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The Artemis Accords provide a framework of agreed principles which the United States and other partner countries have committed to following when conducting lunar exploration. Although negotiated as part of Project Artemis, the Accords could also shape the law as humans move out into the solar system. This chapter will examine both the compliance with existing space law and evaluate the suitability of the Accords as a blueprint for future human settlements beyond the Earth and Moon. It is contended that the most important contribution of the Accords is to reinforce existing principles of international space law. It is also argued that efforts must be made to ensure the maintenance of established international forums to avoid the fracturing of the existing Treaty frameworks and the increased risk of conflict that would bring.

Technical solutions could facilitate activities and participation in individuals with disabilities. For the development of solutions, hackathons are a method of interdisciplinary collaboration. For hackathon, the definition of pain points that require solutions is crucial. We aimed to determine engineers' preferences and expectations regarding pain point qualities.We used a collaborative approach involving individuals with disability, families, and healthcare professionals to determine pain points for use by engineering students during a disability Hackathon. A pain point bank was built using 3 upstream sources: a survey (350 responses, 20 pain points selected), interviews (8 children, 13 pain points), and a multidisciplinary workshop based on design thinking methods (45 people, 32 pain points). A fourth source was 20 adults with disabilities present during the Hackathon. Engineering students rated pain point qualities from each source in a questionnaire that included closed questions relating to predefined criteria: achievability, specificity, relevance and attractiveness and open questions to collect non-predefined quality criteria.Pain points from the workshop were most frequently used (48%); followed by on-site discussions with mentors (43%), the survey (38%), and interviews (31%). On-site discussions received the highest quality ratings followed by the workshop, survey, and interviews. Three quality criteria emerged from the responses to open questions: "representative", "empathy", and "real-need".To be actionable by engineers, pain points must relate to real needs, be achievable, specific, relevant and attractive but also representative and arouse empathy. We devised a checklist of qualities along with a toolbox of methods to achieve each.Implications For RehabilitationThe first step of the development of technical solutions for children and individuals with disabilities is the identification of their needs and their adequate formulation to be submitted to technical solutions providers.Daily life needs of individuals with disability were gathered for an engineering hackathon and proposed as pain points to 400 engineering students.To facilitate the development of solutions by engineers, pain points must relate to real needs, be specific, relevant, achievable and attractive; be representative and arouse empathy; a toolbox of needs collection methods is proposed to achieve each of those qualities.Discussions with individuals with disability and health professionals should be provided.

IntroductionDigital technologies can be used as part of paediatric motor rehabilitation to remediate impairment, promote recovery and improve function. However, the uptake of digital technologies in this clinical field may be limited.The aim of this study is to describe and explain digital technology use for paediatric motor rehabilitation. The specific objectives will be: (1) to describe the access to, acceptance of and use of digital technologies as a function of individual factors related to professionals practicing motor rehabilitation with children, and of environmental factors related to paediatric rehabilitation practice and (2) to explain digital technology use with a causal model based on the ‘unified theory of acceptance and use of technology’.Methods and analysisRehaTech4child (Rehabilitation Technologies For children) is a cross-sectional study involving an online survey, that is sponsored by the European Academy of Childhood Disability (EACD). The survey protocol follows the Strengthening the Reporting of Observational Studies in Epidemiology and CHERRIES (Checklist for Reporting Results of Internet E-Surveys) guidelines. The survey includes 43 questions about (1) respondents’ individual and environmental characteristics; (2) the ease of access to digital technologies, and the frequency, type and purpose of use of those technologies and (3) acceptance of technologies and barriers to their use. The survey is intended for professionals involved in paediatric motor rehabilitation. It is disseminated across Europe by the EACD network in 20 languages. Participation is anonymous and voluntary. We aim to include 500 respondents to ensure sufficient precision for the description of study outcomes and to perform stratified analyses by the main determinants.Ethics and disseminationEthics approval was waived by the Brest CHRU Institutional Review Board. The study is conducted according to current French legislation (loi Jardé (n°2012-300)) and the survey is GDPR compliant. Study findings will be presented at national and international meetings and submitted for publication in a peer-reviewed journal.Trial registration numberNCT05176522.

Space activity within the United Kingdom (U.K.) has undergone a significant period of change with successive governments viewing space as a significant source of economic growth. This has seen increasing attention being paid to both space policy and regulation. As a signatory to the Outer Space Treaty 1967, the U.K. is internationally responsible for the space activity of both its governmental and commercial entities. These obligations were initially discharged through the Outer Space Act 1986 and the licensing framework that emerged from that. The decision of the government to develop the capability to launch small satellites from within the U.K., coupled with the promise of high-altitude activities and horizontal launch, meant that action was needed to update the law and regulation of space activity within the U.K. The need for investment to fuel the ambition of the U.K. is set out in the National Space Strategy.

Until recently, movement analysis of children with motor disabilities has mainly relied on in-lab measurements using optoelectronic systems. The development of new tools is mainly inspired from mainstream devices, such as video cameras associated with artificial intelligence or inertial sensors. These tools have extended the assessment of movement in these children beyond traditional movement analysis laboratories, to take an interest in their movements in everyday life. Through the complementarity of these measurements (and associated tools), which the use of is becoming mainstream, a more exhaustive understanding of children's motor disorders and their impacts will allow clinicians to optimize their therapeutic management.Jusqu’à récemment l’analyse du mouvement chez l’enfant avec handicap moteur s’est principalement appuyée sur des mesures détaillées effectuées en laboratoire à l’aide de systèmes optoélectroniques. Le développement de nouveaux outils de mesure s’appuie sur des dispositifs grand public, tels que les caméras vidéo associées à de l’intelligence artificielle ou les capteurs inertiels. Ces outils ont permis d’étendre le champ d’exploration du mouvement de ces enfants hors des laboratoires traditionnels d’analyse du mouvement pour s’intéresser à leurs mouvements dans la vie quotidienne. Par la complémentarité de ces mesures (et outils associés), dont l’utilisation est appelée à se démocratiser, une compréhension plus exhaustive des troubles moteurs de l’enfant et de ses impacts permettra d’optimiser leur prise en charge thérapeutique.

Gait assessments in standardized settings, as part of the clinical follow-up of children with cerebral palsy (CP), may not represent gait in daily life. This study aimed at comparing gait characteristics in laboratory and real life settings on the basis of multiple parameters in children with CP and with typical development (TD). Fifteen children with CP and 14 with TD wore 5 inertial sensors (chest, thighs and shanks) during in-laboratory gait assessments and during 3 days of daily life. Sixteen parameters belonging to 8 distinct domains were computed from the angular velocities and/or accelerations. Each parameter measured in the laboratory was compared to the same parameter measured in daily life for walking bouts defined by a travelled distance similar to the laboratory, using Wilcoxon paired tests and Spearman’s correlations. Most gait characteristics differed between both environments in both groups. Numerous high correlations were found between laboratory and daily life gait parameters for the CP group, whereas fewer correlations were found in the TD group. These results demonstrated that children with CP perform better in clinical settings. Such quantitative evidence may enhance clinicians’ understanding of the gap between capacity and performance in children with CP and improve their decision-making.

Intrinsic gait variability (GV), i.e., fluctuations in the regularity of gait patterns between repetitive cycles, is inherent to the sensorimotor system and influenced by factors such as age and pathology. Increased GV is associated with gait impairments in individuals with cerebral palsy (CP) and has been mainly studied based on spatiotemporal parameters. The present study aimed to describe kinematic GV in young people with CP and its associations with clinical impairments [i.e., passive range of motion (pROM), muscle weakness, reduced selective motor control (selectivity), and spasticity]. This retrospective study included 177 participants with CP (age range 5-25 years; Gross Motor Function Classification System I-III) representing 289 clinical gait analyses [n = 172 for unilateral CP (uCP) vs. 117 for bilateral CP (bCP)]. As variability metrics, Root Mean Square Deviation (RMSD) for nine lower-limb kinematic parameters and Gait Standard Deviation (GaitSD) - as composite score of the kinematic parameters - were computed for the affected (unilateral = uCP) and most affected side (bilateral = bCP), respectively, as defined by clinical scores. GaitSD was then computed for the non/less-affected side for between leg comparisons. Uni- and multivariate linear regressions were subsequently performed on GaitSD of the affected/most affected side with all clinical impairments (composite scores) as independent variables. Highest RMSD were found in the transverse plane (hip, pelvis), for distal joints in the sagittal plane (knee, ankle) and for foot progression. GaitSD was not different between uCP and bCP (affected/most affected side) but higher in the non-affected vs. affected side in uCP. GaitSD was associated with age (p < 0.001), gait deviation index (GDI) (p < 0.05), muscle weakness (p < 0.001), selectivity (p < 0.05), and pROM (p < 0.001). After adjustment for age and GDI, GaitSD remained associated with muscle weakness (uCP: p = 0.003, bCP: p < 0.001) and selectivity (bCP: p = 0.024). Kinematic GV can be expressed as global indicator of variability (GaitSD) in young people with CP given the strong correlation of RMSD for lower-limb kinematic parameters. In terms of asymmetry, increased variability of the non-affected vs. affected side may indicate contralateral compensation mechanisms in uCP. Notably muscle weakness (uCP, bCP) and selectivity (bCP) - but not spasticity - were associated with GaitSD. Further studies need to explore the clinical relevance of kinematic GV in CP to support the interpretation of clinical gait analyses and therapeutic decision-making.

Despite recent improvements in survival rates in children with cancer, long-term toxicities remain a major concern. Physical activity could reduce the impact of long-term sequelae, notably in neuropsychological and physical areas. We report of a randomized trial of pure physical versus physical/attentional training in pediatric oncology patients. Twenty-two patients aged 6-18 y.o. were included, irrespective of their clinical diagnosis or treatment status, stratified by age and randomized 1:1 into pure physical vs. physical/attentional activity arms, with a cross-over at study midpoint. Neurological, motor and neuropsychological assessments were performed at inclusion, start, crossover and end of the program. Feasibility, defined as > 80% patients attending > 80% of sessions, was the primary endpoint. Secondary outcomes were improvements in neuropsychological and motor performance tests. While 68% of patients attended more than 80% of sessions during the pre-crossover phase of the study, this dropped to 36% post-crossover. Our study therefore failed to meet our primary endpoint. Nonetheless, significant improvements in anxiety (p

SUMMARYBACKGROUNDCerebral Palsy (CP) is a group of permanent disorders of movement and posture that follows injuries to the developing brain. It results in motor dysfunction and a wide variety of comorbidities like epilepsy, pain, speech, hearing and vision disorders, cognitive dysfunction, and eating and digestive difficulties. Central data collection is essential to study the epidemiology, clinical presentations, care, and quality of life of patients affected by CP. CP specialists founded the Swiss Cerebral Palsy Registry (Swiss-CP-Reg) in 2017. This paper describes the design, structure, aims and achievements of the Swiss-CP-Reg and presents first results.METHODSSwiss-CP-Reg records patients of any age suffering from CP who are born, treated, or live in Switzerland. It collects data from medical records and reports, from questionnaires answered by patients and their families, and from data linkage with routine statistics and other registries. The registry contains information on diagnosis, clinical presentation, comorbidities, therapies, personal information, family history, and quality of life.ResultsFrom August 2017 to August 2021, 546 participants (55% males, mean age at registration 8 years (interquartile range [IQR]: 5-12) were enrolled in Swiss-CP-Reg. Most had been born at term (56%), were less than 2 years old at diagnosis (73%, median 9 months, IQR: 18-25), and were diagnosed with spastic CP (76%). Most (59%) live with a mild motor impairment (Gross Motor Function Classification System [GMFCS] level I or II), 12% with a moderate motor impairment (GMFCS level III), and 29% with a severe motor impairment (GMFCS level IV or V). In a subset of 170 participants, we measured intelligence quotient (IQ) and saw a reduced IQ by GMFCS scale increase. The Swiss-CP-Reg has a strong interest in research with currently 5 nested projects running, and many more planned.CONCLUSIONSSwiss-CP-Reg collects and exchanges national data on people living with CP to answer clinically relevant questions. Its structure enables retrospective and prospective data collection and knowledge exchange between experts to optimise and standardise treatment and improve the health and quality of life of those diagnosed with CP in Switzerland.ClinicalTrials.gov identifierNCT04992871

The "Be an Airplane Pilot" (BE-API) protocol is a novel 3-D movement analysis (3DMA) protocol assessing the bimanual performance of children during a game.This study aimed to investigate the reliability and validity of this protocol in children with unilateral cerebral palsy (uCP).Angular waveforms (WAVE), maximum angles (MAX) and range of motion (ROM) of the trunk, shoulder, elbow and wrist joints were collected in children with uCP and in typically developing children (TDC) during 4 tasks of the BE-API protocol designed to explore specific degrees of freedom (DoF). The inter-trial reliability for children with uCP was assessed with the coefficient of multiple correlation (CMC) for WAVE and the intraclass correlation coefficient (ICC) and standard error of measurement (SEM) for MAX and ROM. Clinical performance-based measures, including the Assisting Hand Assessment (AHA) and ABILHAND-Kids scores, were used to explore correlations between clinical measures and kinematic parameters in children with uCP.20 children with uCP (13 boys; mean age 12.0 [SD 3.2] years) and 20 TDC (11 boys; mean age 11.9 [SD 3.4] years) were included. In children with uCP, most kinematic parameters showed high reliability (WAVE: CMC≥0.82; MAX and ROM: ICC≥0.85, SEM≤4.7°). Elbow extension, forearm supination, and wrist adduction were reduced and wrist flexion was increased for children with uCP versus TDC (P0.01). In children with uCP, MAX and ROM values were moderately correlated with clinical assessments (AHA score: r=0.48-0.65; ABILHAND-Kids score: r=0.48-0.49).The BE-API protocol is a 3DMA-bimanual performance-based assessment that is highly reliable in children with uCP. Children with uCP and TDC significantly differed in some clinically relevant kinematic parameters. The BE-API is a promising playful tool, helpful for better understanding upper-limb motor movement abnormalities in bimanual conditions and for tailoring treatments to individual deficits.

The purpose of this pilot study was to compare walking speed, an important component of gait, in the laboratory and daily life, in young individuals with cerebral palsy (CP) and with typical development (TD), and to quantify to what extent gait observed in clinical settings compares to gait in real life. Fifteen children, adolescents and young adults with CP (6 GMFCS I, 2 GMFCS II, and 7 GMFCS III) and 14 with TD were included. They wore 4 synchronized inertial sensors on their shanks and thighs while walking at their spontaneous self-selected speed in the laboratory, and then during 2 week-days and 1 weekend day in their daily environment. Walking speed was computed from shank angular velocity signals using a validated algorithm. The median of the speed distributions in the laboratory and daily life were compared at the group and individual levels using Wilcoxon tests and Spearman's correlation coefficients. The corresponding percentile of daily life speed equivalent to the speed in the laboratory was computed and observed at the group level. Daily-life walking speed was significantly lower compared to the laboratory for the CP group (0.91 [0.58-1.23] m/s vs 1.07 [0.73-1.28] m/s, p = 0.015), but not for TD (1.29 [1.24-1.40] m/s vs 1.29 [1.20-1.40] m/s, p = 0.715). Median speeds correlated highly in CP (p < 0.001, rho = 0.89), but not in TD. In children with CP, 60% of the daily life walking activity was at a slower speed than in-laboratory (corresponding percentile = 60). On the contrary, almost 60% of the daily life activity of TD was at a faster speed than in-laboratory (corresponding percentile = 42.5). Nevertheless, highly heterogeneous behaviors were observed within both populations and within subgroups of GMFCS level. At the group level, children with CP tend to under-perform during natural walking as compared to walking in a clinical environment. The heterogeneous behaviors at the individual level indicate that real-life gait performance cannot be directly inferred from in-laboratory capacity. This emphasizes the importance of completing clinical gait analysis with data from daily life, to better understand the overall function of children with CP.

One part of the population of neurolesioned patients is the transition of young patients with neurodisabilities to adult life. To guarantee favourable social and professional reinsertion is a major challenge, requiring inter-professional care. For this reason, in 2006 the CHUV, Lausanne created a transition-consultation framework with neuro-paediatricians and adult neurologists specialised in neuro-rehabilitation linked to a Swiss pilot social and professional reinsertion project collaborating with the invalidity insurance. As a model of the follow up of neurolesioned patients, this article reports the results of the reinsertion project that aims to bring awareness to the general practitioner of an inter-disciplinary care method adaptable to individuals. The holistic service saves time and improves the rate of successful reinsertion of young adults into social and professional life.Les jeunes en transition de l’enfance à l’âge adulte présentant une maladie neurodéveloppementale sont une population spécialement vulnérable. Le suivi de leurs problèmes de santé et leur insertion socioprofessionnelle représentent un véritable défi. Au CHUV, à Lausanne, une consultation de transition entre les neurorééducateurs pédiatriques et adultes a été créée en 2006 ainsi qu’un projet pilote suisse de réinsertion socioprofessionnelle en collaboration avec l’Office de l’assurance invalidité pour le canton de Vaud. Le résultat de ce projet pilote, qui peut être utilisé comme modèle pour tous les patients neurolésés, est rapporté ici avec comme objectif d’informer le médecin traitant et de lui permettre d’utiliser les outils de cette prestation holistique afin d’optimiser la durée et la qualité de la réinsertion.

Objectives During hospitalization in neonatal intensive care units, neonates are exposed to many painful procedures within a stressful environment. To date, many evidence-based guidelines are available. However, the quality of these guidelines and their clinical application remain unclear. This systematic review aimed to determinie the quality of existing guidelines on the management of procedural pain in neonates and to summarize the recommendations provided by these guidelines. Materials and methods A structured search was conducted in Embase, PubMed, CINAHL, JBI database, and gray literature resources in November 2018 to identify relevant guidelines published from 2007 onward. Published guidelines and guidelines from complementary searches were included in the treating assessment or management of procedural pain in neonates. The methodological quality was analyzed using the Appraisal of Guidelines for Research and Evaluation (AGREE) II Instrument. Results A total of 1154 records were identified. After screening for eligibility, 17 guidelines were included in this review. Among these, 11 were identified to be high-quality guidelines. Besides the usual recommendations for pharmacological and nonpharmacological treatments, the inclusion of parents, improving interprofessional collaboration, and considering the setting were identified as important elements. Discussion The results of this review show that there is a need to improve the methodological quality of guidelines for procedural pain in newborns. The set of recommendations for procedural pain prevention needs to involve not only pharmacological and nonpharmacological pain treatment but also parents and interprofessional collaboration. It is also essential to take into account facilitators, barriers, and the context to improve pain management.

Children with severe neurological disabilities are at an increased risk of acute, life-threatening events. We assessed physicians' attitudes when making decisions in these situations.We surveyed physicians in pediatric intensive care, neurology, and rehabilitation units in Swiss hospitals. The questionnaire explored participants' attitudes toward life-threatening situations in two scenarios: a child with profound intellectual and multiple disabilities (PIMD) and an infant with spinal muscular atrophy (SMA) type I.The participation rate was 55% (52/95). There was a consensus favoring non-invasive ventilation and comfort care as well as avoiding tracheostomy and invasive ventilation. For the child with PIMD, 61% of participants opposed cardiopulmonary resuscitation (CPR), 51% for the child with SMA. Physicians with over 20 years of experience were significantly more opposed to providing CPR than less experienced colleagues.Physicians held different views, influenced by personal factors. This highlights the importance of standardizing multidisciplinary processes toward approaching these complex situations.

Rhabdomyolysis with myoglobinuria is a recognized complication of dystrophinopathies. It can be triggered by infections, exercise or volatile anesthetics. To our knowledge, it has never been reported in boys with Duchenne muscular dystrophy (DMD) after the administration of bisphosphonates. We report two patients with DMD who presented an apparent transient rhabdomyolysis with myoglobinuria after zoledronate administration. Possible mechanisms could involve hypophosphatemia, a known dose-dependent side effect of bisphosphonates, and/or direct myotoxicity of biphosphonates. Physicians and families should be aware of rhabdomyolysis with myoglobinuria as a potential uncommon side effect of bisphosphonates in DMD, in particular of zoledronate.

Skeletal dysplasias are a large and heterogeneous group of conditions that affect growth and development of the skeleton. As might be expected, short stature is a frequent manifestation of these disorders but other complications do occur with varying frequencies depending on specific diagnosis and age of the patient. With the ongoing development of targeted therapies for achondroplasia and possibly other skeletal dysplasias, it is important to ascertain what are the factors influencing quality of life if we are to make meaningful assessments of therapeutic efficacy. Is it the short stature, in and of itself, that affects the quality of life for children with skeletal dysplasias or are the other complications more important determinants? We sought to address the effect of height by the use of questionnaire designed specifically for short stature; QoLissy. This questionnaire has been validated for use in Europe across several languages. Our study included 8 families with children between 8 and 18 years with a variety of skeletal dysplasia diagnoses. The results indicate a relatively low health-related quality of life from the child and parents' perspective, good coping strategies and, interestingly, a difference in perception of quality of life between parents and children, with parents rating the quality of life lower than their children. These results highlight the need for a more careful dissection of quality of life-influencers before deciding on how to assess drug efficacy and before advocating for multi-year therapy in children.

International audience; Cerebral palsy (CP), an umbrella term for a developmental motor disorder caused by early brain injury (EBI)/interference, remains debated. In this essay, we present a narrative, beginning with the original anatomical-clinical description of the so-called paralysie congéniale (congenial paralysis) by the French psychiatrist Jean-Baptiste Cazauvieilh. We then discuss how the concept has evolved over the last 2 centuries. We aim to illustrate these ideas with the biopsychosocial model of health, especially in light of the current neuroscientific and sociological knowledge of human development. We endeavour to integrate 3 connected but distinct entities: (1) the EBI as a seminal turning point of the individual's story; (2) the clinical findings we call CP, when motor impairment and activity limitation related to post-EBI (or other early non-progressive brain interference) appears, and; (3) a post-EBI developmental condition that encompasses the overall consequences of an EBI. This framework should guide individual, familial and collective care discussions and research strategies beyond the scope of CP.Copyright © 2019 Elsevier Masson SAS. All rights reserved.

Background Physical therapy interventions for ambulatory youth with cerebral palsy (CP) often focus on activity-based strategies to promote functional mobility and participation in physical activity. The use of activity monitors validated for this population could help to design effective personalized interventions by providing reliable outcome measures. The objective of this study was to devise a single-sensor based algorithm for locomotion and cadence detection, robust to atypical gait patterns of children with CP in the real-life like monitoring conditions. Methods Study included 15 children with CP, classified according to Gross Motor Function Classification System (GMFCS) between levels I and III, and 11 age-matched typically developing (TD). Six IMU devices were fixed on participant’s trunk (chest and low back/L5), thighs, and shanks. IMUs on trunk were independently used for development of algorithm, whereas the ensemble of devices on lower limbs were used as reference system. Data was collected according to a semi-structured protocol, and included typical daily-life activities performed indoor and outdoor. The algorithm was based on detection of peaks associated to heel-strike events, identified from the norm of trunk acceleration signals, and included several processing stages such as peak enhancement and selection of the steps-related peaks using heuristic decision rules. Cadence was estimated using time- and frequency–domain approaches. Performance metrics were sensitivity, specificity, precision, error, intra-class correlation coefficient, and Bland-Altman analysis. Results According to GMFCS, CP children were classified as GMFCS I (n = 7), GMFCS II (n = 3) and GMFCS III (n = 5). Mean values of sensitivity, specificity and precision for locomotion detection ranged between 0.93–0.98, 0.92–0.97 and 0.86–0.98 for TD, CP-GMFCS I and CP-GMFCS II-III groups, respectively. Mean values of absolute error for cadence estimation (steps/min) were similar for both methods, and ranged between 0.51–0.88, 1.18–1.33 and 1.94–2.3 for TD, CP-GMFCS I and CP-GMFCS II-III groups, respectively. The standard deviation was higher in CP-GMFCS II-III group, the lower performances being explained by the high variability of atypical gait patterns. Conclusions The algorithm demonstrated good performance when applied to a wide range of gait patterns, from normal to the pathological gait of highly affected children with CP using walking aids.

Background: There is a lack of objective and reliable tools to measure walking performance in children with cerebral palsy (CP)., Objective: To evaluate the reliability of inertial measurement units (IMUs) measuring daily life walking performance and physical activity (PA) in children with CP and healthy controls., Methods: Algorithms were developed to analyse data collected with IMUs during 2 standard school days of the same week and 1 weekend day in 15 children with CP and 14 controls. Additionally, within a clinical trial, 10 children with CP were measured twice, on the same weekday 2 to 4 weeks apart. Relative and absolute reliabilities of PA (% time walking, standing, sitting/lying) and gait parameters (e.g., velocity, cadence) were evaluated by using the intraclass correlation coefficient (ICC) and minimal detectable change (MDC95), comparing 2 school days of the same week, a school day with a weekend day, and the same weekday 2 to 4 weeks apart., Results: For the 15 children with CP (mean [SD] age 13.5 [3.4] years), ICCs were very high (0.70-0.98) when comparing gait parameters for 2 school days. ICCs were lower when comparing 2 school days for 14 control children (mean [SD] age 13.9 [3.0] years) and lowest when comparing a school day with a weekend day for both CP and control children. ICCs for PA were 0.90-0.91 when measuring the same weekday 2 to 4 weeks apart but were very low when comparing 2 school days of the same week or a school day with a weekend day. MDC95 values were high for both groups and all comparisons but comparable with findings of in-lab studies of similar parameters., Conclusions: Our IMU and algorithm setup appears to be a reliable tool to measure daily life gait parameters in children with CP when repeatedly measured on 2 school days. PA was also reliably assessed but when measuring the same school day some weeks apart. However, the high MDC95 values question whether the setup can be used as a responsive outcome measure of interventions. (C) C 2019 Elsevier Masson SAS. All rights reserved.

Aim To determine the prevalence and determinants of co-sleeping in school-aged children with a motor disability compared with the school-aged general population. Method A questionnaire on demographic characteristics and co-sleeping habits, along with the Sleep Disturbance Scale for Children (SDSC), was sent to parents of children aged between 4 years and 18 years followed in our tertiary paediatric neurorehabilitation clinic, and to school-aged children in a representative sample of state schools. Result We analysed responses for 245 children with motor disability (142 males, 103 females; mean age 10y 6mo, standard deviation [SD] 3y 10mo, range 4–18y) and 2891 of the general population (1484 males, 1497 females; mean age [SD] 9y 6mo [3y 5mo], range 4–18y) (response rates 37% and 26% respectively). Cerebral palsy was the most common diagnosis among children with motor disability. Weekly co-sleeping was significantly more common in children with motor disability than in the general population (11.8% vs 7.9% respectively, p=0.032). Special care of the child with motor disability at night, mainly addressing epilepsy, was reported as a cause of co-sleeping by two-thirds of parents. Factors associated with co-sleeping in the motor disability group were age, housing crowding, severe visual impairment, and pathological sleep according to the SDSC. Interpretation Co-sleeping is common among children with motor disability. It is influenced by personal and medical factors, as well as the requirements for special care at night. Therefore, health professionals should explore sleeping arrangements in families of children with motor disability.

The current lack of adapted performance metrics leads clinicians to focus on what children with cerebral palsy (CP) do in a clinical setting, despite the ongoing debate on whether capacity (what they do at best) adequately reflects performance (what they do in daily life). Our aim was to measure these children&rsquo, s habitual physical activity (PA) and gross motor capacity and investigate their relationship. Using five synchronized inertial measurement units (IMU) and algorithms adapted to this population, we computed 22 PA states integrating the type (e.g., sitting, walking, etc.), duration, and intensity of PA. Their temporal sequence was visualized with a PA barcode from which information about pattern complexity and the time spent in each of the six simplified PA states (PAS, considering PA type and duration, but not intensity) was extracted and compared to capacity. Results of 25 children with CP showed no strong association between motor capacity and performance, but a certain level of motor capacity seems to be a prerequisite for the achievement of higher PAS. Our multidimensional performance measurement provides a new method of PA assessment in this population, with an easy-to-understand visual output (barcode) and objective data for clinical and scientific use.

Children with motor disabilities such as cerebral palsy or neuromuscular diseases present more sleep disorders than their typically developing (TD) peers. However, research on these populations has always been performed using historical normative datasets or controls such as siblings. Therefore, we assessed the sleep quality of children with motor disabilities in comparison with a large, contemporary, general population sample.Demographic, medical, and the Sleep Disturbance Scale for Children (SDSC) questionnaires were sent to parents of children aged 4-18 years and followed by our tertiary pediatric neurorehabilitation clinic, and to those of school-aged children in regional primary and secondary schools. TD participant data allowed us to set pathological sleep score thresholds (T score ≥70).We collected 245 responses for children with motor disabilities and 2891 for those from the general population (37% and 26% response rates, respectively). Cerebral palsy was the most frequent diagnosis (N = 109, 44.5%). Children with motor disabilities had significantly more frequent pathological sleep reported in their total SDSC score (7% vs 1.9%, odds ratio (OR) 3.98, 95% confidence interval (CI) 2.17-7.27, p 0.001) and in five subscores. Single-parent households and drug-resistant epilepsy showed significant positive associations with pathological sleep among children with motor disabilities. For TD peers, parental unemployment and parental nationality were positively associated with pathological sleep.This population-based study robustly estimated the prevalence of sleep disorders in children with motor disabilities. Sleep disorders were significantly more frequent in children with motor disabilities, but at a lower frequency than previously reported.

Surgery for Hirschsprung's disease is often complicated by post-operative bowel motility disorders. The impact of intestinal neural histology on the surgical outcome has been previously studied, but no information is available concerning the influence of the distribution of interstitial cells of Cajal (ICC) on these complications. These cells are considered to be pacemakers in the gastrointestinal tract. The aim of this study was to assess the distribution of ICC in the proximal segment of resected bowel in Hirschsprung's disease and confront these results with the clinical outcome. Using immunohistochemistry for light microscopy, we compared the pattern of distribution of ICC in the proximal segment of resected bowel in Hirschsprung's disease with that in normal colon. We correlated these results with the corresponding neural intestinal histology determined by CD56 and the protein gene product 9.5 immunohistochemistry. The distribution of ICC in the proximal segment of resected bowel is identical to that of normal colon, regardless of normal or abnormal colon innervation. ICC distribution does not seem to contribute to post-operative bowel motility disorders in patients operated for Hirschsprung's disease

Purpose: The objective of study was to determine the effect of tandem ski (TS) activity on postural control and cardiac activity in children with profound intellectual and multiple disabilities (PIMDs).Method: Twenty children with PIMD and 20 age-matched controls (typically developed (TD) children) participated. Body segment movements were measured with inertial sensors (Physilog®) placed on the head, C7, trunk (including ECG) and pelvis with a seat reference. Each participant was measured during a 12-turn slalom pattern.Results: In each group, significant differences were observed between the head vs. trunk and head vs. pelvis angular speeds (p

Wearable inertial devices have recently been used to evaluate spatiotemporal parameters of gait in daily life situations. Given the heterogeneity of gait patterns in children with cerebral palsy (CP), the sensor placement and analysis algorithm may influence the validity of the results. This study aimed at comparing the spatiotemporal measurement performances of three wearable configurations defined by different sensor positioning on the lower limbs: (1) shanks and thighs, (2) shanks, and (3) feet. The three configurations were selected based on their potential to be used in daily life for children with CP and typically developing (TD) controls. For each configuration, dedicated gait analysis algorithms were used to detect gait events and compute spatiotemporal parameters. Fifteen children with CP and 11 TD controls were included. Accuracy, precision, and agreement of the three configurations were determined in comparison with an optoelectronic system as a reference. The three configurations were comparable for the evaluation of TD children and children with a low level of disability (CP-GMFCS I) whereas the shank-and-thigh-based configuration was more robust regarding children with a higher level of disability (CP-GMFCS II-III).