| 1. |
- 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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| 2. |
- Alriksson-Schmidt, Ann I, et al.
(författare)
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CP-North: living life in the Nordic countries? : A retrospective register research protocol on individuals with cerebral palsy and their parents living in Sweden, Norway, Denmark, Finland and Iceland
- 2019
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 9:10
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Cerebral palsy (CP) is one of the most common neurodevelopmental disabilities. Yet, most individuals with CP are adults. How individuals with CP fare in terms of health, quality of life (QoL), education, employment and income is largely unknown. Further, little is known about the effects of having a child with CP on the parents. The Nordic countries are known for their strong welfare systems, yet it is unknown to what extent the added burden related to disability is actually compensated for. We will explore how living with CP affects health, QoL, healthcare utilisation, education, labour market outcomes, socioeconomic status and mortality throughout the lifespan of individuals with CP and their parents. We will also investigate if these effects differ between subgroups, within and across the Nordic countries. METHODS AND ANALYSES: CP-North is a multidisciplinary 4-year (1 August 2017 to 31 July 2021) register research project. The research consortium comprises researchers and users from Sweden, Norway, Denmark, Iceland and Finland. Data from CP registries and follow-up programmes, or cohorts of individuals with CP, will be merged with general national registries. All individual studies are structured under three themes: medical outcomes, social and public health outcomes, and health economics. Both case-control and cohort designs will be included depending on the particular research question. Data will be analysed in the individual countries and later merged across nations.ETHICS AND DISSEMINATION: The ethics approval processes in each individual country are followed. Findings will be published (open access) in international peer-reviewed journals in related fields. Updates on CP-North will be published online at http://rdi.arcada.fi/cpnorth/en/.
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| 3. |
- 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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| 4. |
- Hägglund, Gunnar, et al.
(författare)
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Back pain is more frequent in girls and in children with scoliosis in the context of cerebral palsy
- 2019
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Ingår i: Acta Paediatrica, International Journal of Paediatrics. - : Wiley. - 0803-5253. ; 108:12, s. 2229-2234
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To investigate the prevalence of general and back pain in children with cerebral palsy and the relationships between scoliosis and back pain. Methods: Cross-sectional register study based on data from the Swedish Cerebral Palsy Follow-Up Programme. Descriptive analyses and logistic regression to regress age, sex, gross motor function, windswept, hip extension and source of report on the presence of pain. Results: The study included 3783 children (58% boys) 1-18 (mean 10.0) years of age. General pain was reported in 1538 (44% girls, 38% boys) and back pain in 226 (7% girls, 5% boys) children. The proportion of back pain increased from <4% prior to age 12 years to >12% from 16 years of age. Back pain increased from 4% in children without scoliosis to 16% in children with severe scoliosis. Moderate/severe back pain increased from 2% in children without scoliosis to 10% in children with severe scoliosis. Increased odds of reporting back pain were found for age, girls, low gross motor function and children with scoliosis. Conclusion: The proportion of children with general pain increased with age and was more frequent in girls. Age, female sex, low gross motor function and scoliosis were significant predictors of back pain.
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| 5. |
- Marcström, Alexander, et al.
(författare)
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Hip pain in children with cerebral palsy : A population-based registry study of risk factors 11 Medical and Health Sciences 1103 Clinical Sciences
- 2019
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Ingår i: BMC Musculoskeletal Disorders. - : Springer Science and Business Media LLC. - 1471-2474. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Hip pain is prevalent in children with cerebral palsy (CP). Hip displacement is a known risk factor for hip pain. However, many children do not have displaced hips but still have hip pain and the aetiologies are poorly understood. The aims of this study were to investigate: 1. the prevalence of hip pain related to age, gender, gross motor function, degree of hip displacement and 2. the associations between hip pain and age, gender, gross motor function, degree of hip displacement, ranges of hip and knee motion (ROM) and degree of spasticity in the muscles around the hip. Methods: This was a cross-sectional retrospective register study based on data from the Swedish follow-up programme and national healthcare registry CPUP, which includes > 95% of children with CP in Sweden. The participants were born in 2000 or later and 4-16 years of age. Data from the latest examination were used. In Aim 1, the prevalence of hip pain was calculated using frequencies and crosstabs. Differences between groups were calculated using chi-square tests and independent samples t-tests. In Aim 2, associations between hip pain and the variables were analysed using logistic regression. Results: The overall prevalence of hip pain was 7%. No significant gender difference was found. Hip pain prevalence increased with age, lower gross motor function and higher degree of hip displacement. The median migration percentage (MP) in painful hips was 26%, compared to 21% in hips where pain was not reported. In the multivariable analysis, significant associations with hip pain were found for MP > 30% and decreased ROM in abduction, flexion and inwards rotation of the hip (p < 0.05). Conclusion: Hip displacement was associated with hip pain. However, hip displacement was not present in the majority of painful hips. In addition to hip displacement, decreased ROM was also associated with hip pain.
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