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.

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.

Survival and causes of death in adults with spina bifida in Sweden: a population-based case-control study.

OBJECTIVE: To analyse survival rates and causes of death in adults with spina bifida in Sweden compared with a matched control group. DESIGN AND METHODS: This population-based study included 11,900 adults born between 1950 and 1997. Three national Swedish registers were used to identify individuals with a diagnosis of spina bifida and a matched control group without spina bifida in the period 1990-2015. International Classification of Diseases codes were used to identify causes of death. Survival analysis was conducted and causes of death in the 2 groups were compared. RESULTS: There was a lower probability of survival for people with spina bifida in all age groups (p < 0.001) compared with the control group. The most prevalent causes of death in people with spina bifida were congenital, respiratory, nervous, cardiovascular, genitourinary, and injuries. People with spina bifida had a higher probability of dying from congenital (p < 0.001), respiratory (p = 0.002), genitourinary (p < 0.002), and nervous-related (p < 0.001) and lower probability of injury-related deaths (p < 0.001). CONCLUSION: Adults with spina bifida in Sweden have a lower survival rate compared with the general population, with the frequency of certain causes of death differing between the two groups. In order to reduce excess premature mortality, prevention and careful management of potentially fatal conditions are essential throughout a patient's lifespan.

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.

Pain and labor outcomes: A longitudinal study of adults with cerebral palsy in Sweden.

BACKGROUND: Pain is a global health concern with substantial societal costs and limits the activity participation of individuals. The prevalence of pain is estimated to be high among individuals with cerebral palsy (CP). OBJECTIVES: To estimate the association between pain and labor outcomes for adults with CP in Sweden. METHODS: A longitudinal cohort study based on data from Swedish population-based administrative registers of 6899 individuals (53,657 person-years) with CP aged 20-64 years. Individual fixed effects regression models were used to analyze the association between pain and labor outcomes (employment and earnings from employment), as well as potential pathways through which pain might affect employment and earnings. RESULTS: Pain was associated with adverse outcomes varying across severity, corresponding to a reduction of 7-12% in employment and 2-8% in earnings if employed. Pain might affect employment and earnings through increased likelihood of both sickness leave and early retirement. CONCLUSION: Pain management could potentially be important to improve labor outcomes for adults with CP, in addition to improving the quality of life.

The implementation of systematic monitoring of cognition in children with cerebral palsy in Sweden and Norway.

PURPOSE: Children with cerebral palsy (CP) are at risk of cognitive impairments and need to be cognitively assessed to allow for individualized interventions, if applicable. Therefore, a systematic protocol for the follow-up of cognition in children with CP, CPCog, with assessments offered at five/six and 12/13 years of age, was developed. This report presents and discusses assessment practices in Sweden and Norway following the introduction of CPCog and a quality improvement project in Norway aimed at increasing the number of children offered cognitive assessments. MATERIALS AND METHODS: A questionnaire investigating assessment practices was sent to pediatric habilitation centers in Sweden and Norway. In Norway, the habilitation centers also participated in a quality improvement project aimed at increasing adherence to the CPCog protocol. RESULTS: Of the respondents, 64-70% report that they assess cognition in children with all degrees of motor impairment, and 70-80% assess at the ages recommended in CPCog. Following the quality improvement project in Norway, the percentage of children assessed increased from 34 to 62%. CONCLUSIONS: The findings illustrate that the provision of information is not sufficient to change practice. Implementation of new re/habilitation procedures is aided by targeting health care practices individually.Implications for rehabilitationChildren with cerebral palsy (CP) have increased risk of cognitive impairments that require intervention.Assessments of cognition should be offered to all children with CP because the nature of cognitive impairments may vary.Introducing a follow-up protocol of how and when to perform cognitive assessments is a step towards ensuring equal access to the services for all children with CP.A quality improvement project might be a viable method for implementing a protocol into everyday clinical practice.

Cognitive assessments among children with cerebral palsy in Sweden and the use of augmentative and alternative communication and interpreters: a cross-sectional registry study.

PURPOSE: Children with cerebral palsy (CP) have an increased risk of cognitive difficulties and should be offered cognitive assessments. In Sweden, the CPCog protocol recommends children with CP undergo cognitive assessments at the start of primary and secondary school. To assess children with CP can be challenging, in particular when children are non-vocal or do not speak the local language. In such instances, augmentative and alternative communication (AAC) and qualified medical interpreters should be considered. The purpose of this study was to monitor the implementation and equitable delivery of the CPCog protocol in Sweden between the years 2017-2020. MATERIALS AND METHODS: In this cross-sectional study, registry data were extracted from the combined follow-up program and national registry for individuals with CP (CPUP), and a convenience sample of psychologists responded to an online survey. RESULTS AND CONCLUSIONS: Each year, less than 5% of eligible children had registered cognitive assessments in CPUP. There was underuse of AAC during assessments and a discrepancy between the registered versus reported use of interpreters. Psychologists perceived AAC as more reliable for cognitive assessments than interpreters. Greater availability of and capacity to offer cognitive assessments in other formats and languages could help increase test accessibility for all children with CP.Implications for RehabilitationThe cognitive assessment of children with cerebral palsy (CP) is a complex but important issue within disability and re/habilitation.Individualized cognitive assessments should be offered and carried out by psychologists.Rehabilitation centers should strive to be inclusive through reliable test adaptations for functional abilities, means of communication, and language.Greater availability of- and capacity to offer cognitive assessments in more formats and languages could help increase test accessibility for children with disabilities.

Parents' report on the health care management of spina bifida in early childhood.

PURPOSE: This study aimed to describe health care use by type of health providers and care settings visited by children with spina bifida (SB) and to compare this use between children with and without a shunt. METHODS: Health care use data were extracted from a larger study on the health and functioning of children with SB aged 3-6 years. The present study focused on the medical information subsection of a parent-reported survey related to SB care, general care, specialty care (e.g., neurosurgery), emergency care, and complications related to SB and shunts. RESULTS: Parents of 101 children with SB participated. Most of the children were male with myelomeningocele and had a shunt. They visited a health care provider for SB care an average of 7.4 times and a specialist an average of 11.9 times in the previous 12 months. Most visited a multidisciplinary clinic for SB-related care and a private physician's office for general care. Children with a shunt had more SB-related medical visits, more visits to a specialist, and a greater number of different types of specialists than those without it. Frequency of emergency room visits did not differ between the two groups. Health providers informed parents about headaches, vomiting, and fever as signs of complications, and some parents did report shunt-related complications. CONCLUSION: SB is a complex medical condition requiring that children receive medical care from various medical specialists, especially for children with a shunt. Findings on health care use suggest high levels of monitoring and care coordination that parents navigate to care for their child.

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.

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

Purpose: The aim was to study the prevalence of hip displacements, dislocations, and the hip surgeries performed in a Finnish cohort of children with cerebral palsy not followed up in a hip surveillance program and to compare these with previous studies performed in Northern European countries before and after the implementation of hip surveillance programs. Methods: A cross-sectional study. A cohort including 480 children with cerebral palsy, born during the period 2000-2018, not enrolled in a hip surveillance program. Migration percentages were recorded from hip radiographs, age at first hip surgery and type of surgery was extracted from medical records. In a separate analysis, the inclusion criteria were adapted to fit two studies analyzing hip dislocation and hip surgery in Sweden, Norway, and Scotland before and after the implementation of a hip surveillance program. Chi-square tests were used to assess differences in proportions between the groups. Results: In total, 286 children (60%) have had at least one hip radiograph. Of these, 10 (3.5%) developed hip dislocation, which is more than in children of countries with hip surveillance programs (Sweden 0.7%, Scotland 1.3%, p < 0.001). Initial surgery to prevent hip dislocation was performed at an older age (p < 0.001). Conclusion: Children with cerebral palsy in Finland not participating in a surveillance hip program were more likely to undergo hip surgery at an older age and to develop hip displacements and dislocations. The results support the effectiveness of surveillance programs to prevent hip dislocation in children with cerebral palsy. Level of evidence: III.

Pain burden in children with cerebral palsy (CPPain) survey: Study protocol.

Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.

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.

Site, frequency, and duration of pain in young children with spina bifida.

PURPOSE: To investigate the: (1) percent of children with spina bifida (SB) complaining of pain, (2) frequency, duration, and cause of pain by sex, level of lesion type of SB, and ambulation status, (3) body sites reported to hurt, by variables in objective 2, and (4) associations between physical and mental/emotional health between caregiver and child. METHODS: Cross-sectional study of 101 caregivers of children (3 to 6 years old) with SB. Survey data and information from medical records were included. Pearson chi-square, one-way ANOVA, Fisher's exact test, logistic regressions, and bivariate correlations were used. RESULTS: Seventy percent reported that their child complained of pain, which did not significantly differ by sex, level of lesion, type of SB, or ambulation status. Most (86%) were reported to have experienced pain for less than 24 hours. The most frequently reported pain site was the head, followed by the abdomen and the lower body. Number of pain sites was moderately correlated with frequency of pain complaints. Correlations between how caregivers reported their own physical/mental/emotional health and how they rated that of their children ranged from weak (r = 0.22) to moderate (r = 0.55). CONCLUSION: Almost seven of ten children reportedly complained of pain ranging from at least once a month to everyday. Pain needs to be routinely assessed and treated in this population.

Systematic Monitoring of Cognition for Adults With Cerebral Palsy-The Rationale Behind the Development of the CPCog-Adult Follow-Up Protocol.

Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2-2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a "childhood disability," but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CPCog, has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CPCog-Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual-spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CPCog-Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood.

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.

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.

Self-versus Proxy-Reported Pain in Children with Cerebral Palsy: A Population-Based Registry Study of 3783 Children.

Objective: To assess how the prevalence of pain in a population-based sample of children and adolescents with cerebral palsy (CP) differ based on self- or proxy reporting. Methods: This cross-sectional registry study included 3783 children (58% boys), 1 to 18 years old, enrolled in the Swedish follow-up program for CP. Logistic regression was used to regress source of reporting (self or proxy) on the presence of general pain adjusted for age, sex, Gross Motor Function Classification System (GMFCS), and Communication Function Classification System (CFCS) levels, including marginal effects between source of reporting and adjusted covariates. Results: The pain item was self-reported in 45%, proxy-reported in 51%, and information was missing in 3%. Pain was reported in 44% of those who self-reported and in 41% of those who proxy-reported (P = .04). The logistic regression showed that the average marginal effects of proxy versus self-reported pain were lower among children at GMFCS level IV (-0.14, 95% CI -0.17 to -0.03) and CFCS level I (-0.09, CI -0.16 to -0.01) and higher at CFCS level III (0.11, CI 0.00-0.22). There were no statistically significant differences in average marginal effects related to age, sex, or the other GMFCS and CFCS levels between proxy and self-reporting. Conclusions: Pain was more often reported by those who self-reported. However, after adjusting for age, sex, CFCS level, and GMFCS level, the proportion of reported pain was almost equal between self and proxy-reporting. Assuming that the self- and proxy-reported groups were not significantly different on relevant factors not controlled for the results indicate that presence of pain is equally reported by children and parents.

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.

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.