| 1. |
- Ágústsson, Atli, et al.
(författare)
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Preferred posture in lying and its association with scoliosis and windswept hips in adults with cerebral palsy
- 2019
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 41:26, s. 3198-3202
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Tidskriftsartikel (refereegranskat)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.
(författare)
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The effect of asymmetrical limited hip flexion on seating posture, scoliosis and windswept hip distortion
- 2017
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Ingår i: Research in Developmental Disabilities. - : Elsevier BV. - 0891-4222 .- 1873-3379. ; 71, s. 18-23
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Tidskriftsartikel (refereegranskat)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.
(författare)
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Follow-up of individuals with cerebral palsy through the transition years and description of adult life : the Swedish experience.
- 2014
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Ingår i: Journal of pediatric rehabilitation medicine. - 1875-8894. ; 7:1, s. 53-61
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Tidskriftsartikel (refereegranskat)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.
(författare)
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A combined surveillance program and quality register improves management of childhood disability
- 2017
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Ingår i: Disability and Rehabilitation. - : TAYLOR & FRANCIS LTD. - 0963-8288 .- 1464-5165. ; 39:8, s. 830-836
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Tidskriftsartikel (refereegranskat)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.
(författare)
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Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP
- 2019
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Ingår i: Jmir Research Protocols. - Toronto, Canada : JMIR Publications Inc.. - 1929-0748. ; 8:10
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Tidskriftsartikel (refereegranskat)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.
(författare)
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Pain and labor outcomes : A longitudinal study of adults with cerebral palsy in Sweden
- 2023
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Ingår i: Disability and Health Journal. - : Elsevier BV. - 1936-6574 .- 1876-7583. ; 16:3
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Tidskriftsartikel (refereegranskat)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.
(författare)
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Incidence and sequence of scoliosis and windswept hip deformity : which comes first in 4148 children with cerebral palsy? A longitudinal cohort study
- 2024
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Ingår i: BMC Musculoskeletal Disorders. - : BioMed Central (BMC). - 1471-2474. ; 25:1
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Tidskriftsartikel (refereegranskat)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.
(författare)
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Postural asymmetries, pain, and ability to change position of children with cerebral palsy in sitting and supine : a cross-sectional study
- 2022
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Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 44:11, s. 2363-2371
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Tidskriftsartikel (refereegranskat)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.
(författare)
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Relationship between scoliosis, windswept hips and contractures with pain and asymmetries in sitting and supine in 2450 children with cerebral palsy
- 2022
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 44:22, s. 6738-6743
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Tidskriftsartikel (refereegranskat)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.
(författare)
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Demographic and modifiable factors associated with knee contracture in children with cerebral palsy
- 2018
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Ingår i: Developmental Medicine & Child Neurology. - : John Wiley & Sons. - 0012-1622 .- 1469-8749. ; 60:4, s. 391-396
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Tidskriftsartikel (refereegranskat)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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