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Aim Methods Results Conclusions Complex care programmes for children with medically complex cerebral palsy (CP) exist; however, evidence for their impact is limited. This study (i) explored the impact of The Royal Children's Hospital Complex Care Hub (CCH) on hospital service utilisation rates over a 3‐year period for children with medically complex CP compared with those eligible but received routine care, and (ii) compared health, disability and socio‐demographic characteristics of children and their families in both groups.Electronic medical record data from 78 children (mean age 9.43 years, females n = 37) with medically complex CP who accessed CCH services, and 92 (mean age 10.86 years, females, n = 39) who received routine care were included. Multivariable regression was used to analyse service utilisation: number of emergency department (ED) presentations, length/number of inpatient and intensive care unit admissions and number/type of hospital appointments. Critical health‐care needs, functioning/disability profile and child/family demographics for each group were compared.More children in the CCH group had a mixed motor type (73.1% vs. 15.2%), were classified within Gross Motor Function Classification System level V (76.9% vs. 34.8%), had respiratory, nutrition and social support needs and epilepsy. Children receiving CCH services had higher service utilisation rates; ED presentations (rate ratio (RR) = 1.81, 95% confidence interval (CI): 1.09–3.01), inpatient admissions (RR = 2.77, 95% CI: 2.01–3.83), outpatient encounters (RR = 1.69, 95% CI: 1.31–2.18) and telephone encounters (RR = 6.05, 95% CI: 4.56–8.02).Children with medically complex CP accessing a complex care service have higher service utilisation rates yet have more complex clinical presentations and higher support needs. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This systematic review focused on the common conventional physiotherapy interventions used with children with cerebral palsy (CP), aged 4 to 18 years, and critically appraised the recent evidence of each of these interventions using the Oxford Centre for Evidence-Based Medicine Levels of Evidence. The search strategy yielded 34 articles after inclusion and exclusion criteria were applied. The investigated physiotherapy interventions included strength and functional training, weight-supported treadmill training (WBSTT), and neurodevelopmental treatment (NDT). A category of treatment dosage was also included. Strength training was the most studied intervention with significant improvements found in the strength of selected muscle groups using dynamometry, with fewer studies showing significant improvement in function. Functional training showed improvements in gross motor function, endurance, and temperospatial measures, such as gait speed and stride length. Nonsignificant trends of improvement on the Gross Motor Function Measure (GMFM) and gait velocity were found for WBSTT by a few studies with low levels of evidence (case series). Of three studies that evaluated NDT, one high-level evidence study, i.e., randomized controlled trial (RCT) found significant improvements on the GMFM. All studies reviewing treatment dosage had high levels of evidence (RCTs), yet found no significant differences for different intensities of treatment. These results indicate that the levels of evidence for physiotherapy interventions, particularly strengthening and to a lesser extent functional training, in school-aged children with CP has improved; however, further high-level evidence is needed for other interventions. (Contains 4 tables.)

This study examined inter-rater reliability of the Functional Mobility Scale (FMS) for children with cerebral palsy (CP) and the presence of rater bias. A consecutive sample of 118 children with CP, 2-18 years old (mean 10.3 years, SD 3.6), was recruited from a hospital setting. Children were classified using the gross motor function classification system (GMFCS) with 13 in Level I, 49 in Level II, 44 in Level III, and 12 in Level IV. Each child was independently scored on the FMS by two raters. Raters were randomly assigned from a sample of 44 orthopaedic surgeons, hospital-based physiotherapists, and community-based physiotherapists. Quadratic weighted kappa coefficients for mobility ratings varied from 0.86 to 0.92 for the three distances, indicating substantial chance corrected agreement. Levels of agreement were similar when administering the scale in person and by telephone, suggesting that the FMS can be administered by either method. There was a tendency for surgeons to rate mobility higher than physiotherapists, however, only one of the comparisons was statistically significant. The FMS is a reliable tool that can be used by clinicians to assess mobility in children with CP. (Contains 4 tables and 1 figure.)

This systematic review critically appraises the literature on the psychometric properties and clinical utility of evaluative activity limitation outcome measures used for children with cerebral palsy (CP). The search strategy yielded 29 articles for eight outcome measures that met the inclusion criteria for the review. The Gross Motor Function Measure and Activities Scale for Kids were found to have sound psychometric properties in most areas. Reliability was found to be adequate for all tools. For the CP population, further examination of some aspects of validity is required for the Child Health Questionnaire (CHQ), Functional Assessment Questionnaire (FAQ), Functional Mobility Scale (FMS), Pediatric Evaluation of Disability Inventory, Pediatric Outcomes Data Collection Instrument (PODCI), and the Functional Independence Measure for Children. The FAQ, CHQ, FMS, and PODCI were found to require further examination for responsiveness. Clinical utility of the measures varied. The FMS was the only one to differentiate between function in the home, school, and community and to consider different assistive devices. These findings suggest that a range of measures is required to evaluate activity, and assessment should be tailored to the individual needs of children with CP.

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. [ABSTRACT FROM AUTHOR]

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. Modified Delphi study using expert consensus. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. 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". 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. 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. Chronic 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. [ABSTRACT FROM AUTHOR]

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. Video Podcast https://youtu.be/BWA3mpaGZfg [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]