To explore pain screening in CPUP, a follow-up surveillance programme for people with cerebral palsy (CP), specifically to describe reported pain prevalence, localizations, patterns of distribution; to compare with studies using psychometrically sound assessment instruments; and to assess agreement between pain documented in CPUP and medical records.
Registry study of a population with CP, born 1993 to 2008, living in Skåne, Sweden in 2013. Descriptive data, cross-tabulations, and chi-square tests to characterize and compare the study groups. Kappa analysis to test the concordance between register and medical record reports on pain.
Pain was reported by 185 out of 497 children (37%; females 40%, males 35%). Level V in both Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System (MACS) was associated with highest prevalence of pain (50% and 54%), and level I with lowest prevalence of pain (30% and 32%). Pain was most frequent in dyskinetic CP (46%) and least frequent in unilateral spastic CP (33%). Feet and knees were the dominant localizations. Fair-moderate agreement (kappa 0.37, prevalence-adjusted bias-adjusted kappa [PABAK] 0.44) was found between documented pain in CPUP and medical records, although more seldom recognized in medical records.
The distribution of pain between CP subtypes, functional levels, sex, and age in CPUP is concordant with previous population-based studies, indicating the validity of the CPUP pain screening. Despite this, further clinical evaluation with extended pain assessments and pain management were largely neglected in children reporting chronic pain.
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.
This paper describes and outlines the rationale, development and implementation of CPUP and MMCUP.
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.
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.
To describe the process of providing healthcare through the transition years to individuals with cerebral palsy (CP) and to present data on living arrangements, education/occupation status, and use of personal assistance in young Swedish adults with CP.
A descriptive cross-sectional study of 102 participants (63 males) participating in a standardized follow-up program called CPUP. Data were analyzed in relation to the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS).
Of the participants, 58 "lived with parents", 29 reported "independent living", and 15 reported "special service housing". Living arrangements differed among GMFCS levels (p
BACKGROUND: To study motor ability at seven years of age in children treated for idiopathic clubfoot and its relation to clubfoot laterality, foot status and the amount of surgery performed. METHODS: Twenty children (mean age 7.5 years, SD 3.2 months) from a consecutive birth cohort from our hospital catchments area (300.000 inhabitants from southern Sweden) were assessed with the Movement Assessment Battery for Children (MABC) and the Clubfoot Assessment Protocol (CAP). RESULTS: Compared to typically developing children an increased prevalence of motor impairment was found regarding both the total score for MABC (p
New effective methods to reduce spasticity and dystonia are now included in the treatment of children with cerebral palsy (CP): selective dorsal rhizotomy (SDR), continuous intrathecal infusion of baclofen by an implanted pump or intramuscular injections of botulinumtoxin A. SDR is the only method that can reduce the spasticity permanently. Strong evidence exists for a positive impact of SDR on the function of the children. A multidisciplinary approach is required as it is essential to choose the best treatment for each child in each developmental period. In Lund physicians and physiotherapeuts from different disciplines such as paediatric orthopaedic surgery, neurosurgery and neurology form a central spasticity team which co-operates with the local child habilitation services. We have found that a common structured and standardized follow-up programme with early intervention against muscle hypertonia and imbalance can prevent hip luxation and contractures in children with CP.
The aims of this study were to describe the participation in physical activity of children with cerebral palsy (CP) at school and during leisure time and to identify characteristics associated with physical activity. The frequency of receiving physiotherapeutic interventions were described as a variable of interest. A total population of 364 children with verified CP aged 7-17 years living in the Skåne region in Sweden was studied using cross-sectional data from the CP follow-up programme (CPUP). Proportional odds ratios showed the most severe gross motor limitations Gross Motor Function Classification System Expanded and Revised (GMFCS-E&R) to be a characteristic for low participation in physical education at school (PE) and GMFCS-E&R level III to be a characteristic for low participation in regular physical leisure activity. The age group of 7-11 years and obesity were characteristics associated with high participation in PE, whereas thinness was associated with low participation in regular physical leisure time activities. The highest proportion of children receiving physiotherapeutic interventions was found in GMFCS-E&R level III, while mental retardation, especially if moderate or severe, proved to be an independent characteristic associated with low frequency of physiotherapeutic interventions. Gender and epilepsy did not influence the odds for participation in physical activities. Special considerations are needed when planning interventions for increased physical activity in children with CP, as the individual prerequisites differ, even among children with the same gross motor function level according to the GMFCS-E&R.
During the 1990s three new techniques to reduce spasticity and dystonia in children with cerebral palsy (CP) were introduced in southern Sweden: selective dorsal rhizotomy, continuous intrathecal baclofen infusion and botulinum toxin treatment. In 1994 a CP register and a health care programme, aimed to prevent hip dislocation and severe contractures, were initiated in the area. The total population of children with CP born 1990-1991, 1992-1993 and 1994-1995 was evaluated and compared at 8 years of age. In non-ambulant children the passive range of motion in hip, knee and ankle improved significantly from the first to the later age groups. Ambulant children had similar range of motion in the three age groups, with almost no severe contractures. The proportion of children treated with orthopaedic surgery for contracture or skeletal torsion deformity decreased from 40 to 15% (P = 0.0019). One-fifth of the children with spastic diplegia had been treated with selective dorsal rhizotomy. One-third of the children born 1994-1995 had been treated with botulinum toxin before 8 years of age. With early treatment of spasticity, early non-operative treatment of contracture and prevention of hip dislocation, the need for orthopaedic surgery for contracture or torsion deformity is reduced, and the need for multilevel procedures seems to be eliminated.
Erratum In: J Pediatr Orthop B. 2005 Sep;14(5):388Pedertsen, Henrik Lauge [corrected to Lauge-Pedersen, Henrik]
To investigate the stability and to determine factors that affect change in the Gross Motor Function Classification System (GMFCS) in a sample from the total population with cerebral palsy (CP) in two regions of Sweden.
Retrospective cohort registry study based on the follow-up programme for CP. Children with CP and a minimum of two GMFCS ratings were included. Subtype, sex, ages at GMFCS ratings, time between ratings, number of ratings, assessor change, and birth cohort were analysed in relation to initial GMFCS levels, with descriptive statistics and logistic regression models.
Ninety-three per cent (n=736) of children with CP born between 1990 and 2007 were included, resulting in 7922 assessments between 1995 and 2014. Fifty-six per cent of the children received the same GMFCS rating at all assessments, with a median of 11 individual GMFCS ratings (range 2-21) and a median of three different assessors (range 1-10). Changes were often transient; downward change (higher performance) was more likely in GMFCS levels II and III than in the other levels. The probability of upward change (lower performance) was lowest in unilateral spastic CP.
The results support the stability of the GMFCS shown previously and add new information on the properties of the classification.
Department of Clinical Sciences Lund, Division of Paediatrics, Lund University. National Competence Centre for Musculoskeletal Disorders, Lund University Hospital. Department of Health Sciences, Medical Faculty, Lund University, Sweden.
Aim The aims were to investigate survival of children with cerebral palsy (CP) and to search for modifiable factors that influence survival in CP. Method The total population of children with CP in southern Sweden born between 1990 and 2005, and followed from 1994 to 2010 comprised 718 children. The study included 708 of these children (297 females, 411 males) participating in a secondary prevention programme. CP subtype, Gross Motor Function Classification System (GMFCS) levels, and comorbidities were described. Kaplan-Meier survival curves were plotted. The following factors were investigated using Cox regression analysis: GMFCS level (co-varies with overall health), size of health care catchment area, gastrostomy feeding, and sex. Results The estimated survival at 19 years of age was 60% in children with the most severe gross motor limitations (GMFCS level V). Death occurred throughout childhood. All children at GMFCS level I or II, and 96% of the whole CP population, survived. The mortality risk in childhood CP was three times higher in catchment areas that covered small populations than in areas with a large population. Gastrostomy feeding was associated with a ninefold increased risk of dying, regardless of GMFCS level and catchment area. Interpretation Fragile children with CP, as indicated by GMFCS level V and gastrostomy feeding, had the lowest chance of surviving childhood. Health care catchment area seemed to influence survival rate.