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

BACKGROUND: Pain 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. METHOD: This 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. RESULTS: In 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). CONCLUSIONS: Pain 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.

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.

Parental decisions to divorce and have additional children among families with children with cerebral palsy: Evidence from Swedish longitudinal and administrative data.

This study analyzes the relationship of having a child with the early-onset disability cerebral palsy (CP) and the parental decision to divorce and to have additional children. We use longitudinal matched case-control data from multiple linked Swedish National Population Registers between 2001 and 2015 and perform Cox proportional hazards regressions with interval-censoring. Although we do not find a general excess parental divorce risk on CP relative to the comparison group without CP, we find that having a child with CP increases the risk of divorce for parents with low education. We also find that having a child with CP reduces the likelihood of having additional children, especially for mothers in the older age range (maternal age at delivery >33 years) and parents with low education. The severity level of the disability, as indicated by gross motor function, is not related to the results. These findings should be understood in the Swedish context, which provides extensive welfare support (e.g., personal assistance). If future studies would find adverse results in countries with less social care and benefits, our results may indicate that it is possible to mitigate negative consequences for the family of a child with disability.

Pressure injuries are common in children with myelomeningocele: Results from a follow-up programme and register.

AIM: To investigate the occurrence of pressure injuries (PIs) in children with myelomeningocele (MMC) and to investigate the association between PIs and orthoses use by disability-specific variables. METHODS: Population-based registry study including participants in the Swedish multidisciplinary follow-up programme for MMC. Risks of PIs were investigated by birth cohort, country of birth, sex, type of MMC, muscle function level (MFL), and continence status. RESULTS: Of 180 participants, 29% had PIs recorded. Of the 132 participants with >1 assessment records, 17.4% reported multiple PI occasions. More assessments increased the likelihood of PIs (Odds Ratio [OR] = 1.33, 95% CI 1.15-1.54) and participants born 2015-2018 had a lower OR of PIs than those born 2007-2010 (OR = 0.08, 95% CI = 0.01-0.74). Those at MFL I had lower OR of PIs than those at MFL V (OR = 0.06, 95% CI 0.01-0.64). Of the 73 participants with orthoses on the lower extremities, 47% reported skin irritations/injuries in the last 4 weeks; 30% reported that it made them stop using orthoses. CONCLUSION: Pressure injuries are common even in young children with MMC. Many have recurring skin irritations. Inspecting for PIs should be part of a daily routine and tools to increase compliance are needed.

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

BACKGROUND: Children 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. METHODS: This 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. RESULTS: Of 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. CONCLUSIONS: Children 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.

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.

School outcomes of adolescents with cerebral palsy in Sweden.

AIM: To 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. METHOD: This 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). RESULTS: Children 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. INTERPRETATION: The 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.

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

AIM: To 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). METHOD: This 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. RESULTS: Pain 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). INTERPRETATION: Two-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.

Point prevalence and motor function of children and adolescents with cerebral palsy in Scandinavia and Scotland: a CP-North study.

AIM: To describe the point prevalence of cerebral palsy (CP) and distribution of gross and fine motor function in individuals registered in a CP-North surveillance programme. METHOD: Aggregate data of individuals with CP aged 6 to 19 years, sex, CP subtype, and gross and fine motor function levels were collected from each programme. Overall and age-specific point prevalence of CP was calculated for each programme using 95% confidence intervals. Logistic regression was used to estimate prevalence and CP subtypes with age as the covariate variable. Pearson χ2 tests were used to compare the distributions of CP subtypes, Gross Motor Function Classification System (GMFCS) levels, and Manual Ability Classification System (MACS) levels by age and between programmes. RESULTS: Among 3 759 138 individuals residing in Scandinavia and Scotland, 8278 had a diagnosis of CP (57-59% were males). The overall point prevalence of CP ranged from 2.13 to 2.32 per 1000 residents. Age-specific prevalence in each programme varied with the exception of Denmark. While the proportions of bilateral spastic CP were similar between programmes, there were variations in all other CP subtypes and in GMFCS and MACS levels. INTERPRETATION: While the results of this study may reflect real differences in CP populations between countries, they may not be clinically relevant. The variations may be attributable to differences in the year when each programme was first established, different data collection methods, and country-specific governmental policies.

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.

Pain in children and adolescents with cerebral palsy - a cross-sectional register study of 3545 individuals.

BACKGROUND: Pain is a common problem for individuals with cerebral palsy (CP). In Sweden, 95% of children and adolescents with CP are followed in a national follow-up programme (CPUP), which includes data on pain. The purpose of this study was to investigate the prevalence of pain based on age, sex, gross motor function and source of report (self or proxy). Pain intensity, pain site, and how much pain disturbed sleep and daily activities were also studied. METHODS: This was a cross-sectional register study based on all participants in CPUP, 4-18-years of age, with data reported in 2017-2018. Gross motor function was classified using the Gross Motor Function Classification System (GMFCS). Logistic regression was used to analyse prevalence of pain and how much pain had disturbed sleep and daily activities in the last four weeks. RESULTS: In total, 3545 participants (2065 boys) were included. The overall prevalence of pain was 44%. Older age and female sex were associated with higher risk of pain with odds ratios of 1.07 (95% confidence interval (CI) 1.06-1.09) and 1.28 (CI 1.12-1.47), respectively. Pain was most common in the lower extremities. There was no statistically significant difference in prevalence of pain related to source of report. Pain intensity was higher at older ages and higher GMFCS-levels. Hip/thigh pain and abdominal pain were associated with the most intense pain. Of those who reported pain, pain disturbed sleep for 36% and daily activities for 61%. CONCLUSIONS: Both pain frequency and pain intensity were higher at higher age. Pain intensity increased with increasing GMFCS-level. Two-thirds of all children and adolescents with CP reported that their pain disturbed their daily activities, and one-third reported that pain disturbed their sleep.

Flaunting our assets. Making the most of the Nordic registry goldmine: Cerebral palsy as an example.

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.

Gender differences in treatments and interventions received by children and adolescents with cerebral palsy.

BACKGROUND: In the Swedish population-based follow-up program and national quality registry for individuals with cerebral palsy (CPUP), physiotherapy (PT) and occupational therapy (OT) treatments are regularly recorded along with functional status. By Swedish law, all citizens irrespective of personal characteristics or socioeconomic status, have the right to receive healthcare and medical treatments as applicable. Previous research has shown gender differences in treatments and interventions received by children with cerebral palsy (CP). The purpose of this study was to examine differences in treatments and interventions by gender and place of birth in children and adolescents participating in CPUP. METHODS: This was a cross-sectional registry study. Data from the latest PT (n = 2635) and OT assessment forms (n = 3480) in CPUP were extracted for individuals aged 0-17 years. Logistic regressions were used to assess the relationships between the outcome variables and gender and place of birth (including an interaction term gender X place of birth), adjusted for age, Gross Motor Function Classification System (GMFCS) levels and spasticity scores for PT interventions and Manual Ability Classification System (MACS) for OT interventions. RESULTS: Results are presented as odds ratios [95% confidence intervals] and p-values. Girls were significantly more likely to have spinal braces than boys; 1.54 [1.07, 2.22] p < 0.05, a significant interaction with place of birth indicated fewer spinal braces prescribed to children born outside of the Nordic countries; 0.20 [0.079, 0.53] p < 0.001. Girls were less likely to have undergone selective dorsal rhizotomy (SDR); 0.49 [0.25, 0.94] p < 0.05. Individuals born outside of the Nordic countries, were significantly less likely to have received intrathecal baclofen (ITB) 0.27 [0.074, 0.98] p < 0.05. CONCLUSIONS: Of the treatments prescribed, gender differences were observed for spinal braces and having undergone SDR. A statistically significant difference based on place of birth was noted for spinal bracing and having received ITB treatment. Other PT and OT treatments were associated with age, level of spasticity, and functional severity as classified using the GMFCS and the MACS. Increased awareness of differences based on gender, and where a child is born, could be obtained by inter- and intraprofessional discussions.

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

AIM: To investigate the relationships between pain in the lower extremities and back, and spasticity, bone/joint complications and mobility. METHODS: Retrospective 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. RESULTS: Bone/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. CONCLUSION: Bone/joint complications and reduced mobility were associated with pain in the lower extremities when controlling for sex. Considering the R2 of the model, other factors not included in the model are also associated with pain in the lower extremities in children with CP.

Back pain is more frequent in girls and in children with scoliosis in the context of cerebral palsy.

AIM: To investigate the prevalence of general and back pain in children with cerebral palsy and the relationships between scoliosis and back pain. METHODS: Cross-sectional register study based on data from the Swedish Cerebral Palsy Follow-Up Programme. Descriptive analyses and logistic regression to regress age, sex, gross motor function, windswept, hip extension and source of report on the presence of pain. RESULTS: The study included 3783 children (58% boys) 1-18 (mean 10.0) years of age. General pain was reported in 1538 (44% girls, 38% boys) and back pain in 226 (7% girls, 5% boys) children. The proportion of back pain increased from <4% prior to age 12 years to >12% from 16 years of age. Back pain increased from 4% in children without scoliosis to 16% in children with severe scoliosis. Moderate/severe back pain increased from 2% in children without scoliosis to 10% in children with severe scoliosis. Increased odds of reporting back pain were found for age, girls, low gross motor function and children with scoliosis. CONCLUSION: The proportion of children with general pain increased with age and was more frequent in girls. Age, female sex, low gross motor function and scoliosis were significant predictors of back pain.

Hip pain in children with cerebral palsy: a population-based registry study of risk factors.

BACKGROUND: Hip pain is prevalent in children with cerebral palsy (CP). Hip displacement is a known risk factor for hip pain. However, many children do not have displaced hips but still have hip pain and the aetiologies are poorly understood. The aims of this study were to investigate: 1. the prevalence of hip pain related to age, gender, gross motor function, degree of hip displacement and 2. the associations between hip pain and age, gender, gross motor function, degree of hip displacement, ranges of hip and knee motion (ROM) and degree of spasticity in the muscles around the hip. METHODS: This was a cross-sectional retrospective register study based on data from the Swedish follow-up programme and national healthcare registry CPUP, which includes > 95% of children with CP in Sweden. The participants were born in 2000 or later and 4-16 years of age. Data from the latest examination were used. In Aim 1, the prevalence of hip pain was calculated using frequencies and crosstabs. Differences between groups were calculated using chi-square tests and independent samples t-tests. In Aim 2, associations between hip pain and the variables were analysed using logistic regression. RESULTS: The overall prevalence of hip pain was 7%. No significant gender difference was found. Hip pain prevalence increased with age, lower gross motor function and higher degree of hip displacement. The median migration percentage (MP) in painful hips was 26%, compared to 21% in hips where pain was not reported. In the multivariable analysis, significant associations with hip pain were found for MP > 30% and decreased ROM in abduction, flexion and inwards rotation of the hip (p < 0.05). CONCLUSION: Hip displacement was associated with hip pain. However, hip displacement was not present in the majority of painful hips. In addition to hip displacement, decreased ROM was also associated with hip pain.

Stability of the Gross Motor Function Classification System in children and adolescents with cerebral palsy: a retrospective cohort registry study.

AIM: To investigate the stability and to determine factors that affect change in the Gross Motor Function Classification System (GMFCS) in a sample from the total population with cerebral palsy (CP) in two regions of Sweden. METHOD: Retrospective cohort registry study based on the follow-up programme for CP. Children with CP and a minimum of two GMFCS ratings were included. Subtype, sex, ages at GMFCS ratings, time between ratings, number of ratings, assessor change, and birth cohort were analysed in relation to initial GMFCS levels, with descriptive statistics and logistic regression models. RESULTS: Ninety-three per cent (n=736) of children with CP born between 1990 and 2007 were included, resulting in 7922 assessments between 1995 and 2014. Fifty-six per cent of the children received the same GMFCS rating at all assessments, with a median of 11 individual GMFCS ratings (range 2-21) and a median of three different assessors (range 1-10). Changes were often transient; downward change (higher performance) was more likely in GMFCS levels II and III than in the other levels. The probability of upward change (lower performance) was lowest in unilateral spastic CP. INTERPRETATION: The results support the stability of the GMFCS shown previously and add new information on the properties of the classification.

Treatment with Botulinum toxin A in a total population of children with cerebral palsy - a retrospective cohort registry study.

BACKGROUND: Botulinum toxin A (BTX-A) has been used to reduce spasticity in children with cerebral palsy (CP) for decades. The purpose of this study was to analyze to what extent BTX-A treatment was used to treat spasticity in a total population of children with CP. We investigated 1) the use of BTX-A in relation to age, sex, and Gross Motor Function Classification System (GMFCS) level, 2) the most common muscle groups treated with BTX-A in relation to the same variables, and 3) changes in the proportions of children treated with BTX-A between two time points (2010 and 2015). METHODS: The study was based on data from CPUP, a combined Swedish follow-up program and national healthcare registry, comprising >95% of all children with CP in Sweden. The participants (N = 3028) were born in 2000 or later. Potential BTX-A treatment and treated muscle groups were included from all CPUP assessments recorded in the registry in 2014-2015. In Aim 3, BTX-A administration in 3-5 year-olds at two time points was assessed. Crosstabs and 95% confidence intervals (CIs) for binominal proportions were calculated and logistic regression was used to regress age, sex, and GMFCS level on BTX-A treatment. Muscle groups treated with BTX-A were assessed using crosstabs and 95% CIs. Proportional change in BTX-A treatment over a 5-year period was analyzed using chi-square. RESULTS: We included 3028 children (57% boys; median age 7 years) of whom 26% received BTX-A. Significantly more boys (28%) than girls (23%) received BTX-A (OR = 1.25, [95% CI 1.05-1.48]). Significant differences were found for age and GMFCS levels; 4-6 year-olds and those at GMFCS III-IV were more likely to receive BTX-A. BTX-A treatment in the gastrocnemius muscle was most common in the 4-6 year-olds and at GMFCS I-III, whereas treatment of the hamstring and adductor muscles was more common in older children and at GMFCS IV-V. No significant change in the proportion of BTX-A administered in 2010 and 2015 was demonstrated. CONCLUSIONS: BTX-A treatment differed based on age, sex, and GMFCS level. Proportion of BTX-A treatment in Sweden has remained stable during the past five years.

Pain in children and adolescents with cerebral palsy: a population-based registry study.

AIM: We assessed prevalence and location of pain in a total population of children and adolescents with cerebral palsy (CP) based on the Gross Motor Function Classification System (GMFCS), age and gender. METHODS: This cross-sectional study was based on the last assessment of children aged 1-14 years in the combined Swedish follow-up programme and national quality register programme for CP. All were born 2001-2012 and reported to the registry in 2013-2014. Logistic regression was used to regress age, gender and the GMFCS level on the presence of pain. We also assessed pain sites among GMFCS groups. RESULTS: We included 2777 children (57% boys) at a median age of 7 years; 32.4% reported pain, with significantly more girls than boys experiencing pain and significantly more children at GMFCS levels III and V than GMFCS I. Pain frequency increased with age and differences among GMFCS levels were found in the lower extremities and abdomen. Pain in the abdomen and hips was most frequent at GMFCS V, knee pain at level III and foot pain at level I. CONCLUSION: Our results showed that although a lower prevalence than in many other studies, pain constituted a significant problem in children and adolescents with CP.

Oral contraceptive use in women with spina bifida in Sweden.

BACKGROUND: Thanks to improved medical care, individuals with spina bifida (SB) live well into adulthood and go through the process of reproductive maturation and the development of sexual desires. However, access to reproductive counselling and contraceptive use has been reported to be lower for women with physical and intellectual disabilities compared to the general population. OBJECTIVE: We investigated oral contraceptive use in women with SB, residing in Sweden and how use varies based on the level of lesion and demographic factors. METHODS: This was a population-based case-control study using annual data from national registers from 2006 to 2015. The sample consisted of 7045 women aged 15-49 years, of which 1173 had a diagnosis of SB. χ2 tests and logistic regression were used to investigate the study objective. RESULTS: The rate of oral contraceptive use in women with SB was 24.6 % compared to 34.5 % among the general population. After adjusting for potential confounders women with SB were found to have a lower probability of using oral contraceptives (OR 0.63 95 % CI 0.56-0.71) compared to women without SB. Among women with SB, those with diagnoses Q05.8 (Sacral SB without hydrocephalus) and Q05.9 (SB unspecified) had a higher likelihood of using oral contraceptives compared to other Q05 diagnoses. CONCLUSION: Women with SB had a lower likelihood of being on oral contraceptives compared to the control group. Further research should investigate if the lower use indicates that oral contraceptives are not an inappropriate method of contraception for women with SB.