Cerebral Palsy Register Research Articles

Data linkage and pain medication in people with cerebral palsy: a cross-sectional study.

To explore data linkage and pain medication as a proxy for pain, to assess differences in pain medication between the cerebral palsy (CP) and the general populations, and to identify factors associated with pain medication in CP. This cross-sectional study linked the Northern Ireland CP Register and two administrative health care databases for people resident in Northern Ireland born between 1981 and 2008. Pain medication as a proxy was validated by replicating analyses from the Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE) studies. Logistic regression compared pain medication in the CP and general populations. Multi-level regression models assessed factors associated with pain medication in the CP cohort. The sample size was 701075, of whom 1430 (0.2%) were people with CP. There were 358969 males and 340677 females in the general population, and 810 males and 620 females in the CP population, with an age range of 4 to 31years in both groups. The validation exercise produced results similar to the SPARCLE studies. More people with CP received pain medication (61% vs 50.9%) and had twice the odds of being prescribed opioid analgesics (odds ratio [OR]=2.81, 95% confidence interval [CI] 2.32-3.40). Among those with CP, the odds of being prescribed pain medication were higher for: females (OR=1.34, 95% CI 1.06-1.70), younger age (OR=1.60, 95% CI 1.02-2.51), Gross Motor Function Classification System level V (OR=2.60, 95% CI 1.52-4.47), seizures (OR=2.55, 95% CI 1.68-3.87), and higher deprivation score (OR=2.06, 95% CI 1.41-3.24). Pain medication is an effective proxy for pain. More people with CP were prescribed pain medication than the general population. Pain medication for people with CP is not only dependent on physiological and clinical characteristics, but also environmental factors. What this paper adds Data linkage using pain medication as a proxy for experiencing pain is a valid method. People with cerebral palsy (CP) are more likely to experience pain than the general population. People with CP have over twice the odds of receiving opioids compared to the general population. The odds of being prescribed pain medication were higher for females with CP. Prescription of pain medication among those with CP is not only dependent on clinical characteristics, but also environmental factors.

Changes in walking ability, intellectual disability, and epilepsy in adults with cerebral palsy over 50 years: a population-based follow-up study.

To determine if walking ability and presence of intellectual disability and epilepsy change from childhood to 50years of age in individuals with cerebral palsy (CP), and if such changes are related to age, sex, or CP subtype. This was a population-based follow-up study of 142 adults born from 1959 to 1978 (82 males, 60 females; mean age 48y 4mo, range 37-58y; 44% unilateral, 35% bilateral, 17% dyskinetic, and 4% ataxic CP) listed in the CP register of western Sweden. We compared childhood data with a follow-up assessment in 2016. At follow-up, walking ability had changed significantly (p<0.001). The proportion of participants walking without aids had decreased from 71% to 62%, and wheelchair ambulation increased from 18% to 25%. Walking ability was related to subtype (p=0.001), but not to age, sex, pain, fatigue, or body mass index. The proportion classified as having intellectual disability had increased from 16% to 22% (p=0.039) and the proportion with epilepsy from 9% to 18% (p=0.015). Of those with childhood epilepsy, 46% were seizure-free without medication. Walking ability and the presence of intellectual disability and epilepsy had changed significantly since childhood. Life-long access to specialized health care is warranted for re-evaluation of impairments, treatment, and assistance. What this paper adds Changes in impairments in individuals with cerebral palsy (CP) over time are related to CP subtype. After 50years, walking ability in CP may have deteriorated or improved. Intellectual disability in CP may not always be detected in early childhood assessments. Epilepsy in CP may develop after childhood or may be outgrown.

Comprehensiveness, Coordination and Continuity in Services Provided to Young Children with Cerebral Palsy and Their Families in Norway

ABSTRACT Background Cerebral palsy (CP) is one of the most common childhood disorders requiring comprehensive and coordinated care over time. This study aimed to add knowledge about health, educational and social services received by children and families throughout early childhood, with special attention on coordination services provided. Methods The study was designed as a prospective longitudinal cohort study utilising data from two CP registers in Norway. Fifty-seven families with children with CP aged 12–57 months with different levels of mobility limitations classified according to the Gross Motor Function Classification System were included. Services were mapped via the parent-reported Habilitation Service questionnaire at least three times. The relationships between mobility limitations and the number of services and type of coordination services were explored using a linear mixed model and Chi Square/Fischer’s exact test. Continuity in the provision of services was explored by identifying interruptions in the longitudinal reports on services received. Results Most of the families received both health, education and social services as well as some types of coordination services. The number and type of services received varied to some extent depending on the children’s mobility limitations. Multidisciplinary team and an individual service plan were widespread coordination services, while having a service coordinator was most common among the families raising a child with severe mobility limitations. Interruptions in the longitudinal reporting of services were frequent, especially in the receiving of coordination services. Conclusion The comprehensiveness of the provided services emphasises the need for coordination services. The relatively low proportion of families provided with a coordinator and the frequent interruptions in the longitudinal reports on services indicate some persistent challenges in the service system.

Causes, functional outcomes and healthcare utilisation of people with cerebral palsy in Singapore

A voluntary cerebral palsy (CP) registry was established in 2017 to describe the clinical characteristics and functional outcomes of CP in Singapore. People with CP born after 1994 were recruited through KK Women's and Children's Hospital, National University Hospital and Cerebral Palsy Alliance Singapore. Patient-reported basic demographics, service utilisation and quality of life measures were collected with standardised questionnaires. Clinical information was obtained through hospital medical records. Between 1 September 2017 and 31 March 2020, 151 participants were recruited. A majority (n=135, 89%) acquired CP in the pre/perinatal period, where prematurity (n=102, 76%) and the need for emergency caesarean section (n=68, 50%) were leading risk factors. Sixteen (11%) of the total participants had post-neonatally acquired CP. For predominant CP motor types, 109 (72%) had a spastic motor type; 32% with spastic mono/hemiplegia, 41% diplegia, 6% triplegia and 21% quadriplegia. The remaining (42, 27.8%) had dyskinetic CP. Sixty-eight (45.0%) participants suffered significant functional impairment (Gross Motor Functional Classification System levels IV-V). Most participants (n=102, 67.5%) required frequent medical follow-up (≥4 times a year). Optimisation of pre- and perinatal care to prevent and manage prematurity could reduce the burden of CP and their overall healthcare utilisation.

Reproducibility and validity of the Functional Communication Classification System for young children with cerebral palsy.

To examine interrater agreement and validity of the Functional Communication Classification System (FCCS) for young children with cerebral palsy (CP) aged 2 or 3 years. Speech-language pathologist (SLP) and parent FCCS ratings for 31 children with CP (aged 2y, n=16; aged 3y, n=15; 18 males, 13 females) were examined for interrater agreement using a weighted Cohen's kappa statistic. Relationships between FCCS (SLP) ratings and: (1) concurrent validity with the Language Use Inventory, a standardized pragmatic assessment for children aged 18 to 47 months, (2) gross motor and fine motor function, (3) associated impairments (visual and intellectual), and (4) primary expressive communication mode were examined using Spearman's correlation coefficients. Almost perfect interrater agreement between SLP and parent FCCS ratings were found (kw =0.94). Correlations with FCCS (SLP) were excellent for pragmatic function (rs =-0.83,p<0.001), intellectual function (rs =0.89, p<0.001), and primary expressive communication mode (rs =0.92,p<0.001). Correlations were good for gross motor function (rs =0.72,p<0.001) and visual impairment (rs =0.70,p<0.001) and fair for fine motor function (rs =0.53,p<0.002). Analysis was unwarranted for epilepsy (n=1 out of 31) and hearing-associated impairments (n=0 out of 31). The FCCS has excellent interrater agreement and validity for communication classification of children with CP aged 2 or 3 years and is highly suitable for surveillance and research purposes. What this paper adds The Functional Communication Classification System (FCCS) is a valid instrument for children with cerebral palsy (CP) aged 2 or 3 years. Excellent agreement exists between speech-language pathologist and parent FCCS ratings. The FCCS has excellent correlation with intelligence, pragmatic function, and primary expressive mode. Stronger correlations with the Gross Motor Function Classification System and vision exist for children aged 2 or 3 years. Weaker correlations with manual ability exist when compared to older children with CP.

Moderately and Late Preterm Infants: Short- and Long-Term Outcomes From a Registry-Based Cohort.

Background: While most studies on the association of preterm birth and cerebral palsy (CP) have focused on very preterm infants, lately, attention has been paid to moderately preterm [32 to <34 weeks gestational age (GA)] and late preterm infants (34 to <37 weeks GA).Methods: In order to report on the outcomes of a cohort of moderately and late preterm infants, derived from a population-based CP Registry, a comparative analysis of data on 95 moderately preterm infants and 96 late preterm infants out of 1,016 with CP, was performed.Results: Moderately preterm neonates with CP were more likely to have a history of N-ICU admission (p = 0.001) and require respiratory support (p < 0.001) than late preterm neonates. Birth weight was significantly related to early neonatal outcome with children with lower birth weight being more likely to have a history of N-ICU admission [moderately preterm infants (p = 0.006)/late preterm infants (p < 0.001)], to require ventilator support [moderately preterm infants (p = 0.025)/late preterm infants (p = 0.014)] and not to have neonatal seizures [moderately preterm infants (p = 0.044)/late preterm infants (p = 0.263)]. In both subgroups, the majority of children had bilateral spastic CP with moderately preterm infants being more likely to have bilateral spastic CP and less likely to have ataxic CP as compared to late preterm infants (p = 0.006). The prevailing imaging findings were white matter lesions in both subgroups, with statistically significant difference between moderately preterm infants who required ventilator support and mainly presented with this type of lesion vs. those who did not and presented with gray matter lesions, maldevelopments or miscellaneous findings. Gross motor function was also assessed in both subgroups without significant difference. Among late preterm infants, those who needed N-ICU admission and ventilator support as neonates achieved worse fine motor outcomes than those who did not.Conclusions: Low birth weight is associated with early neonatal problems in both moderately and late preterm infants with CP. The majority of children had bilateral spastic CP and white matter lesions in neuroimaging. GMFCS levels were comparable in both subgroups while BFMF was worse in late preterm infants with a history of N-ICU admission and ventilator support.

Cerebral palsy in twins and higher multiple births: a Europe‐Australia population‐based study

To describe the birth prevalence, temporal trends, and clinical outcomes of twins, triplets, or quadruplets with cerebral palsy (CP). This was a cross-sectional study using data for twins, triplets, and quadruplets with prenatally or perinatally acquired CP and pooled from the Surveillance of Cerebral Palsy in Europe network (born 1992-2009) and Australian Cerebral Palsy Register (born 1993-2009). Children were at least 4 years old at time of registration. Children born in regions with population ascertainment and available denominator data were included in prevalence calculations (n=1033 twins, 81 triplets, and 11 quadruplets). Clinical data from children registered in all participating registers were described, including 2163 twins (56% male), 187 triplets (59% male), and 20 quadruplets (45% male). The birth prevalence of CP was higher with increasing plurality (twins 6.5 per 1000 live births [95% confidence interval {CI} 6.1-6.9], triplets 17.1 [95% CI 13.6-21.2], quadruplets 50.7 [95% CI 25.6-88.9]); however, prevalence by gestational age was similar across all pluralities. Between 1992-1994 and 2007-2009, prevalence of CP among twins declined (p=0.001) but prevalence of CP among triplets did not change significantly over time (p=0.55). The distributions of Gross Motor Function Classification System, epilepsy, and impairments of intellect, vision, and hearing were similar regardless of plurality. The data combined from two CP register networks indicated that triplets and quadruplets had increased risk of CP compared to twins. The higher prevalence of CP in triplets and quadruplets is due to their higher risk of preterm birth. Prevalence of CP among twins significantly declined in Europe and Australia. Clinical outcomes were similar for all multiple births.

Congenital anomalies in children with postneonatally acquired cerebral palsy: an international data linkage study.

To describe the major congenital anomalies present in children with postneonatally acquired cerebral palsy (CP), and to compare clinical outcomes and cause of postneonatally acquired CP between children with and without anomalies. Data were linked between total population CP and congenital anomaly registers in five European and three Australian regions for children born 1991 to 2009 (n=468 children with postneonatally acquired CP; 255 males, 213 females). Data were pooled and children classified into mutually exclusive categories based on type of congenital anomaly. The proportion of children with congenital anomalies was calculated. Clinical outcomes and cause of postneonatally acquired CP were compared between children with and without anomalies. Major congenital anomalies were reported in 25.6% (95% confidence interval [CI] 21.7-29.9) of children with postneonatally acquired CP. Cardiac anomalies, often severe, were common and present in 14.5% of children with postneonatally acquired CP. Clinical outcomes were not more severe in children with congenital anomalies than those without anomalies. Cause of postneonatally acquired CP differed with the presence of congenital anomalies, with cerebrovascular accidents predominating in the anomaly group. Congenital anomalies were likely associated with cause of postneonatally acquired CP in 77% of children with anomalies. In this large, international study of children with postneonatally acquired CP, congenital anomalies (particularly cardiac anomalies) were common. Future research should determine specific causal pathways to postneonatally acquired CP that include congenital anomalies to identify opportunities for prevention. One-quarter of children with postneonatally acquired cerebral palsy (CP) have a major congenital anomaly. Cardiac anomalies, often severe, are the most common anomalies. Causes of postneonatally acquired CP differ between children with and without congenital anomalies.

Objective of the Peads Network to Evaluate the Performance of Active Monitoring of Children Hospital Encephalitis

Aim: Additionally, in case of lack of tools for normalized information supply, the study on the transmission of diseases, pathogens, executives and outcomes of cerebral paralysis in poor-income nations, especially Pakistan, is opaque. Methods: In this research we draw the convention to promote a clinical observation framework proven in Australia on the framework for pediatric active improved infection surveillance. The etiology, engine capacity and its severity, associated impedances, and the health and rehabilitation status of young people with CP in Lahore, Pakistan will describe the PAEDSPakistan use. Our current research was conducted at Jinnah Hospital, Lahore from March 2020 to February 2021. These basic patterns of information will provide light on future well-being management, good education, preparation and support for family life. This is an intended medical clinical recognition of CP children who have introduced restorative science, nervous system science, and pediatric services in general at the National Children's Hospital and the Lahore St INTRODUCTION The primary cause of juvenile incapacity in the globe is cerebral paralysis (CP). This is the world's largest cause of young people's impairment. It effects up to 19 million people throughout the world, with a prevalence of about 2 per 1500 of about 2 per 1,050 new births, according to information received from nations where treatment is crucial [1]. PC's pervasiveness in low-income nations is four to multiple times greater, and there's little trustworthy information accessible in any case. In Pakistan, there are around 600,000 CP residents and 35 to 45% of all impairments. The incidence of CP probably varies throughout Pakistani areas. Pakistan regions. For instance, in the all-inclusive village of Lahore the prevalence of CP was 0.6 per 1000 of the population in Lahore and 1.6 per 2000 [2]. The methodological character of the research, the methodological character of the study, the small number of cases and the potential defect in CP frequency limit the information. The methodological aspect of the investigation is based on this information. In one treatment in Pakistan an increase in the incidence of CP patients has been seen. At that point in 2018, there were 394 (25.7 percent) of all CP children awarded CP. This number multiplied to 916 (48.4%) of all confirmations in 2020. This number was increased repeatedly. The number of CP-sufficient children in Pakistan of CP-sufficient children is expected to range between 34% and 75%, however without detailed epidemiological data this could not be reliably verified [3]. No big epidemiological information. To yet, the CP assistance conveyance has been seen as a priority by the Pakistani health ministry. In addition, Pakistan's new welfare shift in wellbeing has established an overall inclusion of Paul Urgency Clinic. For all CP-mature children <18 years who are hospitalized or present to surgical offices we will use dynamic case-finding day by day. Information is collected from the Australian cerebral palsy register by using the modified variation following parental consent. In interviews with neighborhood and international professionals the information range structure was established and translated into Urdu. Results: The collected data will include socio-economics, maternal welfare as well, birth history, type and severity of CP, recognized CP risk factors as well as the status of feeding, immunization, training and restoration. Conclusion: The PAEDS-Pakistan Foundation will provide Pakistan with unprecedented hospital-based CP recognition.

Population-based study on the prevalence and clinical profile of adults with cerebral palsy in Northern Ireland

ObjectivesThis study aimed to report the prevalence and clinical characteristics of adults with cerebral palsy (CP) in a geographically defined region of the UK.Design and settingCross-sectional study using the Northern...

Cerebral palsy in Canadian Indigenous children.

To determine whether inequities in health outcomes for Indigenous Canadians are also present in cerebral palsy (CP) by comparing CP profiles between Indigenous and non-Indigenous children. Using the Canadian Cerebral Palsy Registry, we conducted a cross-sectional study. CP motor subtype, gross motor severity, comorbidities, perinatal adversity, preterm birth, and parental education were compared between 94 Indigenous (53 males, 41 females) and 1555 non-Indigenous (891 males, 664 females) children (all >5y). Multivariate analysis was done to analyze adverse CP factors, defined as CP gross motor severity and comorbidities. CP etiologies, either prenatal/perinatal or postnatal, were also compared. Indigenous children with CP have higher odds of having low parental education (odds ratio [OR] 6.15, 95% confidence interval [CI] 3.36-11.3) and comorbidities (OR 4.46, 95% CI 1.62-12.3), especially cognitive (OR 4.52, 95% CI 2.27-9.05), communication (OR 2.66, 95% CI 1.54-4.61), and feeding (OR 2.25, 95% CI 1.33-3.83) impairment. Indigenous children also have higher CP gross motor severity (p=0.03). Indigenous children are also more likely to have non-accidental head injury (n=4; OR 8.18, 95% CI 1.86-36.0) as the cause of their postnatal CP. Indigenous populations have worse health outcomes as a result of intergenerational impacts of colonization. Our study shows that Indigenous children with CP have increased comorbidities and higher CP gross motor severity, reinforcing the need for a multidisciplinary approach to management. Furthermore, targeted prevention programs against preventable causes of CP, such as non-accidental head injury, may be beneficial. Indigenous children with cerebral palsy (CP) have more severe motor impairment and more comorbidities. Non-accidental head injury is a significant cause of postnatal CP.

Autism and attention-deficit/hyperactivity disorder in children with cerebral palsy: high prevalence rates in a population-based study.

AimTo assess a total population of school‐age children with cerebral palsy (CP) for autism and attention‐deficit/hyperactivity disorder (ADHD) with a view to determining their prevalence and to relate findings to motor function, intellectual disability, and other associated impairments.MethodOf 264 children, born between 1999 and 2006, from the CP register of western Sweden, 200 children (109 males, 91 females, median age at assessment 14y, range 7–18y) completed comprehensive screening and further neuropsychiatric clinical assessments.ResultsNinety children (45%) were diagnosed with autism, ADHD, or both, 59 (30%) were diagnosed with autism, and 60 (30%) were diagnosed with ADHD. Intellectual disability was present in 51%. Two‐thirds had autism, ADHD, and/or intellectual disability. In regression models, autism was mainly predicted by intellectual disability (odds ratio [OR]=4.1) and ADHD (OR=3.2), and ADHD was predicted by intellectual disability (OR=2.3) and autism (OR=3.0). Autism was more common in children born preterm (OR=2.0). Gross motor function was not associated with autism. ADHD prevalence was low in children with severe motor impairment, possibly due to diagnostic limitations.InterpretationAutism and ADHD were common in this population of children with CP and were mainlyindependent of motor severity and CP type. The strongest predictor of autism/ADHD was intellectual disability. Assessment for autism and ADHD is warranted as part of the evaluation in CP.What this paper adds Forty‐five percent of the children with cerebral palsy also had autism, attention‐deficit/hyperactivity disorder (ADHD), or both.Autism and ADHD were predicted mainly by intellectual disability.Established diagnostic instruments worked well for all but the most disabled group of children.

Risk factors for gastrointestinal complications after spinal fusion in children with cerebral palsy.

Prospective cerebral palsy (CP) registry review. (1) Evaluate the incidence/risk factors of gastrointestinal (GI) complications in CP patients after spinal fusion (SF); and (2) investigate the validity of the modified Clavien-Dindo-Sink classification. Perioperative GI complications result in increased length of stay (LOS) and patient morbidity/mortality. However, none have analyzed the outcomes of GI complications using an objective classification system. A prospective/multicenter CP database identified 425 children (mean, 14.4 ± 2.9 years; range, 7.9-21 years) who underwent SF. GI complications were categorized using the modified Clavien-Dindo-Sink classification. Grades I-II were minor complications and grades III-V major. Patients with and without GI complications were compared. 87 GI complications developed in 69 patients (16.2%): 39 minor (57%) and 30 major (43%). Most common were pancreatitis (n = 45) and ileus (n = 22). Patients with preoperative G-tubes had 2.2 × odds of developing a GI complication compared to oral-only feeders (OR 2.2; 95% CI 0.98-4.78; p = 0.006). Similarly, combined G-tube/oral feeders had 6.7 × odds compared to oral-only (OR 6.7; 95% CI 3.10-14.66; p < 0.001). The likelihood of developing a GI complication was 3.4 × with normalized estimated blood loss (nEBL) ≥ 3ml/kg/level fused (OR 3.41; 95% CI 1.95-5.95; p < 0.001). Patients with GI complications had more fundoplications (29% vs. 17%; p = 0.03) and longer G-tube fasting periods (3days vs. 2days; p < 0.001), oral fasting periods (5 days vs. 2 days; p < 0.001), ICU admissions (6 days vs. 3 days; p = 0.002), and LOS (15 days vs. 8 days; p < 0.001). LOS correlated with the Clavien-Dino-Sink classification. Gastrointestinal complications such as pancreatitis and ileus are not uncommon after SF in children with CP. This is the first study to investigate the validity of the modified Clavien-Dindo-Sink classification in GI complications after SF. Our results suggest a correlation between complication severity grade and LOS. The complexity of perioperative enteral nutritional supplementation requires prospective studies dedicated to enteral feeding protocols. Therapeutic-level III.

The hip in cerebral palsy

Hip displacement in children with cerebral palsy (CP) is a complex problem and requires a multidisciplinary team approach. It is the most common orthopaedic problem in the non-ambulatory group of children and causes significant pain, which can be prevented or treated with appropriate management. Hip subluxation occurs due to asymmetrical muscle imbalance in the context of abnormal proximal femoral morphology. Work from CP registries has shown strong correlation between Gross Motor Function Classification System (GMFCS) level and rate of hip displacement. This has led to the development of preventative surveillance programmes. This review focuses particularly on non-ambulatory patients (GMFCS IV/V) and the options open to the paediatric orthopaedic surgeon in managing associated hip displacement. Surgical strategies can be broadly grouped into preventative, reconstructive and salvage options.

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

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

Hospitalizations in School-Aged Children with Cerebral Palsy and Population-Based Controls.

To compare hospitalizations among children with cerebral palsy (CP) and healthy controls and to identify factors associated with hospitalizations in children with CP. This retrospective cohort study linked data from a provincial CP Registry and administrative health databases. The CP cohort was comprised of children born from 1999 to 2002. Age, sex, and region-matched controls were identified from administrative health databases. Mean differences, relative risk (RR), and 95% confidence intervals (CIs) were calculated. A total of 301 children with CP were linked to administrative health data and matched to 6040 controls. Mean hospitalizations per child during the study period were higher in children with CP compared to controls (raw mean difference (RMD) 5.0 95% CI 4.7 to 5.2) with longer length of stay (RMD 2.8 95% CI 1.8 to 3.8) and number of diagnoses per hospitalization (RMD 1.6 95% CI 1.4 to 1.8). Increased risk of hospitalization was observed in non-ambulant children with CP (RR 1.12 95% CI 1.01 to 1.22) compared to ambulant children and among those with spastic tri/quadriplegic CP compared to other CP subtypes (RR 1.15, 95% CI 1.05 to 1.27). Feeding difficulties (RR 1.20 95% CI 1.13 to 1.27), cortical visual (RR 1.22 95% CI 1.13 to 1.32), cognitive (RR 1.16 95% CI 1.04 to 1.30), and communication impairment (RR 1.26 95% CI 1.10 to 1.44) were associated with increased hospitalizations. Children with CP face more frequent, longer hospital stays than peers, especially those with a more severe CP profile. Coordinated interdisciplinary care is needed in school-aged children with CP and medical complexity.

Complementary and Alternative Therapy Use in Children with Cerebral Palsy.

To describe complementary and alternative medicine (CAM) use amongst children with cerebral palsy (CP) in Canada and to identify factors associated with CAM use. We conducted a cross-sectional study, utilising data from the Canadian CP Registry. We explored the association between CAM use and regional, socioeconomic and CP phenotypic variables, and parental perception of the family-centredness of clinical care using the Measures of Process of Care-56 (MPOC-56). Chi-square analyses were performed, and odds ratios (OR) and 95% confidence intervals (CI) were obtained. Mann-Whitney U tests were used to compare MPOC-56 scores between CAM users and non-CAM users. The study sample consisted of 313 families of which 27% reported CAM use in the past year. Children with CP using CAM were more likely to reside in Western Canada (OR 3.3, 95% CI 1.6-6.7), live in a two-parent household (OR 3.5, 95% CI 1.5-8.4), have an ataxic/hypotonic or dyskinetic CP subtype (OR 3.0, 95% CI 1.5-6.1) and have a greater motor impairment (OR 2.8, 95% CI 1.7-4.9). MPOC-56 subscale scores were not significantly associated with CAM use. Physicians need to be aware of existing CAM therapies, the level of evidence supporting their efficacy (beneficence), their associated risks of adverse events (non-maleficence) and enable fair access to care that may be of benefit to each child.

Protocol for the Sri Lankan Cerebral Palsy Register pilot study

IntroductionCerebral palsy (CP) describes a heterogeneous group of motor disorders resulting from disturbance in the developing brain. CP occurs in approximately 2.1 per 1000 live births in high-income countries, but...

Does caesarean delivery in the first pregnancy increase the risk for adverse outcome in the second? A registry-based cohort study on first and second singleton births in Norway

ObjectiveTo explore if newborns in the second pregnancy following a previous caesarean delivery (CD) have higher risk of perinatal mortality or cerebral palsy than newborns in pregnancies following a previous...

\u2018Flower of the body\u2019: menstrual experiences and needs of young adolescent women with cerebral palsy in Bangladesh, and their mothers providing menstrual support

BackgroundThis study offers voice to young adolescent women with cerebral palsy (CP) in Bangladesh as they describe their menstrual experiences and needs, and their mothers providing menstrual support.MethodSemi-structured focus groups with adolescents with CP, and separately their mother. Data was analysed using a material discursive framework and drawing on feminist disability theory. Participants were recruited from the Bangladesh CP Register (BCPR); a population-based surveillance of children and adolescents with CP in rural Bangladesh.ResultsParticipants were 45 women including 12 female adolescents with CP and 33 female caregivers. Participants reported a wide range of experiences and needs; menarche acted as a gateway to menstrual information although for some a discourse of silence prevailed due to exclusion from peer and familial networks. Menstruation was discursively constructed as a sign of ‘female maturation’ marked by an expectation of ‘independence’, required for acceptance into socially valued adult roles, and was positioned alongside increased vulnerability to sexual abuse. Young adolescent women with CP were expected to ‘quietly endure’ the material aspects of menstruation although unmanaged pain and distress were described. Mothers reported an imperative for meeting their adolescent’s menstrual needs however this role was discursively positioned as ‘painful’, ‘irritating’ and ‘shameful’, in part due to an absence of affordable, functional menstrual resources.ConclusionThe findings of the present study provide motivation for disability services in Bangladesh to account for the menstrual needs of young adolescent women with CP within service delivery through strategies such as providing menstrual education and by embedding value in constructs such as ‘interdependence’. Moreover, interventions focused on alleviating menstrual pain among young adolescent women with CP as well as those targeted to alleviate distress among mothers providing menstrual care are required. Finally, policy responses are required to ensure that ‘inclusive development’ considers the needs of menstruating women with disability.