The Danish child and parent Gait Outcomes Assessment List questionnaires were reliable and valid for cerebral palsy.

AIM: We investigated the reliability and validity of the Danish child and parent versions of the Gait Outcomes Assessment List (GOAL) questionnaires for ambulatory children with cerebral palsy (CP). METHODS: Translation and cultural adaptations were performed and content validity evaluated. Participants were enrolled between 2016 and 2018 from Aarhus University Hospital, Denmark. Children and parents completed the GOAL questionnaires twice for test-retest reliability. Discriminative validity was evaluated by comparing the child and parent GOAL scores between children with Gross Motor Function Classification System (GMFCS) levels I and II. The concurrent validity of the GOAL questionnaires were investigated by comparing them with Challenge-20, which assesses motor skills in children with CP. RESULTS: We studied 59 children (57% boys) with CP and GMFCS I-II at a mean age of 10.6 years. Test-retest intra-class correlations were excellent for the children (0.91, 95% confidence interval (CI) 0.83-0.96) and good for the parents (0.83, 95% CI 0.67-0.91). GOAL scores decreased with increasing GMFCS (p < 0.05). Both versions correlated well. The mean children's scores were significantly (6.2/100) higher than the parents' (p < 0.001). The GOAL scores correlated positively with Challenge-20. CONCLUSION: The Danish GOAL child and parent questionnaires demonstrated good reliability and content and discriminative and concurrent validity.

Hip displacements and correctable scoliosis were prevalent in children with cerebral palsy registered in a Danish follow-up programme from 2010 to 2020.

AIM: We need a better understanding of non-surgical interventions for hip dislocations and scoliosis. This study estimated the cumulative incidence of problems among children with cerebral palsy and described the type and frequency of therapist-led interventions. METHODS: The study comprised 1482 children (58% male) aged 0-15 years, with a mean age of 3.6 years, who were registered in the Danish Cerebral Palsy Follow-up Programme from 2010 to 2020. We used the Kaplan-Meier estimator to examine the cumulative incidence of hip displacement, hip dislocation, correctable scoliosis and non-correctable scoliosis. The type and frequency of therapist-led interventions are reported descriptively. RESULTS: The cumulative incidence of hip displacement and hip dislocation were 15.8% and 3.5%, respectively, and 39.0% and 13.9% for correctable and non-correctable scoliosis. The most frequently reported type of therapist-led intervention was a joint range of motion exercise. We found that 60.5% with hip displacements and 43.8% with correctable scoliosis used a standing aid. A further 5.4% used a spinal orthosis to prevent deformity and 8.1% for stabilisation. CONCLUSION: Hip displacement and correctable scoliosis were prevalent in children with cerebral palsy, whereas the occurrence of hip dislocations and non-correctable scoliosis was low. The use of assistive aids was low.

Ankle-foot orthoses among children with cerebral palsy: a cross-sectional population-based register study of 8,928 children living in Northern Europe.

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.

Treatment of spasticity in children and adolescents with cerebral palsy in Northern Europe: a CP-North registry study.

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.

Hip contractures were associated with low gross motor function in children with cerebral palsy.

AIM: The aim was to identify the prevalence of hip contractures and their association with gross motor function and pain in the lower extremities among Danish children with cerebral palsy (CP). METHODS: This cross-sectional study was based on data collected during regular clinical examinations in 2018-2019 and registered in the National Danish Clinical Quality Database of children with CP. The study population was 688 children (59% boys) aged five to 12 years across all Gross Motor Function Classification System (GMFCS) levels. Any associations between hip contracture and gross motor function and pain were investigated with logistic regression analysis and presented as odds ratios (OR) with 95% confidence intervals (95% CI). RESULTS: The prevalence of hip contracture was 22% across all five GMFCS levels, and the incidence varied across the five Danish regions. The odds ratios for hip contracture were significantly higher at GMFCS level IV (OR 1.99, 95% CI 1.10-3.62) and V (OR 5.49, 95% CI 3.33-9.07) compared with level I. Hip contractures were not significantly associated with pain in the lower extremities (OR 1.43, 95% CI 0.95-2.15). CONCLUSION: Hip contractures were frequent and associated with low gross motor function, but not lower extremity pain, in children with CP.

Pain is frequent in children with cerebral palsy and negatively affects physical activity and participation.

AIM: The aim was to identify the prevalence of long-lasting pain among children with cerebral palsy (CP) and to investigate the association between pain and participation in physical leisure activities. METHODS: This is a cross-sectional study based on data from the National Danish Clinical Quality Database of children with CP. The study population consisted of 960 children aged 2-11 years across all Gross Motor Function Classification System (GMFCS) levels. Data were collected at children's regular clinical visits in 2016 or 2017. Information about pain and participation in physical leisure activities were obtained. The association was estimated as odds ratios (OR) and 95% confidence intervals (95% CI) by logistic regression adjusted for age and sex. RESULTS: We included data from 817 children (59% boys) median age 6 years, 52% classified as GMFCS level I. A total of 36% reported pain, and the most frequent pain locations were hips, feet and knees. Children reporting pain had lower odds for participation in physical leisure activities (OR 0.71, 95% CI 0.53-0.96). CONCLUSION: A large proportion of children with CP reported pain. There is an indication that long-lasting pain influences participation in physical leisure activities. Pain-relieving interventions are important to decrease pain-related suffering and facilitate participation.

Ankle contractures are frequent among children with cerebral palsy and associated with lower gross motor function and degree of spasticity.

AIM: To estimate yearly prevalence of ankle contractures among children with cerebral palsy (CP). Moreover, to investigate whether age, gross motor function or spasticity are associated with ankle contracture. METHODS: We examined yearly prevalence of ankle contractures among 933 children based on data from a national clinical quality database from 2012 to 2019. We used the Gross Motor Function Classification System (GMFCS) and the Modified Ashworth Scale (MAS) to assess gross motor function and spasticity in the plantar flexors. Ankle contracture was defined as dorsiflexion with an extended knee equal to or below 0 degrees. Associations between age, GMFCS, spasticity and ankle contractures were analysed using multivariable regression and presented as odds ratios (OR) with 95% confidence intervals (95%CI). RESULTS: The prevalence of ankle contracture was 32% and did not change with calendar year. GMFCS IV-V compared to I-III (40.6% vs. 28.9%, OR = 1.5 (95%CI: 1.07-2.11) and MAS 2-4 compared to 0 (44.6% vs. 24.4%, OR = 2.5 (95%CI: 1.59-3.91) were associated with a higher prevalence of ankle contracture. Age was not associated with ankle contracture. CONCLUSION: Ankle contractures are frequent among children with CP. Lower gross motor function and severe spasticity were associated with ankle contracture.

Prevalence of knee contractures is high in children with cerebral palsy in Denmark.

INTRODUCTION: Cerebral palsy (CP) is a neurological disease occurring in children at early gestation, often resulting in pronounced functional limitations. A Swedish cross-sectional study (Cloodt, et al., 2018) discovered that 22% of children with CP had a knee contracture, which was associated with higher levels of Gross Motor Function Classification System (GMFCS), higher age, and higher levels of spasticity measured by the Modified Ashworth Scale (MAS). The current study investigated these associations in a Danish population. METHODS: This is a cross-sectional study including 1,163 children with CP aged 0-15 years, registered in the Danish National Cerebral Palsy Registry between 2017 and 2019. Prevalence of knee contracture was estimated, and logistic regression analysis was applied with results presented as odds ratio (OR) with 95% confidence intervals (CI). RESULTS: A total of 511 children with CP had knee contracture resulting in a prevalence of 44%. Age groups 4-6 years (OR: 1.73, CI: 1.19; 2.52), 7-9 years (OR: 1.85, CI: 1.29; 2.66) and 10-12 years (OR: 2.12, CI: 1.39; 3.24) were significantly associated with a higher prevalence of knee contractures compared to age group 0-3 years. Knee contractures were significantly more frequent at GMFCS levels IV (OR: 1.9, CI: 1.21; 2.97) and V (OR: 3.62, CI: 2.36; 5.55) compared to level I. Knee contractures were not associated with higher levels of MAS. CONCLUSIONS: Knee contractures are highly prevalent and significantly associated with high levels of GMFCS and increased age until 12 years, but not with high levels of spasticity in children with CP in Denmark.

Reliability and minimal detectable change of the Challenge, an advanced motor skills test for children with cerebral palsy, Danish version.

PURPOSE: To translate and cross-culturally adapt the Challenge, and investigate the reliability and minimal detectable change (MDC) of the Danish Challenge in children with cerebral palsy (CP). MATERIALS AND METHODS: A Danish version of the Challenge was created through a standardized translation process. Four physiotherapists evaluated face validity. Independently ambulatory children with CP were tested. Live performance rating was conducted by assessors independently scoring the Challenge. Video-rating was undertaken for a subset of assessments. Same day assessment test-retest reliability was estimated. The Challenge's Best Score Total was of primary interest. RESULTS: Forty-five children (5-18 years: mean 10 years 9 months; 19 girls) in Gross Motor Function Classification System levels I and II were tested. Inter-rater reliability was excellent for live assessments (n = 45) ICC = 0.998 (95% CI 0.998-0.999) and video assessments (n = 15) ICC = 0.991 (95% CI 0.963-0.997) and intra-rater reliability was excellent for live versus video-recorded assessments (n = 10) ICC = 0.977 (95% CI 0.895-0.994). Test-retest reliability (n = 22) was excellent with ICC = 0.991 (95% CI 0.979-0.996) and minimal detectable change (MDC90) of 4.7 points. CONCLUSIONS: The Danish Challenge showed excellent reliability in this testing context when physiotherapists scored from live- or video-recorded assessments. The Challenge's ability to detect 4.7 points change seems a clinically realistic target for progress. Clinical trial registration: This trial has been approved by the Data Protection Agency, Central Region Denmark, Ref nr.: 615216, Case nr.: 1-16-02-46-16. Registration date: 01-01-2016.Implications for rehabilitationThe Challenge remained reliable and maintained a promising minimal detectable change of less than five points after translation and cultural adaptation.The Danish version of the Challenge 20-item version can be used to measure advanced motor skill performance in children with cerebral palsy, GMFCS level I and GMFCS level II.Challenge live scoring is as reliable as the more time-consuming video-recorded scoring, meaning that physiotherapists can choose the method that fits best with their clinical context and preference.

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.

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/.

The Danish Cerebral Palsy Follow-up Program.

AIM OF DATABASE: The Danish Cerebral Palsy Follow-up Program is a combined follow-up program and national clinical quality database that aims to monitor and improve the quality of health care for children with cerebral palsy (CP). STUDY POPULATION: The database includes children with CP aged 0-15 years and children with symptoms of CP aged 0-5 years. MAIN VARIABLES: In the follow-up program, the children are offered examinations throughout their childhood by orthopedic surgeons, physiotherapists, occupational therapists, and pediatricians. Examinations of gross and fine motor function, manual ability, muscle tone, passive range of motion, use of orthotics, and assistive devices are performed once a year; radiographic examination of the hips is planned based on the child's age and gross motor function; and the diagnosis is performed once before the age of 5 years. Six indicators were developed based on scientific literature and consensus in the steering committee, and their calculation is based on the following four main variables: radiographic examination of the hip, gross motor function, manual ability, and diagnosis. DESCRIPTIVE DATA: The 2014 annual report includes results of the quality indicators in three of five regions in Denmark comprising 432 children with CP, corresponding to a coverage of 82% of the expected population. CONCLUSION: The Danish Cerebral Palsy Follow-up Program is currently under development as a national clinical quality database in Denmark. The database holds potential for research in prevalence, clinical characteristics of the population, and the effects of prevention and treatment.

Parental questionnaire as a screening instrument for motor function at age five.

INTRODUCTION: No standardised method is used to determine motor function in children in general practice in Denmark. Our aim was to evaluate the correlation between a parental questionnaire assessing motor function at the age of five years and the clinical test Movement Assessment Battery for Children (M-ABC), and to assess whether one or more questions could be used to screen for motor problems at the age of five years. METHODS: This study was based on a parental questionnaire containing ten questions. The M-ABC was used as the gold standard. n = 755 children. The Mann-Whitney rank sum test, Pearson's χ(2)-test, logistic regression analyses and sensitivity and specificity were used to assess the correlation between the questionnaire and the M-ABC test. RESULTS: The best screening tool was six questions in combination: sensitivity 39.8%, specificity 87.1%. Asking if a health professional ever expressed concern about the childs motor development had a sensitivity of 17.0% and a specificity of 93.9%. CONCLUSION: A parental questionnaire used as a screening instrument to identify children with motor problems has a reasonable specificity, but a low sensitivity. The six questions can be used to identify children who do not have motor function difficulties with a relatively high certainty, and it can fairly well identify children with motor function problems. FUNDING: This study was primarily supported by the Centers for Disease Control and Prevention (CDC), Atlanta, Georgia, USA. Additional support was obtained from The Danish Health and Medicines Authority, the Lundbeck Foundation, Ludvig & Daara Elsass Foundation, the Augustinus Foundation, and Aase & Ejnar Danielsens Foundation. The Danish National Research Foundation has established the Danish Epidemiology Science Centre that initiated and created the Danish National Birth Cohort. The cohort is furthermore a result of a major grant from this Foundation. Additional support for the Danish National Birth Cohort is obtained from the Pharmacy Foundation, the Egmont Foundation, the March of Dimes Birth Defects Foundation, the Augustinus Foundation and the Health Foundation. TRIAL REGISTRATION: Approved by the Danish National Birth Cohort (DNBC) Board of Directors, the DNBC Steering Committee, the Regional Ethics Committee, the Danish Data Protection Agency and the CDC Institutional Review Board.