based on age and GMFCS level and should be initiated at a young age and continued into adulthood.
Through multidisciplinary follow-up and early detection of emerging complications individuals with CP or MMC can receive less complex and more effective interventions than if treatment is implemented at a later stage. Possibilities and challenges to design, implement and continuously run multidisciplinary secondary prevention follow-up programmes and quality registries for individuals with CP or MMC are described and discussed. Implications for rehabilitation Individuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions. Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions.
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