The Impact of Child Disability on Parental Outcomes: Evidence From Sweden.

Parents of children with disabilities may face higher labor-market penalties given the extra care and support required. Using Swedish administrative data, we focus on first-born children with Cerebral Palsy (CP) to estimate impacts on parental labor-market outcomes. We apply an event study approach to identify effects up to 10 years after the birth of the child.

Risk of divorce and likelihood of having additional children among families with children with spina bifida: A Swedish population-based longitudinal register study.

Background: To raise a child with disability might present challenges and affect the functioning of the family unit. In this study, the risk of divorce for parents of children with spina bifida and the probability of having additional children were analysed.

Methods: Longitudinal, matched case-control, data between 2004 and 2014 from multiple linked Swedish Population Registers were analysed using Cox proportional hazard models with interval censoring.

Pain characteristics and impact of pain in individuals with spina bifida: Systematic review and meta-analysis.

Background: Pain is prevalent in spina bifida (SB), yet, it has received limited attention in research and healthcare.

Objective: To investigate pain severity, common pain sites, and pain interference with daily activities and sleep in individuals with SB.

Methods: Literature was last searched in Scopus, Web of Science, Embase, PubMed, CINAHL, and Academic Search Complete in July 2024.

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.

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.

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.

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.

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.

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).

CP-North: living life in the Nordic countries? A retrospective register research protocol on individuals with cerebral palsy and their parents living in Sweden, Norway, Denmark, Finland and Iceland.

Introduction: Cerebral palsy (CP) is one of the most common neurodevelopmental disabilities. Yet, most individuals with CP are adults. How individuals with CP fare in terms of health, quality of life (QoL), education, employment and income is largely unknown.

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.