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).

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.

Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates.

Purpose: This project aimed to launch an international learning community to guide the development of a spina bifida (SB) curriculum for global health trainees.

Methods: Using a descriptive study design, a convenience sample of SB curricula were identified in 2022-23 by members of the Spina Bifida World Congress Outreach Committee and evaluated during a series of monthly Zoom calls to discuss SB education in a global health context. Participants included (1) leadership from the ReachAnother Foundation, (2) invited panelists from the Spina Bifida World Congress Global Health Symposium, and (3) global health students and preceptors.

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.

[Significant medical improvements with CPUP - a combined follow-up program and national quality registry for cerebral palsy].

CPUP is a combined follow-up program and national quality registry for cerebral palsy (CP). Since its inception in southern Sweden in 1994, CPUP has expanded geographically to cover all of Sweden, and similar programs are used in several northern European countries. Over 95% of all children with CP in Sweden, and a growing proportion of adults, are followed according to CPUP.

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.

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.

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.

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 CP 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.

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.

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, CP, 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 CP and a quality improvement project in Norway aimed at increasing the number of children offered cognitive assessments.

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.

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.

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.

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.

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.

Systematic Monitoring of Cognition for Adults With Cerebral Palsy-The Rationale Behind the Development of the CP-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.

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.

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.

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).

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.

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.

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

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. 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.

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).

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).