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.Cite this article: Bone Joint J 2014; 96-B:1546–52.

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.

Purpose: To describe a concept for prevention of secondary conditions in individuals with chronic neuromuscular disabilities by using two Swedish developed follow-up-programmes for cerebral palsy (CP; CPUP) and myelomeningocele (MMC; MMCUP) respectively as examples. Method: This paper describes and outlines the rationale, development and implementation of CPUP and MMCUP. Results: Both programmes are multidisciplinary longitudinal follow-up programmes that simultaneously serve as national registries. The programmes are population-based and set in Swedish habilitation clinics. Most children (95%) born 2000 or later with CP are enrolled in CPUP and the recruitment of adults is underway. CPUP has also been implemented in Norway, Denmark, Iceland, Scotland and parts of Australia. In MMCUP, almost all children with MMC born 2007 or later participate and individuals of all ages are now invited. The registries provide epidemiological profiles associated with CP and MMC and platforms for population-based research and quality of care improvement. Conclusions: 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.

Ankle-foot orthosis (AFO) is the most frequently used type of orthosis in children with cerebral palsy (CP). AFOs are designed either to improve function or to prevent or treat muscle contractures. The purpose of the present study was to analyse the use of, the indications for, and the outcome of using AFO, relative to age and gross motor function in a total population of children with cerebral palsy. A cross-sectional study was performed of 2200 children (58% boys, 42% girls), 0–19 years old (median age 7 years), based on data from the national Swedish follow-up programme and registry for CP. To analyse the outcome of passive ankle dorsiflexion, data was compared between 2011 and 2012. The Gross motor classification system (GMFCS) levels of included children was as follows: I (n = 879), II (n = 357), III (n = 230), IV (n = 374) and V (n = 355). AFOs were used by 1127 (51%) of the children. In 215 children (10%), the indication was to improve function, in 251 (11%) to maintain or increase range of motion, and 661 of the children (30%) used AFOs for both purposes. The use of AFOs was highest in 5-year-olds (67%) and was more frequent at lower levels of motor function with 70% at GMFCS IV-V. Physiotherapists reported achievement of functional goals in 73% of the children using AFOs and maintenance or improvement in range of ankle dorsiflexion in 70%. AFOs were used by half of the children with CP in Sweden. The treatment goals were attained in almost three quarters of the children, equally at all GMFCS levels. AFOs to improve range of motion were more effective in children with a more significant decrease in dorsiflexion at baseline.

Mobility is important for the cognitive and psychosocial development of children. Almost one third of children with cerebral palsy (CP) are non-ambulant. Wheelchairs can provide independent mobility, allowing them to explore their environment. Independent mobility is vital for activity and participation and reduces the dependence on caregivers. The purpose of this study was to describe the use of manual and powered wheelchair indoors and outdoors in relation to the degree of independent wheelchair mobility or need for assistance in a total population of children with CP.

Background and purpose — Spasticity is often regarded as a major cause of functional limitation in children with cerebral palsy (CP). We analyzed the spasticity development with age in the gastrosoleus muscle in children with CP. Children and methods — This is a longitudinal cohort study of 4,162 children (57% boys) with CP born in 1990–2015, monitored using standardized follow-up examinations in the Swedish surveillance program for CP. The study is based on 57,953 measurements of spasticity of the gastrosoleus muscle assessed using the Ashworth scale (AS) in participants between 0 and 15 years of age. The spasticity was analyzed in relation to age, sex, and Gross Motor Function Classification System (GMFCS) levels using a linear mixed model. Development of spasticity with age was modeled as a linear spline. Results — The degree of spasticity increased in most children over the first 5 years of life. At 5 years of age, 38% had an AS level of ≥ 2. The spasticity then decreased for 65% of the children during the remaining study period. At 15 years of age only 22% had AS ≥ 2. The level of spasticity and the rate of increase and decrease before and after 5.5 years of age were higher in children at GMFCS IV–V. Interpretation — The degree of spasticity of the gastrosoleus muscle often decreases after 5 years of age, which is important for long-term treatment planning and should be considered in spasticity management.