| 1. |
- 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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| 2. |
- Alriksson-Schmidt, Ann I., et al.
(författare)
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Flaunting our assets. Making the most of the Nordic registry goldmine : Cerebral palsy as an example
- 2020
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Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 48:1, s. 113-118
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Tidskriftsartikel (refereegranskat)abstract
- Aims:To describe the early experiences of a Nordic multidisciplinary cerebral palsy (CP) registry research program combining data from national medical quality registries, follow-up programs and cohort data, in addition to data from other national registries; to explore the scientific and practical uses of such research, and provide recommendations for facilitating similar work in the future. Methods: The work was divided into three themes: medical outcomes, social and public health outcomes, and health economics; and three cross-cutting teams: a reference team, a challenge team, and a communication and dissemination team. Initially each country will perform domestic research, and in the second stage data will be merged across all Nordic countries. Data from national registries with vital statistics, education and work, social benefits, and healthcare will be used. Comparisons will be matched for both the individuals with CP and their parents. Results: Initial work has been done on agreeing which variables to request from the respective agencies and planning the correct procedures and steps required to acquire the data. As of 2018, Sweden, Norway, and Finland have received approved ethics board applications. Iceland and Denmark are waiting for their approvals. A webpage and a platform for internal communication have been created. Conclusions: Nordic register research has great potential. Linking national CP quality registries and follow-up programs with other large national registries holds particular promise because problems identified through research can be applied at a population level. It is imperative that ethical clearance and data delivery processes are streamlined and transparent, and that data variables are measured the same way in the different countries.
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| 3. |
- Alriksson-Schmidt, Ann I, et al.
(författare)
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Living life with cerebral palsy? A description of the social safety nets for individuals with cerebral palsy in the Nordic countries
- 2021
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Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications. - 1651-1905 .- 1403-4948. ; 49:6, s. 653-665
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Forskningsöversikt (refereegranskat)abstract
- AIMS: This report reviews major laws, acts and regulations of social benefits and services for individuals with disabilities, focusing on cerebral palsy in the five Nordic countries. It summarizes the available benefits and services and the re-application process and provides comparative analyses among the countries.METHODS: Published reports, articles and relevant government and municipal websites were reviewed for each respective country and used to compile an overview and comparison between the countries.RESULTS: In the Nordic countries, there are a number of laws and regulations in place to support individuals with cerebral palsy and their families. In addition, there are numerous social benefits available for which individuals with disabilities can apply. Although there are national differences, the similarities across the five countries regarding laws, social benefits offered for individuals with cerebral palsy and the application processes are clear. However, the application processes seem cumbersome and, at times, redundant. Physicians and other healthcare specialists repeatedly need to write 'medical certificates' describing the diagnosis and its consequences for a disability that is chronic and lifelong.CONCLUSIONS: Participation in society for individuals with cerebral palsy disabilities can be enabled by social benefits. By extension, social benefits may indirectly have implications for public health in individuals with disabilities. Although the lives of individuals with cerebral palsy - as with others - can improve in certain areas, the need for social benefits will generally increase, not decrease, over time. Although it is clearly important to have checks and balances that prevent system misuse, it might be worthwhile from a cost-benefit perspective to investigate whether the current systems could be improved to better manage time and resources and avoid emotional distress by streamlining the application process.
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| 4. |
- Andersen, Randi Dovland, et al.
(författare)
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Pain burden in children with cerebral palsy (CPPain) survey : Study protocol
- 2022
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Ingår i: Paediatric and Neonatal Pain. - : John Wiley & Sons. - 2379-5824 .- 2637-3807. ; 4:1, s. 11-21
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Tidskriftsartikel (refereegranskat)abstract
- Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.
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| 5. |
- Hägglund, Gunnar, et al.
(författare)
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Treatment of spasticity in children and adolescents with cerebral palsy in Northern Europe : a CP-North registry study
- 2021
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Ingår i: BMC Neurology. - : Springer Science and Business Media LLC. - 1471-2377. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Spasticity is present in more than 80% of the population with cerebral palsy (CP). The aim of this study was to describe and compare the use of three spasticity reducing methods; Botulinum toxin-A therapy (BTX-A), Selective dorsal rhizotomy (SDR) and Intrathecal baclofen therapy (ITB) among children and adolescents with CP in six northern European countries.METHODS: This registry-based study included population-based data in children and adolescents with CP born 2002 to 2017 and recorded in the follow-up programs for CP in Sweden, Norway, Denmark, Iceland and Scotland, and a defined cohort in Finland.RESULTS: A total of 8,817 individuals were included. The proportion of individuals treated with SDR and ITB was significantly different between the countries. SDR treatment ranged from 0% ( Finland and Iceland) to 3.4% (Scotland) and ITB treatment from 2.2% (Sweden) to 3.7% (Denmark and Scotland). BTX-A treatment in the lower extremities reported 2017-2018 ranged from 8.6% in Denmark to 20% in Norway (p < 0.01). Mean age for undergoing SDR ranged from 4.5 years in Norway to 7.3 years in Denmark (p < 0.01). Mean age at ITB surgery ranged from 6.3 years in Norway to 10.1 years in Finland (p < 0.01). Mean age for BTX-A treatment ranged from 7.1 years in Denmark to 10.3 years in Iceland (p < 0.01). Treatment with SDR was most common in Gross Motor Function Classification System (GMFCS) level III, ITB in level V, and BTX-A in level I. The most common muscle treated with BTX-A was the calf muscle, with the highest proportion in GMFCS level I. BTX-A treatment of hamstring and hip muscles was most common in GMFCS levels IV-V in all countries.CONCLUSION: There were statistically significant differences between countries regarding the proportion of children and adolescents with CP treated with the three spasticity reducing methods, mean age for treatment and treatment related to GMFCS level. This is likely due to differences in the availability of these treatment methods and/or differences in preferences of treatment methods among professionals and possibly patients across countries.
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| 6. |
- Jeglinsky, Ira
(författare)
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Family-centredness in services and rehabilitation planning for children and youth with cerebral palsy in Finland
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Objectives: The overall aim of this thesis was to explore and describe the family-centredness and rehabilitation planning procedure for children and youth with cerebral palsy (CP) in Finland. The main focus was on how professionals working with children and youth with cerebral palsy describe and document the rehabilitation planning procedure and how family-centredness was perceived by professionals and parents. Methods: Participants were team members in neuropediatric multidisciplinary teams in central and university hospitals and government special schools as well as physiotherapy private practitioners who had an agreement with the Social Insurance Institution. Parents visiting two university hospital neuropediatric wards participated in one study (II). Family-centredness in services (FCS) was evaluated by the Measure of Processes of Care questionnaires. To get a deeper insight in the rehabilitation planning procedure, focus group interviews were conducted. Two researchers conducted the interviews which were tape recorded and transcribed. Three content areas guided the interviews: goal-setting, different transition phases and the use of the International Classification of Functioning, Disability and Health, Children and Youth version. A retrospective cross-sectional register study was used to analyze the interrelation between needs and functional difficulties and the therapeutic goals in written rehabilitation plans. The ICF-CY was used as a reference in the analysis. Results: Professionals and parents rated the family-centred service as fair to moderate. There was a significant difference in how professionals of different disciplines rated their FCS delivery. Professionals with more than 25 years of work experience in the field of rehabilitation for children and youth with CP rated their service higher than those with shorter work experience. Parents and professionals identified common aspects in need of development, i.e. letting the family choose when and what kind of information is provided as well as providing opportunities for the whole family to obtain information. Goal setting and ways to involve families in the rehabilitation planning procedure was experienced as challenging. Collaboration with all involved in the child ́s rehabilitation was partly scanty and the results indicate a lack of routines in the transition phases. In the written rehabilitation plans the goals were not well reflected in the children ́s needs and functional difficulties. Conclusion: This thesis identified examples in the rehabilitation planning procedure of good practice in which collaboration with various parties and clear formal processes occurred. Areas in need of development were also identified. Standardized formal programme processes and policies and a named care manager for all families could provide a starting point in developing and improving the services to ensure all families have the possibility to be involved in their child ́s rehabilitation service.
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| 7. |
- Jeglinsky, Ira, et al.
(författare)
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Prevalence and treatment of hip displacement in children with cerebral palsy in Finland
- 2022
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Ingår i: Journal of Children's Orthopaedics. - : SAGE Publications. - 1863-2521 .- 1863-2548. ; 16:2, s. 128-135
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The aim was to study the prevalence of hip displacements, dislocations, and the hip surgeries performed in a Finnish cohort of children with cerebral palsy not followed up in a hip surveillance program and to compare these with previous studies performed in Northern European countries before and after the implementation of hip surveillance programs.Methods: A cross-sectional study. A cohort including 480 children with cerebral palsy, born during the period 2000-2018, not enrolled in a hip surveillance program. Migration percentages were recorded from hip radiographs, age at first hip surgery and type of surgery was extracted from medical records. In a separate analysis, the inclusion criteria were adapted to fit two studies analyzing hip dislocation and hip surgery in Sweden, Norway, and Scotland before and after the implementation of a hip surveillance program. Chi-square tests were used to assess differences in proportions between the groups.Results: In total, 286 children (60%) have had at least one hip radiograph. Of these, 10 (3.5%) developed hip dislocation, which is more than in children of countries with hip surveillance programs (Sweden 0.7%, Scotland 1.3%, p < 0.001). Initial surgery to prevent hip dislocation was performed at an older age ( p < 0.001). Conclusion: Children with cerebral palsy in Finland not participating in a surveillance hip program were more likely to undergo hip surgery at an older age and to develop hip displacements and dislocations. The results support the effectiveness of surveillance programs to prevent hip dislocation in children with cerebral palsy.Level of evidence: III.
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| 8. |
- Lindén, Ulrika, et al.
(författare)
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Hemrehabilitering för äldre i Mariehamn
- 2014
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Ingår i: Nordic Congress of Gerontology, Gothenburg, 25-28 May 2014.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 9. |
- Stockman, Jessica, et al.
(författare)
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Ankle-foot orthoses among children with cerebral palsy : a cross-sectional population-based register study of 8,928 children living in Northern Europe
- 2023
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Ingår i: BMC Musculoskeletal Disorders. - : BMC. - 1471-2474. ; 24:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Cerebral palsy (CP) is an umbrella term where an injury to the immature brain affects muscle tone and motor control, posture, and at times, the ability to walk and stand. Orthoses can be used to improve or maintain function. Ankle-foot orthoses (AFOs) are the most frequently used orthoses in children with CP. However, how commonly AFOs are used by children and adolescents with CP is still unknown. The aims of this study were to investigate and describe the use of AFOs in children with CP in Sweden, Norway, Finland, Iceland, Scotland, and Denmark, and compare AFO use between countries and by gross motor function classification system (GMFCS) level, CP subtype, sex, and age.METHOD: Aggregated data on 8,928 participants in the national follow-up programs for CP for the respective countries were used. Finland does not have a national follow-up program for individuals with CP and therefore a study cohort was used instead. Use of AFOs were presented as percentages. Logistic regression models were used to compare the use of AFOs among countries adjusted for age, CP subtype, GMFCS level, and sex.RESULTS: The proportion of AFO use was highest in Scotland (57%; CI 54-59%) and lowest in Denmark (35%; CI 33-38%). After adjusting for GMFCS level, children in Denmark, Finland, and Iceland had statistically significantly lower odds of using AFOs whereas children in Norway and Scotland reported statistically significantly higher usage than Sweden.CONCLUSION: In this study, the use of AFOs in children with CP in countries with relatively similar healthcare systems, differed between countries, age, GMFCS level, and CP subtype. This indicates a lack of consensus as to which individuals benefit from using AFOs. Our findings present an important baseline for the future research and development of practical guidelines in terms of who stands to benefit from using AFOs.
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