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Purpose Children with cerebral palsy (CP) are at increased risk for hip dislocation. This can be prevented in most cases using surveillance programmes that include radiographic examinations. Known risk factors for hip dislocation include young age, high Gross Motor Function Classification System (GMFCS) level and high migration percentage (MP). The head-shaft angle (HSA) has recently been described as an additional risk factor. The study aim was to determine inter- and intra-rater reliability of the HSA in a surveillance programme for children with CP. Methods We included hip radiographs from the CP surveillance programme CPUP in southern Sweden during the first half of 2016. Fifty radiographs were included from children at GMFCS levels II-V, with a mean age of 6.6 (SD 3.2) years. Three raters measured the HSA of one hip (left or right) at baseline and four weeks later; intraclass correlation coefficient (ICC) was used to estimate inter- and intra-rater reliability. Results Inter- and intra-rater reliability were excellent for the HSA, with ICC 0.92 (95% CI 0.87-0.96) and ICC 0.99 (95% CI 0.98-0.99), respectively. Conclusion The HSA showed excellent inter- and intra-rater reliability for children with CP, providing further evidence for use of the HSA as an additional factor for identifying risk for further hip displacement or dislocation. [ABSTRACT FROM AUTHOR]

Background: Children with cerebral palsy (CP) often walk with a slower speed and a higher energy cost. Their walking performance and choice of mobility method may vary in different environments. Independent mobility is important for activity and participation.Questions/purposes: We described walking performance at different distances and environments in relation to gross motor function, CP subtype, and age.Patients and Methods: We performed a cross-sectional study including all 562 children 3 to 18 years with CP living in southern Sweden during 2008. Data were extracted from a Swedish CP register and healthcare program. The Functional Mobility Scale (FMS) was used for rating mobility at home (5 m), at school (50 m), and in the community (500 m). The FMS scores were analyzed in relation to Gross Motor Function Classification System (GMFCS) level, CP subtype, and age.Results: In this population, 57% to 63% walked 5 to 500 m without walking aids and 4% to 8% used walking aids. We found a correlation between FMS and GMFCS. The walking performance varied between the subtypes from 96% to 98% in those with spastic unilateral CP to 16% to 24% in children with dyskinetic CP. An increased proportion of children walked independently on all surfaces in each successive age group.Conclusions: The overall walking performance increased up to 7 years of age, but the proportion of children walking independently on uneven surfaces was incrementally higher in each age group up to 18 years. The ability to walk on uneven surfaces is important for achieving independent walking in the community. [ABSTRACT FROM AUTHOR]

Abstract Background 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. Methods A cross-sectional study was performed including all children aged 3-18 years with CP living in southern Sweden during 2008. Data was extracted from a register and health care programme for children with CP (CPUP). There were a total of 562 children (326 boys, 236 girls) in the register. Information on the child's use of manual and powered wheelchair indoors and outdoors and the performance in self-propelling or need for assistance were analysed related to age, CP subtype and gross motor function. Results Wheelchairs for mobility indoors were used by 165 (29%) of the 562 children; 61 used wheelchair for independent mobility (32 using manual only, 12 powered only, 17 both) and 104 were pushed by an adult. For outdoor mobility wheelchairs were used by 228 children (41%); 66 used a wheelchair for independent mobility (18 using manual only, 36 powered only, 12 both) and 162 were pushed. The use of wheelchair increased with age and was most frequent in the spastic bilateral and dyskinetic subtypes. Most powered wheelchairs were operated by children at GMFCS level IV. Conclusion In this total population of children with CP, aged 3-18 years, 29% used a wheelchair indoors and 41% outdoors. A majority using manual wheelchairs needed adult assistance (86%) while powered wheelchairs provided independent mobility in most cases (86%). To achieve a high level of independent mobility, both manual and powered wheelchairs should be considered at an early age for children with impaired walking ability.

Abstract Background Knowledge of sitting and standing performance in a total population of children with cerebral palsy (CP) is of interest for health care planning and for prediction of future ability in the individual child. In 1994, a register and a health care programme for children with CP in southern Sweden was initiated. In the programme information on how the child usually sits, stands, stands up and sits down, together with use of support or assistive devices, is recorded annually. Methods A cross-sectional study was performed, analysing the most recent report of all children with CP born 1990-2005 and living in southern Sweden during 2008. All 562 children (326 boys, 236 girls) aged 3-18 years were included in the study. The degree of independence, use of support or assistive devices to sit, stand, stand up and sit down was analysed in relation to the Gross Motor Function Classification System (GMFCS), CP subtype and age. Result A majority of the children used standard chairs (57%), could stand independently (62%) and could stand up (62%) and sit down (63%) without external support. Adaptive seating was used by 42%, external support to stand was used by 31%, to stand up by 19%, and to sit down by 18%. The use of adaptive seating and assistive devices increased with GMFCS levels (p < 0.001) and there was a difference between CP subtypes (p < 0.001). The use of support was more frequent in preschool children aged 3-6 (p < 0.001). Conclusion About 60% of children with CP, aged 3-18, use standard chairs, stand, stand up, and sit down without external support. Adding those using adaptive seating and external support, 99% of the children could sit, 96% could stand and 81% could stand up from a sitting position and 81% could sit down from a standing position. The GMFCS classification system is a good predictor of sitting and standing performance.

Purpose: To evaluate inter- and intrarater reliability, of the Eating and Drinking Ability Classification System (EDACS) for children and adults with cerebral palsy (CP) in Sweden., Methods: Four speech and language pathologists rated EDACS from videos of 30 individuals with CP, 3 to 62 years, (mean 21 y, 10 m, SD 18 y, 6 m), six at each level of the Gross Motor Function Classification System (GMFCS). Inter- and intrarater reliability were estimated using Intraclass Correlation Coefficient (ICC) with 95% confidence interval., Results: Interrater reliability was excellent, ICC 0.98 (95% CI 0.95-0.99) for EDACS levels I-V and ICC 1 for need for support, as was intrarater reliability, ICC 0.97 (95% CI 0.93-0.98) for EDACS levels I-V and ICC 0.99 (95% CI 0.99-1) for need for support., Conclusions: When rated by speech and language pathologists, EDACS shows excellent inter- and intrarater reliability for children and adults with CP. EDACS can identify eating and drinking ability and need for support in individuals at all GMFCS levels.

Background: Foot deformities, such as valgus and varus in the coronal plane and equinus in the sagittal plane, are common in children with cerebral palsy (CP). The purpose of this study was to describe the prevalence of coronal plane foot deformities and their association with the Gross Motor Function Classification System (GMFCS) level, age, CP subtype, and equinus in children with CP., Methods: A cross-sectional study was performed of 2784 children (1644 boys, 1140 girls), mean age 10 years, 2 months (standard deviation, 4.83), from the Swedish CP Follow-up Program and registry for 2021-2023. Single and multiple binary regression analyses estimated the association between coronal plane foot deformities (valgus or varus) and sex, age, GMFCS level, CP subtype, and equinus., Results: More than half (58%) the children with CP had valgus feet and 6% had varus feet. Valgus feet were more common in young children with high GMFCS levels, whereas the number of varus feet remained consistently low across all GMFCS levels. The prevalence of valgus feet was lower in older children at GMFCS I and II, but remained high in older children at GMFCS III-V. Coronal plane foot deformities were associated with higher GMFCS levels (odds ratio [OR] 11, 95% confidence interval [CI] 8-15 for GMFCS V), lower age (OR 1.5, 95% CI 1.3-1.7), and equinus (OR 1.9, 95% CI 1.4-2.5)., Conclusions: Most children with CP have a coronal plane foot deformity. Valgus is most commonly associated with higher GMFCS levels and lower age. These findings contribute to a mapping of the children with an increased risk of foot deformities and also highlight the need for continuous follow-up of foot deformities in children with CP., Competing Interests: Declarations Ethics approval and consent to participate The study was approved by the Swedish Ethical Review Authority (2023-01723-01). All our methods were carried out in accordance with relevant guidelines and regulations. The legal caregivers of all participants gave their informed consent for their data held in the registry to be used for research and publication. Permission to extract data from the CPUP register was obtained from the register owner. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Aim: To describe what is known about hip problems in individuals with developmental central hypotonia., Method: Searches were conducted in five databases to October 2023. Down syndrome was excluded from this analysis of less well-known genetic diagnoses. At least two reviewers independently screened titles, abstracts, read full-text articles, and extracted data., Results: Of 89 full-text articles, 79 met inclusion criteria. Studies included 544 individuals aged 1 month to 63 years with Kabuki, 49, XXXXY, Prader-Willi, PURA, Koolen de Vries, Emanuel, TRPM3, Wolf-Hirschhorn, and other rare syndromes. Most diagnoses may be associated with a combination of differences in hip structure or stability that are evident at birth, or develop in early infancy, with increasing hip dysplasia and subluxation over time. Joint or ligamentous laxity was most reported along with hypotonia and hypermobility as risk factors. Limited data were identified about conservative or surgical intervention and outcomes in these populations., Interpretation: Children with significant hypotonia, with or without a confirmed genetic diagnosis, are at increased risk of hip problems that may be missed with standard neonatal screening. Ultrasound is recommended between 6 weeks and 6 months, and annual orthopaedic review with regular radiographs for older children and adults with significant and persistent hypotonia., (© 2024 The Author(s). Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Background: Sit-to-stand (STS) is one of the most commonly performed functional movements in a child's daily life that enables the child to perform functional activities such as independent transfer and to initiate walking and self-care. Children with cerebral palsy (CP) often have reduced STS ability. The aim of this study was to describe STS performance in a national based total population of children with CP and its association with age, sex, Gross Motor Function Classification System (GMFCS) level, and CP subtype., Methods: This cross-sectional study included 4,250 children (2,503 boys, 1,747 girls) aged 1-18 years from the Swedish Cerebral Palsy Follow-Up Program (CPUP). STS performance was classified depending on the independence or need for support into "without support," "with support," or "unable." "With support" included external support from, e.g., walls and furniture. Physical assistance from another person was classified as "unable" (dependent). Ordinal and binary logistic regression analyses were used to identify associations between STS and age, GMFCS level, and CP subtype., Results: 60% of the children performed STS without support, 14% performed STS with support, and 26% were unable or needed assistance from another person. STS performance was strongly associated with GMFCS level and differed with age and subtype (p < 0.001). For all GMFCS levels, STS performance was lowest at age 1-3 years. Most children with GMFCS level I (99%) or II (88%) performed STS without support at the age of 4-6 years. In children with GMFCS level III or IV, the prevalence of independent STS performance improved throughout childhood. CP subtype was not associated with STS performance across all GMFCS levels when adjusted for age., Conclusions: Independent STS performance in children with CP is associated with GMFCS level and age. Children with CP acquire STS ability later than their peers normally do. The proportion of children with independent STS performance increased throughout childhood, also for children with GMFCS level III or IV. These findings suggest the importance of maintaining a focus on STS performance within physiotherapy strategies and interventions for children with CP, including those with higher GMFCS level., (© 2024. The Author(s).)

Background and Purpose: Reduced range of motion (ROM) and spasticity are common secondary findings in cerebral palsy (CP) affecting gait, positioning, and everyday functioning. These impairments can change over time and lead to various needs for intervention. The aim of this study was to analyze the development path of the changes in hamstring length, knee extension, ankle dorsiflexion, and spasticity in hamstrings and gastrosoleus from childhood into adulthood in individuals with CP at the Gross Motor Function Classification System (GMFCS) levels I-V., Methods: A longitudinal cohort study was undertaken of 61,800 measurements in 3,223 individuals with CP, born 1990-2017 and followed for an average of 8.7 years (range 0-26). The age at examination varied between 0 and 30 years. The GMFCS levels I-V, goniometric measurements, and the modified Ashworth scale (MAS) were used for repeated assessments of motor function, ROM, and spasticity., Results: Throughout the follow-up period, knee extension and hamstring length exhibited a consistent decline across all individuals, with more pronounced decreases evident in those classified at GMFCS levels III-V. Ankle dorsiflexion demonstrated a gradual reduction from 15° to 5° (GMFCS I-IV) or 10° (GMFCS V). Spasticity levels in the hamstrings and gastrosoleus peaked between ages 5 and 7, showing a propensity to increase with higher GMFCS levels., Conclusion: Passive ROM continues to decrease to 30 years of age, most pronouncedly for knee extension. Conversely, spasticity reached its peak at a younger age, with a more notable occurrence observed in the gastrosoleus compared with the hamstrings. Less than 50% of individuals had spasticity corresponding to MAS 2-4 at any age.

Background: The aim was to analyse whether scoliosis or windswept hip deformity (WSH) occurs first for children with cerebral palsy (CP)., Methods: This longitudinal cohort study using data from 1994 - 2020 (26 years) involved 41,600 measurements of 4148 children (2419 [58.3%] boys) with CP born 1990 - 2018 and registered into the Swedish CP follow-up program. Children were followed from a mean age of 2.8 [SD 1.4] years, until they developed either scoliosis or WSH or were removed at surgery., Results: WSH developed first in 16.6% of the children (mean age 8.1 [SD 5.0] years), and scoliosis in 8.1% (mean age 8.1 [SD 4.9] years). The incidence of WSH was higher than scoliosis across all levels I-V of the Gross Motor Function Classification System (GMFCS), both sexes, and for those with dyskinetic (20.0%) or spastic (17.0%) CP. The incidence of scoliosis was highest (19.8%) and developed earliest in children with GMFCS level V (mean age 5.5 [SD 3.5] years), and in children with dyskinetic (17.9%) CP (mean age 7.0 [SD 4.7] years)., Conclusions: WSH presents earlier than scoliosis in most children with CP. Children with higher GMFCS level or dyskinetic CP are more likely to develop these deformities at a younger age., (© 2024. The Author(s).)

Aim: To estimate the probability of independent walking and wheeled mobility in individuals with cerebral palsy (CP) at home and in the community in relation to age and gross motor function., Method: This was a longitudinal cohort study using data reported into the combined Swedish CP follow-up programme and national quality registry from October 2000 to October 2022. Walking, walking with aids, wheeled mobility, and assisted mobility defined independent or assisted mobility at home and in the community, based on the Functional Mobility Scale with additional data on wheelchair performance, were assessed., Results: There were 52 858 examinations reported for 6647 individuals with CP (age range 0-32 years, follow-up period 0-22 years). Most children and adults in Gross Motor Function Classification System (GMFCS) levels I or II walked without assistive devices. The probability of dependence on others for mobility in the community was high for both children and adults in GMFCS levels III to V., Interpretation: Although independent mobility is vital for participation and social inclusion, many children and adults with CP are dependent on others for mobility. We recommend clinicians, together with families and individuals with CP, explore how to increase access to independent mobility from an early age and continuously throughout the life course., What This Paper Adds: • There is a high probability of independent walking in Gross Motor Function Classification System (GMFCS) levels I to II. • Mobility options vary most at home and in the community in GMFCS level III. • Being dependent on others for mobility is likely in GMFCS levels III to V., (© 2023 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

CPUP is a combined follow-up program and national quality registry for cerebral palsy (CP). Since its inception in southern Sweden in 1994, CPUP has expanded geographically to cover all of Sweden, and similar programs are used in several northern European countries. Over 95% of all children with CP in Sweden, and a growing proportion of adults, are followed according to CPUP. The content of CPUP has been developed to involve most professions working with CP. CPUP has led to significant medical improvements. As an example, the percentage of individuals developing hip dislocation has decreased from 10% to 0.5%. The program's strengths include its interdisciplinary collaboration, user involvement, and the ability to inform and improve the quality of care systematically. Nevertheless, challenges include the need for ongoing funding and support. CPUP's success exemplifies how national quality registers can integrate into healthcare, enabling a shift from reactive to proactive care.

Background: Pain is a global health concern with substantial societal costs and limits the activity participation of individuals. The prevalence of pain is estimated to be high among individuals with cerebral palsy (CP)., Objectives: To estimate the association between pain and labor outcomes for adults with CP in Sweden., Methods: A longitudinal cohort study based on data from Swedish population-based administrative registers of 6899 individuals (53,657 person-years) with CP aged 20-64 years. Individual fixed effects regression models were used to analyze the association between pain and labor outcomes (employment and earnings from employment), as well as potential pathways through which pain might affect employment and earnings., Results: Pain was associated with adverse outcomes varying across severity, corresponding to a reduction of 7-12% in employment and 2-8% in earnings if employed. Pain might affect employment and earnings through increased likelihood of both sickness leave and early retirement., Conclusion: Pain management could potentially be important to improve labor outcomes for adults with CP, in addition to improving the quality of life., (Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.)

Background: The aim of this study was to compare performance on the six-minute walk test (6MWT) performed over 15 m and 30 m courses by children and youths with cerebral palsy (CP)., Methods: Children and youths with CP at Gross Motor Function Classification System levels I-IV performed the 6MWT in a straight 15 m-long corridor (first trial) and 30 m-long corridor (second trial). The intraclass correlation coefficient (ICC) and Bland-Altman plots were used to evaluate the agreement between the 6MWT results for the two corridor lengths., Results: We included 82 children and youths with CP (36 girls, 46 boys), with a mean age of 11.7 years (SD 4.2, range 5-22 years). There was high agreement between the results of the two 6MWTs: ICC 0.93 (95% confidence interval 0.76-0.97). The total walking distance was longer for the 30 m course (median 399 m, range 44-687 m) than the 15 m course (median 357 m, range 24-583 m)., Conclusions: We observed good agreement for the performance of the 6MWT in the 15 m and 30 m courses, although the total walking distance was greater for the 30 m course. We recommend that the same distance is used when evaluating changes in walking ability for an individual child. Both distances are appropriate when measuring endurance in children and youths with CP., (© 2023. The Author(s).)

Purpose: This cross-sectional study of 2450 children with cerebral palsy aimed to analyse the prevalence and association of scoliosis, windswept hips, hip and knee contractures., Methods: Logistic regression was used to estimate associations with pain, postural asymmetries, and ability to change position for children at Gross Motor Function Classification System (GMFCS) levels I-V, aged 0-18 years., Results: Most children with a deformity or contracture had postural asymmetries in both sitting and supine positions; 10.5% had scoliosis, 8.7% windswept hips, 6.6% hip flexion and 19.2% knee contractures. Severe postural asymmetries increased the likelihood for scoliosis 9 times, for windswept hips 6 to 9 times, and for hip and knee flexion contractures 7 and 12 times respectively, adjusted for age, sex and GMFCS level. Hip flexion contractures and windswept hips increased the likelihood for pain by 1.5-1.6 times., Conclusion: The likelihood of having scoliosis, windswept hips and flexion contractures in the hips and knees increased if the child had postural asymmetries, and for increased age and higher GMFCS levels. Efforts should focus on preventing postural asymmetries from occurring or progressing, and on increasing the child's ability to change position. Reducing postural asymmetries may also reduce the likelihood of pain.Implications for RehabilitationThe risk of having scoliosis, windswept hip deformity and flexion contractures in the hips and knees increased if the child had postural asymmetries in sitting or lying.Efforts should focus on preventing or reducing postural asymmetries, and on increasing the child's ability to change position.Reducing postural asymmetries may also reduce the risk of pain.

Aim: To describe eating and drinking ability in adults with cerebral palsy (CP) relative to sex, age, subtype, and severity of gross motor and hand function and nutritional status., Method: This was a cross-sectional study based on data of 2035 adults with CP, median age 26 years (range 18-78 years). The Eating and Drinking Ability Classification System (EDACS), Gross Motor Function Classification System (GMFCS), and Manual Ability Classification System (MACS) were used in addition to subtype, body weight, height, body mass index (BMI), skin fold thickness, and gastrostomy. Linear regression models were used to estimate associations between body weight and the other variables., Results: More than half of the adults (52.5%) eat and drink safely and 32.4% have dysphagia with limitations to eating and drinking safety. Weight, height, and BMI decreased with increasing EDACS levels. In EDACS level V, 86% had a gastrostomy, 23.4% in EDACS levels III to V were underweight, whereas 42.3% in EDACS levels I to II had a BMI over 25, indicating overweight or obesity. Increasing EDACS levels and need of support during meals were associated with lower body weight., Interpretation: Adults with CP should be routinely screened and treated for dysphagia to avoid nutritional complications. Being dependent on others during mealtimes is a risk factor for low body weight., (© 2022 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Background: To prevent severe contractures and their impact on adjacent joints in children with cerebral palsy (CP), it is crucial to treat the reduced range of motion early and to understand the order by which contractures appear. The aim of this study was to determine how a hip-knee or ankle contracture are associated with the time to and sequence of contracture development in adjacent joints., Methods: This was a longitudinal cohort study of 1,071 children (636 boys, 435 girls) with CP born 1990 to 2018 who were registered before 5 years of age in the Swedish surveillance program for CP and had a hip, knee or ankle flexion contracture of ≥ 10°. The results were based on 1,636 legs followed for an average of 4.6 years (range 0-17 years). The Cox proportional-hazards model adjusted for Gross Motor Function Classification System (GMFCS) levels I-V was used to compare the percentage of legs with and without more than one contracture., Results: A second contracture developed in 44% of the legs. The frequency of multiple contractures increased with higher GMFCS level. Children with a primary hip or foot contracture were more likely to develop a second knee contracture. Children with a primary knee contracture developed either a hip or ankle contracture as a second contracture., Conclusions: Multiple contractures were associated with higher GMFCS level. Lower limb contractures appeared in specific patterns where the location of the primary contracture and GMFCS level were associated with contracture development in adjacent joints., (© 2022. The Author(s).)

Background: This international, multi-center cross-sectional study is one of the preparatory studies in the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP) to describe their functioning and health., Objective: To identify the most common problems in functioning of adults with CP presenting in healthcare services, and facilitating and hindering environmental factors, using the ICF as a reference., Methods: Participants were adults with CP who visited healthcare services in the Netherlands, Sweden, Thailand, and the United States. Structured interviews were performed using an adapted version of the generic ICF checklist 2.1a (106 categories) to rate the participant's functioning and the impact of environmental factors. Descriptive statistics were used for frequency analysis., Results: In total, 101 participants were included, of whom 69 without intellectual disability (mean age ± SD of 38.4 ± 14.7 y; 85.5% with spastic type of CP; Gross Motor Function Classification System (GMFCS) levels I-V) and 32 with intellectual disability (mean age ± SD of 25.0 ± 6.4 y; 71.9% with spastic type of CP; GMFCS levels I-V). A total of 104 ICF categories in the ICF checklist were frequently present in adults with CP: 27 body functions, 4 body structures, 53 activities and participation, and 20 environmental factors., Conclusions: The most common problems of adults with CP presenting in healthcare services are diverse and highly prevalent. The study results add the clinical perspective on relevant categories of functioning to the basis for developing the ICF Core Sets for adults with CP., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Purpose: To examine any associations between postural asymmetries, postural ability, and pain for children with cerebral palsy in sitting and supine positions., Methods: A cross-sectional study of 2,735 children with cerebral palsy, 0-18 years old, reported into the Swedish CPUP registry. Postural asymmetries, postural ability, the gross motor function classification system levels I-V, sex, age and report of pain were used to determine any relationship between these variables., Results: Over half the children had postural asymmetries in sitting ( n  = 1,646; 60.2%) or supine ( n  = 1,467; 53.6%). These increased with age and as motor function decreased. Children were twice as likely to have pain if they had an asymmetric posture (OR 2.1-2.7), regardless of age, sex and motor function. Children unable to maintain or change position independently were at higher risk for postural asymmetries in both supine (OR 2.6-7.8) and sitting positions (OR 1.5-4.2)., Conclusions: An association was found between having an asymmetric posture and ability to change position in sitting and/or lying; and with pain. The results indicate the need to assess posture and provide interventions to address asymmetric posture and pain.Implications for rehabilitationPostural asymmetries are present in children with cerebral palsy at all levels of gross motor function.Postural asymmetries increase with age and are associated with pain.Assessment of posture should be included in surveillance programs to enable early detection and treatment.

Aim: To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP)., Method: An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study., Results: The consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies., Interpretation: The comprehensive and brief ICF Core Sets for adults with CP were created using a new online version of an established ICF Core Set consensus process. These Core Sets complement the age-specific ICF Core Sets for children and young people with CP and will promote standardized data collection worldwide., (© 2021 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Purpose: To describe the use of assistive devices and postural asymmetries in lying, sitting and standing positions in adults with cerebral palsy, and to analyze postural asymmetries and any associations with their ability to maintain or change position and time in these positions. Methods: A cross-sectional study based on data from the Swedish Cerebral Palsy follow-up program of 1,547 adults aged 16-76 years, at Gross Motor Function Classification System (GMFCS) levels I ( n = 330), II ( n = 323), III ( n = 235), IV ( n = 298), and V ( n = 361). Assistive devices such as wheelchairs, seating systems, adjustable beds, standing equipment and time in each position were reported. The Posture and Postural Ability Scale was used to identify asymmetries and rate the ability to maintain or change position. Binary logistic regression models were used to estimate odds ratios (OR) for postural asymmetries in supine, sitting and standing. Results: Assistive devices were used by 63% in sitting (range 5-100% GMFCS levels I-V), 42% in lying (4-92% levels I-V), and 32% in standing (2-70% levels II-V). Wheelchairs were used as seating systems by 57%. Most adults had postural asymmetries in supine (75%; range 35-100% levels I-V), sitting (81%; 50-99% levels I-V) and standing (88%; 65-100% levels I-V). Men were more likely than women to have postural asymmetries, and the likelihood of postural asymmetries increased with age, GMFCS levels and inability to change position. Inability to maintain position increased the probability of postural asymmetries in all positions from OR 2.6 in standing to OR 8.2 in lying and OR 13.1 in sitting. Conclusions: Almost twice as many adults used assistive devices in sitting than in lying or standing. Two thirds of the adults who used standing devices used it for <1 h per day, indicating that they might spend the remaining 23 out of 24 h per day either sitting or lying. Asymmetric postures were frequent across all ages and were highly associated with inability to change or maintain position., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Rodby-Bousquet and Agustsson.)

Objectives: To analyse the living conditions and social outcomes (housing, engagement in employment or higher education, access to personal assistance and having a partner) in adults with cerebral palsy (CP) relative to their age, sex, communication ability, and motor skills. Methods: Cross-sectional registry-based study of 1,888 adults (1,030 males/858 females) with CP in the Swedish CP follow-up programme, median age 25 years (range 16-78 y). Type of housing, occupation, access to personal assistance and having a partner were analysed relative to their age, sex, and the classification systems for Gross Motor Function (GMFCS) and Communication Function (CFCS). Binary logistic regression models were used to calculate odds ratios (OR) for independent living, competitive employment, and having a partner. Results: Most of the 25- to 29-year olds (55.6%) lived independently, increasing to 72.4% in 40- to 49-year olds, while the majority (91.3%) of those under 20 years lived with their parents. Independent living was almost equal in adults at GMFCS levels I (40.2%) and V (38.6%). This parity was explained by access to personal assistance, which increased with higher GMFCS and CFCS levels. Personal assistance of >160 hours/week was associated with a high probability of independent living (OR 57). In the age span 20-64 years, 17.5% had competitive employment and 45.2% attended activity centres for people with intellectual disabilities. In the younger age group up to 24 years old, 36.9% went to mainstream/higher education and 20.5% went to special schools. In total, 13.4% had a partner and 7.8% lived together. Slightly more women than men had a partner, and most individuals were classified at CFCS level I. Conclusion: Only one in eight adults with CP has a partner, and one in six has competitive employment. Access to personal assistance is the single most important factor for independent living. It is vital to support adults with CP throughout their lifespan to achieve the best possible outcomes in all aspects of life., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Pettersson and Rodby-Bousquet.)

Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2-2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a "childhood disability," but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CP Cog , has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CP Cog -Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual-spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CP Cog- Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Stadskleiv, van Walsem, Andersen, Bergqvist, Bøttcher, Christensen, Heyerdahl, Hollung, Høye, Jahnsen, Klevberg, Lindquist, Passmark, Rike, Rodby-Bousquet and Alriksson-Schmidt.)

Background: There is little focus on adults with cerebral palsy (CP) in research and health care and insufficient knowledge on how to identify and manage pain in this population., Objectives: This systematic review and meta-analysis aimed to determine whether pain prevalence in adults with CP is high and to explore variations in pain prevalence of subgroups, pain locations, pain severity and pain interference., Methods: Potential datasets were identified by experts in the field and literature searches in Embase, MEDLINE, and Cochrane, from January 2000 to October 2016. Included studies had a representative sample of ≥25 adults with CP and ≥1 pain outcomes. Methodological quality assessment, pain prevalence estimates and logistic regression models for subgroup effects on pain prevalence were conducted., Results: In total, 17 eligible studies were identified from 4584 publications. A meta-analysis was performed with individual participant data from 15 studies totalling 1243 participants (mean [SD] age 34.3 [12.6] years). Overall mean pain prevalence was 70% (95% CI 62-78). Women were more likely to have pain than men (P<0.001). The odds of pain was increased in adults with gross motor function level II (odds ratio [OR] 1.92, 95% CI 1.22-3.12) and IV (OR 1.77, 95% CI 1.03-4.29). Participants with pain reported pain predominantly in the legs (76%, 95% CI 66-84), and mean pain severity was 3.7/10 (95% CI 2.7-4.7) and pain interference 3.5/10 (95% CI 2.5-4.5)., Conclusions: This meta-analysis provides the first reliable pain prevalence estimate in a large international sample of adults with CP. The high prevalence of pain, 70%, suggests that adults with CP should be routinely screened for pain and treated accordingly. The range of measurement instruments used by the included studies emphasizes using common outcome measures specific to pain internationally., (Copyright © 2020 Elsevier Masson SAS. All rights reserved.)

Background and purpose - Joint contracture is a common problem among children with cerebral palsy (CP). To prevent severe contracture and its effects on adjacent joints, it is crucial to identify children with a reduced range of motion (ROM) early. We examined whether significant hip, knee, or foot contracture occurs earliest in children with CP.Patients and methods - This was a longitudinal study involving 27,230 measurements obtained for 2,693 children (59% boys, 41% girls) with CP born 1990 to 2018 and registered before 5 years of age in the Swedish surveillance program for CP. The analysis was based on 4,751 legs followed up for an average of 5.0 years. Separate Kaplan-Meier (KM) curves were drawn for each ROM to illustrate the proportions of contracture-free legs at a given time during the follow-up. Using a clustered bootstrap method and considering the child as the unit of clustering, 95% pointwise confidence intervals were generated for equally spaced time points every 2.5 years for each KM curve.Results - Contracture developed in 34% of all legs, and the median time to the first contracture was 10 years from the first examination. Contracture was most common in children with a higher Gross Motor Function Classification System (GMFCS) level. The first contracture was a flexion contracture preventing dorsiflexion in children with GMFCS level I or II and preventing knee extension in children with GMFCS level III to V.Interpretation - Early interventions to prevent knee and foot contractures in children with CP should be considered.

Background: Short hamstring muscles can cause several problems for children with cerebral palsy. The results of the clinical measurement of hamstring length are often used in decision-making about treatment of children with cerebral palsy. There are different ways of performing this measurement. The aim of this study was to evaluate the interrater reliability of the unilateral and bilateral measurement of the popliteal angle in children and youth with cerebral palsy., Methods: Two methods for estimating hamstring length using unilateral and bilateral measurements of the popliteal angle were applied in children with cerebral palsy. Both tests were applied bilaterally by two independent examiners on the same day for each child. The intraclass correlation coefficient (ICC) was calculated to evaluate the interrater reliability of both measurements. Seventy young people with cerebral palsy (32 females, 38 males, mean age 10 years 8 months, range 5-22 years) at Gross Motor Function Classification System levels I (n = 17), II (n = 31), III (n = 12) and IV (n = 10) were included., Results: The interrater reliability was good for both measurements. The ICC values were 0.80 on the right and 0.86 on the left for the unilateral popliteal angle, and 0.82 on the right and 0.83 on the left for the bilateral popliteal angle., Conclusions: Both unilateral and bilateral measurement of the popliteal angle is a reliable method for estimating hamstring length in children and youth with cerebral palsy.

Aim: To analyse the prevalence of pain, pain sites, pain severity, and pain interfering with work or daily activities and sleep in adults with cerebral palsy (CP)., Method: This was a cross-sectional study based on data from 1591 adults (16-76y, median age 25y; 879 males, 712 females; Communication Function Classification System [CFCS] levels I-V) in the Swedish Cerebral Palsy Follow-up Program. Pain severity was rated for several body sites and pain interference with activities/work and sleep was also evaluated. Logistic regression was used to estimate the odds ratios (ORs) of the factors associated with the prevalence of pain and pain interfering with activities/work or sleep., Results: Pain was reported in 1059 of 1591 adults; a higher proportion self-reported pain (69.9%) compared to proxy-reported pain (62.4%). More adults classified in CFCS level I (72.5%) reported pain compared to those in CFCS levels II to V (56.5-64.9%). Adults with severe/very severe pain had a sixfold risk of pain interfering with activity/work (OR=6.68; 95% CI 4.99-8.96) and sleep (OR=6.60; 95% CI 4.84-8.98)., Interpretation: Two-thirds of adults with CP experienced pain, which is likely to be underreported in individuals who do not communicate efficiently or rely on proxy reports. Pain strongly interfered with activities and sleep; thus, it must be assessed and treated more effectively., (© 2020 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Background and purpose - Children and young adults with cerebral palsy (CP) have an increased risk of developing scoliosis, with a prevalence ranging from 11% to 29%. Information on risk factors for the emergence and progression of scoliosis is inconclusive. This study aimed to develop a risk score based on 5-year-old children with CP to predict the risk of scoliosis before the age of 16.Patients and methods - This prospective registry study included 654 children with CP in Sweden born in 2000 to 2003 and registered with the Swedish CP follow-up program (CPUP) at the age of 5 years, including all Gross Motor Function Classification System (GMFCS) levels. 92 children developed a scoliosis before the age of 16 years. Univariable and multivariable logistic regressions were used to analyze 8 potential predictors for scoliosis: GMFCS, sex, spastic subtype, epilepsy, hip surgery, migration percentage, and limited hip or knee extension.Results - 4 predictors for scoliosis remained significant after analyses: female sex, GMFCS levels IV and V, epilepsy, and limited knee extension, and a risk score was constructed based on these factors. The predictive ability of the risk score was high, with an area under the receiver operating characteristics curve of 0.87 (95% CI 0.84-0.91).Interpretation - The risk score shows high discriminatory ability for differentiating between individuals at high and low risk for development of scoliosis before the age of 16. It may be useful when considering interventions to prevent or predict severe scoliosis in young children with CP.

Objective: The aim of this study was to clarify the association of scoliosis and windswept hips with immobility, lying position, and time in lying, in adults with cerebral palsy (CP). Methods: This cross-sectional study included 830 adults (469 males and 361 females) with a diagnosis of CP, 16-73 years, and classified at levels I-V according to the Gross Motor Function Classification System (GMFCS). Subjects' Gross motor function classification system level, presence and severity of scoliosis, hip and knee joint range of movement, lying position, postural ability in lying, and time in lying were used to identify connections between them. Results: Adults who are immobile in the lying position have higher odds of both scoliosis and windswept hips. Spending more than 8 h daily in the same lying position, increased the odds of having scoliosis, while lying solely in a supine position, resulted in higher odds of windswept hips. Conclusions: The "preferred" habitual posture frequently observed in immobile adults with CP, leads to established distortion of their body shape. The results indicate the need for early introduction of appropriate posture control, in immobile individuals with CP, from a young age.Implications for rehabilitationThe preferred posture, observed in immobile adults with cerebral palsy, leads to a distortion of their body shape.One in four adults with cerebral palsy use only one position when in bed.The results indicate the need for early introduction of appropriate posture control in individuals unable to change position.

Background: Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population., Objective: The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP., Methods: MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed., Results: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained., Conclusions: In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP., International Registered Report Identifier (irrid): DERR1-10.2196/13883., (©Ann Alriksson-Schmidt, Johan Jarl, Elisabet Rodby-Bousquet, Annika Lundkvist Josenby, Lena Westbom, Kate Himmelmann, Kristine Stadskleiv, Pia Ödman, Ingrid Svensson, Christian Antfolk, Nebojsa Malesevic, Ira Jeglinsky, Sanjib Saha, Gunnar Hägglund. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 09.10.2019.)

Background: The knowledge base on health-related quality of life (HRQoL) in adults with cerebral palsy (CP) is small and inconsistent., Objective: The aim was to study HRQoL in adults with CP stratified on demographic and disability-specific factors using both experience- and hypothetical-based value-sets., Methods: Cross-sectional study based on registry data from the Swedish follow-up program CPUP. The EQ-5D-3L (5 domains; self-care, usual activities, mobility, pain/discomfort, anxiety/depression) was used to measure HRQoL. The Swedish experience-based and the United Kingdom hypothetical-based value-sets were used to calculate the quality-adjusted life-years (QALY), and associations to demographic and disability-specific factors were studied in univariate and multivariate analyses., Results: The sample consisted of 408 adults with CP (189 women, 219 men), 18-73 years (mean age = 27, SD = 10). Approximately half reported no problems on self-care, usual activities, anxiety/depression, and some problems on mobility and pain/discomfort. Using the value-set based on experienced health states resulted in substantially higher HRQoL scores (0.77) compared to the hypothetical-based values (0.54) (when the health state is described to someone not personally experiencing it). Level of functioning and pain were strongly related to HRQoL, with gross motor functioning being a dominating factor. Sex and CP-subtype were not associated with HRQoL in the multivariate analysis., Conclusions: HRQoL was found to be high in this Swedish population of adults with CP although severe pain and reduced functioning was associated with lower HRQoL. The choice of value-set have strong influence on the HRQoL estimations, especially for lower levels of functioning., (Copyright © 2019 The Author(s). Published by Elsevier Inc. All rights reserved.)

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.

Purpose: Analyze the goals for treatment and attained goals for spinal orthoses in children with cerebral palsy (CP), and describe the use of spinal orthoses in relation to age, sex, gross motor function, and scoliosis., Methods: Cross-sectional data for all children born between 2000 and 2014 and registered in the Swedish CP registry were analyzed in relation to age, sex, Gross Motor Function Classification System (GMFCS), and scoliosis. Treatment goals were to 1) prevent deformity; 2) improve stability/positioning; 3) improve head control; and 4) improve arm/hand function., Results: Overall, 251 of the 2800 children (9%) used spinal orthoses, and the frequency increased significantly with age and GMFCS level; 147 of the 251 children had scoliosis. Several treatment goals were reported for most children. The most common goal was improved stability/positioning (96%), followed by head control (51%) and arm/hand function (38%). Only one third of the children used spinal orthoses to prevent deformities. The rate of goal attainment was 78-87% for the functional outcomes and 57% for the prevention of deformities., Conclusion: Although the goal of using spinal orthosis to prevent curvature progression remains important, we found that its functional benefits (stability, head control, arm/hand function) were of greater importance.

Purpose: To examine test-retest reliability and construct validity of the Scandinavian version of the caregiver priorities and child health index of life with disabilities (CPCHILD) questionnaire for children with cerebral palsy (CP)., Methods: Families were recruited in Sweden and Norway and stratified according to the gross motor function classification system levels I-V for children born 2000-2011, mean age 7.9 (SD 3.2). Construct validity based on the first questionnaire (n = 106) was evaluated for known groups, using linear regression analysis. Intraclass correlation coefficient was used to estimate test-retest reliability (n = 64), and Cronbach's alpha was calculated as an indicator of internal consistency., Results: The questionnaire showed construct validity and the ability to discriminate between levels of gross motor function for the total score and all domain scores (p < 0.05). Test-retest reliability was high with intraclass correlation coefficient of 0.92 for the total score and of 0.72-0.92 for the domain scores. Cronbach's alpha was 0.96 for the total score and 0.83-0.96 for the domain scores., Conclusions: The Scandinavian version of the CPCHILD for children with CP seems to be a valid and reliable proxy measure for health related quality of life. Implications for rehabilitation Valid and reliable outcome measures are needed to evaluate whether follow-up programs enhance health related quality of life in different countries. The Scandinavian version of the caregiver priorities and child health index of life with disabilities (CPCHILD) was evaluated for known-groups validity and test-retest reliability. The Scandinavian version of the CPCHILD is a sound and valid measurement for evaluation and comparison of health related quality of life of children with cerebral palsy in different countries.

Background and purpose - Pelvic obliquity, common in individuals with cerebral palsy (CP), changes the muscle force vector on the hip joint and probably affects the risk of hip dislocation. We evaluated a new method for measurement of hip displacement in CP that takes the pelvic obliquity into account: the pelvic adjusted migration percentage (PAMP). Children and methods - From the Swedish surveillance program for cerebral palsy (CPUP), the first pelvic radiograph of 268 children <18 years in southern Sweden during a 3-year period were evaluated. Pelvic obliquity, PAMP, and the migration percentage (MP) were measured. 50 radiographs were randomly selected for analysis of interrater reliability by three raters using the intraclass correlation coefficient (ICC). The correlations between PAMP/MP and pelvic obliquity were analyzed with Pearson correlation coefficients. Results - The interrater reliability for all 3 measurements was high (ICCs 0.88-0.97). The correlation between the high side of the pelvic obliquity and the difference between right and left hip displacement was higher for PAMP (r = 0.70) than for MP (r = 0.41). Interpretation - The new PAMP measurement showed high interrater reliability and a higher correlation with pelvic obliquity than MP. We suggest the use of PAMP at least in hips with a pelvic obliquity exceeding 5°.

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.

Aim: To identify the prevalence of knee contracture and its association with gross motor function, age, sex, spasticity, and muscle length in children with cerebral palsy (CP)., Method: Cross-sectional data for passive knee extension were analysed in 3 045 children with CP (1 756 males, 1 289 females; mean age 8y 1mo [SD 3.84]). CP was classified using the Gross Motor Function Classification System (GMFCS) levels I (n=1 330), II (n=508), III (n=280), IV (n=449), and V (n=478). Pearson's χ 2 test and multiple binary logistic regression were applied to analyse the relationships between knee contracture and GMFCS level, sex, age, spasticity, hamstring length, and gastrocnemius length., Results: Knee contracture greater than or equal to 5 degrees occurred in 685 children (22%). The prevalence of knee contracture was higher in older children and in those with higher GMFCS levels. Odds ratios (ORs) for knee contracture were significantly higher for children at GMFCS level V (OR=13.17), with short hamstring muscles (OR=9.86), and in the oldest age group, 13 years to 15 years (OR=6.80)., Interpretation: Knee contracture is associated with higher GMFCS level, older age, and shorter muscle length; spasticity has a small effect. Maintaining muscle length, especially of the hamstrings, is important for reducing the risk of knee contracture., What This Paper Adds: Knee contracture occurs in children with cerebral palsy at all Gross Motor Function Classification System (GMFCS) levels. Knee contracture in children is associated with short hamstring muscles, higher GMFCS level, and older age. Short hamstring muscles present a greater risk for knee contracture than spasticity., (© 2018 Mac Keith Press.)

Background: Postural asymmetries with seating problems are common in adults with cerebral palsy., Aims: To analyse the prevalence of asymmetrical limited hip flexion (<90°) in adults with CP, and to evaluate the association between asymmetrical limited hip flexion and postural asymmetries in the sitting position., Methods and Procedures: Cross-sectional data of 714 adults with CP, 16-73 years, GMFCS level I-V, reported to CPUP, the Swedish cerebral palsy national surveillance program and quality registry, from 2013 to 2015. Hip range of motion was analysed in relation to pelvic obliquity, trunk asymmetry, weight distribution, scoliosis and windswept hip distortion., Outcomes and Results: The prevalence of asymmetrical limited hip flexion increased as GMFCS level decreased. Of adults at GMFCS level V, 22% had asymmetrical limited hip flexion (<90°). The odds of having an oblique pelvis (OR 2.6, 95% CI:1.6-2.1), an asymmetrical trunk (OR 2.1, 95% CI:1.1-4.2), scoliosis (OR 3.7, 95% CI:1.3-9.7), and windswept hip distortion (OR 2.6, 95% CI:1.2-5.4) were higher for adults with asymmetrical limited hip flexion compared with those with bilateral hip flexion>90°., Conclusions and Implications: Asymmetrical limited hip flexion affects the seating posture and is associated with scoliosis and windswept hip distortion., (Copyright © 2017 The Authors. Published by Elsevier Ltd.. All rights reserved.)

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. 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.

The aim of this study was to examine the level of physical activity in adults with cerebral palsy (CP) and to analyse its relationship with physical activity as adolescents, pain, and gross motor function. A prospective cohort study was performed using data from the Swedish National CP Registry (CPUP) for all 129 individuals born in 1991-1993 living in Skåne and Blekinge who reported to CPUP at 14-16 years of age. Physical activity as adult was analysed relative to physical activity as adolescents, pain, and the Gross Motor Function Classification System (GMFCS). Seventy-one individuals at GMFCS I-V were followed up as adults and included in the analyses. Of these, 65% were physically active, but only 56% performed physical activity at least once a week. Their physical activity as adults differed relative to their physical activity as adolescents ( p = 0.011) but not to pain or GMFCS. Being physically active as an adolescent doubled the probability of being active as an adult (OR 2.1; p = 0.054), indicating that physical activity in adults with CP is related to their physical activity as adolescents. Therefore, interventions to increase physical activity among adolescents with CP are likely also to improve physical activity in adulthood.

Background: There is a lack of understanding of the factors that influence independent mobility and participation in meaningful activities. The purpose of this study was to analyse physical factors influencing independent use of manual and power wheelchairs in a total population of children with cerebral palsy (CP)., Methods: A cross-sectional study based on the most recent examination of all children with CP, born 2002-2013, reported into the Swedish cerebral palsy registry (CPUP), from January 2012 to June 2014. There were 2328 children (58 % boys, 42 % girls), aged 0-11 years, at all levels of gross motor function and hand function. Hazard ratios adjusted for age and sex were used to calculate the risk for not being able to self-propel based on Gross Motor Function Classification System (GMFCS) levels, upper extremity range of motion and hand function including Manual Ability Classification System (MACS), House functional classification system, Thumb-in-palm deformity, Zancolli (spasticity of wrist/finger flexors) and bimanual ability., Results: In total 858 children used wheelchairs outdoors (692 manual, 20 power, 146 both). Only 10 % of the 838 children self-propelled manual wheelchairs, while 90 % were pushed. In contrast 75 % of the 166 children who used power mobility outdoors were independent. Poor hand function was the greatest risk factor for being unable to self-propel a manual wheelchair, while classification as GMFCS V or MACS IV-V were the greatest risk factors for not being able to use a power wheelchair independently., Conclusions: The majority of children with CP, aged 0-11 years did not self-propel manual wheelchairs regardless of age, gross motor function, range of motion or manual abilities. Power mobility should be considered at earlier ages to promote independent mobility for all children with CP who require a wheelchair especially outdoors.