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.

Aim: We assessed prevalence and location of pain in a total population of children and adolescents with cerebral palsy (CP) based on the Gross Motor Function Classification System (GMFCS), age and gender.Methods: This cross‐sectional study was based on the last assessment of children aged 1–14 years in the combined Swedish follow‐up programme and national quality register programme for CP. All were born 2001–2012 and reported to the registry in 2013–2014. Logistic regression was used to regress age, gender and the GMFCS level on the presence of pain. We also assessed pain sites among GMFCS groups.Results: We included 2777 children (57% boys) at a median age of 7 years; 32.4% reported pain, with significantly more girls than boys experiencing pain and significantly more children at GMFCS levels III and V than GMFCS I. Pain frequency increased with age and differences among GMFCS levels were found in the lower extremities and abdomen. Pain in the abdomen and hips was most frequent at GMFCS V, knee pain at level III and foot pain at level I.Conclusion: Our results showed that although a lower prevalence than in many other studies, pain constituted a significant problem in children and adolescents with CP.

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.

Objectives To examine the influences from life stress and the hypothesized protective variables of social competence, family functioning, and peer social engagement on quality of life (QL) in adolescents with mobility disabilities within a stress–resilience model. Methods Variables were assessed with questionnaires completed by 159 adolescents with a mobility disability (aged 11–18 years) and their parents. Both more subjective and objective QL measures were completed using both adolescent and parent reports. Results Increased life stress was associated with worse QL. Hypothesized protective variables were used to explain significant variance in more subjective, but not objective, measures of QL beyond covariates and life stress. The hypothesized protective variables, however, did not moderate the effects of life stress on QL. There was a cumulative effect from the hypothesized protective variables such that adolescents with more of these factors had more subjective QL than those with just one factor, regardless of the specific factor. Conclusions Consistent with the tested model, interventions to improve QL in adolescents with a mobility disability may focus on reducing life stress and developing resilience by enhancing a variety of personal and social resources.