Body mass index is not suitable for assessing body composition in children with spastic cerebral palsy.

PURPOSE: To measure body composition by using bioelectrical impedance analysis (BIA) and body mass index (BMI) and to investigate the correlation and agreement between BMI and fat mass percentage in children with spastic Cerebral Palsy. MATERIALS AND METHODS: BIA was used to assess fat mass percentage and BMI was determined from body weight and height. BMI and fat mass percentage were both categorized into five categories. The association between fat mass percentage and BMI was assessed using Pearson's correlation coefficient. Agreement between BMI and fat mass percentage was investigated with weighted Cohen's kappa coefficient. RESULTS: One hundred and three children with CP across all Gross Motor Function Classification Levels (61% boys, mean age 9 years) were included. Mean BMI was 18.3 kg/m2 and mean fat mass was 24.9%. A large inter-subject variability was found with a weak correlation between BMI and fat mass percentage in children with a BMI < 20 kg/m2. Little agreement (k = 0.299, CI 0.16-0.44) between the categorization of children based on BMI and based on fat mass percentage was found. INTERPRETATION: The large inter-subject variability in fat mass percentage combined with little agreement between the BMI and BIA categories suggests that BMI is not a suitable measure of fat mass in children with CP.IMPLICATIONS FOR REHABILITATIONUsing body mass index (BMI) and instead of fat mass percentage increases the risk of misclassifying body composition in children with spastic Cerebral Palsy.Children with a BMI < 20 kg/m2 are more at risk to be misclassified for body composition.

"Your brain can't wait": perspectives of children and adolescents with acquired brain injury and their parents on physical rehabilitation during the subacute phase.

PURPOSE: Physical interventions during subacute rehabilitation have potential to improve functional recovery. This study explored the perspectives of children and adolescents with acquired brain injury (ABI) and their parents with respect to physical rehabilitation during the subacute phase. METHODS: Thirteen children and adolescents with ABI and their parents were included and interviewed using semi-structured interviews. Interview transcripts were analysed using inductive thematic analysis approach. RESULTS: Six themes were identified: 1) beliefs of physical rehabilitation, 2) content of physical rehabilitation, 3) tailored care, 4) impact of context, 5) communication and 6) transition. The importance of intensive physical practice was widely supported. The positive can-do mentality was emphasised to create an atmosphere of hope, meaning that every effort would be made to achieve maximum recovery. Intensive involvement of parents is considered essential during subacute rehabilitation including an open and mutual dialogue about the focus of rehabilitation, therapy goals and future participation in their own environment. CONCLUSIONS: Our findings highlight the need for an intensive rehabilitation approach, tailored to the individual's needs. The perspectives of children and adolescents and their parents in our study contribute to a better understanding of factors that are important for optimal recovery through physical rehabilitation during the subacute phase.

Children with acquired brain injury and their parents indicate the potential and thus the importance of intensive physical practice to enhance optimal recovery.Involvement of parents and the potential of their continuous presence during subacute rehabilitation may have a positive impact on the effect of rehabilitation efforts.The positive can-do mentality of rehabilitation professionals creates an atmosphere of hope and is an important requisite to achieve maximum recovery.Open dialogue between clinicians and the family is warranted about the focus of interventions.

Evaluation of Sleep Practices and Knowledge in Neonatal Healthcare.

BACKGROUND: Developmental care is designed to optimize early brain maturation by integrating procedures that support a healing environment. Protecting preterm sleep is important in developmental care. However, it is unclear to what extent healthcare professionals are aware of the importance of sleep and how sleep is currently implemented in the day-to-day care in the neonatal intensive care unit (NICU). PURPOSE: Identifying the current state of knowledge among healthcare professionals regarding neonatal sleep and how this is transferred to practice. METHODS: A survey was distributed among Dutch healthcare professionals. Three categories of data were sought, including (1) demographics of respondents; (2) questions relating to sleep practices; and (3) objective knowledge questions relating to sleep physiology and importance of sleep. Data were analyzed using Spearman's rho test and Cramer's V test. Furthermore, frequency tables and qualitative analyses were employed. RESULTS: The survey was completed by 427 participants from 34 hospitals in 25 Dutch cities. While healthcare professionals reported sleep to be especially important for neonates admitted in the NICU, low scores were achieved in the area of knowledge of sleep physiology. Most healthcare professionals (91.8%) adapted the timing of elective care procedures to sleep. However, sleep assessments were not based on scientific knowledge. Therefore, the difference between active sleep and wakefulness may often be wrongly assessed. Finally, sleep is rarely discussed between colleagues (27.4% regularly/always) and during rounds (7.5%-14.3% often/always). IMPLICATIONS: Knowledge about sleep physiology should be increased through education among neonatal healthcare professionals. Furthermore, sleep should be considered more often during rounds and handovers.

Development of expert consensus to guide physical rehabilitation in children and adolescents with acquired brain injury during the subacute phase.

OBJECTIVE: To develop consensus among experts to guide physical rehabilitation in children and adolescents with acquired brain injury during the subacute phase. DESIGN: International Delphi study. METHODS: A 3-round online Delphi study was conducted with 11 international experts in rehabilitation for children and adolescents with acquired brain injury. The first round consisted of open-ended questions; the second and third round consisted of ranking 139 statements on a 5-point Likert scale. RESULTS: The panel reached consensus on 116/139 statements. Consensus was reached on the importance of age, pre-injury developmental stage and the clinical presentation of the child when determining content and focus of physical rehabilitation. In addition, consensus was reached on the importance of participation-focused interventions, and involvement of family members in goal-setting and therapeutic activities. Although dosage was deemed very important, no consensus was reached for determination of dose-response variables to suit and influence the child's needs. CONCLUSION: This study provides a framework for clinicians to design physical rehabilitation interventions in children with acquired brain injury in the sub-acute recovery phase. The promotion of physical activity in meaningful contexts and involvement of family members are considered as important components to optimize recovery.

The temporal and bi-directional relationship between physical activity and sleep in ambulatory children with cerebral palsy.

PURPOSE: Exploring the temporal and bi-directional relationship between device-based measures of physical activity and sleep in ambulatory children with cerebral palsy (CP). MATERIALS AND METHODS: 24-hour activity data were collected from children with CP (n = 51, 43% girls, mean age (range); 6.8 (3-12) years; Gross Motor Function Classification System levels I to III). Nocturnal sleep parameters and daily physical activity were measured for seven consecutive days and nights using ActiGraph GT3X accelerometers. Linear mixed models were constructed to explore the relationships between sleep and activity. RESULTS: Light and moderate-to-vigorous activity were negatively associated with sleep efficiency (SE) (resp. p = 0.04, p = 0.010) and total sleep time (TST) (resp. p = 0.007, p = 0.016) the following night. Sedentary time was positively associated with SE and TST the following night (resp. p = 0.014, p = 0.004). SE and TST were positively associated with sedentary time (resp. p = 0.011, p = 0.001) and negatively with moderate-to-vigorous physical activity (resp. p < 0.001, p = 0.002) the following day. Total bedtime and TST were negatively associated with light physical activity (resp. p = 0.046, p = 0.004) the following day. CONCLUSIONS: The findings from this study suggest that ambulatory children with CP may not sleep better after physical activity, and vice versa, indicating that the relationship is complex and needs further investigation.

The use of device-based accelerometry is a feasible method to measure 24-hour activity patterns with sleep and physical activity in ambulatory children with cerebral palsy.The relationships between sleep and physical activity in children with cerebral palsy are not as expected based on patterns shown in peers with typical development.Interventions for sleep in children with cerebral palsy require a holistic approach, focusing on daily physical activity patterns and relevant child- and contextual factors.

Self-reported quantity and quality of sleep in children and adolescents with a chronic condition compared to healthy controls.

To assess self-reported quantity and quality of sleep in Dutch children with a chronic condition compared to healthy controls and to the recommended hours of sleep for youth. Sleep quantity and quality were analyzed in children with a chronic condition (cystic fibrosis, chronic kidney disease, congenital heart disease, (auto-)immune disease, and medically unexplained symptoms (MUS); n = 291; 15 ± 3.1 years, 63% female. A subset of 171 children with a chronic condition were matched to healthy controls using Propensity Score matching, based on age and sex, ratio 1:4. Self-reported sleep quantity and quality were assessed with established questionnaires. Children with MUS were analyzed separately to distinguish between chronic conditions with and without an identified pathophysiological cause. Generally, children with a chronic condition met the recommended amount of sleep, however 22% reported poor sleep quality. No significant differences in sleep quantity and quality were found between the diagnosis groups. Children with a chronic condition and with MUS slept significantly more than healthy controls at ages 13, 15, and 16. Both at primary and secondary school, poor sleep quality was least frequent reported in children with a chronic condition and most often reported in children with MUS.  Conclusion: Overall, children with chronic conditions, including MUS, met the recommended hours of sleep for youth, and slept more than healthy controls. However, it is important to obtain a better understanding of why a substantial subset of children with chronic conditions, mostly children with MUS, still perceived their sleep quality as poor. What is Known: • According to the Consensus statement of the American Academy of Sleep medicine, typically developing children (6 to 12 years) should sleep 9 to 12 h per night, and adolescents (13 to 18 years) should sleep 8 to 10 h per night. • Literature on the optimal quantity and quality of sleep in children with a chronic condition is very limited. What is New: Our findings are important and provide novel insights: • In general, children with a chronic condition sleep according to the recommended hours of sleep. • A substantial subset of children with chronic conditions, perceived their sleep quality as poor. Although this was reported mostly by children with medically unexplained symptoms (MUS), the found poor sleep quality was independent of specific diagnosis.

Accelerometer-measured physical activity, sedentary behavior, and sleep in children with cerebral palsy and their adherence to the 24-hour activity guidelines.

AIM: To measure and describe the 24-hour activities (i.e. physical activity, sedentary behavior, and sleep) and to examine adherence to the 24-hour activity guidelines among children with cerebral palsy (CP) using actigraphy. METHOD: Children's 24-hour activities were recorded over 7 days using hip- and wrist-worn ActiGraph wGT3X-BT accelerometers. RESULTS: In total, 362 days and 340 nights from 54 children with CP (Gross Motor Function Classification System [GMFCS] levels I-III; 44% females; median age [range] 6 years 6 months [3-12 years]) were included. Mean (SD) daily wear time was 746.2 (48.9) minutes, of which children spent on average 33.8% in light physical activity (251.6 [58.7] minutes per day), 5.2% in moderate-to-vigorous physical activity (38.5 [20.1] minutes per day), and the remaining 61.1% being sedentary (456.1 [80.4] minutes per day). Physical activity decreased while sedentary behavior increased with increasing GMFCS level. In total, 13% of all children met the physical activity recommendations, and 35% met the age-appropriate sleep duration recommendation. The proportion of children meeting the combined 24-hour guidelines for physical activity and sleep was low (5.9%), especially in those classified in GMFCS level III (0%). INTERPRETATION: The observed low 24-hour guideline adherence rates emphasize the importance of considering the entire continuum of movement behaviors in the care of children with CP, in efforts to promote healthy lifestyle behaviors and prevent negative health outcomes.

Real-time daily fatigue, sleep, physical activity, and health-related fitness in adults with cerebral palsy.

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.

Participation in sports of Dutch children with lower limb deficiencies.

PURPOSE: The primary aim was to describe sports participation of Dutch children and adolescents with lower limb deficiencies (LLD). The secondary aim was to explore perceived limitations concerning sports participation. METHODS: A total of 103 children and adolescents with LLD, aged 8-18 years (mean 11.7 years), were asked about their sports participation using a study-specific self-report questionnaire. RESULTS: Children and adolescents with LLD frequently (78%) participated in sports activities, and most of them (68%) participated in the sport of their preference. Just over half of all children (52%) perceived an inability to participate in specific sports. Physical performance (running) and endurance were mentioned as the most limiting factors in participating in certain sports. CONCLUSION: Children and adolescents with LLD in the Netherlands participate in a variety of sports. Despite dependency on lower limb prostheses in most cases, children and adolescents with LLD have a high potentiality of participating in sports.

Device-based and subjective measurements of sleep in children with cerebral palsy: a comparison of sleep diary, actigraphy, and bed sensor data.

STUDY OBJECTIVES: To investigate how subjective assessments and device-based measurements of sleep relate to each other in children with cerebral palsy (CP). METHODS: Sleep of children with CP, classified at Gross Motor Function Classification System levels I-III, was measured during 7 consecutive nights using 1 subjective (ie, sleep diary) and 2 device-based (ie, actigraphy and bed sensor) instruments. The agreement between the instruments was assessed for all nights and separately for school- and weekend nights, using intraclass correlation coefficients (ICC) and Bland-Altman plots. RESULTS: A total of 227 nights from 38 children with CP (53% male; median age [range] 6 [2-12] years), were included in the analyses. Sleep parameters showed poor agreement between the 3 instruments, except for total time in bed, which showed satisfactory agreement between (1) actigraphy and sleep diary (ICC > 0.86), (2) actigraphy and bed sensor (ICC > 0.84), and (3) sleep diary and bed sensor (ICC > 0.83). Furthermore, agreement between sleep diary and bed sensor was also satisfactory for total sleep time (ICC > 0.70) and wakefulness after sleep onset (ICC = 0.55; only during weekend nights). CONCLUSIONS: Researchers and clinicians need to be aware of the discrepancies between instruments for sleep monitoring in children with CP. We recommend combining both subjective and device-based measures to provide information on the perception as well as an unbiased estimate of sleep. Further research needs to be conducted on the use of a bed sensor for sleep monitoring in children with CP. CITATION: van Rijssen IM, Hulst RY, Gorter JW, et al. Device-based and subjective measurements of sleep in children with cerebral palsy: a comparison of sleep diary, actigraphy, and bed sensor data. J Clin Sleep Med. 2023;19(1):35-43.

A core outcome set for multimorbidity risk in individuals with cerebral palsy.

AIM: To: (1) investigate the importance of outcome measurement instruments (OMIs) within a core outcome set (COS) for multimorbidity (at least two chronic health conditions) risk in individuals with cerebral palsy (CP); (2) investigate the feasibility of OMIs within the COS in international clinical research settings in adolescents and adults with CP; and (3) describe the associations between the COS data and Gross Motor Function Classification System (GMFCS) levels. METHOD: Eighty-three individuals with CP completed a survey on health outcomes: physical behaviour, nutrition, sleep, endurance, body composition, blood pressure, blood lipids, and glucose. A cross-sectional study assessed the feasibility of the COS in 67 adolescents and adults with CP (mean age 30y, SD 15y 1mo, min-max: 14-68y, 52.2% male) at four centres. Prevalence of multimorbidity risk and associations with GMFCS levels are described. RESULTS: Most participants rated physical behaviour, nutrition, sleep, and endurance as very important. Body composition, blood pressure, nutrition, and sleep were highly feasible since data were collected in 88% or more participants who consented to having the assessments. Physical behaviour, cardiorespiratory endurance, and blood draws were collected in less than 60% of participants. Total time sedentary (ρ=0.53, p<0.01) and endurance (ρ=-0.46, p<0.01) were significantly associated with GMFCS level. INTERPRETATION: The COS identified that most participants had poor sleep quality and endurance, did not have healthy diets, and showed increased sedentary behaviour. Individuals with CP valued these outcomes as most important, suggesting a need to assess these modifiable behaviours in this population. Objective measures of physical behaviour and cardiorespiratory endurance in the COS required additional personnel, time, and participant burden. We recommend that healthcare providers should perform a simpler first screen using questionnaire-based assessments and then focus the use of the remainder of the COS if required for the patient.

UM DESFECHO CENTRAL DEFINIDO PARA RISCO DE MULTIMORBIDADE EM INDIVÍDUOS COM PARALISIA CEREBRAL: OBJETIVO: (1) Investigar a importância dos instrumentos de medição de desfechos (IMD) dentro de um conjunto de desfechos principais (CDS) para risco de multimorbidade (pelo menos duas condições crônicas de saúde) em indivíduos com paralisia cerebral (PC); (2) Investigar a viabilidade de IMD dentro do CDS em cenários internacionais de pesquisa clínica em adolescentes e adultos com PC; e (3) Descrever as associações entre os dados do CDS e os níveis do Sistema de Classificação da Função Motora Grossa (GMFCS). MÉTODO: Oitenta e três indivíduos com PC completaram uma pesquisa sobre desfechos em saúde: comportamento físico, nutrição, sono, resistência, composição corporal, pressão arterial, lipídios no sangue e glicose. Um estudo transversal avaliou a viabilidade do COS em 67 adolescentes e adultos com PC (idade média de 30 anos, desvio padrão de 15 anos e 1 mês, min-max: 14-68 anos, 52,2% do sexo masculino) em quatro centros. São descritas a prevalência do risco de multimorbidade e as associações com os níveis de GMFCS. RESULTADOS: A maioria dos participantes classificou o comportamento físico, nutrição, sono e resistência como muito importantes. Composição corporal, pressão arterial, nutrição e sono foram altamente viáveis, uma vez que os dados foram coletados em 88% ou mais dos participantes que consentiram em realizar as avaliações. Comportamento físico, resistência cardiorrespiratória e coleta de sangue foram coletados em menos de 60% dos participantes. O tempo total de sedentarismo (ρ = 0,53, p < 0,01) e resistência (ρ = −0,46, p < 0,01) foram significativamente associados ao nível de GMFCS. INTERPRETAÇÃO: O CDS identificou que a maioria dos participantes tinha má qualidade e resistência do sono, não tinha dietas saudáveis e apresentava um comportamento sedentário aumentado. Indivíduos com PC valorizaram esses desfechos como mais importantes, sugerindo a necessidade de avaliar esses comportamentos modificáveis nessa população. Medidas objetivas de comportamento físico e resistência cardiorrespiratória no CDS exigiram pessoal adicional, tempo e sobrecarga do participante. Recomendamos que os profissionais de saúde realizem uma primeira triagem mais simples usando avaliações baseadas em questionários e, em seguida, concentrem o uso do restante do CDS, se necessário para o paciente.

Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call.

PURPOSE: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1-8 years) with CP. MATERIALS AND METHODS: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs. RESULTS: In total, sixteen themes were identified across the three domains. Within the families' Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep. CONCLUSIONS: Parents face numerous challenges caring for their child's sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.IMPLICATIONS FOR REHABILITATIONThe heavy burden placed on families by sleep problems in children with cerebral palsy warrants acknowledgement in paediatric healthcare.Sleep should be routinely addressed by clinicians during health assessments using a family-centered, and multidisciplinary approach.Healthcare professionals ought to adopt a proactive, understanding, and non-judgmental attitude when addressing sleep problems.Future research should focus on developing sleep intervention strategies that take into account the diverse parental concerns and needs unique to each family situation.

Reproducibility of the Six-Minute Walk Test in Children and Youth With Juvenile Idiopathic Arthritis.

OBJECTIVE: While the 6-minute walk test is increasingly being used in research to evaluate submaximal exercise capacity of children with juvenile idiopathic arthritis (JIA), psychometric properties with this population have not been well evaluated. We undertook this study to evaluate reproducibility (agreement and test-retest reliability) and to determine standard error of measurement (SEM) and smallest detectable difference (SDD) in children and youth with JIA. METHODS: Participants (n = 22, mean ± SD age 13.1 ± 1.1 years, 63.6% female) completed a 6-minute walk test as part of their routine clinical assessment, and then repeated the 6-minute walk test at mean ± SD 8 ± 1.2 days later, in the same clinical setting with the same rater. RESULTS: The intraclass correlation coefficient (95% confidence interval) was 0.86 (0.66-0.94); the SEM and SDD were 23.5 and 65.1 meters, respectively. CONCLUSION: These results provide evidence of good-excellent reproducibility of the 6-minute walk test with children and youth with JIA and support the use of the 6-minute walk test as a measure of submaximal exercise capacity in clinical practice and research.

The effects of wheelchair mobility skills and exercise training on physical activity, fitness, skills and confidence in youth using a manual wheelchair.

PURPOSE: To evaluate the effects of a combination of wheelchair mobility skills (WMS) training and exercise training on physical activity (PA), WMS, confidence in wheelchair mobility, and physical fitness. METHODS: Youth using a manual wheelchair (n = 60) participated in this practice-based intervention, with a waiting list period (16 weeks), exercise training (8 weeks), WMS training (8 weeks), and follow-up (16 weeks). Repeated measures included: PA (Activ8), WMS (Utrecht Pediatric Wheelchair Mobility Skills Test), confidence in wheelchair mobility (Wheelchair Mobility Confidence Scale), and physical fitness (cardiorespiratory fitness, (an)aerobic performance) and were analysed per outcome parameter using a multilevel model analyses. Differences between the waiting list and training period were determined with an unpaired sample t-test. RESULTS: Multilevel model analysis showed significant positive effects for PA (p = 0.01), WMS (p < 0.001), confidence in wheelchair mobility (p < 0.001), aerobic (p < 0.001), and anaerobic performance (p < 0.001). Unpaired sample t-tests underscored these effects for PA (p < 0.01) and WMS (p < 0.001). There were no effects on cardiorespiratory fitness. The order of training (exercise before WMS) had a significant effect on confidence in wheelchair mobility. CONCLUSIONS: A combination of exercise and WMS training appears to have significant positive long-term effects on PA, WMS, confidence in wheelchair mobility, and (an)aerobic performance in youth using a manual wheelchair.Implications for rehabilitationExercise training and wheelchair mobility skills (WMS) training can lead to a sustained improvement in physical activity (PA) in youth using a manual wheelchair.These combined trainings can also lead to a sustained increase in WMS, confidence in wheelchair mobility, and (an)aerobic performance.More attention is needed in clinical practice and in research towards improving PA in youth using a manual wheelchair.

Reference Values for the Six Minute Walk Test in Children with Juvenile Idiopathic Arthritis.

AIMS: To (1) describe six-minute walk test (6MWT) reference values for children with Juvenile Idiopathic Arthritis (JIA) and (2) explore predictors of 6MWT distance. A secondary objective was to determine how 6MWT distances of children with JIA compare to those of children without JIA reported in the literature. METHODS: Demographic, clinical, height, weight and 6MWT data were extracted from clinical records of 120 children with JIA (70.8% female, mean age=12.4 ± 3.2 years) who attended a follow-up rheumatology clinic. A total of 272 6MWTs were included in the analyses. Linear mixed effects modeling was used to determine the relationship between predictive variables and 6MWT distance. 6MWT distances were compared to predicted values using published equations for estimating 6MWT distances in children without JIA. RESULTS: Height, weight, and age were predictive of 6MWT distance (R2 = 0.62). Mean 6MWT distances for children with JIA were lower than those reported for children without JIA (p < 0.001). Mean 6MWT distance was 84% and 78% of predicted values for children without JIA. CONCLUSION: The reference values and associated predictive model have application for assessing exercise capacity in children with JIA.

Physical rehabilitation interventions in children with acquired brain injury: a scoping review.

AIM: To synthesize the evidence about the characteristics (frequency, intensity, time, type) and effects of physical rehabilitation interventions on functional recovery and performance in daily functioning in children and young people with acquired brain injury (ABI), including traumatic brain injuries (TBI) and non-TBI, during the subacute rehabilitation phase. METHOD: Using scoping review methodology, a systematic literature search was performed using four databases. Articles were screened by title and abstract and data from eligible studies were extracted for synthesis. RESULTS: Nine of 3009 studies were included. The results demonstrated a variety of intervention characteristics: frequency varied between 1 and 7 days per week; time of intervention varied between 25 minutes and 6 hours a day; intervention types were specified in seven studies; and none of the included studies reported details of intensity of intervention. All studies reported positive results on the International Classification of Functioning, Disability and Health: Children and Youth (ICF-CY) levels of body function and activities after the intervention period, with study designs of included studies being cohort studies without concurrent controls (n=7) or case reports (n=2). INTERPRETATION: Inconsistency in results hampers generalizability to guide clinical practice. Physical interventions during subacute rehabilitation have potential to improve functional recovery with intervention characteristics as an important factor influencing its effectiveness. Future well-designed studies are indicated to gain knowledge and optimize rehabilitation practice in paediatric ABI and high-quality research including outcomes across all ICF-CY domains is needed.

Operationalization, measurement, and health indicators of sedentary behavior in individuals with cerebral palsy: a scoping review.

PURPOSE: To explore the operationalization and measurement of sedentary behavior (SB) in individuals with cerebral palsy (CP). MATERIALS AND METHODS: We searched five databases from 2011 to 2020 for primary studies of experimental, qualitative, longitudinal, or observational designs measuring SB or postures typically characterized as sedentary (sitting, reclining, lying). RESULTS: We screened 1112 citations and selected 47 studies. SB was operationalized through muscle activation, energy expenditure or oxygen consumption in typically sedentary postures (n = 9), and through thresholds and postures used by accelerometers, activity monitors, and a questionnaire to measure time spent in SB (n = 25). Seven out of the eight studies that measured energy expenditure found ≤1.5 metabolic equivalents of task (METs) for sitting and lying. While different accelerometer thresholds were used to measure SB, the behavior (SB) was consistently operationalized as sitting and lying. Little consistency existed in the subpopulation, instruments and cut-points for studies on validity or reliability of tools for measuring SB (n = 19). CONCLUSIONS: Sitting and lying are considered sedentary postures, which is defined as ≤1.5 METs in individuals with CP. There is variability in the tools used to measure SB in individuals with CP. Therefore, consensus on the definition and reporting of SB is needed.Implications for rehabilitationAlthough sedentary behavior (SB) is increased in individuals with cerebral palsy (CP) compared to the typically developing population, there is no standard definition for SB for these individuals; this makes it difficult to synthesize data across studies.Sitting and lying are ≤1.5 METs in individuals with CP, suggesting we only need to measure posture to show change in SB.The commonly used accelerometer cut-point in the typically developing population of ≤100 counts per minute generally has excellent reliability across multiple devices in ambulatory children with CP.

Interventions for reducing sedentary behaviour in people with stroke.

BACKGROUND: Stroke survivors are often physically inactive as well as sedentary,and may sit for long periods of time each day. This increases cardiometabolic risk and has impacts on physical and other functions. Interventions to reduce or interrupt periods of sedentary time, as well as to increase physical activity after stroke, could reduce the risk of secondary cardiovascular events and mortality during life after stroke. OBJECTIVES: To determine whether interventions designed to reduce sedentary behaviour after stroke, or interventions with the potential to do so, can reduce the risk of death or secondary vascular events, modify cardiovascular risk, and reduce sedentary behaviour. SEARCH METHODS: In December 2019, we searched the Cochrane Stroke Trials Register, CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO, Conference Proceedings Citation Index, and PEDro. We also searched registers of ongoing trials, screened reference lists, and contacted experts in the field. SELECTION CRITERIA: Randomised trials comparing interventions to reduce sedentary time with usual care, no intervention, or waiting-list control, attention control, sham intervention or adjunct intervention. We also included interventions intended to fragment or interrupt periods of sedentary behaviour. DATA COLLECTION AND ANALYSIS: Two review authors independently selected studies and performed 'Risk of bias' assessments. We analyzed data using random-effects meta-analyses and assessed the certainty of the evidence with the GRADE approach. MAIN RESULTS: We included 10 studies with 753 people with stroke. Five studies used physical activity interventions, four studies used a multicomponent lifestyle intervention, and one study used an intervention to reduce and interrupt sedentary behaviour. In all studies, the risk of bias was high or unclear in two or more domains. Nine studies had high risk of bias in at least one domain. The interventions did not increase or reduce deaths (risk difference (RD) 0.00, 95% confidence interval (CI) -0.02 to 0.03; 10 studies, 753 participants; low-certainty evidence), the incidence of recurrent cardiovascular or cerebrovascular events (RD -0.01, 95% CI -0.04 to 0.01; 10 studies, 753 participants; low-certainty evidence), the incidence of falls (and injuries) (RD 0.00, 95% CI -0.02 to 0.02; 10 studies, 753 participants; low-certainty evidence), or incidence of other adverse events (moderate-certainty evidence). Interventions did not increase or reduce the amount of sedentary behaviour time (mean difference (MD) +0.13 hours/day, 95% CI -0.42 to 0.68; 7 studies, 300 participants; very low-certainty evidence). There were too few data to examine effects on patterns of sedentary behaviour. The effect of interventions on cardiometabolic risk factors allowed very limited meta-analysis. AUTHORS' CONCLUSIONS: Sedentary behaviour research in stroke seems important, yet the evidence is currently incomplete, and we found no evidence for beneficial effects. Current World Health Organization (WHO) guidelines recommend reducing the amount of sedentary time in people with disabilities, in general. The evidence is currently not strong enough to guide practice on how best to reduce sedentariness specifically in people with stroke. More high-quality randomised trials are needed, particularly involving participants with mobility limitations. Trials should include longer-term interventions specifically targeted at reducing time spent sedentary, risk factor outcomes, objective measures of sedentary behaviour (and physical activity), and long-term follow-up.

Blood pressure in adults with cerebral palsy: a systematic review and meta-analysis of individual participant data.

OBJECTIVES: This systematic review and meta-analysis was designed to determine the overall mean blood pressure and prevalence of hypertension among a representative sample of adults living with cerebral palsy by combining individual participant data. Additional objectives included estimating variations between subgroups and investigating potential risk factors for hypertension. METHODS: Potential datasets were identified by literature searches for studies published between January 2000 and November 2017 and by experts in the field. Samples of adults with cerebral palsy (n ≥ 10, age ≥ 18 years) were included if blood pressure data, cerebral palsy-related factors (e.g. cerebral palsy subtype), and sociodemographic variables (e.g. age, sex) were available. Hypertension was defined as at least 140/90 mmHg and/or use of antihypertensive medication. RESULTS: We included data from 11 international cohorts representing 444 adults with cerebral palsy [median (IQR) age of the sample was 29.0 (23.0-38.0); 51% men; 89% spastic type; Gross Motor Function Classification System levels I-V]. Overall mean SBP was 124.9 mmHg [95% confidence interval (CI) 121.7-128.1] and overall mean DBP was 79.9 mmHg (95% CI 77.2-82.5). Overall prevalence of hypertension was 28.7% (95% CI 18.8-39.8%). Subgroup analysis indicated higher blood pressure levels or higher prevalence of hypertension in adults with cerebral palsy above 40 years of age, men, those with spastic cerebral palsy or those who lived in Africa. BMI, resting heart rate and alcohol consumption were risk factors that were associated with blood pressure or hypertension. CONCLUSION: Our findings underscore the importance of clinical screening for blood pressure in individuals with cerebral palsy beginning in young adulthood.

Sleep problems in children with cerebral palsy and their parents.

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 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.