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1.
  • Ágústsson, Atli, et al. (author)
  • Preferred posture in lying and its association with scoliosis and windswept hips in adults with cerebral palsy
  • 2019
  • In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 41:26, s. 3198-3202
  • Journal article (peer-reviewed)abstract
    • 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.
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2.
  • Agustsson, Atli, et al. (author)
  • The effect of asymmetrical limited hip flexion on seating posture, scoliosis and windswept hip distortion
  • 2017
  • In: Research in Developmental Disabilities. - : Elsevier BV. - 0891-4222 .- 1873-3379. ; 71, s. 18-23
  • Journal article (peer-reviewed)abstract
    • 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 degrees.Conclusions and implications: Asymmetrical limited hip flexion affects the seating posture and is associated with scoliosis and windswept hip distortion.
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3.
  • Alriksson-Schmidt, Ann, et al. (author)
  • Follow-up of individuals with cerebral palsy through the transition years and description of adult life : the Swedish experience.
  • 2014
  • In: Journal of pediatric rehabilitation medicine. - 1875-8894. ; 7:1, s. 53-61
  • Journal article (peer-reviewed)abstract
    • OBJECTIVE: 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.METHODS: 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).RESULTS: Of the participants, 58 "lived with parents", 29 reported "independent living", and 15 reported "special service housing". Living arrangements differed among GMFCS levels (p< 0.001) and 14 of 20 with severe disabilities lived with their parents. Thirty-four of 70 reported personal assistance; use of assistance correlated (p< 0.001) with GMFCS (r(s) =0.71) and MACS (r(s) = 0.70). Thirty five were "students", 20 "employed", 36 in "daily activities", and 9 were "unemployed". Of those employed, 18 had GMFCS levels I-II.CONCLUSION: Some young adults with CP and severe functional limitations manage independent living - however, many still live with their parents. Although many are students, a large number are unemployed. There is disconnect between the pediatric and adult healthcare systems. CPUP may facilitate in making the transition smoother.
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4.
  • Alriksson-Schmidt, Ann I, et al. (author)
  • A combined surveillance program and quality register improves management of childhood disability
  • 2017
  • In: Disability and Rehabilitation. - : TAYLOR & FRANCIS LTD. - 0963-8288 .- 1464-5165. ; 39:8, s. 830-836
  • Journal article (peer-reviewed)abstract
    • 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 rehabilitationIndividuals 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. IMPLICATIONS FOR REHABILITATION Individuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions. Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions.
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5.
  • Alriksson-Schmidt, Ann, et al. (author)
  • Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP
  • 2019
  • In: Jmir Research Protocols. - Toronto, Canada : JMIR Publications Inc.. - 1929-0748. ; 8:10
  • Journal article (peer-reviewed)abstract
    • 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.
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6.
  • Asuman, Derek, et al. (author)
  • Pain and labor outcomes : A longitudinal study of adults with cerebral palsy in Sweden
  • 2023
  • In: Disability and Health Journal. - : Elsevier BV. - 1936-6574 .- 1876-7583. ; 16:3
  • Journal article (peer-reviewed)abstract
    • 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.& COPY; 2023 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
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7.
  • Casey, Jackie, et al. (author)
  • Incidence and sequence of scoliosis and windswept hip deformity : which comes first in 4148 children with cerebral palsy? A longitudinal cohort study
  • 2024
  • In: BMC Musculoskeletal Disorders. - : BioMed Central (BMC). - 1471-2474. ; 25:1
  • Journal article (peer-reviewed)abstract
    • BackgroundThe aim was to analyse whether scoliosis or windswept hip deformity (WSH) occurs first for children with cerebral palsy (CP).MethodsThis 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.ResultsWSH 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).ConclusionsWSH 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. 
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8.
  • Casey, Jackie, et al. (author)
  • Postural asymmetries, pain, and ability to change position of children with cerebral palsy in sitting and supine : a cross-sectional study
  • 2022
  • In: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 44:11, s. 2363-2371
  • Journal article (peer-reviewed)abstract
    • PurposeTo examine any associations between postural asymmetries, postural ability, and pain for children with cerebral palsy in sitting and supine positions.MethodsA 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.ResultsOver 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).ConclusionsAn 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.
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9.
  • Casey, Jackie, et al. (author)
  • Relationship between scoliosis, windswept hips and contractures with pain and asymmetries in sitting and supine in 2450 children with cerebral palsy
  • 2022
  • In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 44:22, s. 6738-6743
  • Journal article (peer-reviewed)abstract
    • 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 Rehabilitation The 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.
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10.
  • Cloodt, Erika, et al. (author)
  • Demographic and modifiable factors associated with knee contracture in children with cerebral palsy
  • 2018
  • In: Developmental Medicine & Child Neurology. - : John Wiley & Sons. - 0012-1622 .- 1469-8749. ; 60:4, s. 391-396
  • Journal article (peer-reviewed)abstract
    • AimTo 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).MethodCross-sectional data for passive knee extension were analysed in 3045 children with CP (1756 males, 1289 females; mean age 8y 1mo [SD 3.84]). CP was classified using the Gross Motor Function Classification System (GMFCS) levels I (n=1330), II (n=508), III (n=280), IV (n=449), and V (n=478). Pearson's chi(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.ResultsKnee 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). InterpretationKnee 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.
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11.
  • Cloodt, Erika, et al. (author)
  • Interrater reliability for unilateral and bilateral tests to measure the popliteal angle in children and youth with cerebral palsy
  • 2021
  • In: BMC Musculoskeletal Disorders. - : Springer Science and Business Media LLC. - 1471-2474. ; 22:1
  • Journal article (peer-reviewed)abstract
    • 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.
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12.
  • Cloodt, Erika, et al. (author)
  • Knee and ankle range of motion and spasticity from child-hood into adulthood : a longitudinal cohort study of 3,223 individuals with cerebral palsy
  • 2024
  • In: Acta Orthopaedica. - : Medical Journals Sweden. - 1745-3674 .- 1745-3682. ; 95, s. 200-205
  • Journal article (peer-reviewed)abstract
    • 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.
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13.
  • Cloodt, Erika, et al. (author)
  • Knee and foot contracture occur earliest in children with cerebral palsy : a longitudinal analysis of 2,693 children
  • 2021
  • In: Acta Orthopaedica. - : Medical Journals Sweden AB. - 1745-3674 .- 1745-3682. ; 92:2, s. 222-227
  • Journal article (peer-reviewed)abstract
    • 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.
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14.
  • Cloodt, Erika, et al. (author)
  • Sequence of flexion contracture development in the lower limb : a longitudinal analysis of 1,071 children with cerebral palsy
  • 2022
  • In: BMC Musculoskeletal Disorders. - : BioMed Central. - 1471-2474. ; 23:1
  • Journal article (peer-reviewed)abstract
    • 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 degrees. 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.
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15.
  • Degerstedt, Frida, 1974- (author)
  • Equity among children and youth with cerebral palsy : physical leisure activity, physical education, physiotherapy and quality of life
  • 2023
  • Doctoral thesis (other academic/artistic)abstract
    • Background & aim: Cerebral palsy (CP) is the most common reason for movement difficulties among children and youth in Sweden. Physiotherapy is usually introduced early in order to develop mobility and prevent further impairment, which in turn facilitates activity and participation. Physiotherapy is closely connected with physical activity, both as a goal and a mean, and physical activity contributes to aspects of health, in turn associated with quality of life (QoL). Physical education in school as well as physical leisure activity are important parts of the total physical activity participation among children and youth. Participation in physical leisure activity and physical education, as well as access to physiotherapeutic interventions, is insufficiently explored from an equity perspective regarding function, gender and ethnicity or birth country. The overall aim of the current thesis is to explore participation in physiotherapeutic interventions, physical leisure activity and physical education, as well as analyze the association between physical activity and quality of life, from an equity perspective for children and adolescents with CP in Sweden.Methods: The four papers that comprise this thesis are based upon three empirical studies: a National cross-sectional registry study (Papers I and II), based on the National Quality Registry Cerebral Palsy Follow-up Program (CPUP); an interview study with a qualitative approach (Paper III); and a national QoL survey complemented with registry data (IV). Quantitative data were analyzed with multivariable logistic-, linear- or quantile regressions. For the interview study, qualitative content analysis was used.Results: The number of participants in the registry studies were 2855 aged 0-18 years (Paper I) and 1935 aged 6-18 years (Paper II). The interview study (Paper III) included 11 participants aged 15-18 years, and the survey study (Paper IV) 149 participants, aged 15-18 years. Being born in Sweden entailed higher odds for participating in physiotherapy, physical leisure activity, physical education and physiotherapy, respectively, compared to those born outside Sweden (Paper I) or outside Europe (Paper II). More severe gross motor function difficulties were positively associated with higher odds of receiving physiotherapy, and negatively associated with physical activity participation (Paper II). Participants in the interviews report several examples of exclusion, struggles and (in-) sufficient support and inclusion through the categories ‘Exclusion and lack of support’, ‘Resistance, struggle and guilt’, and ‘Empowerment and support’. Gender as a vector in physical activity is mainly seen through the qualitative results, referring to physical education (Paper III). Frequent participation in physical leisure activity was associated with the domain Communication and physical health. Domains of QoL that referred to participation or function were negatively associated with having greater motor function difficulties, although not significantly associated with domains of social- and school wellbeing. Pain and bother is negatively associated with all five domains of QoL. Low educational level among the caregivers was associated with higher QoL-scores in the domain of social well-being (Paper IV).Discussion & Conclusions: The results that reveals differences regarding birth country indicates the relevance to raise awareness about possible inequity in participation in physical leisure activity, physical education, and physiotherapy for children and youth who have CP, as a prerequisite for improvement. Physiotherapists, school, and leisure sport leaders, as well as their organizations, need to be attentive to norms and bias in order to prevent inequity and discrimination due to for example birth country, gender or function, and provide support, which is included in the compensatory assignment of the schools and health care. This is emphasized by the experiences of exclusion expressed by participating youth with CP. Frequent physical activity participation is in part associated with higher QoL while Pain and bother is negatively associated with QoL, as is partly gross motor function difficulties. Prevention and treatment of pain and facilitation of physical activity is therefore important for children and youth with CP. Future studies should carefully consider targeting youth with a non-Nordic birth country and with large gross motor function difficulties or associated difficulties to widen knowledge about equity in physical activity- and physiotherapy participation, and QoL.
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16.
  • Hermanson, Maria, et al. (author)
  • Prediction of hip displacement in children with cerebral palsy : development of the CPUP hip score
  • 2015
  • In: The Bone & Joint Journal. - 2049-4408 .- 2049-4394. ; 97B:10, s. 1441-1444
  • Journal article (peer-reviewed)abstract
    • Hip displacement, defined in this study as a migration percentage (MP) of more than 40%, is a common, debilitating complication of cerebral palsy (CP). In this prospective study we analysed the risk of developing hip displacement within five years of the first pelvic radiograph. All children with CP in southern and western Sweden are invited to register in the hip surveillance programme CPUP. Inclusion criteria for the two groups in this study were children from the CPUP database born between 1994 and 2009 with Gross Motor Function Classification System (GMFCS) III to V. Group 1 included children who developed hip displacement, group 2 included children who did not develop hip displacement over a minimum follow-up of five years. A total of 145 children were included with a mean age at their initial pelvic radiograph of 3.5 years (0.6 to 9.7). The odds ratio for hip displacement was calculated for GMFCS-level, age and initial MP and head-shaft angle. A risk score was constructed with these variables using multiple logistic regression analysis. The predictive ability of the risk score was evaluated using the area under the receiver operating characteristics curve (AUC). All variables had a significant effect on the risk of a MP > 40%. The discriminatory accuracy of the CPUP hip score is high (AUC = 0.87), indicating a high ability to differentiate between high- and low-risk individuals for hip displacement. The CPUP hip score may be useful in deciding on further follow-up and treatment in children with CP.
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17.
  • Hägglund, Gunnar, et al. (author)
  • CPUP – från reaktiv till preventiv behandling av cerebral pares : Framgångsrik utveckling med CPUP - kombinerat uppföljningsprogram och kvalitetsregister
  • 2023
  • In: Lakartidningen. - 0023-7205. ; 120:46-47
  • Journal article (other academic/artistic)abstract
    • 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.
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18.
  • Hägglund, Gunnar, et al. (author)
  • Incidence of scoliosis in cerebral palsy : A population-based study of 962 young individuals
  • 2018
  • In: Acta Orthopaedica. - : Medical Journals Sweden AB. - 1745-3674 .- 1745-3682. ; 89:4, s. 443-447
  • Journal article (peer-reviewed)abstract
    • 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 degrees. No one in the highest level of motor function (GMFCS I) developed a Cobb angle > 40 degreesInterpretation - 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.
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19.
  • Hägglund, Gunnar, et al. (author)
  • Pelvic obliquity and measurement of hip displacement in children with cerebral palsy
  • 2018
  • In: Acta Orthopaedica. - : Medical Journals Sweden AB. - 1745-3674 .- 1745-3682. ; 89:6, s. 652-655
  • Journal article (peer-reviewed)abstract
    • 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 degrees.
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20.
  • Hägglund, Gunnar, et al. (author)
  • Prevention of dislocation of the hip in children with cerebral palsy : 20-year results of a population-based prevention programme.
  • 2014
  • In: The bone & joint journal. - 2049-4408. ; 96-B:11, s. 1546-52
  • Journal article (peer-reviewed)abstract
    • 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.
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21.
  • Hägglund, Gunnar, et al. (author)
  • Windswept hip deformity in children with cerebral palsy : a population-based prospective follow-up
  • 2016
  • In: Journal of Children's Orthopaedics. - : SAGE Publications. - 1863-2521 .- 1863-2548. ; 10:4, s. 275-279
  • Journal article (peer-reviewed)abstract
    • To analyze the development of windswept hip deformity (WS) in a total population of children with cerebral palsy (CP) up to 20 years of age, the association between WS and hip dislocation, and femoral varus osteotomy and scoliosis, and the impact of a hip surveillance program on the subsequent incidence of WS. This is a prospective study on children with CP in southern Sweden included in the Swedish follow-up programme and registry for CP (CPUP). All children born between 1990 and 1995 with CP were included; those born between 1990 and 1991 did not partake in the hip surveillance program until they were older (3-5 years of age) and served as a historic control group. Children born between 1992 and 1995 were included in the hip surveillance program from about 2 years of age and constituted the study group. In the control group, 12 of 68 children (18 %) developed WS. In the study group of 139 children, 13 (9 %) developed WS (p = 0.071). Of all 25 children with WS, 21 also developed scoliosis and 5 developed a hip dislocation. The number of children with WS starting in the lower extremities was significantly lower in the study group (p = 0.028). No difference between the two groups was seen regarding WS that started in combination with scoliosis. With early inclusion in a hip surveillance program and early treatment of contractures, it appears possible to reduce the frequency of WS starting in the lower extremities.
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22.
  • Jarl, Johan, et al. (author)
  • Health-related quality of life in adults with cerebral palsy living in Sweden and relation to demographic and disability-specific factors
  • 2019
  • In: Disability and Health Journal. - : ELSEVIER SCIENCE INC. - 1936-6574 .- 1876-7583. ; 12:3, s. 460-466
  • Journal article (peer-reviewed)abstract
    • 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. 
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23.
  • Krasny, Joanna, et al. (author)
  • Comparison of the six-minute walk test performed over a 15 and 30 m course by children with cerebral palsy
  • 2023
  • In: BMC Musculoskeletal Disorders. - : BioMed Central (BMC). - 1471-2474. ; 24
  • Journal article (peer-reviewed)abstract
    • 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.
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24.
  • Lindén, Olof, et al. (author)
  • The development of spasticity with age in 4,162 children with cerebral palsy : a register-based prospective cohort study
  • 2019
  • In: Acta Orthopaedica. - : Medical Journals Sweden AB. - 1745-3674 .- 1745-3682. ; 90:3, s. 286-291
  • Journal article (peer-reviewed)abstract
    • 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.
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25.
  • McAllister, Anita, et al. (author)
  • Eating and drinking ability and nutritional status in adults with cerebral palsy
  • 2022
  • In: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 64:8, s. 1017-1024
  • Journal article (peer-reviewed)abstract
    • 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.
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26.
  • Noten, Suzie, et al. (author)
  • An international clinical perspective on functioning and disability in adults with cerebral palsy
  • 2022
  • In: Disability and Health Journal. - : Elsevier BV. - 1936-6574 .- 1876-7583. ; 15:3
  • Journal article (peer-reviewed)abstract
    • 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.
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27.
  • Noten, Suzie, et al. (author)
  • ICF Core Sets for the assessment of functioning of adults with cerebral palsy
  • 2022
  • In: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 64:5, s. 569-577
  • Journal article (peer-reviewed)abstract
    • 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.
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28.
  • Noten, S., et al. (author)
  • Probability of independent walking and wheeled mobility in individuals with cerebral palsy
  • 2024
  • In: Developmental Medicine and Child Neurology. - 0012-1622. ; 66:3, s. 326-332
  • Journal article (peer-reviewed)abstract
    • 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.
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29.
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30.
  • Persson-Bunke, Måns, et al. (author)
  • Psychometric evaluation of spinal assessment methods to screen for scoliosis in children and adolescents with cerebral palsy
  • 2015
  • In: BMC Musculoskeletal Disorders. - : Springer Science and Business Media LLC. - 1471-2474. ; 16
  • Journal article (peer-reviewed)abstract
    • Background: In cerebral palsy (CP) there is an increased risk of scoliosis. It is important to identify a progressive scoliosis early-on because the results of surgery depend on the magnitude of the curve. The Swedish follow-up program for cerebral palsy (CPUP) includes clinical examinations of the spine. The reliability and validity of the assessment method have not been studied. In this study we evaluate the interrater reliability of the clinical spinal examination used in CPUP and scoliometer measurement in children with CP and we evaluate their validity compared to radiographic examination. Methods: Twenty-eight children (6-16 years) with CP in Gross Motor Function Classification System levels II-V were included. Clinical spinal examinations and scoliometer measurements in sitting position were performed by three independent examiners. The results were compared to the Cobb angle as determined by radiographic measurement. Interrater reliability was calculated using weighted kappa. Concurrent validity was analyzed using the Cobb angle as gold standard. Sensitivity, specificity, area under receiver operating characteristic curves (AUC) and likelihood ratios (LR) were calculated. Cut-off values for scoliosis were set to >= 20 degrees Cobb angle and >= 7 degrees scoliometer angle. Results: There was an excellent interrater reliability for both clinical examination (weighted kappa = 0.96) and scoliometer measurement (weighted kappa = 0.86). The clinical examination showed a sensitivity of 75 % (95 % CI: 19.4-99.4 %), specificity of 95.8 % (95 % CI: 78.9-99.9 %) and an AUC of 0.85 (95 % CI: 0.61-1.00). The positive LR was 18 and the negative LR was 0.3. The scoliometer measurement showed a sensitivity of 50 % (95 % CI: 6.8-93.2 %), specificity of 91.7 % (95 % CI: 73.0-99.0 %) and AUC of 0.71 (95 % CI: 0.42-0.99). The positive LR was 6 and the negative LR was 0.5. Conclusion: The psychometric evaluation of the clinical examination showed an excellent interrater reliability and a high concurrent validity compared to the Cobb angle. The findings should be interpreted cautiously until research with larger samples may further quantify the psychometric properties. Clinical spinal examinations seem appropriate as a screening tool to identify scoliosis in children with CP.
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31.
  • Pettersson, Katina, et al. (author)
  • Development of a risk score for scoliosis in children with cerebral palsy
  • 2020
  • In: Acta Orthopaedica. - : Medical Journals Sweden AB. - 1745-3674 .- 1745-3682. ; 91:2, s. 203-208
  • Journal article (peer-reviewed)abstract
    • 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.
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32.
  • Pettersson, Katina, et al. (author)
  • Living Conditions and Social Outcomes in Adults With Cerebral Palsy
  • 2021
  • In: Frontiers in Neurology. - : Frontiers Media S.A.. - 1664-2295. ; 12
  • Journal article (peer-reviewed)abstract
    • 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.
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33.
  • Pettersson, Katina, et al. (author)
  • Prevalence and goal attainment with spinal orthoses for children with cerebral palsy
  • 2019
  • In: Journal of Pediatric Rehabilitation Medicine. - : IOS PRESS. - 1874-5393 .- 1875-8894. ; 12:2, s. 197-203
  • Journal article (peer-reviewed)abstract
    • 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.
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34.
  • Pettersson, Katina, et al. (author)
  • Psychometric evaluation of the Scandinavian version of the caregiver priorities and child health index of life with disabilities
  • 2019
  • In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 41:2, s. 212-218
  • Journal article (peer-reviewed)abstract
    • 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.
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35.
  • Rodby-Bousquet, Elisabet, et al. (author)
  • Better Walking Performance in Older Children With Cerebral Palsy
  • 2012
  • In: Clinical Orthopaedics and Related Research. - : Ovid Technologies (Wolters Kluwer Health). - 0009-921X .- 1528-1132. ; 470:5, s. 1286-1293
  • Journal article (peer-reviewed)abstract
    • 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.
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36.
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37.
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38.
  • Rodby Bousquet, Elisabet, et al. (author)
  • Interrater reliability and construct validity of the posture and postural ability scale in adults with cerebral pulsy in supine, prone, siting and standing position
  • 2014
  • In: Clinical Rehabilitation. - : SAGE Publications. - 0269-2155 .- 1477-0873. ; 28:1, s. 82-90
  • Journal article (other academic/artistic)abstract
    • Objective To evaluate reliability, internal consistency and construct validity of the Posture and Postural Ability Scale for adults with cerebral palsy. Design Psychometric evaluation of a clinical assessment tool. Setting Rehabilitation Centres in Sweden and Iceland. Subjects Thirty adults with cerebral palsy aged 19-22 years, six people at each level I-V of the Gross Motor Function Classification System. Main measures The Posture and Postural Ability Scale contains a 7-point ordinal scale for postural ability in supine, prone, sitting, and standing and items for assessment of posture. Posture and postural ability was rated from photos and videos by three independent assessors. Interrater reliability was calculated using weighted Kappa. Internal consistency was analysed with Cronbach’s alpha if item deleted and corrected item-total correlation. Construct validity was evaluated based on known groups, using Jonckheere Terpstra for averaged values of the three raters relative to the Gross Motor Function Classification System. Results There was an excellent interrater reliability (kappa=0.85-0.99) and a high internal consistency (alpha=0.96-0.97, item-total correlation=0.60-0.91). Median values differed (p<0.02) between known groups represented by the levels of gross motor function, showing construct validity for all items. Conclusion The Posture and Postural Ability scale showed an excellent interrater reliability for experienced raters, a high internal consistency and construct validity. It can detect postural asymmetries in adults with cerebral palsy at all levels of gross motor function.
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39.
  • Rodby-Bousquet, Elisabet, et al. (author)
  • Physical risk factors influencing wheeled mobility in children with cerebral palsy : a cross-sectional study
  • 2016
  • In: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 16
  • Journal article (peer-reviewed)abstract
    • 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.
  •  
40.
  • Rodby-Bousquet, Elisabet, et al. (author)
  • Postural Asymmetries and Assistive Devices Used by Adults With Cerebral Palsy in Lying, Sitting, and Standing
  • 2021
  • In: Frontiers in Neurology. - : Frontiers Media S.A.. - 1664-2295. ; 12
  • Journal article (peer-reviewed)abstract
    • 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.
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41.
  • Rodby-Bousquet, Elisabet, et al. (author)
  • Postural asymmetries in young adults with cerebral palsy
  • 2013
  • In: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 55:11, s. 1009-1015
  • Journal article (peer-reviewed)abstract
    • AimThe purpose was to describe posture, ability to change position, and association between posture and contractures, hip dislocation, scoliosis, and pain in young adults with cerebral palsy (CP). MethodsCross-sectional data of 102 people (63 males, 39 females; age range 19-23y, median 21y) out of a total population with CP was analysed in relation to Gross Motor Function Classification System (GMFCS) levels I (n=38), II (n=21), III (n=13), IV (n=10), and V (n=20). The CP subtypes were unilateral spastic (n=26), bilateral spastic (n=45), ataxic (n=12), and dyskinetic CP (n=19). The Postural Ability Scale was used to assess posture. The relationship between posture and joint range of motion, hip dislocation, scoliosis, and pain was analysed using logistic regression and Spearman's correlation. ResultsAt GMFCS levels I to II, head and trunk asymmetries were most common; at GMFCS levels III to V postural asymmetries varied with position. The odds ratios (OR) for severe postural asymmetries were significantly higher for those with scoliosis (OR=33 sitting), limited hip extension (OR=39 supine), or limited knee extension (OR=37 standing). Postural asymmetries correlated to hip dislocations: supine (r(s)=0.48), sitting (r(s)=0.40), standing (r(s)=0.41), and inability to change position: supine (r(s)=0.60), sitting (r(s)=0.73), and standing (r(s)=0.64). ConclusionsPostural asymmetries were associated with scoliosis, hip dislocations, hip and knee contractures, and inability to change position.
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42.
  • Rodby Bousquet, Elisabet (author)
  • Posture, postural ability and mobility in cerebral palsy
  • 2012
  • Doctoral thesis (other academic/artistic)abstract
    • Cerebral palsy (CP) is the most common cause of motor disability in children and adolescents with a prevalence of 2-3/1000. CP is characterized by disorders of posture and movement with impairments ranging from mild to severe. The ability to control posture is an important prerequisite for all voluntary movements. A sustained asymmetric posture predisposes to progressive deformities in people with CP, such as scoliosis, hip dislocations and contractures. The aim of this thesis was to enhance knowledge of posture, postural ability and mobility in people with CP, their use of assistive devices and also to evaluate a clinical tool for assessment of posture and postural ability. Study I-III were cross-sectional studies of 562 children with CP, aged 3-18 years, describing sitting, standing, sit-to-stand and the use of assistive devices, wheeled mobility, and walking performance according to the Functional Mobility Scale. The results were analyzed relative to the expanded and revised version of the Gross Motor Function Classification System (GMFCS), neurological subtype and age. Study IV was a cross-sectional study describing postural asymmetries and ability to change position in 102 young adults with CP aged 19-23 years; and the relation of posture to pain, range of motion, hip dislocation, scoliosis and ability to change position. Study V evaluated the psychometric properties of the Posture and Postural Ability Scale for adults with CP at GMFCS I-V. The GMFCS is a good predictor of sitting and standing performance. Powered wheelchairs provided independent mobility in most cases while few self-propelled their manual wheelchairs. To achieve a high level of independent mobility, powered wheelchairs should be considered at an early age for children with impaired walking ability. The number of children who walked without aids increased up to 7 years, but the proportion of children walking independently on uneven surfaces was incrementally higher in each age group up to 18 years. Postural asymmetries were associated with scoliosis, hip dislocation, hip and knee contractures, and inability to change position. The Posture and Postural Ability scale showed an excellent interrater reliability for experienced raters, a high internal consistency and construct validity. It can detect postural asymmetries in adults with CP at all levels of gross motor function.
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43.
  • Rodby-Bousquet, Elisabet, et al. (author)
  • Prevalence of pain and interference with daily activities and sleep in adults with cerebral palsy
  • 2021
  • In: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 63:1, s. 60-67
  • Journal article (peer-reviewed)abstract
    • 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.
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44.
  • Rodby-Bousquet, Elisabet, et al. (author)
  • Psychometric evaluation of the Posture and Postural Ability Scale for children with cerebral palsy
  • 2016
  • In: Clinical Rehabilitation. - : SAGE Publications. - 0269-2155 .- 1477-0873. ; 30:7, s. 697-704
  • Journal article (peer-reviewed)abstract
    • OBJECTIVE: To evaluate construct validity, internal consistency and inter-rater reliability of the Posture and Postural Ability Scale for children with cerebral palsy.DESIGN: Evaluation of psychometric properties.SETTING: Five child rehabilitation centres in the south of Sweden, in November 2013 to March 2014.SUBJECTS: A total of 29 children with cerebral palsy (15 boys, 14 girls), 6-16 years old, classified at Gross Motor Function Classification System (GMFCS) levels II (n = 10), III (n = 7), IV (n = 6) and V (n = 6).MAIN MEASURES: Three independent raters (two physiotherapists and one orthopaedic surgeon) assessed posture and postural ability of all children in supine, prone, sitting and standing positions, according to the Posture and Postural Ability Scale. Construct validity was evaluated based on averaged values for the raters relative to known-groups in terms of GMFCS levels. Internal consistency was analysed with Cronbach's alpha and corrected Item-Total correlation. Inter-rater reliability was calculated using weighted kappa scores.RESULTS: The Posture and Postural Ability Scale showed construct validity and median values differed between GMFCS levels (p < 0.01). There was a good internal consistency (alpha = 0.95-0.96; item-total correlation = 0.55-0.91), and an excellent inter-rater reliability (kappa score = 0.77-0.99).CONCLUSION: The Posture and Postural Ability Scale shows high psychometric properties for children with cerebral palsy, as previously seen when evaluated for adults. It enables detection of postural deficits and asymmetries indicating potential need for support and where it needs to be applied.
  •  
45.
  • Rodby-Bousquet, Elisabet, et al. (author)
  • Sitting and standing performance in a total population of children with cerebral palsy : a cross-sectional study
  • 2010
  • In: BMC Musculoskeletal Disorders. - : Springer Science and Business Media LLC. - 1471-2474. ; 11, s. 131-
  • Journal article (peer-reviewed)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 19902005 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.
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46.
  •  
47.
  • Rodby-Bousquet, Elisabet (author)
  • The power of mobility
  • 2018
  • In: Developmental Medicine & Child Neurology. - : WILEY. - 0012-1622 .- 1469-8749. ; 60:10, s. 968-969
  • Journal article (other academic/artistic)
  •  
48.
  • Rodby-Bousquet, Elisabet, et al. (author)
  • Use of manual and powered wheelchair in children with cerebral palsy : a cross-sectional study
  • 2010
  • In: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 10, s. 59-
  • Journal article (peer-reviewed)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.
  •  
49.
  • Romin, Elinor, et al. (author)
  • Sit-to-stand performance in children with cerebral palsy : a population-based cross-sectional study
  • 2024
  • In: BMC Musculoskeletal Disorders. - : BioMed Central (BMC). - 1471-2474. ; 25:1
  • Journal article (peer-reviewed)abstract
    • 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.
  •  
50.
  • Stadskleiv, K., et al. (author)
  • Systematic Monitoring of Cognition for Adults With Cerebral Palsy-The Rationale Behind the Development of the CPCog-Adult Follow-Up Protocol
  • 2021
  • In: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 12
  • Journal article (peer-reviewed)abstract
    • 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 CPCog, 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 CPCog-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 CPCog-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.
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