Prevalence and treatment of hip displacement in children with cerebral palsy in Finland.

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.

Living life with cerebral palsy? A description of the social safety nets for individuals with cerebral palsy in the Nordic countries.

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.

Profiles of functioning of children with cerebral palsy in Finland: analysis of multi-professional family meetings.

PURPOSE: To explore what aspects of and how the child's functioning are discussed during a multi-professional team meeting when planning goals and interventions for rehabilitation. MATERIALS AND METHODS: Multiprofessional rehabilitation meetings were videotaped, the discussions transcribed and all content related to the child's function was linked to the International Classification of Functioning, Disability and Health comprehensive Core Set for children with cerebral palsy. RESULTS: Thirteen families gave their informed consent to participate. In nine meetings the child was present and one or two parents attended all meetings. The mean age of the children was 10 years (3-17 years). Functioning was described as wide-ranging and covered most components of the International Classification of Functioning, Disability and Health. Body structures were mentioned rarely, and of body functions, musculoskeletal functions were most commonly discussed. The focus was on activities and participation, the most discussed aspects being learning, applying knowledge and mobility. CONCLUSIONS: The results showed that both children and their parents were involved when rehabilitation was planned. The comprehensive ICF Core Set for children and young people with CP was in this study used to analyze the areas of functioning discussed, but could also be useful in clinical practice to identify relevant areas of functioning.IMPLICATIONS FOR REHABILITATIONIdentifying areas of functioning facilitate communication among families and multi-disciplinary professionals during rehabilitation team meetings.Important areas of participation are overlooked during intervention planning meetings, which could be improved using ICF-based tools.The comprehensive ICF Core Set for cerebral palsy is a useful framework to identify areas of functioning in Finland.

Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP.

BACKGROUND: Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population. OBJECTIVE: The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP. METHODS: MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed. RESULTS: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained. CONCLUSIONS: In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13883.

Feasibility and psychometric properties of the Finnish version of the measure of processes of care for adults.

OBJECTIVE:: To assess the psychometric properties and feasibility of the Finnish translation of the measure of processes of care for adults (MPOC-A) when used in an inpatient rehabilitation setting. DESIGN:: A feasibility study. SETTINGS:: Inpatient rehabilitation settings. SUBJECTS:: A total of 858 people with severe neurological disabilities, musculoskeletal problems, and mental disorders were recruited to the study. METHODS:: The MPOC-A questionnaire is a self-administered questionnaire consisting of 34 items in five-factorial domains. The construct validity of the translated questionnaire was evaluated using confirmatory factor analysis. To compare the fit of the model to the fit of the independent null-model Comparative Fit Index was used. Internal consistency for the total scale and subscales was calculated using Cronbach's alpha reliability coefficient. RESULTS:: A total of 554 people, mean age 52 years (SD = 9), participated in the study. Most of the responders had musculoskeletal problems ( n = 328, 57%). The respondents rated the client-centeredness in rehabilitation service as moderate ( m = 5.40, SD = 0.81). The five-factor and the one-factor model fitted the data well according to all three indices. Internal consistency showed high reliability between the one-factor and five-factor models for all except one domain (0.49-0.93). The mean for Person Infit for the people with neurological disabilities was higher than for the other two groups ( m = 1.77, SD = 1.32) indicating less predictable response patterns in this group. CONCLUSION:: The results confirm the appropriate psychometric properties of the Finnish version of the MPOC-A, especially for people with musculoskeletal problems and those with mental health disorders.

Reliability of Measuring Lower-Limb-Muscle Electromyography Activity Ratio in Activities of Daily Living With Electrodes Embedded in the Clothing.

CONTEXT: Using technical clothes with electrodes embedded in the clothing makes it possible to record the electrical activity produced by the activity of the skeletal muscles in activities of daily living. OBJECTIVE: To investigate the reliability of measuring lower-limb left-right electromyography (EMG) activity ratio with smart shorts during stair descent, stair ascent, and repeated unloaded squats among healthy working-aged subjects. METHODS: Seventeen females (mean age 25.5 y), and 17 males (mean age 29.9 y) participated in this test-retest protocol carried out twice on the same day. RESULTS: Intraclass correlation coefficient (ICC) varied from .65 to .80 in the different activities. Mean difference and limits of agreement (LOA) between the repeated measurements were for descending stairs ­0.8%, LOA ­6.2% to 4.7%; for ascending stairs ­0.9%, ­6.5% to 4.7%; and for squats ­0.2%, ­5.4% to 4.9%. The coefficient of repeatability for descending stairs was 5.6%, for ascending stairs 5.7%, and for squats 5.3%. CONCLUSIONS: Our study among healthy subjects showed that the left-right EMG activity ratio in activities of daily living can be reliably measured with smart shorts. In future research, the feasibility of technical clothes as a follow-up method in rehabilitation should be investigated in greater detail.

How are actual needs recognized in the content and goals of written rehabilitation plans?

PURPOSE: The primary aim of the study was to investigate the interrelation between needs and functional difficulties and the therapeutic goals in children with cerebral palsy (CP) as documented in individual written rehabilitation plans. METHOD: The study was a retrospective cross-sectional register study. The data consisted of randomly chosen register documents for 77 children and adolescents with CP in different predetermined age ranges. The International Classification of Functioning, Disability and Health-Child and Youth version (ICF-CY) was used as a reference for analyzing the content of the written statements. RESULTS: The rehabilitation plans for 70 children, 1-16 years of age, representing all GMFCS levels were analyzed. Goals were not well reflected in the children's needs and functional difficulties. The needs, functional difficulties and goals mainly encompassed the components of body functions and activity/participation. In half of the plans the presence of the parents was mentioned, and the plans were made in multidisciplinary collaboration. CONCLUSIONS: The results of this study indicate deficiencies in the content and goals of the written rehabilitation plans. The ICF-CY could serve as a framework to help professionals and parents identify the child's needs and those areas where the goals should be targeted. Implications for Rehabilitation Documenting the child's and family's needs in relation to activity and participation preferences is critical to rehabilitation and intervention planning. Goals, based on the child's needs, should be identified in collaboration with all parties involved, and focus on the child's functioning in meaningful everyday activities. The ICF-CY could serve as a framework for the family and professionals to identify needs and to communicate rehabilitation goals.

Rehabilitation planning for children and adolescents with cerebral palsy.

OBJECTIVE: To explore the types of procedures and practices in rehabilitation planning for children with cerebral palsy and how multidisciplinary team members experience them. DESIGN, SUBJECTS, AND SETTING: A qualitative research approach was used. Participants were members of multidisciplinary teams in neuropediatric wards at five university hospitals. METHODS: In order to explore the rehabilitation planning procedure within multidisciplinary teams, focus group interviews were conducted. The interviews were tape recorded and transcribed. Three content areas guided the interviews: goal setting, the different transition phases, and the use of the international classification of functioning, disability and health, child and youth version (ICF-CY). Qualitative content analysis was used to analyze the results. RESULTS: Three themes arose from the focus group discussions; challenging goal setting, transition without routines, and ICF-CY not in use. A family-centered service model had been adopted, but there was no clear procedure in the collaboration with parents. Goal setting was found to be challenging and the concern arose of how to integrate goals into the child's everyday life. There was a lack of systematic planning of the different transition phases. There was also a general variation in the rehabilitation planning procedures due to local and regional differences in practice. The ICF-CY was familiar, but not in formal use in clinical practice. CONCLUSION: There is a need to enhance the procedures and to systematize coordination of services in the rehabilitation process. The ICF-CY framework might help to optimize collaborative goal setting and to structure both procedures and documentation of the rehabilitation plans and goals.