Pharmacological and neurosurgical management of cerebral palsy and dystonia: Clinical practice guideline update.

Dystonia, typically characterized by slow repetitive involuntary movements, stiff abnormal postures, and hypertonia, is common among individuals with cerebral palsy (CP). Dystonia can interfere with activities and have considerable impact on motor function, pain/comfort, and ease of caregiving. Although pharmacological and neurosurgical approaches are used clinically in individuals with CP and dystonia that is causing interference, evidence to support these options is limited. This clinical practice guideline update comprises 10 evidence-based recommendations on the use of pharmacological and neurosurgical interventions for individuals with CP and dystonia causing interference, developed by an international expert panel following the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) approach. The recommendations are intended to help inform clinicians in their use of these management options for individuals with CP and dystonia, and to guide a shared decision-making process in selecting a management approach that is aligned with the individual's and the family's values and preferences.

Chronic pain interference assessment tools for children and adults who are unable to self-report: A systematic review of psychometric properties.

AIM: To identify and evaluate psychometric properties of assessment tools for assessing pain interference in children, adolescents, and adults with chronic pain and the inability to self-report. METHOD: The protocol was registered with PROSPERO (CRD42022310102). A search was run in MEDLINE, Embase, and PsycInfo (29th March 2022) to identify articles reporting psychometric properties of pain interference assessment tools for children, adolescents, and adults with chronic pain and the inability to objectively self-report pain. Retrieved studies were reviewed by two authors (MGS, LCF) and study quality was assessed using COSMIN. RESULTS: Psychometric properties of 10 pain interference tools were assessed from 33 studies. The Paediatric Pain Profile (PPP) had low-quality evidence for content validity and internal consistency with children and adolescents who are unable to self-report. No tools for adults had evidence for content validity and internal consistency. No tool had evidence for all nine psychometric properties. INTERPRETATION: The PPP is recommended for pain interference assessment in children and adolescents with chronic pain and the inability to self-report. Few tools are available for adults. Three tools for children (Patient-Reported Outcome Measurement Information System Pediatric Proxy Pain Interference Scale; Bath Adolescent Pain Questionnaire for Parents; modified Brief Pain Inventory-Proxy [mBPI]) and three tools for adults (Doloplus-2; Patient-Reported Outcome Measurement Information System Pain Interference Scale-proxy; Brief Pain Inventory-proxy) are promising but require further investigation.

Physiotherapy via telehealth for acute respiratory exacerbations in paediatric cystic fibrosis.

INTRODUCTION: The demand for Hospital in the Home has increased, especially as an avenue for treatment of respiratory exacerbations. However, a limiting factor of Hospital in the Home efficiency is excess travel. Telehealth can potentially increase in-home access to specialist care such as physiotherapy. This study examined clinical outcomes achieved with a hybrid telehealth model and assessed safety and efficiency. METHOD: This study was an observational benchmarking study of Hospital in the Home physiotherapy episodes of care during respiratory exacerbations between January 2017-June 2019. The participants were young people aged 8-18 years, with cystic fibrosis receiving intravenous antibiotics and bi-daily physiotherapy. The intervention was physiotherapy via either a hybrid model (1× telehealth, 1× face-to-face session) or standard care (2× face-to-face sessions). The outcomes were frequency of return to at least 95% of baseline percentage predicted forced expiratory volume in the first second (ppFEV1), ppFEV1 change, adverse events, travel time and distance saved. RESULTS: There were 82 episodes of Hospital in the Home; 41 hybrid and 41 standard care. Return to at least 95% of baseline was achieved in 49% of the hybrid group and 32% of standard care. Median ppFEV1 change was +6% for the hybrid group and +2% standard care. There were no adverse events. Estimated travel time and distance saved was 16,520 min and 12,301.2 km. CONCLUSION: Preliminary information supports a hybrid telehealth physiotherapy model as an alternative to standard care for young people with cystic fibrosis during an exacerbation. Safety of telehealth in conjunction with home visits favoured its use to improve efficiency and capacity without added risk.

Development of a Clinical Framework for the Assessment of Dyskinesia and Function in the Upper Limb in Children with Cerebral Palsy.

OBJECTIVE: Dyskinesia in cerebral palsy (CP) is a complex movement disorder that can significantly impact upper limb function. Despite a range of available tools, there is no consensus on best practice assessment of upper limb function in children with CP and dyskinesia. This study aimed to develop a clinical framework for the assessment of the impact of dyskinesia on upper limb function in children with CP. DESIGN: Modified Delphi study using expert consensus. METHODS: An expert panel of six highly experienced Australian therapists ranked assessment tools sourced from existing evidence-based literature using a five-point Likert scale. Tools rated as important for use "most" or "all" of the time, by 80% of respondents were accepted into the framework following two survey rounds and a third stage discussion. RESULTS: Of 21 tools, 12 were included in the framework under five categories: (i) screening for dyskinesia; (ii) measuring the severity of dyskinesia; (iii) Classifying upper limb functional ability; (iv) measuring upper limb functional ability; and (v) measuring upper limb movement. CONCLUSIONS: The framework for assessing the impact of dyskinesia on upper limb function in CP aims to guide clinicians to improve assessment consistency and facilitate individualized goal-directed management. Further studies with a larger number of expert clinicians and researchers will further strengthen the utility of the framework.

Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties.

AIM: To systematically identify and evaluate the measurement properties of patient-reported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0-24 years) with a neurodevelopmental disability. METHOD: A two-stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted. Search 1 in August 2021 identified pain coping tools used in neurodevelopmental disability and search 2 in September 2021 located additional studies evaluating the measurement properties of these tools. Methodological quality was assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) guidelines (PROSPERO protocol registration no. CRD42021273031). RESULTS: Sixteen studies identified seven pain coping tools, all PROMs and observer-reported outcome measures (parent proxy report) versions. The measurement properties of the seven tools were appraised in 44 studies. No tool had high-quality evidence for any measurement property or evidence for all nine measurement properties as outlined by COSMIN. Only one tool had content validity for individuals with neurodevelopmental disability: the Cerebral Palsy Quality of Life tool. INTERPRETATION: Pain coping assessment tools with self-report and parent proxy versions are available; however, measurement invariance has not been tested in young adults with a neurodevelopmental disability. This is an area for future research.

Perioperative Care of Children with Severe Neurological Impairment and Neuromuscular Scoliosis-A Practical Pathway to Optimize Peri-Operative Health and Guide Decision Making.

Neuromuscular scoliosis is a common feature in children with severe neurological impairment (SNI), including those with severe cerebral palsy. Surgical correction of scoliosis is the mainstay of treatment. This group of patients also have associated medical complexity. The complication rates post-surgery are high, although, for many, they are worth the risk. There are currently no published practice guidelines or care pathways for children with SNI who are undergoing scoliosis corrective surgery. In response to the high uptake of this surgery, coupled with the expected complication rates, our hospital established a perioperative clinic. The purpose of this paper is to describe our perioperative approach. This clinic has developed into a service beyond perioperative care and, with the collaborative meeting, enables shared decision-making to identify the right candidate for surgery. The process involves surgical expertise, understanding the family and child at the centre, and optimisation of medical care pre- and post-surgery. In this paper, we describe the process in a step-by-step manner. We provide clinical vignettes, as well as the proformas that we use, and we highlight the benefits of the team-based process.

Task-specific training for bicycle-riding goals in ambulant children with cerebral palsy: a randomized controlled trial.

AIM: To determine whether a task-specific physiotherapist-led training approach is more effective than a non-specific parent-led home programme for attaining bicycle-riding goals in ambulant children with cerebral palsy (CP). METHOD: Sixty-two ambulant children with CP aged 6 to 15 years (33 males, 29 females, mean age 9y 6mo) with bicycle-riding goals participated in this multi-centre, assessor-blind, parallel-group, superiority randomized controlled trial. Children in the task-specific group participated in a physiotherapist-led, group-based, intensive training programme. Children in the parent-led home group were provided with a practice schedule, generic written information, and telephone support. Both programmes involved a 1-week training period. The primary outcome was goal attainment at 1 week after training measured using the Goal Attainment Scale. Secondary outcomes included bicycle skills, participation in bicycle riding, functional skills, self-perception, physical activity, and health-related quality of life at 1 week and 3 months after training. RESULTS: Children in the task-specific training group had greater odds of goal attainment than those in the parent-led home programme at 1 week after intervention (odds ratio [OR] 10.4, 95% confidence interval [CI] 2.8-38.6), with evidence for superiority retained at 3 months (OR 4.0, 95% CI 1.3-12.5). INTERPRETATION: The task-specific physiotherapist-led training approach was more effective for attaining bicycle-riding goals than a non-specific parent-led home programme in ambulant children with CP.

Caregiver perspectives of managing chronic pain in children and adolescents with dyskinetic and mixed dyskinetic/spastic CP with communication limitations.

PURPOSE: Caregivers provide unique insights into managing chronic pain in children and adolescents with dyskinetic and mixed dyskinetic/spastic cerebral palsy with communication limitations. This study explored the personal challenges caregivers face in supporting their child's everyday pain management, including barriers and facilitators to effective chronic pain management. METHODS: Semi-structured interviews were undertaken with ten caregivers (all mothers) of children with either dyskinetic or mixed dyskinetic/spastic cerebral palsy. All children had chronic pain (> 3 months), were aged from 5 to 15 years, had significant functional limitations, and had either limited or no capacity to self-report their pain. Interpretative phenomenological analysis was used to explore caregivers' subjective experiences of managing their child's chronic pain within family, school, and healthcare contexts. RESULTS: Five superordinate themes emerged: 1. the continual challenge of problem solving pain and dyskinesia; 2. the pursuit of a solution; 3. unfulfilled preferences within pain management; 4. all-encompassing effects on families; and 5. the ongoing impacts of pain and dyskinesia with age. CONCLUSION: There is a need for structured pain education and resources targeted towards caregivers and support workers that account for the complex overlay of dyskinesia. There is a further need to ensure caregiver preferences for non-pharmacological pain treatments are met within family-centred care models.

Establishing consensus for the assessment of chronic pain in children and young people with cerebral palsy: a Delphi study.

PURPOSE: Inconsistent and inadequate pain assessment practices in cerebral palsy (CP) have resulted from a lack of standardisation of pain assessment, limited use of appropriate tools and failure to integrate disability and biopsychosocial models. To assist with improving consistency, this study aimed to establish consensus from key stakeholders regarding domains considered essential for measuring chronic pain in children and young people with CP. METHOD: A modified electronic Delphi study was conducted on 83 stakeholders, including clinicians, researchers, people with CP and parents of children with CP. Participants rated 18 domains sourced from existing literature as either "core", "recommended", "exploratory" or "not required". RESULTS: After two rounds of surveys, 12 domains were considered core: pain location, pain frequency, pain intensity, changeable factors, impact on emotional wellbeing, impact on participation, pain communication, influence on quality of life, physical impacts, sleep, pain duration and pain expression. CONCLUSION: These domains reflect the complexity of pain in a heterogeneous population where medical comorbidities are common and communication and intellectual limitations impact significantly on the ability of many to self-report. The domains will be utilised to build a framework of pain assessment specific to children and young people with CP guided by the biopsychosocial model.Implications for rehabilitationChronic pain is under-identified and poorly assessed in the cerebral palsy (CP) population.The perspectives of clinicians, researchers and consumers are vital for developing a framework for chronic pain assessment in CP.Consensus of key stakeholders found 12 domains considered essential to incorporate into a chronic pain assessment model in CP.

Barriers and Facilitators to Seeking Sleep Solutions for Children With Cerebral Palsy: A Qualitative Study.

Background: Published evidence to date suggests that sleep problems are common in children with cerebral palsy (CP). This qualitative study is a follow up to a previously published quantitative phase on the experience and impact of sleep problems in this population. Aims: The aim of this study was to explore the experience and impact of sleep disturbance and seeking of sleep solutions for parents of school aged children with CP. Materials and Methods: Semi-structured 19 qualitative interviews were conducted with parents of children with CP aged 6-12 years. Interview data were transcribed verbatim and the thematic analysis techniques by Braun and Clarke was used to identify themes. Results: Thematic analysis identified 7 themes: (1) My Child Doesn't Fit into the Box, (2) A Mother's Ears are Always On, (3) Sleep Disturbance is like Water Torture, (4) Sleep is One of Many Spot Fires, I Put it on the Backburner, (5) Luck, Money or Jumping Up and Down, (6) There is Never One Silver Bullet and (7) Help: The Earlier the Better. The key finding was that parents of children with CP often described their child's needs being distinct from what is provided by systems and services. Conclusion: Parents face significant challenges sourcing effective sleep solutions for their child with CP. Sleep is often not a priority for either the parent or the clinician as other health problems take precedence. Parents reflected that early sleep intervention for their child was or would have been helpful. The barriers and facilitators to sleep care identified in this study should be used to inform clinical change in care for children with CP. Sleep needs to be prioritized in healthcare for children.

A pilot feasibility study of gabapentin for managing pain in children with dystonic cerebral palsy.

BACKGROUND: Gabapentin is often used to manage pain in children with dystonic cerebral palsy, however the evidence for its effectiveness in this population is limited. The primary objective of this feasibility pilot study was to assess the factors which might impact on a future randomised controlled trial including the ability to recruit and retain participants, assess adherence/compliance to the prescribed intervention, and ability to complete all outcome assessments. The secondary objective was to gather preliminary evidence for the effectiveness of gabapentin at reducing pain, improving comfort and reducing dystonia in children with dystonic cerebral palsy. METHODS: This open label pilot study recruited children aged 5-18 years with dystonic cerebral palsy and accompanying pain affecting daily activities from four centres around Australia. Children were prescribed gabapentin for 12 weeks and were assessed at baseline, 6 weeks and 12 weeks. The primary outcome was feasibility of the protocol. Secondary outcomes were pain behaviour, pain intensity, care and comfort, individualised goal setting and dystonia severity. RESULTS: Thirteen children (mean age 10.4 years (SD 2.4yrs), 9 females) were recruited from 71 screened over 15 months. Two children withdrew while eight children experienced side effects. There were issues with adherence to medication dosage regimens and data collection. Improvements were seen in pain behaviour, comfort and pain related goals at 12 weeks. Dystonia was not significantly changed. CONCLUSIONS: Whilst gabapentin has potential to improve pain and comfort in children with dystonic CP, the feasibility of implementing a definitive randomised controlled trial is low. Alternative trials designs are required to further examine the effectiveness of gabapentin in this heterogeneous population. TRIAL REGISTRATION: The trial was registered with the Australian Clinical Trial Registry ( ACTRN12616000366459 ) on 22/03/2016 and the Therapeutic Goods Administration (CT-2016-CTN-00500-1) on 22/06/2016.

The Dyskinetic Cerebral Palsy Functional Impact Scale: development and validation of a new tool.

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

National surveillance of oral medication prescription for children with dystonic cerebral palsy.

AIM: Oral medications are often first-line medical management for children with cerebral palsy who have generalised dystonia; however, evidence for their effectiveness is limited and dosing practices are inconsistent. As a first step to improve consistency, this study aimed to examine current clinical practice of expert doctors for prescribing medications for children with dystonic cerebral palsy including prescribing patterns and combinations of medications used. METHODS: This was a prospective surveillance study of medical doctors working in major Australian centres who manage children with cerebral palsy. Each week over a continuous 6-month period, doctors completed a custom developed online survey for children seen that week with dystonic cerebral palsy for whom they prescribed a new medication to treat dystonia. RESULTS: Twenty-five doctors consented to participate, 16 of whom prescribed new medications for dystonia in children with cerebral palsy over the study period. There were 77 children who were prescribed new medications. Baclofen and gabapentin were prescribed most, followed by levodopa, trihexyphenidyl and diazepam. The most common combinations of medications were baclofen and diazepam or baclofen and gabapentin. Dosage regimens were variable, particularly for trihexyphenidyl and diazepam. CONCLUSION: Inconsistencies in dosing regimens remain for oral medication prescription by Australian doctors when managing dystonia in cerebral palsy. Future studies using the consensus of expert clinicians will be conducted to develop guidelines in an area where the evidence for individual medications is extremely limited.

Clinician Perspectives of Chronic Pain Management in Children and Adolescents with Cerebral Palsy and Dyskinesia.

AIMS: To explore perspectives of clinicians from interdisciplinary teams on the barriers and facilitators to chronic pain management for children and adolescents with cerebral palsy and dyskinesia. METHODS: Interdisciplinary focus groups (n = 2) were conducted at two Australian tertiary pediatric hospitals. Twenty-five experienced clinicians took part, including ten physiotherapists, six pediatricians, four rehabilitation physicians, four occupational therapists, and one speech and language therapist. An external moderator conducted the focus groups and data were analyzed using inductive thematic analysis. RESULTS: Four key themes emerged: "balancing the intersection of pain and dyskinesia," "difficulty communicating between so many providers," "uncertainty surrounding chronic pain education," and "differing priorities." Key barriers were identified including a lack of access to some interdisciplinary team members and formalized guidance for health professionals regarding chronic pain education. CONCLUSION: Key issues were reported to impact the delivery of coordinated inter-disciplinary chronic pain management at the tertiary level for children and adolescents with cerebral palsy and dyskinesia. In the absence of strong evidence, a strategy for implementing effective chronic pain management for children and adolescents with cerebral palsy and dyskinesia and gaining clinician consensus regarding the best practice management are recommended.

Pain in children with dyskinetic and mixed dyskinetic/spastic cerebral palsy.

AIM: To evaluate pain prevalence and characteristics in children and adolescents with predominant dyskinetic and mixed (dyskinetic/spastic) cerebral palsy (CP) motor types. METHOD: Seventy-five participants with a diagnosis of CP and confirmed dyskinetic or mixed (dyskinetic/spastic) motor type took part in a multisite cross-sectional study. The primary outcome was carer-reported pain prevalence (preceding 2wks) measured using the Health Utilities Index-3. Secondary outcomes were chronicity, intensity, body locations, quality of life, and activity impact. RESULTS: Mean participant age was 10 years 11 months (SD 4y 2mo, range 5-18y). There were 44 males and 31 females and 37 (49%) had predominant dyskinetic CP. Pain was prevalent in 85% and it was chronic in 77% of participants. Fifty-two per cent experienced moderate-to-high carer-reported pain intensity, which was significantly associated with predominant dyskinetic motor types (p=0.008). Pain occurred at multiple body locations (5 out of 21), with significantly increased numbers of locations at higher Gross Motor Function Classification System levels (p=0.02). Face, jaw, and temple pain was significantly associated with predominant dyskinetic motor types (p=0.005). Poorer carer proxy-reported quality of life was detected in those with chronic pain compared to those without (p=0.03); however, chronic pain did not affect quality of life for self-reporting participants. INTERPRETATION: Pain was highly prevalent in children and adolescents with predominant dyskinetic and mixed (dyskinetic/spastic) motor types, highlighting a population in need of lifespan pain management. WHAT THIS PAPER ADDS: Chronic pain prevalence in children and adolescents with predominant dyskinetic and mixed (dyskinetic/spastic) motor types is high. Pain occurs across multiple body locations in predominant dyskinetic and mixed (dyskinetic/spastic) motor types. Less recognized locations of pain include the face, jaw, and temple for predominant dyskinetic motor types.

Anxiety in children and adolescents with cerebral palsy.

AIMS: To describe the prevalence of, and factors associated with, anxiety in 6-18-year-old children with cerebral palsy (CP) and determine how often clinicians screen for and manage anxiety in this group. METHODS: Using a population CP register as the sampling pool, 569 families were approached by email, and 172 (mean age of children 12 years 7 months [SD 3 years 5 months]; 96 males) participated. Parents and, where able, children completed the Screen for Child Anxiety Related Emotional Disorders (SCARED). Parents also completed the Strengths and Difficulties Questionnaire. Children's medical records were searched for previous anxiety diagnoses and treatments. RESULTS: Clinically significant anxiety was identified in 38% of children on parent reports and 46% on child reports. Girls were twice as likely to have anxiety (p = 0.02). Parent- and child-reported scores were strongly correlated (r = 0.853). Fewer parents of children with intellectual and communication impairments completed the survey. Based on the SCARED parent reports, anxiety was not identified by a clinician in 16 children (43%) with clinically significant anxiety. CONCLUSION: Anxiety symptoms are prominent among children with CP, indicating a need for routine screening. Available screening tools are unsuitable for children with more severe limitations in cognition and communication; further research is needed to address this gap.

The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.

BACKGROUND: To explore the lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy. METHODS: A convergent parallel mixed methods design was undertaken. First, a quantitative cross-sectional study of participants able to self-report their quality of life was undertaken. This study characterised pain chronicity, intensity, body locations, and quality of life. Second, semi-structured interviews were undertaken with a subset of children and adolescents experiencing chronic pain. RESULTS: Twenty-five children and adolescents took part in the cross-sectional study, 23 of whom experienced chronic pain and 13 of moderate intensity. Pain was often located in multiple bodily regions (6/21), with no trends in quality of life outcomes detected. Eight participated in semi-structured interviews, which identified three key themes including 'lives embedded with dyskinesia', 'real world challenges of chronic pain', and 'still learning strategies to manage their pain and dyskinesia'. CONCLUSIONS: A high proportion of children and adolescents with cerebral palsy and dyskinesia who were able to self-report experienced chronic pain. The physical and emotional impacts of living with chronic pain and dyskinesia existed along a spectrum, from those with lesser to greater extent of their impacts. Children and adolescents may benefit from targeted chronic pain education and management within bio-psychosocial models.

Sleep problems and solution seeking for children with cerebral palsy and their parents.

AIM: Sleep problems are common in school-aged children with cerebral palsy (CP). Despite the significant impact of sleep disturbance and deprivation, there is a paucity of research in the area. The aims of this study were to (i) investigate the frequency of sleep problems in children with CP and their parents and (ii) understand what happens when parents ask for help with sleep problems from their health-care professionals. METHODS: This was a prospective cohort study using an online survey sent to parents/primary care givers of children with CP aged 6-12 years recruited through the Victorian Cerebral Palsy Register. The following sleep assessment tools: The Children's Sleep Habits Questionnaire, the Pittsburgh Sleep Quality Index and the Gross Motor Function Classification System Parent Rating Tool were administered along with custom-designed questions that were informed by a preceding qualitative scoping study. RESULTS: Complete data sets were received from 126 parents/care givers. Almost half (46%) of the parents reported their child had sleep problems. Of the 64 parents who reported seeking help for a child's sleep problem, only 21 indicated that their attempt was successful. If a child had poor sleep, the parent was more likely to have a sleep problem than parents who did not report poor child sleeping. CONCLUSION: Sleep problems are common in children with CP and their parents. Parents do not always seek help, and those who do may not find an effective solution. Future research should explore how sleep problems can be effectively prioritised for children with CP and their parents/care givers.

Brain magnetic resonance imaging is a predictor of bimanual performance and executive function in children with unilateral cerebral palsy.

AIM: To examine the association between brain magnetic resonance imaging (MRI) characteristics and executive function and bimanual performance in children with unilateral cerebral palsy (CP). METHOD: Clinical MRI brain scans were classified as: (1) predominant pathological pattern (normal, white matter injury [WMI]; grey matter injury; focal vascular insults [FVI]; malformations; or miscellaneous); and (2) focal lesions (frontal, basal ganglia, and/or thalamus). Assessments included: (1) bimanual performance; (2) unimanual dexterity; and (3) executive function tasks (information processing, attention control, cognitive flexibility, and goal setting) and behavioural ratings (parent). RESULTS: From 131 recruited children, 60 were ineligible for analysis, leaving 71 children (47 males, 24 females) in the final sample (mean age 9y [SD 2y], 6y-12y 8mo). Brain MRIs were WMI (69%) and FVI (31%); and frontal (59%), thalamic (45%), basal ganglia (37%), and basal ganglia plus thalamic (21%). Bimanual performance was lower in FVI versus WMI (p<0.003), and with frontal (p=0.36), basal ganglia (p=0.032), and thalamic/basal ganglia lesions (p=0.013). Other than information processing, executive function tasks were not associated with predominant pattern. Frontal lesions predicted attention control (p=0.049) and cognitive flexibility (p=0.009) but not goal setting, information processing, or behavioural ratings. INTERPRETATION: Clinical brain MRI predicts cognitive and motor outcomes when focal lesions and predominate lesion patterns are considered. What this paper adds Early brain magnetic resonance imaging (MRI) predicts bimanual performance and cognitive outcomes. Brain MRI may identify children requiring targeted interventions. Basal ganglia with/without thalamic lesions predicted bimanual performance. Frontal lesions were associated with attention control and cognitive flexibility. Brain MRI predominant patterns predicted motor, not cognitive outcomes, other than information processing.

La resonancia magnética cerebral es un predictor del rendimiento bimanual y la función ejecutiva en niños con parálisis cerebral unilateral OBJETIVO: Examinar la asociación entre las características de la resonancia magnética cerebral (RMN) y la función ejecutiva y el rendimiento bimanual en niños con parálisis cerebral unilateral (PC). MÉTODO: Los escáneres cerebrales de resonancia magnética clínica se clasificaron como: (1) patrón patológico predominante (normal, lesión de la sustancia blanca [WMI]; lesión de la materia gris; lesiones vasculares focales [FVI]; malformaciones; o varios); y (2) lesiones focales (ganglios frontales, basales y / o tálamo). Las evaluaciones incluyeron: (1) desempeño bimanual; (2) destreza unimanual; y (3) tareas de funciones ejecutivas (procesamiento de información, control de atención, flexibilidad cognitiva y fijación de objetivos) y calificaciones de comportamiento (padres). RESULTADOS: De 131 niños reclutados, 60 no fueron elegibles para el análisis, dejando 71 niños (47 varones, 24 mujeres) en la muestra final (edad media 9 años [DE 2 años], 6 años - 12 años 8 meses). Las RMN cerebrales fueron WMI (69%) y FVI (31%); y frontal (59%), talámico (45%), ganglios basales (37%) y ganglios basales más talámico (21%). El rendimiento bimanual fue menor en FVI versus WMI (p <0,003), y con lesiones frontales (p = 0,36), ganglios basales (p = 0,032) y talámicas / ganglios basales (p = 0,013). Aparte del procesamiento de la información, las tareas de la función ejecutiva no se asociaron con el patrón predominante. Las lesiones frontales predijeron el control de la atención (p = 0,049) y la flexibilidad cognitiva (p = 0,009) pero no el establecimiento de objetivos, el procesamiento de la información o las clasificaciones de comportamiento. INTERPRETACIÓN: La resonancia magnética cerebral clínica predice los resultados cognitivos y motores cuando se consideran las lesiones focales y los patrones de lesiones predominantes.

Imagem por ressonância magnética do cérebro como preditora do desempenho bimanual e função executiva de crianças com paralisia cerebral unilateral OBJETIVO: Examinar a associação entre as características do exame de imagem por ressonância magnética (IRM) e a função executiva e desempenho bimanual em crianças com paralisia cerebral (PC) unilateral. MÉTODO: Escaneamentos clínicos de IRM cerebrais foram classificados como: 1) padrão patológico predominante (normal, lesão da substância branca [LSB]; lesão da substância cinzenta; insultos vasculares focais [IVF]; malformações; ou outro); e (2) lesões focais (frontal, gânglios basais, e/ou tálamo). As avaliações incluíram: (1) desempenho bimanual; (2) destreza unimanual; e (3) tarefas de função executiva (processamento de informações, controle da atenção, flexibilidade cognitiva, e estabelecimento de metas) e pontuações comportamentais (pais). RESULTADOS: De 131 crianças recrutadas, 60 eram inelegíveis para análise, restando 71 crianças (47 do sexo masculino, 24 do sexo feminino) na amostra final (média de idade 9a [DP 2a], 6a-12a 8m). IRMs cerebrais eram do tipo LSB (69%) e IVFs (31%); e frontais (59%), talâmicas (45%), de gânglios da base (37%), e de gânglios da base mais talâmicas (21%). O desempenho bimanual foi menor em IVF versus LSB (p<0,003), e com lesões frontais (p=0,36), gânglios da base (p=0,032), e talâmicas/gânglios da base (p=0,013). Com exceção do processamento de informações, as tarefas da função executiva não foram associadas com o padrão predominante. Lesões frontais foram preditivas do controle da atenção (p=0,049) e flexibilidade cognitiva (p=,.009) mas não do estabelecimento de metas, processamento de informações, e pontuações comportamentais. INTERPRETAÇÃO: A IRM cerebral clínica prediz resultados cognitivos e motores quando lesões focais e padrões predominantes de lesão são considerados.