Cerebral Palsy Follow-up Program Research Articles

Foot and lower leg pain in children and adults with cerebral palsy: a population-based register study on 5,122 individuals

BackgroundPain is common in individuals with cerebral palsy (CP) and the most reported pain site is the foot/lower leg. We analyzed the prevalence of pain in the foot/lower leg and the associations with age, sex, gross motor function, and clinical findings in individuals with CP.MethodThis was a cross-sectional register-study, based on data reported to the Swedish Cerebral Palsy Follow-up Program (CPUP). All participants in CPUP, four years-of-age or older, were included. Pearson chi-square tests and logistic regression were used to analyze the prevalence and degree of pain in the foot/lower leg.ResultsIn total, 5,122 individuals were included from the CPUP database: 58% were males and 66% were under 18 years-of-age. Overall, 1,077 (21%) reported pain in the foot/lower leg. The odds ratios (ORs) of pain were higher in females (OR 1.31, 95% confidence interval (CI) 1.13–1.53), individuals who could ambulate (Gross Motor Function Classification System Level I (OR 1.84, CI 1.32–2.57) and II (OR 2.01, CI 1.46–2.79) compared to level V), and in individuals with decreased range of motion of the ankle (dorsiflexion 1–10 degrees (OR 1.43, CI 1.13–1.83) and ≤ 0 degrees (OR 1.46, CI 1.10–1.93) compared to ≥ 20 degrees). With increasing age the OR of pain increased (OR 1.02, CI 1.01–1.03) as well as the reported pain intensity (p < 0.001).ConclusionsPain in the foot and lower leg appears to be a significant problem in individuals with CP, particularly in those who walk. As with pain in general in this population, both pain intensity and frequency increase with age. The odds of pain in the foot and lower leg were increased in individuals with limited dorsiflexion of the ankle. Given the cross-sectional design causality cannot be inferred and it is unknown if pain causes decreased range of motion of the ankle or if decreased range of motion causes pain. Further research is needed on causal pathways and importantly on prevention.

Limited associations between passive range of motion and gross motor function in ambulant/semi-ambulant children and adolescents with cerebral palsy: A cross-sectional study

Background and aimCerebral palsy (CP) is the most common childhood motor disability, and the Cerebral Palsy Follow-Up Program (CPUP) in Nordic countries uses a traffic light system for passive range of motion (ROM) assessment to aid interpretation and guide decisions regarding interventions. However, the arbitrary chosen ROM threshold values and their potential clinical impact are uncertain. We investigated whether lower extremity ROM values were positively associated with gross motor function and whether gross motor function scores differ between the CPUP ROM thresholds. MethodsThis was a cross-sectional analysis of CPUP data for 841 ambulatory children and adolescents with CP, at a mean (SD) age of 9 (3). Regression analyses were employed to explore the relationship between gross motor capacity and performance (using the Gross Motor Function Measure (GMFM-66) and the Functional Mobility Scale (FMS) 5/50/500 m, respectively) and lower extremity ROM, measured with a goniometer. ROM was assessed both as continuous and categorical variables. ResultsWe found that two out of ten continuous ROM measures were positively associated with gross motor function. Limited differences in gross motor function between the ROM thresholds were seen for seven out of ten ROM measures. The CPUP traffic light thresholds primarily differentiated gross motor function between the red and green categories, predominantly for the subgroup of participants with bilateral spastic CP. ConclusionLimited associations between passive ROM and gross motor function in children and adolescents with CP were observed, indicating that there is more to consider than ROM when identifying whether interventions are needed.

The diagnosis of cerebral palsy in two Danish national registries: a validation study.

To determine the quality of prospectively collected data from the highly specialized Danish Cerebral Palsy Follow-up Program (CPOP), and to establish the validity of a reported cerebral palsy (CP) diagnosis in the Danish National Patient Registry (NPR), regularly used as a proxy for neurodevelopmental disorders in epidemiological research. We compared data from the two registries on children with registered CP, born in Denmark between 2008 and 2009, with information from medical records verified by two experienced physicians specializing in pediatric neurology. Data accuracy was estimated by completeness, correctness, and reliability. Completeness was calculated as the number of cases with correctly registered CP diagnoses divided by the total number of true CP diagnoses (similar to sensitivity). Correctness was calculated as the number of cases with correct registrations divided by the total number of cases (similar to positive predictive value). Reliability was estimated using kappa statistics. Registered CP diagnoses in the CPOP had high accuracy, with 94% correctness and 91% completeness. Furthermore, most key variables in the CPOP showed excellent reliability, especially variables defining the severity of the condition. In the Danish NPR, only 225 of 348 children with a noted CP diagnosis fulfilled the diagnostic criteria for CP, resulting in 65% correctness. Danish CPOP data are a valid source for epidemiological research. Conversely, a noted CP diagnosis in the Danish NPR was, at best, correct in only two out of three patients.

Impact of a National Follow-Up Program on the Age at Diagnosis for Cerebral Palsy

BackgroundThe Danish National Cerebral Palsy Follow-up Program (CPOP) is a nationwide program offering standardized treatment to all children with cerebral palsy (CP) since 2004. We aimed to establish if its implementation had a positive impact on the diagnostic age of CP. MethodsChildren with validated CP diagnoses were identified from the Danish Cerebral Palsy Registry and the CPOP. We then compared the age at diagnosis and the clinical features of children with CP born in 2000 to 2003 with those born in 2010 to 2013. Differences in time to diagnosis were compared using log-rank test. ResultsThe age at diagnosis was not different in the two periods (P = 0.23), with identical overall median diagnostic ages at 13.0 months. The number of children with severe motor disability decreased markedly from 47.5% in 2000 to 2003 to 32.0% in 2010 to 2013 (P < 0.001). There was increased usage of cerebral magnetic resonance imaging; however, this was not associated with lower diagnostic age. ConclusionsThe diagnostic age of CP did not change after the implementation of a nationwide follow-up program, offering standardized and early assessments. However, central clinical aspects also changed significantly between the periods compared, which possibly affected the diagnostic age.

Predictors of Physical Activity Levels in Ambulant/Semiambulant Children and Adolescents With Cerebral Palsy: A Clinical Cohort Study.

Children and adolescents with cerebral palsy (CP) show a reduced physical activity (PA) level compared with their typically developed peers. This study aimed to identify potential predictors of objectively evaluated habitual PA using data from a national clinical registry-the Cerebral Palsy Follow-Up Program(CPFP)-and proxy-reported questionnaires. Data from the CPFP database showed that female sex was associated with a lower PA level. Additional questionnaire data revealed age, popliteal angle limitation, Pediatric Outcomes Data Collection Instrument-Sports and Physical Functioning Scale score, screen time, Functional Mobility Scale score at 50m, and fatigue as predictors. The proposed models can be used for the prediction and early detection of the PA level and consequently for the potential improvement among ambulant/semiambulant individuals with CP. Further research should investigate the predictive impact of personal, social, and environmental factors on the PA level and the gap in PA levels between girls and boys.

Exposure to per- and polyfluoroalkyl substances in early pregnancy and risk of cerebral palsy in children

BackgroundMost cerebral palsy (CP) cases have an unexplained etiology, but a role for environmental exposures has been suggested. One purported environmental risk factor is exposure to endocrine-disrupting pollutants specifically per- and polyfluoroalkyl substances (PFAS). ObjectivesWe investigated the association between prenatal PFAS exposures and CP in Swedish children. MethodsIn this case-control study, 322 CP cases, 343 population controls, and 258 preterm controls were identified from a birth registry in combination with a CP follow-up program from 1995 to 2014 and linked to a biobank which contains serum samples from week 10–14 of pregnancy. Maternal serum concentrations of four PFAS compounds: perfluorohexane sulfonate (PFHxS), perfluorooctanoic acid (PFOA), perfluorononanoic acid (PFNA), and perfluorooctane sulfonate (PFOS) were analyzed using liquid chromatography-tandem-mass-spectrometry. We estimated odds ratios (ORs) and 95 % confidence intervals (CIs) for CP and each PFAS in quartiles and as continuous variables controlling for various sociodemographic and lifestyle factors. ResultsIn crude and adjusted analyses, we did not find consistent evidence of associations between serum PFHxS, PFOA, PFNA, PFOS and concentrations in early pregnancy and CP, except in preterm infants. The ORs comparing the highest PFAS quartiles to the lowest were 1.05 (95 % CI: 0.63–1.76), 0.96 (95 % CI: 0.55–1.68), 0.71 (95 % CI: 0.41–1.25), and 1.17 (95 % CI: 0.61–2.26), for PFHxS, PFOA, PFNA, and PFOS, respectively. Some positive associations were observed for preterm infants, but the results were imprecise. Similar patterns were observed in analyses treating PFAS as continuous variables. ConclusionsIn this study, we found little evidence that early pregnancy prenatal exposure to PFHxS, PFOA, PFNA, or PFOS increases the risk of CP. However, some positive associations were observed for preterm cases and warrant further investigation.

Epidemiology of fractures in children with cerebral palsy: a Swedish population-based registry study

BackgroundChildren with cerebral palsy (CP) form a heterogeneous group and may have risk or protective factors for fractures compared with typically developing children. The fracture sites may also differ from those of children who do not have CP. We analyzed the fracture epidemiology in a total population of children with CP.MethodsThis was a retrospective registry study based on data from the Swedish Cerebral Palsy Follow-Up Program (CPUP) and the Swedish National Patient Register. All children in the CPUP born in 2000–2015 were included. The Gross Motor Function Classification System (GMFCS) level, reported fractures, fracture site, and epilepsy diagnosis were recorded up to 2018. Hazards and hazard ratios were calculated for first-time fractures.ResultsOf the 3,902 participants, 368 (9.4%) had at least one reported fracture. The cumulative risk of sustaining a fracture before age 16 years was 38.3% (95% confidence interval 33.9–42.4). The hazard for fracture was 7 times higher in children with epilepsy. The overall fracture incidence was not statistically significantly related to sex or GMFCS level. Fractures in the upper extremities were most prevalent in children with a lower GMFCS level, and femoral fractures were most prevalent in children at GMFCS level V. Most fractures occurred in early childhood and after 8 years of age.ConclusionsChildren with CP were at similar risk of sustaining fractures as typically developing children, but the risk was higher in children with comorbid epilepsy. Fractures occurred in children at GMFCS levels I–III at sites similar to those for typically developing children; fractures in the upper extremities were the most frequent. Children at GMFCS levels IV or V and those with epilepsy were more likely to have a fracture in the lower extremities, and the femur was the most frequent site.

Postural Asymmetries and Assistive Devices Used by Adults With Cerebral Palsy in Lying, Sitting, and Standing.

Purpose: To describe the use of assistive devices and postural asymmetries in lying, sitting and standing positions in adults with cerebral palsy, and to analyze postural asymmetries and any associations with their ability to maintain or change position and time in these positions.Methods: A cross-sectional study based on data from the Swedish Cerebral Palsy follow-up program of 1,547 adults aged 16–76 years, at Gross Motor Function Classification System (GMFCS) levels I (n = 330), II (n = 323), III (n = 235), IV (n = 298), and V (n = 361). Assistive devices such as wheelchairs, seating systems, adjustable beds, standing equipment and time in each position were reported. The Posture and Postural Ability Scale was used to identify asymmetries and rate the ability to maintain or change position. Binary logistic regression models were used to estimate odds ratios (OR) for postural asymmetries in supine, sitting and standing.Results: Assistive devices were used by 63% in sitting (range 5–100% GMFCS levels I–V), 42% in lying (4–92% levels I-V), and 32% in standing (2–70% levels II–V). Wheelchairs were used as seating systems by 57%. Most adults had postural asymmetries in supine (75%; range 35–100% levels I–V), sitting (81%; 50–99% levels I–V) and standing (88%; 65–100% levels I–V). Men were more likely than women to have postural asymmetries, and the likelihood of postural asymmetries increased with age, GMFCS levels and inability to change position. Inability to maintain position increased the probability of postural asymmetries in all positions from OR 2.6 in standing to OR 8.2 in lying and OR 13.1 in sitting.Conclusions: Almost twice as many adults used assistive devices in sitting than in lying or standing. Two thirds of the adults who used standing devices used it for <1 h per day, indicating that they might spend the remaining 23 out of 24 h per day either sitting or lying. Asymmetric postures were frequent across all ages and were highly associated with inability to change or maintain position.

Unequal physical activity among children with cerebral palsy in Sweden-A national registry study.

AimTo examine the extent to which sex, country of birth, and functional aspects influence participation in physical education and physical leisure activity among children with cerebral palsy (CP) in Sweden.MethodsThis national cross‐sectional registry study included children with CP aged 6 to 18 years who participated in the Swedish national quality registry, the Cerebral Palsy Follow‐up Program, CPUP, in 2015. Comparisons and associations between sex, country of birth, and functional aspects and physical leisure/physical education were examined using chi‐squared and multivariable logistic regression analysis.ResultsThe study included 1935 children. Of them, 1625 (87%) reported participating in physical education and 989 (53%) reported participating in physical leisure activity. Children born in Sweden had higher odds of participating in physical education (OR: 1.99; 95% CI: 1.20‐3.28) and physical leisure activity (OR: 2.51; 95% CI: 1.70‐3.72) compared with children born outside Europe. Greater impairment of gross motor function was associated with lower participation levels. Boys participated slightly more frequently in leisure activities than girls.ConclusionEnhancing social inclusion with regard to disability, birth country, and sex are important and achievable goals for policymakers and practitioners for promoting participation in physical activity for children and adolescents with CP.

Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

Purpose To explore participation in real-life activities during early childhood, compare children’s participation based on motor function and investigate relationships between participation and parental empowerment. Methods Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child participation and parental empowerment. Results Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations. Conclusions Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation. Implications for Rehabilitation Family and recreational activities represent real-life contexts providing opportunities for interactions and experiences supporting development and learning. Children with CP appreciate a wide range of activities in the home and community, which emphasizes the importance of providing opportunities for such participation in order to fulfill their desires and interests. Child participation appears as complexly influenced by the unique activity setting, motor function and characteristics of the family environment, requiring attention to transactional processes when aiming to explore and promote participation.

School outcomes of adolescents with cerebral palsy in Sweden.

AimTo study school outcomes of adolescents with cerebral palsy (CP) compared with a matched comparison group from the general population, and to observe to what extent sociodemographic and disability‐specific factors are associated with school outcomes.MethodThis was a register study of persons with CP in Sweden, born between 1990 and 1999, with a matched comparison group. Logistic regressions were used to estimate the associations between CP and disability‐specific factors and school outcomes (receiving final grades, grade scores, fulfilling the requirements for progressing to secondary school/university, and attending secondary school).ResultsChildren with CP had substantially lower school achievement compared with a general population sample. Much of the difference can be attributed to intellectual disability; however, CP remained strongly negatively associated with school outcomes. Ability to communicate in an effective manner explained most of the variation in children with CP, whereas motor function played a smaller role.InterpretationThe results suggest that school achievements might be improved if the communication barrier could be reduced, for example by ascertaining access to appropriate communication devices and by educators being aware that communicative difficulties do not necessarily imply intellectual disability. This might enhance the school experience and create an environment where children with CP can reach their full potential.What this study adds There are reduced educational outcomes associated with cerebral palsy.Negative outcomes are mainly driven by reduced communicative and intellectual ability.Gross motor function is associated with outcomes, but plays a smaller part.

Continuing decline in the prevalence of cerebral palsy in Denmark for birth years 2008-2013.

To quantify and analyse the prevalence and clinical features of cerebral palsy (CP) in Denmark for birth years 2008-2013 and compare results with previous periods. A nationwide register-based study covering all children with a confirmed diagnosis of CP born in Denmark. Information about CP subtype, aetiology and severity was collected from the Cerebral Palsy Follow-up Program and supplemented from medical files. Data from the Danish Medical Birth Register was included, and the results were compared to previous data from the Danish National Cerebral Palsy Register. Prevalence per 1000 live births and proportions were analysed using the Cochran-Armitage test for trend. The period covered 368,618 live births and 636 children with CP, making the overall prevalence for the period 1.73 per 1000 live births. This was significantly lower than the prevalence of 1.99 for the previous period 1999-2007 (p=0.004). The decline in prevalence between the two periods was mainly due to a decrease in children with bilateral spastic and dyskinetic CP born after 37 gestational weeks. The decline in prevalence was accompanied by a smaller proportion of children with associated impairment. We found a decrease in prevalence and severity in CP among Danish children. The decline was most pronounced in children born after 37 gestational weeks with severe subtypes of CP. National guidelines that recommend induction of labour before the completion of week 42 and therapeutic hypothermia for term neonates with hypoxic-ischaemic encephalopathy, may have contributed to the decline.

Prevalence of pain and interference with daily activities and sleep in adults with cerebral palsy.

AimTo analyse the prevalence of pain, pain sites, pain severity, and pain interfering with work or daily activities and sleep in adults with cerebral palsy (CP).MethodThis was a cross‐sectional study based on data from 1591 adults (16–76y, median age 25y; 879 males, 712 females; Communication Function Classification System [CFCS] levels I–V) in the Swedish Cerebral Palsy Follow‐up Program. Pain severity was rated for several body sites and pain interference with activities/work and sleep was also evaluated. Logistic regression was used to estimate the odds ratios (ORs) of the factors associated with the prevalence of pain and pain interfering with activities/work or sleep.ResultsPain was reported in 1059 of 1591 adults; a higher proportion self‐reported pain (69.9%) compared to proxy‐reported pain (62.4%). More adults classified in CFCS level I (72.5%) reported pain compared to those in CFCS levels II to V (56.5–64.9%). Adults with severe/very severe pain had a sixfold risk of pain interfering with activity/work (OR=6.68; 95% CI 4.99–8.96) and sleep (OR=6.60; 95% CI 4.84–8.98).InterpretationTwo‐thirds of adults with CP experienced pain, which is likely to be underreported in individuals who do not communicate efficiently or rely on proxy reports. Pain strongly interfered with activities and sleep; thus, it must be assessed and treated more effectively.

Development of a risk score for scoliosis in children with cerebral palsy

Background and purpose — Children and young adults with cerebral palsy (CP) have an increased risk of developing scoliosis, with a prevalence ranging from 11% to 29%. Information on risk factors for the emergence and progression of scoliosis is inconclusive. This study aimed to develop a risk score based on 5-year-old children with CP to predict the risk of scoliosis before the age of 16.Patients and methods — This prospective registry study included 654 children with CP in Sweden born in 2000 to 2003 and registered with the Swedish CP follow-up program (CPUP) at the age of 5 years, including all Gross Motor Function Classification System (GMFCS) levels. 92 children developed a scoliosis before the age of 16 years. Univariable and multivariable logistic regressions were used to analyze 8 potential predictors for scoliosis: GMFCS, sex, spastic subtype, epilepsy, hip surgery, migration percentage, and limited hip or knee extension.Results — 4 predictors for scoliosis remained significant after analyses: female sex, GMFCS levels IV and V, epilepsy, and limited knee extension, and a risk score was constructed based on these factors. The predictive ability of the risk score was high, with an area under the receiver operating characteristics curve of 0.87 (95% CI 0.84–0.91).Interpretation — The risk score shows high discriminatory ability for differentiating between individuals at high and low risk for development of scoliosis before the age of 16. It may be useful when considering interventions to prevent or predict severe scoliosis in young children with CP.

Change in popliteal angle and hamstrings spasticity during childhood in ambulant children with spastic bilateral cerebral palsy. A register-based cohort study

BackgroundMuscle contractures are developing during childhood and may cause extensive problems in gait and every day functioning in children with cerebral palsy (CP). The aim of the present study was to evaluate how the popliteal angle (PA) and hamstrings spasticity change during childhood in walking children with spastic bilateral CP.MethodsThe present study was a longitudinal register-based cohort study including 419 children (1–15 years of age) with spastic bilateral CP, gross motor function classification system (GMFCS) level I, II and III included in the Norwegian CP Follow-up Program (CPOP). From 2006 to 2018 a total of 2193 tests were performed. The children were tested by trained physiotherapists yearly or every second year, depending on GMFCS level and age. The PA and the hamstrings spasticity (Modified Ashworth scale (MAS)) were measured at every time point. Both legs were included in the analysis.ResultsThere was an increase in PA with age for all three GMFCS levels with significant differences between the levels from 1 up to 8 years of age. At the age of 10 years there was no significant difference between GMFCS level II and III. At the age of 14 years all three GMFCS levels had a mean PA above 40° and there were no significant differences between the groups. The hamstrings spasticity scores for all the three GMFCS levels were at the lower end of the MAS (mean < 1+), however they were significantly different from each other until 8 years of age. The spasticity increased the first four years in all three GMFCS levels, thereafter the level I and II slightly increased, and level III slightly decreased, until the age of 15 years.ConclusionThe present study showed an increasing PA during childhood. There were significantly different PAs between GMFCS level I, II and III up to 8 years of age. At the age of 14 years all levels showed a PA above 40°. The spasticity increased up to 4 years of age, but all the spasticity scores were at the lower end of the MAS during childhood.

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

BackgroundCerebral 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.ObjectiveThe 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.MethodsMOVING 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.ResultsThe individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained.ConclusionsIn 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

Bone and joint complications and reduced mobility are associated with pain in children with cerebral palsy

AimTo investigate the relationships between pain in the lower extremities and back, and spasticity, bone/joint complications and mobility.MethodsRetrospective population‐based registry study. Participants (N = 3256) with cerebral palsy (CP), 2.5‐16 years of age, participating in the Swedish Cerebral Palsy Follow‐up Program were included. Spasticity was measured using scissoring and the Modified Ashworth Scale. Bone/joint complications consisted of hip displacement, range of motion, windswept posture and scoliosis. Mobility was measured using the Functional Mobility Scale (5‐, 50‐ and 500‐metres), wheelchair use (outdoors) and the ability to stand/get up from sitting/use stairs, respectively. Pain was measured as presence of pain in hips, knees, feet and back. Data were analysed using structural equation modelling.ResultsBone/joint complications had the strongest direct pathway with pain in the lower extremities (standardised regression coefficient = 0.48), followed by reduced mobility (standardised regression coefficient = −0.24). The pathways between spasticity and pain, and age and pain were not significant. The R2 of the model was 0.15.ConclusionBone/joint complications and reduced mobility were associated with pain in the lower extremities when controlling for sex. Considering the R 2 of the model, other factors not included in the model are also associated with pain in the lower extremities in children with CP.

Is more frequent physical therapy associated with increased gross motor improvement in children with cerebral palsy? A national prospective cohort study

Purpose: To investigate the association between physical therapy frequency and gross motor improvement in children with cerebral palsy (CP).Materials and methods: This is a prospective cohort study of 442 children aged 2–12 years, Gross Motor Function Classification System levels I–V, from the Cerebral Palsy Follow-up Program and the Cerebral Palsy Register of Norway. Outcome was change in reference percentiles for the Gross Motor Function Measure (GMFM-66) between two subsequent assessments (N = 1056) analyzed in a linear mixed model.Results: It was a dose response association between physical therapy frequency and gross motor improvement. Mean change was 4.2 (95% CI: 1.4–7.1) percentiles larger for physical therapy 1–2 times per week and 7.1 (95% CI: 2.6–11.6) percentiles larger for physical therapy >2 times per week, compared to less frequent physical therapy when analyzed in a multivariable model including multiple child and intervention factors. The only statistically significant confounder was number of contractures which was negatively associated with gross motor improvement.Conclusions: When gross motor improvement is a goal for children with CP, more frequent physical therapy should be considered.Implications for rehabilitationIn general, the gross motor development of Norwegian children with cerebral palsy was as expected according to the reference percentiles for the GMFM-66.When gross motor improvement is a goal for children with cerebral palsy, high-frequency physical therapy should be considered.Contractures should be addressed in order to optimize gross motor improvement for children with cerebral palsy.

Factors Associated with Enhanced Gross Motor Progress in Children with Cerebral Palsy: A Register-Based Study

ABSTRACTAim: To examine associations between interventions and child characteristics; and enhanced gross motor progress in children with cerebral palsy (CP). Methods: Prospective cohort study based on 2048 assessments of 442 children (256 boys, 186 girls) aged 2–12 years registered in the Cerebral Palsy Follow-up Program and the Cerebral Palsy Register of Norway. Gross motor progress estimates were based on repeated measures of reference percentiles for the Gross Motor Function Measure (GMFM-66) in a linear mixed model. Mean follow-up time: 2.9 years. Results: Intensive training was the only intervention factor associated with enhanced gross motor progress (mean 3.3 percentiles, 95% CI: 1.0, 5.5 per period of ≥3 sessions per week and/or participation in an intensive program). Gross motor function was on average 24.2 percentiles (95% CI: 15.2, 33.2) lower in children with intellectual disability compared with others. Except for eating problems (–10.5 percentiles 95% CI: –18.5, –2.4) and ankle contractures by age (–1.9 percentiles 95% CI: –3.6, –0.2) no other factors examined were associated with long-term gross motor progress. Conclusions: Intensive training was associated with enhanced gross motor progress over an average of 2.9 years in children with CP. Intellectual disability was a strong negative prognostic factor. Preventing ankle contractures appears important for gross motor progress.

Threshold values of ankle dorsiflexion and gross motor function in 60 children with cerebral palsy

Background and purpose — Threshold values defining 3 categories of passive range of motion are used in the Cerebral Palsy follow-Up Program to guide clinical decisions. The aim of this study was to investigate the threshold values by testing the hypothesis that passive range of motion in ankle dorsiflexion is associated with gross motor function and that function differs between the groups of participants in each category.Patients and methods — We analyzed data from 60 ambulatory children (aged 5–9 years) with spastic cerebral palsy. Outcomes were passive range of motion in ankle dorsiflexion with flexed and extended knee and gross motor function (Gait Deviation Index, Gait Variable Score of the ankle, peak dorsiflexion during gait, 1-minute walk, Gross Motor Function Measure, the Pediatric Quality of Life Inventory Cerebral Palsy Module, and Pediatric Outcomes Data Collection Instrument).Results — Significant (p < 0.05) and moderate correlations were documented for range of motion versus Gait Variable Score of the ankle (r = –0.37 and r = –0.37) and range of motion versus peak dorsiflexion (r = 0.49 and r = 0.55). Differences between the groups formed by the categories were shown for Gait Variable Score of the ankle and peak dorsiflexion (p < 0.05). No other significant correlations or differences between the categories were observed.Interpretation — The results suggest that threshold values for ankle dorsiflexion used in the Cerebral Palsy follow-Up Program are of limited clinical value in assessing overall gross motor function, but may be used to identify deviations in ankle-specific gait function.