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Aim: The aim is to examine the risk of cerebral palsy, seizures/epilepsy, visual- and hearing impairments, cancer, injury/poisoning and child abuse in children with and without a congenital anomaly up to age 5 and 10 years., Methods: This is a population-based data linkage cohort study linking information from the European Surveillance of Congenital Anomalies network (EUROCAT) and birth registries to hospital discharge databases. We included 91 504 live born children with major congenital anomalies born from 1995 to 2014 from nine EUROCAT registries in five countries and 1 960 727 live born children without congenital anomalies (reference children). Prevalence and relative risk (RR) were estimated for each of the co-morbidities using Kaplan-Meier survival estimates., Results: Children with congenital anomalies had higher risks of the co-morbidities than reference children. The prevalences in the reference children were generally very low. The RR was 13.8 (95% CI 12.5-15.1) for cerebral palsy, 2.5 (95% CI 2.4-2.6) for seizures/epilepsy, 40.8 (95% CI 33.2-50.2) for visual impairments, 10.0 (95% CI 9.2-10.9) for hearing loss, 3.6 (95% CI 3.2-4.2) for cancer, 1.5 (95% CI 1.4-1.5) for injuries/poisoning and 2.4 (95% CI 1.7-3.4) for child abuse., Conclusion: Children with congenital anomalies were more likely to be diagnosed with the specified co-morbidities compared to reference children., (© 2024 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica.)

Previous work demonstrated that implementing a quality improvement (QI) program improves the uptake of guideline-recommended antenatal magnesium sulphate, a critical intervention known to reduce cerebral palsy risk. Here we estimate potential cost savings attributable to the improved uptake. By expanding coverage from 63 to 83% of eligible women, we estimated that five children potentially would not have received a diagnosis of cerebral palsy, a potential cost saving of $AU4.8 million in lifetime healthcare costs. Our findings strengthen the case for embedding QI approaches in perinatal care to reduce the incidence of cerebral palsy., (© 2021 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)

An index of authors of studies and workshop lecturers in the Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM) conference is presented.

The article presents abstracts on medical topics which includes researches related to torsional deformities in ambulatory children with cerebral palsy, avascular necrosis following reconstructive hip surgery in children and foot posture in children with cerebral palsy.

The article presents abstracts of various studies related to developmental medicine and neurology which include research on perspectives of children with cerebral palsy and their siblings, a cross-sectional study on the environmental context for adolescents with cerebral palsy (CP) and a descriptive survey showing an exploratory analysis of factors that impact self concept (SC) in children with cerebral palsy (CP).

Background: Clinical practice guidelines recommend the use of antenatal magnesium sulphate for fetal neuroprotection before preterm birth at <30 weeks' gestation., Aims: This survey assessed the use of antenatal magnesium sulphate for fetal neuroprotection to determine if use has changed since the previous survey in 2012, and to evaluate enablers and barriers to use., Materials and Methods: A questionnaire was sent to clinical leaders at 29 hospitals with a neonatal intensive care unit in Australia and New Zealand asking at what gestational ages magnesium sulphate was given, if use was audited and any enablers and barriers  to use., Results: Responses were received for 24 (83%) hospitals. The use of magnesium sulphate for fetal neuroprotection was reported as 89% (IQR 80-90%), an increase from 80% (IQR 53-90%) from the earlier survey. The majority of health professionals were reported as using magnesium sulphate at <30 weeks' gestation. The top enablers for use of magnesium sulphate were availability of pamphlets, posters, case record stickers and PowerPoint presentations. The main reasons as to why eligible women did not receive magnesium sulphate were imminent birth, the hospital being short staffed and the patient declined. The use of antenatal magnesium sulphate has been or is being audited in 11 (46%) of the hospitals., Conclusions: Clinical leaders at institutions in Australia and New Zealand report that uptake in the use of magnesium sulphate for fetal neuroprotection has continued to increase since the earlier, bi-national survey in 2012. Barriers to the use of magnesium sulphate identified have institutional and consumer implications., (© 2019 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)

The article presents abstracts on medical topics which include development of generic fidelity measure in paediatric rehabilitation, computer-based instrument for low motor language testing and development of a tool to evaluate change in high-functioning children having cerebral palsy.

The article discusses on multiple pregnancy in in vitro fertilization (IVF) due to the practice of transferring more than one embryo into uterus. Topics discussed includes UK Human Fertilization and Embryology Authority (HFEA), high IVF multiple birth rates, cerebral palsy and assisted reproductive technology.

Aim: Taping is popular in a variety of paediatric clinical settings. The purpose of this study was to investigate the effectiveness of taping on the rehabilitation of children with cerebral palsy (CP).Method: We used MEDLINE, Embase, PubMed, CINAHL, and the Cochrane Central Register of Controlled Trials as the electronic databases for the review. We reviewed all relevant studies published up to May 2015. We also analysed pertinent secondary references. We used Sackett's Levels of Evidence and the guidelines for critical review of McMaster University to criticize the reviewed articles.Results: Nine papers met the inclusion criteria. Five of these were randomized controlled trials, three were case series, and one was a single case study. Four papers were high quality according to the methodological critical forms of this review, and two of these found that taping was effective in increasing activity in children with CP.Interpretation: Although benefits of taping were found in the population, and functional gains according to the International Classification of Functioning, Disability and Health were obtained, the evidence was not conclusive. Randomized controlled trials with larger sample sizes and with more specific taping procedures are required to strengthen the evidence for the effectiveness of taping on children with CP. [ABSTRACT FROM AUTHOR]

The article presents abstracts of articles on topics including upper limb orthoses for children with cerebral palsy, motor development in infants with asymmetric brain injury, and risk of cerebral palsy in infants.

Aim: The associations between the aetiology of preterm birth and later neurodevelopmental outcomes are unclear. A systematic review and meta-analysis examined the existing evidence., Methods: The PubMed and Embase databases were searched for papers published in English from inception to 16 December 2020. We included original papers on the causes of preterm birth and the risks of cerebral palsy (CP) and suboptimal cognitive development. Two reviewers independently evaluated the studies and extracted the data., Results: The literature search yielded 5472 papers and 13 were selected. The aetiology of preterm birth was classified under spontaneous or medically indicated delivery. A meta-analysis was performed, comprising 104 902 preterm infants from 11 papers on CP. Preterm infants born after a medically indicated delivery had a lower CP risk than infants born after spontaneous delivery, with a pooled odds ratio of 0.59 (95% confidence interval 0.40-0.86). This result was robust in the subgroup and sensitivity analyses. Cognitive development was reported in three papers, which suggested that worse outcomes were associated with medically indicated deliveries., Conclusion: The aetiology of preterm delivery may contribute to the risk of CP and cognitive delay. Further research is needed, using individual-level meta-analyses to adjust for possible confounders, notably gestational age., (© 2024 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica.)

Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. Methods: Two rounds of semi‐structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open‐ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data‐driven inductive thematic analysis. Results: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP. [ABSTRACT FROM AUTHOR]

Aim: To describe the distribution of neuroimaging patterns in a term/late preterm population‐based cohort with cerebral palsy (CP), ascertain associations between neuroimaging patterns and neonatal well‐being, estimate the proportion with antenatal or perinatal timing of neuropathology, and apply this information to the understanding of common mechanisms of brain injury and causal pathways. Method: The cohort for this observational study comprised 1348 persons born between 1999 and 2017 in Victoria, Australia. Using algorithms designed for the study, neonatal well‐being and timing of brain injury were tabulated for the whole cohort and across neuroimaging patterns and birth epochs. Results: Clinical and demographic profiles, neonatal well‐being, and timing of brain injury differed across neuroimaging patterns. An estimated 57% of the cohort had a complicated neonatal period. Timing of brain injury was antenatal in 57% and perinatal in 41%. A decrease in the relative proportions of perinatal timing of brain injury was observed over a period when the rates of CP in live births at term decreased. Interpretation: This study begins to bridge the knowledge gap about causation in CP, moving towards better description of the main mechanisms of brain injury and their contribution within CP cohorts, and facilitating the ability to monitor changes over time and the success of preventive measures. What this paper adds: In a population‐based, term/late preterm cohort with cerebral palsy, 57% had a complicated neonatal period.In the same cohort, 57% had presumed antenatal timing of brain injury.The relative proportion with perinatal injury decreased over time. What this paper adds: In a population‐based, term/late preterm cohort with cerebral palsy, 57% had a complicated neonatal period.In the same cohort, 57% had presumed antenatal timing of brain injury.The relative proportion with perinatal injury decreased over time. This original article is commented on by O'Shea on pages 829–830 of this issue. [ABSTRACT FROM AUTHOR]

This section presents abstracts of papers on cerebral palsy (CP), including the influence of gait analysis on the decision-making for lower extremity surgery (LES) in children with CP, the relationship of patella alta to dynamic knee position in ambulatory adolescents with CP and the effectiveness of hip adductor surgery in preventing or treating early hip displacement in children with CP.

The article presents abstracts of papers on developmental medicine and child neurology which include "A Review of Short Term Outcomes of Term Infants With Hypoxic-Ischemic Encephalopathy," by Tamis Pin, Bev Eldridge and Mary P. Galea, "Hemiplegic Cerebral Palsy: The Prevalence of Gait Patterns and Motor Function From a Population-Based Cohort," by Fiona Dobson and Meg Morris and "Gait and Function in Dravet Syndrome: Preliminary Cross-Sectional Study," by I. E. Scheffer, J. M. Mcmahon and H. K. Graham.

Background: Motor dysfunctions in children with cerebral palsy (CP) are caused by nonprogressive brain damage. Understanding the functional characteristics of the brain is important for rehabilitation. Purpose: This paper aimed to study the brain networks of children with CP during bilateral lower limb movement using functional near‐infrared spectroscopy (fNIRS) and to explore effective fNIRS indices for reflecting functional brain activity. Methods: Using fNIRS, cerebral oxygenation signals in the bilateral prefrontal cortex (LPFC/RPFC) and motor cortex (LMC/RMC) were recorded from fifteen children with spastic CP and seventeen children with typical development (CTDs) in the resting state and during bilateral lower limb movement. Functional connectivity matrices based on phase‐locking values (PLVs) were calculated using Hilbert transformation, and binary networks were constructed at different sparsity levels. Network metrics such as the clustering coefficient, global efficiency, local efficiency, and transitivity were calculated. Furthermore, the time‐varying curves of network metrics during movement were obtained by dividing the time window and using sparse inverse covariance matrices. Finally, conditional Granger causality (GC) was used to explore the causal relationships between different brain regions. Results: Compared to CTDs, the connectivity between RMC‐RPFC (p = 0.017) and RMC‐LMC (p = 0.002) in the brain network was decreased in children with CP, and the clustering coefficient (p = 0.003), global efficiency (p = 0.034), local efficiency (p = 0.015), and transitivity (p = 0.009) were significantly lower. The standard deviation of the changes in global efficiency of children with CP during motion was also greater than that of CTDs. Using GC, it was found that there was a significant increase in causal strength from the RMC to the RPFC (p = 0.04) and from the RMC to the LMC (p = 0.042) in children with CP during motion. Additionally, there were significant negative correlations between the PLV of LMC‐RMC (p = 0.002) and the Gross Motor Function Classification System (GMFCS) and between the GMFCS and the clustering coefficient (p = 0.01). Conclusions: During rehabilitation training of the lower limbs, there were significant differences in brain network indices between children with CP and CTDs. The indicators proposed in this paper are effective at evaluating motor function and the real‐time impact of rehabilitation training on the brain network and have great potential for application in guiding clinical motor function assessment and planning rehabilitation strategies. [ABSTRACT FROM AUTHOR]

The article presents abstracts on developmental medicine and child neurology topics which include the provision of reference values for anaerobic performance and agility in children and adolescents with cerebral palsy, the assessment of a mobility questionnaire (MobQues) in measuring mobility limitations in children with cerebral palsy and a study on improving attitudes in school towards children with disabilities.

Aim: To synthesize the evidence about the main intervention characteristics of cognitive behavioral therapies (CBTs) for individuals with cerebral palsy and identify barriers and facilitators to their success, focusing on aspects of feasibility and markers of success. Method: A scoping review methodology informed a literature search for papers published between 1991 and 2021. Articles were screened, reviewed, and categorized using the DistillerSR systematic review software, and critically appraised for quantitative and/or qualitative criteria. Results: Out of 1265 publications identified, 14 met the inclusion criteria. Elements associated with the specific study participant characteristics (46% female; aged 6–65 years), type of CBT techniques used (third‐wave [n = 6], cognitive [n = 3], cognitive and behavioral [n = 2], biofeedback training [n = 2]), and features of the study context and methodological quality (two randomized clinical trials and small sample sizes [n ≤ 12]), were identified. Most studies had psychological targets of intervention (n = 10) and secondary physiological (n = 3) or social (n = 2) objectives. Feasibility indicators were described in nearly one‐third of the papers. Interpretation: This study highlights the high flexibility within CBT interventions, enabling their adaptation for individuals with cerebral palsy. However, relatively little, and only low‐certainty evidence was identified. More high‐quality research in terms of specific CBT techniques, optimal treatment doses, and detailed population characteristics are needed. [ABSTRACT FROM AUTHOR]

Aim: To undertake a systematic review and meta‐analysis exploring school‐age neurodevelopmental outcomes of children after low‐grade intraventricular haemorrhage (IVH). Method: The published and grey literature was extensively searched to identify observational comparative studies exploring neurodevelopmental outcomes after IVH grades 1 and 2. Our primary outcome was neurodevelopmental impairment after 5 years of age, which included cognitive, motor, speech and language, behavioural, hearing, or visual impairments. Results: This review included 12 studies and over 2036 infants born preterm with low grade IVH. Studies used 30 different neurodevelopmental tools to determine outcomes. There was conflicting evidence of the composite risk of neurodevelopmental impairment after low‐grade IVH. There was evidence of an association between low‐grade IVH and lower IQ at school age (−4.23, 95% confidence interval [CI] –7.53, −0.92, I2 = 0%) but impact on school performance was unclear. Studies reported an increased crude risk of cerebral palsy after low‐grade IVH (odds ratio [OR] 2.92, 95% CI 1.95, 4.37, I2 = 41%). No increased risk of speech and language impairment or behavioural impairment was found. Few studies addressed hearing and visual impairment. Interpretation: This systematic review presents evidence that low‐grade IVH is associated with specific neurodevelopmental impairments at school age, lending support to the theory that low‐grade IVH is not a benign condition. What this paper adds: The functional impact of low‐grade intraventricular haemorrhage (IVH) at school age is unknown.Low‐grade IVH is associated with a lower IQ at school age.The risk of cerebral palsy is increased after low‐grade IVH.Low‐grade IVH is not associated with speech and language impairment. What this paper adds: The functional impact of low‐grade intraventricular haemorrhage (IVH) at school age is unknown.Low‐grade IVH is associated with a lower IQ at school age.The risk of cerebral palsy is increased after low‐grade IVH.Low‐grade IVH is not associated with speech and language impairment. [ABSTRACT FROM AUTHOR]

Aim: This paper introduces the Surveillance of Cerebral Palsy in Europe (SCPE) classification of events contributing to postneonatally acquired cerebral palsy, presents its interrater reliability, and describes the cases identified in the SCPE database. Method: The development of the classification, based on literature review and expert discussions, resulted in six main categories and 19 subcategories. The first chronological event designated as the primary event was mainly reported. Interrater reliability was assessed through online exercise providing 24 clinical vignettes representing single/complex pathways. Percent agreement and Gwet's AC1 index of reliability were estimated. Primary events were described using data of 221 children born between 2008 and 2012. Results: Thirty‐nine professionals (21 registries) participated in the reliability exercise. Substantial overall agreement was reached (0.75), with some contrast between complex (0.48, moderate agreement) and single events involved (0.89, almost perfect). The distribution of primary events showed that 32.1% were infections (category A), 23.1% head injuries (B), 15.4% related to surgery or medical interventions (C), 13.1% cerebrovascular accidents (D), 9.1% hypoxic brain damaging events of other origins (E), and 7.2% miscellaneous (F). Interpretation: This classification allows all the events involved to be recorded while consistently reporting the primary event, and may be used in different settings. What this paper adds: A standardized classification enables the description of the events contributing to postneonatal cerebral palsy (CP).The first chronological event in complex pathway leading to CP is coded.Category choice and coding of the primary event identify preventable situations.The detailed 2‐level classification is easy to use in various settings.Substantial overall interrater reliability shows that main categories can be consistently differentiated. [ABSTRACT FROM AUTHOR]

Aim: To clarify whether the Whitney Comorbidity Index (WCI) is useful in Asian adults with cerebral palsy (CP) and whether aspiration pneumonia and pressure ulcers improved the prognostic significance of the WCI. Method: This cohort study evaluated individuals aged at least 18 years with CP in Japan. We used Cox proportional hazards regression to analyse 2‐year mortality rates. The predictive performance of the Charlson Comorbidity Index, Elixhauser Comorbidity Index, and WCI were compared as comorbidity assessment criteria. Aspiration pneumonia and pressure ulcers were added to the Cox models, and their impact on hazard ratios was determined. Results: Of the 2232 adults with CP, 72 died during the 2 years. The model with a previously reported weighted WCI with aspiration pneumonia and pressure ulcers produced the best fit. Additionally, the hazard risk of 2‐year mortality for an unweighted WCI score of at least 4 was 2.56; when CP‐specific comorbidities were added, it increased to 8.94. Interpretation: This study showed that the WCI can be used in Asian adults with CP. Furthermore, assessing patient age, aspiration pneumonia, and pressure ulcers in addition to the WCI increased the predictive value for mortality. Our findings indicate that the WCI can promote valid comparisons between international populations. What this paper adds: The Whitney Comorbidity Index (WCI) is useful among adults with cerebral palsy, irrespective of ethnic differences.Assessment of aspiration pneumonia and pressure ulcers increased the WCI predictive value.The WCI helps identify adults with cerebral palsy at risk of adverse outcomes. What this paper adds: The Whitney Comorbidity Index (WCI) is useful among adults with cerebral palsy, irrespective of ethnic differences.Assessment of aspiration pneumonia and pressure ulcers increased the WCI predictive value.The WCI helps identify adults with cerebral palsy at risk of adverse outcomes. This article's abstract has been translated into Japanese. Follow the links from the abstract to view the translations. [ABSTRACT FROM AUTHOR]

Aim: To better understand parents' beliefs about causation in cerebral palsy (CP) and the emotions related to those beliefs. Method: We surveyed 226 parents of children with CP aged 1 to 18 years, recruited from the Victorian Cerebral Palsy Register, to evaluate their beliefs about the causes of CP, including genetic causes, causes specific to their own child, and their attitudes and emotions in relation to these. Results: Although 92% of participants reported that understanding the causes of their child's CP was important, uncertainty about the cause was expressed by 13%. The most frequently endorsed causal factors, in general and in their own child respectively, were intrapartum hypoxia (81%, 36%) or brain damage (69%, 22%), brain damage during pregnancy (73%, 28%), and preterm birth (66%, 28%). Genetic causes were deemed relevant by 13% of participants and hospital or professional error by 16%. Parents shared related feelings of anger (59%), sadness (80%), guilt (61%), and confusion (53%); parental anger was more likely when their child's CP was attributed to intrapartum events. Interpretation: Substantial parental interest in understanding the causes of CP, together with uncertainty about the causes, parents' causal attributions, and significant emotional sequelae, highlight a strong need for provision of information and support for families of children recently diagnosed with CP. What this paper adds: Understanding the causes of their child's cerebral palsy (CP) was important to parents.Parents most often endorsed intrapartum factors as a cause of CP.Parents reported experiencing strong emotions about the causes of their child's CP. What this paper adds: Understanding the causes of their child's cerebral palsy (CP) was important to parents.Parents most often endorsed intrapartum factors as a cause of CP.Parents reported experiencing strong emotions about the causes of their child's CP. This original article is commented on by Vasyutin on page 148 of this issue. [ABSTRACT FROM AUTHOR]

Background: Speech is the most common method of communication. Video‐based clinical communication evaluation is a requirement for children with speech–language impairments living in rural areas, and those who have limited mobility. Aims: To determine the validity and reliability of the Turkish version of the Viking Speech Scale (VSS‐T) via live and video‐based observation for children with cerebral palsy (CP) aged 4–18 years. Methods & Procedures: A total of 142 children (mean age 8.18 ± 3.98 years; 68 female) with CP were included in this study. Their motor, communication, visual and eating–drinking function levels and comorbidities (dental, swallowing, cognitive impairments and epilepsy) were recorded. The Intelligibility in Context Scale (ICS), the Pediatric Evaluation of Disability Inventory—Social Function (PEDI‐SF), and the Functional Independence Measure for Children—Communication (WeeFIM‐C) were assessed to examine the concurrent validity of the VSS‐T. The interrater reliability of the VSS‐T was analysed between parents, physical therapists, and speech and language therapists from live and video‐based observation. Intra‐rater reliability was calculated from ratings made from live and video‐based observations taken 3 weeks apart. Outcomes & Results: The VSS‐T was strongly related to the ICS (r = –0.830), PEDI‐SF (r = –0.819), WeeFIM‐C (r = –0.643), other functional classifications (r > 0.432), and the comorbidities (Cramer's V > 0.284, p < 0.001). Good to excellent interrater reliability (κw ≥ 0.838) and intra‐rater reliability (intraclass correlation coefficient (ICC) = 0.848–0.995) were found between parents and therapists. Conclusions & Implications: Speech and language therapists, physical therapists, and parents can use the VSS‐T as a valid and reliable classification system to describe speech intelligibility of 4–18‐year‐old children with CP. Both live and video‐based observations can be used to administer the VSS‐T. What This Paper Adds: What is already known on the subject: The English version of the VSS has been shown to be a valid and reliable tool used to classify the speech of children with CP aged 4–13 years. The scale can be administered by means of live observation of the child or based on clinicians' notes on the case by parents, SLTs, physiotherapists and paediatricians. What this paper adds to existing knowledge: The VSS‐T is valid and reliable for children with CP aged 4–18 years. Video‐based observation is a suitable method for evaluating the VSS‐T levels. The VSS‐T has a moderate association with the CFCS. What are the potential or actual clinical implications of this work?: The VSS‐T is a valid and reliable method of categorizing the severity of motor speech impairment for Turkish children with CP in clinical research studies, registry systems or epidemiological studies. Both experienced and inexperienced therapists can use either live or video‐based observation methods to administer the VSS‐T. This study extended the validity and reliability of the scale in children with CP aged up to 18 years. The VSS‐T is also associated with the Visual Functional Classification System (VFCS), which has been recently developed for describing the visual abilities of children with CP in daily life. In addition, the VSS‐T is associated with the presence of dental, swallowing, cognitive problems and epilepsy. [ABSTRACT FROM AUTHOR]

Aim: To describe the standardized neurodevelopmental outcomes after the first year of life in children with congenital Zika syndrome (CZS) and those exposed to Zika virus (ZIKV) during fetal life, but without microcephaly at birth. Method: This scoping review included observational studies about the standardized neurodevelopmental outcome in children with CZS or exposed to ZIKV, but without microcephaly, assessed after 12 months of age. The databases searched were MEDLINE/Pubmed, LILACS, Scielo, Scopus, PsycINFO, CINAHL, and Embase. Risk of bias was assessed with the Joanna Briggs Institute Critical Appraisal Checklists. Results: Seventeen papers were included: 12 focused on children with CZS, four on children born without microcephaly, and one described both. Only one of the studies about CZS reported a child with microcephaly and typical development; the remainder described a severe pattern of global developmental delay and cerebral palsy. The prevalence of epilepsy was 74.6%. In the reports about children born without microcephaly, 6.9% to 8.7% had some domain with a score below −2 SD, and three children developed autism spectrum disorder. Interpretation: CZS is associated with severe global developmental delay and cerebral palsy after 1 year of age. In children born without microcephaly, although most have typical development, some may be at risk for impairments. [ABSTRACT FROM AUTHOR]

Aim: To describe the clinical course of pain intensity in individuals with cerebral palsy (CP) resulting from usual care or specific interventions. Method: We conducted an exploratory prognostic systematic review searching electronic databases from inception to 31st December 2021. Evidence from low and moderate risk‐of‐bias studies was synthesized. Results: We retrieved 2275 citations; 18 studies met the inclusion criteria and 10 were synthesized. The course of pain intensity in children with CP receiving usual care was stable over 15 weeks (χ2[2] = 1.8, p = 0.5). Children who received continuous intrathecal baclofen (CITB) reported significant pain intensity reduction (visual analogue scale [VAS] = −4.2 out of 10, 95% confidence interval [CI] = −6.3 to −2.1]) 6 months postinsertion but similar children receiving usual care had no significant change over 6 months (VAS = 1.3 out of 10, 95% CI = −1.3 to 3.6). Children receiving botulinum neurotoxin A (BoNT‐A) injections had significant decreases in pain after 1 month (numeric rating scale = −6.5, 95% CI = −8.0 to −5.0). Adults with chronic pain receiving usual care reported stable pain intensity over time; pain intensity improved in ambulatory adults exercising and those treated surgically for cervical myelopathy. Interpretation: The course of pain intensity in individuals with CP is unclear. Evidence suggests that children and adults receiving usual care had stable pain intensity over the short or long term. Interventions (CITB and BoNT‐A in children and exercise and surgical treatment for cervical myelopathy in adults) had pain intensity reduction. Larger study samples are needed to confirm these results. What this paper adds: Pain intensity was stable in children with cerebral palsy (CP) receiving usual care.Adults with CP and chronic pain receiving usual care had stable, persistent pain intensity.Children receiving continuous intrathecal baclofen via pump and botulinum neurotoxin A reported significantly lower pain intensities.Adults with chronic pain and dyskinetic CP and cervical myelopathy reported significantly lower pain intensity with exercise or cervical decompression.Limited high‐quality evidence exists describing non‐procedural pain changes in individuals with CP. What this paper adds: Pain intensity was stable in children with cerebral palsy (CP) receiving usual care.Adults with CP and chronic pain receiving usual care had stable, persistent pain intensity.Children receiving continuous intrathecal baclofen via pump and botulinum neurotoxin A reported significantly lower pain intensities.Adults with chronic pain and dyskinetic CP and cervical myelopathy reported significantly lower pain intensity with exercise or cervical decompression.Limited high‐quality evidence exists describing non‐procedural pain changes in individuals with CP. [ABSTRACT FROM AUTHOR]

Aim: To investigate the efficacy, safety, and impact on quality of life (QoL) of an oral formulation of 320 μg/mL glycopyrronium designed for children. Method: A double‐blind, placebo‐controlled SALIVA (Sialanar plus orAl rehabiLitation against placebo plus oral rehabilitation for chIldren and adolescents with seVere sialorrhoeA and neurodisabilities) trial was conducted. Children (3–17 years) with neurodisabilities and severe sialorrhoea (modified Teachers Drooling Scale ≥6) were randomized to 320 μg/mL glycopyrronium or placebo, in addition to non‐pharmacological standard care. Results: Of 87 participants, 44 were aged 10 years or under and 43 had cerebral palsy. The primary endpoint, change in total Drooling Impact Scale (DIS) score from baseline to day 84, was significantly greater (improved) with 320 μg/mL glycopyrronium versus placebo (median [quartile 1, quartile 3] –29.5 [−44.5, 0] vs −1 [−16, 5]; p < 0.001), an effect also observed at day 28 (median − 25 vs −2; p < 0.01). Significant reduction in bibs/clothes used per day was seen with glycopyrronium versus placebo at day 84 (median − 2 vs 0; p < 0.01). Glycopyrronium significantly improved DIS items 9 and 10 related to the extent that drooling affects the child's and family's life (p ≤ 0.03). Adverse events were reported by 77.3% and 69.8% of children with glycopyrronium and placebo respectively; the most common treatment‐related adverse event was constipation (20.5% and 16.3%). Interpretation: The formulation of 320 μg/mL glycopyrronium significantly improved drooling and reduced its impact on QoL, with good tolerability in children with neurodisabilities. What this paper adds: The formulation of 320 μg/mL glycopyrronium significantly improved Drooling Impact Scale score versus placebo at day 84.The formulation reduced the impact of drooling on the child's and family's quality of life.There were no safety or tolerability concerns with this specific formulation. [ABSTRACT FROM AUTHOR]

Aim: To develop robust multivariable prediction models for non‐response to (1) submandibular botulinum neurotoxin A (BoNT‐A) injections and (2) concurrent submandibular and parotid (four‐gland) injections, to guide treatment decisions for drooling in children with neurodevelopmental disabilities, including cerebral palsy. Method: This was a retrospective cohort study including 262 children (155 males/107 females, median age 7 years 11 months [IQR 5 years 1 month], range 4 years 0 months – 17 years 11 months) receiving submandibular injections and 74 children (52 males/22 females, median age 7 years 7 months [IQR 4 years 3 months], range 4 years 9 months – 18 years 8 months) receiving four‐gland injections. Multivariable logistic regression analyses were used to estimate associations between candidate predictors and non‐response 8 weeks after injection. Results: Ninety‐six children (37%) were non‐responders to submandibular injections, for which developmental age was the strongest predictor (adjusted odds ratio [aOR] 2.13; 95% confidence interval [CI] 1.02–4.45 for developmental age <4 years or 4–6 years with IQ <70). Other characteristics that showed a trend towards an increased risk of non‐response were diagnosis, sex, and head position. Thirty‐four children (46%) were non‐responders to four‐gland injections, for which tongue protrusion (aOR 3.10; 95% CI 1.14–8.43) seemed most predictive, whereas multiple preceding submandibular injections (aOR 0.34; 95% CI 0.10–1.16) showed a trend towards being protective. Predictors were, however, unstable across different definitions of non‐response and both models (i.e. submandibular and four‐gland) had insufficient discriminative ability. Interpretation: Potential predictors of non‐response to BoNT‐A injections were identified. Nevertheless, the developed prediction models seemed inadequate for guidance of treatment decisions. What this paper adds: Developmental age seemed most predictive of non‐response to submandibular botulinum neurotoxin A injections.Non‐response to concurrent submandibular and parotid injections was best predicted by tongue protrusion and number of previous injections.Multivariable prediction models including these clinical characteristics were unable to discriminate well.Predictors differed when non‐response was defined using alternative outcome measures. [ABSTRACT FROM AUTHOR]

Aim: The aim of this observational study was to determine the immune status and function in young adults with cerebral palsy (CP) in comparison to typically developing individuals. Method: Blood samples from 12 individuals with CP (five males, seven females; mean age: 25 years 1 month (5 years 9 months); age range: 19–38 years) and 17 typically developing individuals (eight males, nine females; mean age: 31 years 4 months (6 years 2 months); age range: 20–40 years) were collected before, immediately after, and 1 hour after 45 minutes of frame running or running respectively. Independent t‐tests were used to compare heart rate, level of exertion, and baseline cell proportions between groups. Mixed model analysis of variance was utilized to investigate immune cell responses to exercise across groups. Results: Baseline levels of gamma delta (TCRγδ+) T‐cells were significantly higher (absolute percentage: +2.65, p = 0.028) in the individuals with CP. Several cell populations showed similar significant changes after exercise in both CP and typically developing groups. Cytotoxic (CD8+) T‐cells were only significantly elevated immediately after exercise in the typically developing participants (p < 0.01). Individuals with CP exhibited significantly lower heart rates (−11.1%, p < 0.01), despite similar ratings of perceived exertion. Interpretation: Elevated baseline TCRγδ+ T‐cells may indicate low‐grade inflammation in adults with CP. Although most of the cell populations showed typical responses to endurance exercise, the absence of response in CD8+ T‐cells in individuals with CP may indicate the need for higher intensity during exercise. What this paper adds: TCRγδ+ T‐cell baseline levels are elevated in adults with cerebral palsy (CP).The CD8+ T‐cell response to exercise was blunted in adults with CP.Exercise intensity is decisive for CD8+ T‐cell responses in individuals with CP. [ABSTRACT FROM AUTHOR]

Background: The majority of children with cerebral palsy (CP) experience challenges in functional communication from a young age. A pivotal aspect of functional communication is language comprehension. A variety of classification systems and questionnaires are available to classify and describe functional communication skills in children with CP. A better understanding of the convergent validity of (subsections of) these tools, as well as their relationship with spoken language comprehension, will be valuable in both clinical practice and research. Aims: To investigate the convergent validity of (subsections of) functional communication tools and the relationship with spoken language comprehension in children with CP. Methods & Procedures: Cross‐sectional data on 138 children were subdivided into three developmental stages based on (Dutch) educational phases: ages 18 months–3;11y (n = 59), 4;0–5;11 years (n = 37) and 6;0–8;11 years (n = 42). The following functional communication tools were used to classify and describe functional communication: Communication Function Classification System (CFCS), subscales of the Caregivers Priorities and Child Health Index of Life with Disabilities—Dutch Version (CPCHILD‐DV) and the Focus on Communication Under Six‐34 (FOCUS‐34) questionnaire. Spoken language comprehension was assessed with the Computer‐Based instrument for Low motor Language Testing (C‐BiLLT). Correlations between the functional communication tools, and with the C‐BiLLT, were calculated using Pearson's and Spearman's correlation coefficients. It was hypothesized a priori that correlations of at least 0.60 suggest good convergent validity. Outcomes & Results: At all developmental stages, a significant ordered decreasing tendency of communication outcomes was found across CFCS levels; lower CFCS levels were associated with lower scores on the CPCHILD‐DV and FOCUS‐34, and with a lower level of spoken language comprehension (C‐BiLLT). Correlation coefficients of the functional communication tools exceeded 0.60 at all developmental stages. Correlations between C‐BiLLT raw scores and the functional communication tools varied between 0.351 and 0.591 at developmental stage 18 months–3;11 years, between 0.781 and 0.897 at developmental stage 4;0–5;11 years, and between 0.635 and 0.659 at developmental stage 6;0–8;11 years. Conclusions & Implications: The functional communication tools assessed in this study showed convergent validity at all developmental stages. The CFCS, currently most widely used in paediatric rehabilitation, is adequate in the classification of functional communication. However, for more detailed clinical goal setting and evaluation of change in functional communication, the additional use of FOCUS‐34 or CPCHILD‐DV is recommended. What this paper adds: What is already known on the subject: A range of functional communication tools are available that help describe and classify functional communication in children with CP. These include the CFCS, subsections of CPCHILD‐DV and FOCUS‐34. The CFCS classifies functional communication in daily life with familiar and unfamiliar partners. Specific subsections of the CPCHILD‐DV and FOCUS‐34 include items that pertain to communicative participation. The innovative C‐BiLLT provides a standardized method to assess spoken language comprehension in children with CP and significant motor impairments. What this paper adds to existing knowledge: In the present study, convergent validity was confirmed between CFCS and specific subsections of the CPCHILD‐DV and FOCUS‐34. Correlations between these functional communication tools and the C‐BiLLT were moderate to strong. What are the potential or actual clinical implications of this work?: For clinical and research purposes (for instance, accurate prescription of augmentative and alternative communication—AAC), healthcare and educational professionals together with parents need to know how functional communication tools converge and how functional communication levels relate to the comprehension of spoken language. The CFCS provides a valid classification of functional communication abilities in children with CP. However, to measure change in functional communication and to evaluate treatment outcomes, use of additional functional communication tools such as the CPCHILD‐DV and FOCUS‐34 is recommended. When discrepancies are found between communicative abilities and spoken language comprehension, it is strongly recommended that valid tools are used in a more detailed examination of the child's spoken language comprehension skills and functional communication. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to describe the implementation of evidence‐based, individualized coping plans and to compare the rates of child anxiety, child cooperation, and parent anxiety before and after implementation of these coping plans for children receiving recurring BoNT‐A injections emphasizing the role of Certified Child Life Specialists (CCLSs) within the interdisciplinary team approach. Design and Methods: A retrospective chart review was conducted for children receiving BoNT‐A injections at a Physical Medicine clinic pre‐ and post‐implementation of the coping plan. Descriptive statistics were used to evaluate care plan implementation, child cooperation, child anxiety, and parent anxiety. Results: Post‐implementation of coping care plans, children experienced improved cooperation during BoNT‐A injections. Parental anxiety decreased once coping plans were implemented. Documentation improved after the implementation of coping plans specific to areas involving cooperation, child's anxiety and distress, and parental anxiety and distress. It was also noted that there was an increase in child anxiety assessments within documentation. Practice Implications: CCLS were able to utilize their expertise to collaboratively create individualized coping care plans to increase child's cooperation and decrease parental anxiety during BoNT‐A injections. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study is to describe the individualized occupational performance issues identified by parents/carers and children prior to selective dorsal rhizotomy (SDR) surgery and analyse change up to 2 years post surgery in goal attainment and quality of life (QoL). Method: The Australian SDR Research Registry (trial registration: ACTRN12618000985280) was used to extract data for individualized goals, goal attainment and QoL based on the Canadian Occupational Performance Measure (COPM) and the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL‐Child parent‐proxy) at baseline and 1 and 2 years following SDR. Change in mean scores was analysed using linear mixed models. Results: Fifty‐two children had COPM scores at baseline and 1 and/or 2 years post, of which 28 had two QoL scores. COPM problem areas included leisure (n = 39), productivity (n = 37) and self‐care (n = 173). The most common goals were walking (26.1%), participation in physical activities (17.7%) and transitions (14.1%). Mean COPM scores improved significantly between baseline to 1 year and baseline to 2 years (P < 0.001). Mean QoL scores improved between baseline to 1 year for functional QoL domains: participation and physical health (P = 0.003) and pain and impact of disability (P = 0.011). Conclusions: Collaborative goal setting is an integral part of family‐centred rehabilitation practice. The COPM was an appropriate individualized outcome measure in identifying meaningful goals for our SDR cohort. Results demonstrate improved scores in goal attainment and improvement in functional QoL domains. This paper highlights the need to include outcomes that measure daily life experiences. [ABSTRACT FROM AUTHOR]

Aim Lower limb surgery is often performed in ambulatory children with cerebral palsy ( CP) to improve walking ability. This mapping review reports on outcome measures used in the published literature to assess surgical results, determine range and frequency of use, and map each measure to the International Classification of Functioning, Disability and Health. Method A mapped review of literature published between 1990 and 2011 was carried out to identify papers reporting the outcomes of lower limb orthopaedic surgery in ambulatory children with CP, aged 0 to 20 years. Results A total of 229 published papers met the inclusion criteria. Thirty-two outcome measures with known psychometric properties were reported in the 229 papers. Twenty measures assess impairments in body structure and function and were used in 91% of studies. Ten measures assess restrictions in activity and participation and were used in 9% of papers. Two measures assessed quality of life. Since 1997, 29% of papers have used the Gross Motor Function Classification System to describe participants. Interpretation The body of literature evaluating outcomes of lower limb orthopaedic surgery in CP is small but increasing. There is a need to develop a suite of outcome measures that better reflect outcomes across the International Classification of Functioning, Disability and Health, including activity and participation. [ABSTRACT FROM AUTHOR]

Aim: To provide a description of cerebral palsy (CP) registers globally, identify which aim to report on CP epidemiology, and report similarities and differences across topics of importance for the sustainability and collaboration between registers. Method: Representatives of all known CP registers globally (n = 57) were invited to participate. The online survey included 68 questions across aims, methodologies, output/impact, and stakeholder involvement. Responses were analysed using descriptive statistics. Results: Forty‐five registers participated, including three register networks. Twenty were newly established or under development, including 12 in low‐ and middle‐income countries (LMICs). An epidemiological aim was reported by 91% of registers. Funding is received by 85% of registers, most often from not‐for‐profit organizations. CP definitions are comparable across registers. While the minimum data set of a register network is used by most registers, only 25% of identified items are collected by all three register networks. Ninety per cent of registers measure research activities/output, and 64% measure research impact. People with lived experience are involved in 62% of registers. Interpretation: There has been a recent surge in CP registers globally, particularly in LMICs, which will improve understanding of CP epidemiology. Ongoing efforts to address identified methodological differences are essential to validate comparison of results and support register collaboration. What this paper adds: Cerebral palsy (CP) registers represent an increasing number of regions, including low‐ and middle‐income, worldwide.Most registers collect the minimum data set of a CP register network.Research activities/output and impact are measured by most registers.The majority of registers involve people with lived experience in operation or research. [ABSTRACT FROM AUTHOR]

Aim: This study describes the process of updating the cerebral palsy (CP) common data elements (CDEs), specifically identifying tools that capture the impact of chronic pain on children's functioning. Method: Through a partnership between the American Academy for Cerebral Palsy and Developmental Medicine and the National Institute of Neurological Disorders and Stroke (NINDS), the CP CDEs were developed as data standards for clinical research in neuroscience. Chronic pain was underrepresented in the NINDS CP CDEs version 1.0. A multi‐step methodology was applied by an interdisciplinary professional team. Following an adapted CP chronic pain tools' rating system, and a review of psychometric properties, clinical utility, and compliance with inclusion/exclusion criteria, a set of recommended pain tools was posted online for external public comment in May 2022. Results: Fifteen chronic pain tools met inclusion criteria, representing constructs across all components of the International Classification of Functioning, Disability and Health. Interpretation: This paper describes the first condition‐specific pain CDEs for a pediatric population. The proposed set of chronic pain tools complement and enhance the applicability of the existing pediatric CP CDEs. The novel CP CDE pain tools harmonize the assessment of chronic pain, addressing not only intensity of chronic pain, but also the functional impact of experiencing it in everyday activities. [ABSTRACT FROM AUTHOR]

Aim: To identify and provide a descriptive overview of the development of children, adolescents, and young adults with cerebral palsy (CP) in longitudinal studies; and map areas of focus according to the components of the World Health Organization's International Classification of Functioning, Disability, and Health (ICF). Method: Longitudinal studies of the development of children, adolescents, and/or young adults with CP were included in this scoping review. A search for eligible studies was conducted in the databases MEDLINE, PubMed, LILACS, EMBASE, Cochrane, CINAHL, and Scopus, and was restricted to the years 2002 to 2022. All outcome measures of the studies were classified into ICF components. Results: In the 56 studies included, there were 19 438 participants, involving mainly children, followed by adolescents, and lastly young adults. All components of the ICF were investigated and many studies reported outcomes in more than one component. Activity was the most investigated (67.9%; n = 38 studies), followed by body functions and structures (42.9%; n = 24 studies). Participation (14.2%; n = 8 studies) and environmental factors (3.6%; n = 2 studies) were the least studied. None of the studies investigated personal factors as an outcome. Interpretation: This scoping review provides an overview of studies on the development of children, adolescents, and young adults with CP, using the ICF framework, identifying current areas of focus and gaps in the research. Future studies should target participation, contextual factors, and the transition into adulthood. What this paper adds: The International Classification of Functioning, Disability, and Health can be used to map a range of outcomes through developmental studies.The main outcomes investigated in children with cerebral palsy were activity, and body functions and structures.Little has been explored in participation and contextual factors outcomes over time.The main classification used to stratify the participants was the Gross Motor Function Classification System. [ABSTRACT FROM AUTHOR]

Aim: To describe the evidence, outcomes, and lived experience of supported standing for children and young adults with cerebral palsy aged 25 years or younger, classified in Gross Motor Function Classification System levels IV and V. Method: This scoping review included searches in eight electronic databases and manual searching from database inception to May 2020 and updated on 21st February 2022. Two of three reviewers independently screened titles and abstracts and extracted and appraised data. Methodological quality and risk of bias were appraised using tools appropriate to study type. Content analysis and frequency effect sizes were calculated for qualitative and descriptive evidence. Results: From 126 full‐text references, 59 citations (one study was reported over two citations) were included: 16 systematic reviews, 17 intervention studies reporting over 18 citations, eight analytical cross‐sectional studies, five descriptive cross‐sectional/survey studies, five qualitative studies, and one mixed‐methods study were identified, along with six clinical guidelines. Maintenance of bone mineral density and contracture prevention outcomes were supported by the most experimental studies and evidence syntheses, while evidence supporting other outcomes was primarily quasi‐experimental or descriptive. Qualitative evidence suggests that programmes are influenced by attitudes, device, child, and environmental factors. Interpretation: Individualized assessment and prescription are essential to match personal and environmental needs. Although experimental evidence is limited due to many factors, lived‐experience and cohort data suggest that successful integration of standing programmes into age‐appropriate and meaningful activities may enhance function, participation, and overall health. What this paper adds: Supported‐standing interventions may provide an important psychosocial and physical change of position.Supported standing is not passive for those classified in Gross Motor Function Classification System level IV or V.Supported standing may enhance social participation, functional abilities, and fitness.Children need choice in where and when to stand. [ABSTRACT FROM AUTHOR]

Aim: To create a shortened, more user‐friendly Second Edition of the Dyskinesia Impairment Scale (DIS‐II) to assess dystonia and choreoathetosis, and evaluate its construct validity and reliability. Method: Scale development included an online expert meeting (n = 21) and iterative discussions within the research group (n = 6). A Rasch measurement model analysis on DIS scores from individuals with dyskinetic cerebral palsy or inherited/idiopathic dystonia (n = 123, 74 males, mean age 14 years, SD 5 years) was performed to evaluate the construct validity and reliability of the DIS‐II. Results: The DIS‐II evaluates dystonia and choreoathetosis in action and rest in 11 body regions, with action items scored from 0 to 3 and rest items 0 to 2. The number of videos to record are reduced from 26 to 14 and the items to score are reduced from 144 to 88. Rating scale functioning, goodness‐of‐fit evaluation, principal component analysis, and targeting met the predefined quality criteria of the study and construct validity was therefore considered good. Furthermore, person reliability indicated that the DIS‐II can separate individuals into eight distinct ability levels. Interpretation: The DIS‐II provides valid and reliable measures for dystonia and choreoathetosis, and reduces the administration and scoring time compared with the DIS. The DIS‐II logit scores (interval level data) enhance comparison over time and between individuals in clinical practice and research. What this paper adds: Compared with the Dyskinesia Impairment Scale (DIS), the shortened edition (DIS‐II) requires half of the number of videos to be scored.The DIS‐II has a simplified rating scale, requiring scoring of 88 instead of 144 items.The DIS‐II has shown excellent reliability and good construct validity.The interval properties of the DIS‐II are superior to the ordinal level outcome measures of the DIS. [ABSTRACT FROM AUTHOR]

Aim: To explore whether subgroups of adults with cerebral palsy (CP) with different fatigue diurnal profiles can be discerned, and to explore whether sleep, physical activity, or health‐related fitness are associated with these profiles. Method: Thirty‐two adults (median age 29 years 8 months; range 20–54 years; 11 males, 21 females) with spastic CP (Gross Motor Function Classification System levels I–III) with physical activity‐related fatigue complaints participated. Real‐time fatigue and physical activity were assessed for 7 consecutive days by short message service text four times during the day and by wearing an accelerometer respectively. Sleep was assessed by the Pittsburgh Sleep Quality Index, and fitness by assessing body composition and aerobic capacity. Latent class growth modelling was used to classify subgroups according to their diurnal profiles of real‐time fatigue. Univariable multinomial logistic regression analysis explored whether participant characteristics, sleep, physical activity, or health‐related fitness were associated with diurnal profiles. Results: Three distinct fatigue diurnal profiles were identified: stable low (n = 10), increasing (n = 14), and stable high (n = 8). Only aerobic capacity was associated with fatigue profiles (odds ratio 1.15, 95% confidence interval 1.00–1.34; p = 0.05). Interpretation: Fatigue in adults with CP may be low or high stable or may increase during the day. These findings indicate the relevance of assessing fatigue variability. What this paper adds: We found three patterns of daily fatigue in adults with cerebral palsy (CP).Only aerobic capacity was associated with fatigue profiles in adults with CP.Moment‐to‐moment variations in fatigue can help with personalized fatigue management. [ABSTRACT FROM AUTHOR]

Aim: To provide an updated description of the rates, trends, and predictors of mortality of individuals with cerebral palsy (CP), born in the Australian state of Victoria between 1970 and 2012. Method: Data were extracted for 4807 individuals (2091 females; 2716 males). The probability of survival to 30th June 2017 was calculated using the Kaplan–Meier method. Mortality rates were calculated per 1000 person‐years using age strata and compared with population mortality rates to produce mortality ratios. Cox proportional hazards regression was used to calculate hazard ratios for selected demographic and clinical characteristics and to estimate the effect of birth epoch on 15‐year survival. Results: There were 666 recorded deaths. Compared to the general population, mortality was higher for all persons with CP and highest for children aged 1 to 15 years (45–62 times). We observed 35% improvement in the probability of survival to 15 years for births in the 2000s relative to the 1970s (hazard ratio 0.65, 95% confidence interval [CI] 0.49, 0.86), but only 4% improvement for the subgroup with complex CP (hazard ratio 0.96, 95% CI 0.69, 1.33). Interpretation: The observed improvements in survival for those born in the 2000s is likely related predominantly to a proportional reduction in complex CP within the cohort. What this paper adds: Length of survival improved for Australians with cerebral palsy (CP) born this millennium.Improved survival was mainly because of a proportional reduction in complex CP.A small improvement in length of survival was seen for children with complex CP. [ABSTRACT FROM AUTHOR]

Aim: To outline the development and examine the content and construct validity of a new tool, the Dyskinetic Cerebral Palsy Functional Impact Scale (D‐FIS), which measures the impact of dyskinesia on everyday activities in children with cerebral palsy (CP). Method: D‐FIS content was informed by a systematic review of dyskinesia outcome measures, in collaboration with children with dyskinetic CP, parents, caregivers, and expert clinicians. The D‐FIS uses parent proxy to rate impact of dyskinesia on everyday activities. Construct validity was determined by examining internal consistency; known groups validity with the Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), Communication Function Classification System (CFCS), and Eating and Drinking Ability Classification System (EDACS); and convergent validity with the Barry‐Albright Dystonia Scale (BADS). Results: Fifty‐seven parents of children (29 males, 28 females, mean [SD] age 11y 8mo [4y 4mo], range 2y 6mo–18y) completed the D‐FIS. Correlation between D‐FIS and GMFCS was r=0.86 (95% confidence interval [CI]: 0.77–0.91, p<0.001); MACS r=0.84 (95% CI: 0.73–0.90, p<0.001); CFCS r=0.80 (95% CI: 0.67–0.88, p<0.001); and EDACS r=0.78 (95% CI: 0.66–0.87). Correlation between D‐FIS and BADS was r=0.77 (95% CI: 0.64–0.86, p<0.001). Cronbach's alpha was 0.96. Interpretation: The D‐FIS demonstrates good construct validity and high internal consistency. The D‐FIS will be useful for identifying priorities for intervention. It adds to the measurement tool kit for children with dyskinetic CP by addressing functional impact of dyskinetic movements and postures. What this paper addsThe Dyskinetic Cerebral Palsy Functional Impact Scale (D‐FIS) assesses the perceived impact of dyskinesia on daily activities in children with cerebral palsy (CP).The D‐FIS demonstrates good construct validity and high internal consistency.The D‐FIS is a clinically feasible, family‐centred tool that fills a current gap in the dyskinetic CP assessment toolkit. What this paper adds: The Dyskinetic Cerebral Palsy Functional Impact Scale (D‐FIS) assesses the perceived impact of dyskinesia on daily activities in children with cerebral palsy (CP).The D‐FIS demonstrates good construct validity and high internal consistency.The D‐FIS is a clinically feasible, family‐centred tool that fills a current gap in the dyskinetic CP assessment toolkit. This original article is commented by Himmelmann on page 1370 of this issue. [ABSTRACT FROM AUTHOR]

Aim: To synthetize studies assessing somatosensory deficits and alterations in cerebral responses evoked by somatosensory stimulation in individuals with cerebral palsy (CP) compared to typically developing individuals. Method: A scoping review of the literature was performed in the MEDLINE, Embase, PsycInfo, CINAHL, Evidence‐Based Medicine Reviews, and Web of Science databases (last search carried out on 6th and 7th August 2020) with a combination of keywords related to CP and somatosensory functions. Somatosensory deficits were measured with clinical tests and alterations in cerebral responses were measured with functional magnetic resonance imaging, electroencephalography, and magnetoencephalography. Results: Forty‐eight articles were included. Overall, 1463 participants with CP (mean [SD] age 13y 1mo [4y 11mo], range 1–55y; 416 males, 319 females, sex not identified for the remaining participants) and 1478 controls (mean [SD] age 13y 1mo [5y 8mo], range 1–42y; 362 males, 334 females, sex not identified for the remaining participants) were included in the scoping review. For tactile function, most studies reported registration (8 out of 13) or perception (21 out of 21) deficits in participants with CP. For proprioception, most studies also reported registration (6 out of 8) or perception (10 out of 15) deficits. Pain function has not been studied as much, but most studies reported registration (2 out of 3) or perception (3 out of 3) alterations. Neuroimaging findings (18 studies) showed alterations in the somatotopy, morphology, latency, or amplitude of cortical responses evoked by somatosensory stimuli. Interpretation: Despite the heterogeneity in the methods employed, most studies reported somatosensory deficits. The focus has been mainly on tactile and proprioceptive function, whereas pain has received little attention. Future research should rigorously define the methods employed and include a sample that is more representative of the population with CP. What this paper addsMost of the papers reviewed found tactile registration and perception deficits in the upper limbs.Proprioceptive deficits were generally observed in cerebral palsy but results were heterogeneous.Pain has received little attention compared to tactile and proprioceptive functions.Neuroimaging studies supported behavioral observations.Alterations were observed for both the most and least affected limb. What this paper adds: Most of the papers reviewed found tactile registration and perception deficits in the upper limbs.Proprioceptive deficits were generally observed in cerebral palsy but results were heterogeneous.Pain has received little attention compared to tactile and proprioceptive functions.Neuroimaging studies supported behavioral observations.Alterations were observed for both the most and least affected limb. Editor's Choice Cerebral palsy is essentially a sensorimotor disorder,1 but the clinical and research focus has almost exclusively been on motor aspects. My Editor's Choice for the December 2021 issue is this scoping review of clinical impairments of somatosensory function and functioning of the neural pathways in people with cerebral palsy. It highlights a useful body of findings on tactile and proprioceptive sensation and perception, and less good documentation of pain processing. Reference 1. Dan B. Cerebral palsy is a sensorimotor disorder. Dev Med Child Neurol 2020; 62: 768. [ABSTRACT FROM AUTHOR]

AIM To determine which patients with cerebral palsy (CP) should undergo genetic testing, we compared the rate of likely causative genetic variants from whole‐exome sequencing in individuals with and without environmental risk factors. METHOD Patients were part of a convenience and physician‐referred cohort recruited from a single medical center, and research whole‐exome sequencing was completed. Participants were evaluated for the following risk factors: extreme preterm birth, brain bleed or stroke, birth asphyxia, brain malformations, and intrauterine infection. RESULTS A total of 151 unrelated individuals with CP (81 females, 70 males; mean age 25y 7mo [SD 17y 5mo], range 3wks–72y) participated. Causative genetic variants were identified in 14 participants (9.3%). There was no significant difference in diagnostic rate between individuals with risk factors (10 out of 123; 8.1%) and those without (4 out of 28; 14.3%) (Fisher's exact p=0.3). INTERPRETATION While the rate of genetic diagnoses among individuals without risk factors was higher than those with risk factors, the difference was not statistically significant at this sample size. The identification of genetic diagnoses in over 8% of cases with risk factors suggests that these might confer susceptibility to environmental factors, and that further research should include individuals with risk factors. What this paper addsThere is no significant difference in diagnostic rate between individuals with and without risk factors.Genetic variants may confer susceptibility to environmental risk factors.Six causative variants were identified in genes not previously associated with cerebral palsy.Global developmental delay/intellectual disability is positively associated with a genetic etiology.Extreme preterm birth, stroke/brain hemorrhage, and older age are negatively associated with a genetic etiology. What this paper adds: There is no significant difference in diagnostic rate between individuals with and without risk factors.Genetic variants may confer susceptibility to environmental risk factors.Six causative variants were identified in genes not previously associated with cerebral palsy.Global developmental delay/intellectual disability is positively associated with a genetic etiology.Extreme preterm birth, stroke/brain hemorrhage, and older age are negatively associated with a genetic etiology. This original article is commented by MacLennan on page 1369 of this issue. [ABSTRACT FROM AUTHOR]

Aim: To describe: (1) the frequency and types of sleep problems, (2) parent‐rated satisfaction with their child's and their own sleep, and (3) child factors related to the occurrence of sleep problems in children with cerebral palsy (CP) and their parents. The secondary objective was to compare the sleep outcomes of children with CP with those from typically developing children and their parents. Method: The Sleep section of the 24‐hour activity checklist was used to assess the sleep of children with CP and their parents and the sleep of typically developing children and their parents. Results: The sleep outcomes of 90 children with CP (median age 5y, range 0–11y, 53 males, 37 females, 84.4% ambulatory) and 157 typically developing peers (median age 5y, range 0–12y; 79 males, 78 females) and their parents were collected. Children with CP were more likely to have a sleep problem than typically developing children. Non‐ambulatory children with CP were more severely affected by sleep problems than ambulatory children. The parents of non‐ambulatory children were less satisfied about their child's and their own sleep. Waking up during the night, pain/discomfort in bed, and daytime fatigue were more common in children with CP and more prevalent in children who were non‐ambulatory. Interpretation: These findings highlight the need to integrate sleep assessment into routine paediatric health care practice. What this paper addsChildren with cerebral palsy (CP) are more likely to have a sleep problem than typically developing peers.Non‐ambulatory children with CP are more severely affected by sleep problems.One‐third of parents of children with CP report feeling sleep‐deprived often or always compared to a quarter of parents of typically developing children. What this paper adds: Children with cerebral palsy (CP) are more likely to have a sleep problem than typically developing peers.Non‐ambulatory children with CP are more severely affected by sleep problems.One‐third of parents of children with CP report feeling sleep‐deprived often or always compared to a quarter of parents of typically developing children. This original article is commented by McDonald on page 1247 of this issue. [ABSTRACT FROM AUTHOR]

Aim: To describe the epidemiology of cerebral palsy (CP) in children from low‐ and middle‐income countries (LMICs) using data from the Global Low‐ and Middle‐Income Country CP register (GLM‐CPR). Method: The GLM‐CPR is a multi‐country initiative that combines and compares data from children with CP (<18y) in LMICs. Children with CP are registered after detailed neurodevelopmental assessment by a multidisciplinary medical team using a harmonized protocol. Data are collected on agreed core variables. Descriptive analyses are completed to report findings from participating countries. Results: Between January 2015 and May 2019, 2664 children were recruited from Bangladesh, Nepal, Indonesia, and Ghana (mean age [SD] at assessment: 7y 8mo [4y 8mo], 95% confidence interval 7y 6mo−7y 11mo; male [n=1615] 60.6%, female [n=1049] 39.4%). Overall, 86.6% children acquired CP prenatally and perinatally (e.g. preterm birth, birth asphyxia, neonatal encephalopathy). Median age at CP diagnosis was 3 years. Moreover, 79.2% children had spastic CP and 73.3% were classified in Gross Motor Function Classification System levels III to V. Notably, 47.3% of children never received rehabilitation services (median age at receiving rehabilitation services was 3y; 12.7% received assistive devices) and 75.6% of school‐age children had no access to education. Interpretation: Population‐based data show that the proportion of severe cases of CP is very high in LMICs. Children with CP in LMICs lack access to rehabilitation and educational services and a large proportion of children have potentially preventable risk factors, for example, birth asphyxia and neonatal infections. Delayed diagnosis, severe motor impairments, and lack of rehabilitation in most children call for urgent action to identify preventive opportunities and promote early diagnosis and intervention for children with CP in LMICs. What this paper addsThe proportion of severe cases of cerebral palsy (CP) is very high in rural low‐ and middle‐income countries (LMICs).Children with CP in LMICs lack access to rehabilitation and educational services.A large proportion of children with CP in LMICs have potentially preventable risk factors. What this paper adds: The proportion of severe cases of cerebral palsy (CP) is very high in rural low‐ and middle‐income countries (LMICs).Children with CP in LMICs lack access to rehabilitation and educational services.A large proportion of children with CP in LMICs have potentially preventable risk factors. This original article is commented by Paneth on page 1245 of this issue. [ABSTRACT FROM AUTHOR]

Aim: To systematically review and meta‐analyse the measurement properties of the Gross Motor Function Classification System (GMFCS), Gross Motor Function Classification System‐Expanded & Revised (GMFCS‐E&R), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS) in children with cerebral palsy (CP). Method: Six databases were searched. Articles on the measurement properties of the GMFCS, GMFCS‐E&R, MACS, and CFCS administered to children with CP were included. Quality was assessed by means of the COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) Risk of Bias checklist. The level and grading of evidence were defined for each measurement property. Results: Forty‐four articles were included in the systematic review and 37 articles were included in the meta‐analysis. The level (grading) of evidence was strong (positive) for reliability and construct validity. Content validity displayed an unknown level of evidence for the GMFCS, limited evidence (positive) for the MACS, and moderate evidence (positive) for the CFCS. There was moderate (positive) evidence for measurement error in the GMFCS and MACS. The level of evidence for responsiveness was unknown. No studies investigated cross‐cultural validity. Interpretation: These instruments can be used by health care professionals and caregivers to quantify the constructs needed to measure ability in children with CP. Current high‐quality evidence supports the use of these tools to classify ability in children with CP. Adopting the COSMIN guidelines, content, and cross‐cultural validity should be investigated further. What this paper addsStrong evidence supports the reliability and construct validity of the GMFCS, GMFCS‐E&R, MACS, and CFCS as functional classification systems in children with cerebral palsy.The GMFCS, GMFCS‐E&R, MACS, and CFCS can be used by both health care professionals and caregivers.The GMFCS, GMFCS‐E&R, MACS, and CFCS should not be used to detect change. What this paper adds: Strong evidence supports the reliability and construct validity of the GMFCS, GMFCS‐E&R, MACS, and CFCS as functional classification systems in children with cerebral palsy.The GMFCS, GMFCS‐E&R, MACS, and CFCS can be used by both health care professionals and caregivers.The GMFCS, GMFCS‐E&R, MACS, and CFCS should not be used to detect change. This systematic review is commented by Palisano on page 1242 of this issue. [ABSTRACT FROM AUTHOR]

Aim: To evaluate the effect of repeated onabotulinum neurotoxin A injections for the treatment of drooling in children with neurodisabilities. Method: This was a retrospective cohort study, in which the first, second, and third onabotulinum neurotoxin A injection were compared within children treated between 2000 and 2020. Primary outcomes included drooling quotient, visual analogue scale (VAS), and treatment success defined as ≥50% reduction in drooling quotient and/or VAS 8 weeks after treatment. Each outcome was obtained at baseline and 8 weeks posttreatment. Results: Seventy‐seven children were included (mean age at first injection: 8y 3mo, SD 3y 7mo, range 3–17y; 44 males, 33 females; 51.9% with cerebral palsy, 45.5% wheelchair‐bound). The objective (drooling quotient) and subjective (VAS) effect after the second injection was lower compared to the first injection. The third injection showed less objective and significantly less subjective effect compared to the first injection. An overall success rate of 74.0%, 41.6%, and 45.8% were found for the first, second, and third injection respectively. Interpretation: Although onabotulinum neurotoxin A remained effective throughout the entire treatment course, there is less effect of subsequent onabotulinum neurotoxin A injections compared to the first. Although there might be a loss of effect after repeated injections, there is continued improvement for most children. What this paper addsRepeated injections show a diminished treatment effect after the second injection.A continued improvement is seen in most patients. What this paper adds: Repeated injections show a diminished treatment effect after the second injection.A continued improvement is seen in most patients. [ABSTRACT FROM AUTHOR]

Aim: To quantify the microstructural differences in the cervical‐thoracic spinal cord of adults with cerebral palsy (CP). Method: Magnetic resonance imaging of the proximal spinal cord (C6–T3) was conducted on a cohort of adults with CP (n=13; mean age=31y 11mo, standard deviation [SD] 8y 7mo; range=20y 8mo–47y 6mo; eight females, five males) and population norm adult controls (n=16; mean age=31y 4mo, SD 9y 9mo; range=19y 4mo–49y 5mo; seven females, nine males). The cross‐sectional area (CSA) of the spinal cord, gray and white matter, magnetization transfer ratio (MTR), and fractional anisotropy of the cuneatus and corticospinal tracts were calculated. Results: The total spinal cord CSA and proportion of the spinal cord gray matter CSA were significantly decreased in the adults with CP. The corticospinal tracts' MTR was lower in the adults with CP. Individuals that had reduced gray matter also tended to have reduced MTR in their corticospinal tracts (r=0.42, p=0.029) and worse hand dexterity clinical scores (r=0.53, p=0.004). Interpretation: These results show that there are changes in the spinal cord microstructure of adults with CP. Ultimately, these microstructural changes play a role in the extent of the hand sensorimotor deficits seen in adults with CP. What this paper addsAdults with cerebral palsy (CP) have a reduced spinal cord cross‐sectional area (CSA).Spinal cord gray matter is reduced in adults with CP.Spinal cord CSA is associated with hand dexterity.Magnetization transfer ratio of corticospinal tracts was lower in adults with CP. What this paper adds: Adults with cerebral palsy (CP) have a reduced spinal cord cross‐sectional area (CSA).Spinal cord gray matter is reduced in adults with CP.Spinal cord CSA is associated with hand dexterity.Magnetization transfer ratio of corticospinal tracts was lower in adults with CP. This article is commented on by Cohen‐Adad on page 896 of this issue. [ABSTRACT FROM AUTHOR]

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Muscle‐tendon unit surgery for correction of deformities and movement dysfunction in children with cerebral palsy (CP) is fairly complicated. An understanding of basic muscle‐tendon unit properties and their adaptation to both CP and surgery are important to develop advances in this field. In this review, we provide information to therapists, surgeons, and scientists regarding the short‐ and long‐term adaptations of the muscle‐tendon unit. Surgical releases, lengthening, and transpositions are discussed, as are some of the tissue, cellular, and molecular adaptations. What this paper addsMuscle strength, tone, and control must be considered in surgical interventions for cerebral palsy (CP).Muscle‐tendon unit lengthening causes significant and lasting weakness requiring prolonged rehabilitation.Sarcomere length increases in CP muscle may be one of the underlying causes of muscle weakness.Muscle satellite cells are decreased and epigenetically modified in a way that may limit muscle growth in CP. What this paper adds: Muscle strength, tone, and control must be considered in surgical interventions for cerebral palsy (CP).Muscle‐tendon unit lengthening causes significant and lasting weakness requiring prolonged rehabilitation.Sarcomere length increases in CP muscle may be one of the underlying causes of muscle weakness.Muscle satellite cells are decreased and epigenetically modified in a way that may limit muscle growth in CP. [ABSTRACT FROM AUTHOR]

Aim: To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP. Method: We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers. Results: In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I–IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III–V) participated. We identified 132 unique second‐level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services. Interpretation: Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. What this paper addsIncluding the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP).Adults with CP perceive environmental factors as essential elements for everyday functioning.Adults with intellectual disability should be considered as a group with specific problems. What this paper adds: Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP).Adults with CP perceive environmental factors as essential elements for everyday functioning.Adults with intellectual disability should be considered as a group with specific problems. This article is commented on by Escorpizo on page 766 of this issue. [ABSTRACT FROM AUTHOR]