24-hour activity for children with cerebral palsy: a clinical practice guide

The association between physical activity and health has been clearly established, and the promotion of physical activity should be viewed as a cost-effective approach that is universally prescribed as a first-line treatment for nearly every chronic disease. Health care providers involved in the care for individuals with cerebral palsy (CP) are encouraged to take an active role in promoting their health and well-being. Balancing activity behaviours across the whole day, with improved physical activity, reduced sedentary time, and healthy sleep behaviours, can set up infants, preschool-, and school-aged children with CP for a healthy trajectory across their lifetime. However, most clinicians do not apply a systematic surveillance, assessment, and management approach to detect problems with physical activity or sleep in children with CP. Consequently, many children with CP miss out on an important first line of treatment. This article presents an evidence-informed clinical practice guide with practical pointers to help practitioners in detecting 24-hour activity problems as a critical step towards adoption of healthy lifestyle behaviours for children with CP that provide long-term health benefits

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

Protocol of the SOMNIA project : an observational study to create a neurophysiological database for advanced clinical sleep monitoring

Introduction Polysomnography (PSG) is the primary tool for sleep monitoring and the diagnosis of sleep disorders. Recent advances in signal analysis make it possible to reveal more information from this rich data source. Furthermore, many innovative sleep monitoring techniques are being developed that are less obtrusive, easier to use over long time periods and in the home situation. Here, we describe the methods of the Sleep and Obstructive Sleep Apnoea Monitoring with Non-Invasive Applications (SOMNIA) project, yielding a database combining clinical PSG with advanced unobtrusive sleep monitoring modalities in a large cohort of patients with various sleep disorders. The SOMNIA database will facilitate the validation and assessment of the diagnostic value of the new techniques, as well as the development of additional indices and biomarkers derived from new and/or traditional sleep monitoring methods. Methods and analysis We aim to include at least 2100 subjects (both adults and children) with a variety of sleep disorders who undergo a PSG as part of standard clinical care in a dedicated sleep centre. Full-video PSG will be performed according to the standards of the American Academy of Sleep Medicine. Each recording will be supplemented with one or more new monitoring systems, including wrist-worn photoplethysmography and actigraphy, pressure sensing mattresses, multimicrophone recording of respiratory sounds including snoring, suprasternal pressure monitoring and multielectrode electromyography of the diaphragm

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

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

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

The short and long-term effects of a lifestyle intervention in children with mental illnesses: a randomized controlled trial (Movementss study)

BACKGROUND: A lifestyle including poor diet, physical inactivity, excessive gaming and inadequate sleep hygiene is frequently seen among Dutch children. These lifestyle behaviors can cause long-term health problems later in life. Unhealthy lifestyle and poor physical health are even more prevalent among children with mental illness (MI) such as autism, attention-deficit/hyperactivity disorder, depression, and anxiety. However, research on lifestyle interventions among children with MI is lacking. As a result, there are currently no guidelines, or treatment programs where children with MI and poor lifestyle can receive effective support. To address these issues and to provide insight into the effectiveness of lifestyle interventions in children with MI and their families, the Movementss study was designed. This paper describes the rationale, study design, and methods of an ongoing randomized controlled trial (RCT) comparing the short-term (12 weeks) and long-term (1 year) effects of a lifestyle intervention with care as usual (CAU) in children with MI and an unhealthy lifestyle. METHODS: A total of 80 children (6-12 years) with MI according to DSM-V and an unhealthy lifestyle are randomized to the lifestyle intervention group or CAU at a specialized child and adolescent mental hospital. The primary outcome measure is quality of life measured with the KIDSCREEN. Secondary outcomes include emotional and behavior symptoms, lifestyle parameters regarding diet, physical activity, sleep, and screen time, cognitive assessment (intelligence and executive functions), physical measurements (e.g., BMI), parenting styles, and family functioning, prior beliefs, adherence, satisfaction, and cost-effectiveness. Assessments will take place at the start of the study (T0), after 12 weeks (T1), six months (T2), and 12 months of baseline (T3) to measure long-term effects. DISCUSSION: This RCT will likely contribute to the currently lacking knowledge on lifestyle interventions in children with MI. TRIAL REGISTRATION: trialsearch.who.int/ NL9822. Registered at November 2 nd, 2021

Incidence of neuralgic amyotrophy (parsonage turner syndrome) in a primary care setting - A prospective cohort study

Objective Neuralgic amyotrophy is considered a rare peripheral nervous system disorder but in practice seems grossly under recognized, which negatively affects care for these patients. In this study we prospectively counted the one-year incidence rate of classic neuralgic amyotrophy in a primary care setting. Methods In a prospective cohort study during the year 2012 we registered all new cases of neck, shoulder or arm complaints from two large primary care centers serving a population of 14,118. Prior to study, general practitioners received a short training on how to diagnose classic neuralgic amyotrophy. Neuralgic amyotrophy was defined according to published criteria irrespective of family history. Only patients with a classic phenotype were counted as definite cases. After inclusion, patients with suspected neuralgic amyotrophy who had not yet seen a neurologist were offered neurologic evaluation for diagnostic confirmation. Results Of the 492 patients identified with new onset neck, shoulder or arm complaints, 34 were suspected of having neuralgic amyotrophy. After neurologic evaluation the diagnosis was confirmed in 14 patients. This amounts to a one-year incidence rate for classic neuralgic amyotrophy of 1 per 1000. Conclusions Our findings suggest that neuralgic amyotrophy is 30-50 times more common than previously thought. Unawareness of the disorder and its clinical presentation seems the most likely explanation for this difference. An incidence rate of 1 per 1000 and the long-term sequelae many patients suffer warrant more vigilance in diagnosing the disorder, to pave the way for timely treatment and prevent complications