Clinically Relevant Genes Identified in Cerebral Palsy Cohorts Following Evaluation of the Clinical Description and Phenotype: A Systematic Review.

A growing number of genes have been identified in individuals with cerebral palsy (CP); however, many of these studies have poor compliance with the cerebral palsy clinical description. This systematic review aimed to assess the quality of the cerebral palsy clinical description/phenotype in cerebral palsy genetic studies published between 2010 and 2024 and report clinically relevant genes based on the quality of the cerebral palsy phenotype. An expert panel developed 6 criteria to review the reported cerebral palsy phenotype/description for each included study.

Content and readability of patient educational materials about neuromodulation for childhood movement disorders.

Purpose: To assess content and readability of online patient educational materials (PEMs) for paediatric deep brain stimulation (DBS) and intrathecal baclofen (ITB).

Methods: A content analysis of PEMs identified from top children's hospitals, institutions affiliated with published neuromodulation research, and DBS and ITB device manufacturers was conducted. PEM content was analysed using a predetermined framework.

Sociodemographic and clinical indicators of children and young people with cerebral palsy and reported unmet social needs.

Aim: To determine the frequency, type, clinical, and sociodemographic associations of unmet social needs in children with cerebral palsy (CP).

Method: We conducted a cross-sectional study of parents and carers of children with CP attending a specialist hospital clinic between July and September 2022. Unmet social needs were self-identified using a survey, guided by the WE CARE survey instrument and adapted to the local context.

Development of a new social prescribing intervention for families of children with cerebral palsy.

Aim: To co-design a social prescribing intervention (the EPIC-CP programme: Equitable Pathways and Integrated Care in Cerebral Palsy) with children with cerebral palsy (CP), their families, and clinicians to address unmet social needs.

Method: The study was conducted (August 2021 to March 2023) at the paediatric rehabilitation departments of the three tertiary paediatric hospitals in New South Wales, Australia. Eligible participants attended or worked at one of the departments, including children with CP, parents/caregivers, and clinicians.

Informing knowledge translation for selective dorsal rhizotomy: A survey of Australian clinicians and people with lived experience of cerebral palsy.

Aim: Selective dorsal rhizotomy (SDR) is a neurosurgical intervention used to reduce spasticity in children with cerebral palsy (CP). There is minimal relevant, evidence-based information available for Australian families and clinicians. This study aims to investigate the knowledge of people with lived experience and clinicians regarding SDR, including how they currently access information and what information they seek.

Postoperative pain and pain management following selective dorsal rhizotomy.

Background: Selective dorsal rhizotomy (SDR) is a neurosurgical procedure that reduces lower limb spasticity, performed in some children with spastic diplegic cerebral palsy. Effective pain management after SDR is essential for early rehabilitation. This study aimed to describe the anaesthetic and early pain management, pain and adverse events in children following SDR.

A comparison of cohorts of children with cerebral palsy from a population register and hospital admission data: A data linkage study.

Background: Administrative health data, such as hospital admission data, are often used in research to identify children/young people with cerebral palsy (CP).

Objectives: To compare sociodemographic, clinical details and mortality of children/young people identified as having CP in either a CP population registry or hospital admission data.

Methods: We identified two cohorts of children/young people (birth years 2001-2010, age at study end or death 2 months to 19 years 6 months) with a diagnosis of CP from either (i) the New South Wales (NSW)/Australian Capital Territory (ACT) CP Register or (ii) NSW hospital admission data (2001-2020).

Outpatient encounters, continuity of care, and unplanned hospital care for children and young people with cerebral palsy.

Aim: To describe the relationships between outpatient encounters, continuity of care, and unplanned hospital care in children/young people with cerebral palsy (CP).

Method: In this population-based data-linkage cohort study we included children/young people with CP identified in the New South Wales/Australian Capital Territory CP Register (birth years 1994-2018). We measured the frequency of outpatient encounters and unplanned hospital care, defined as presentations to emergency departments and/or urgent hospital admissions (2015-2020).

Multiple motor disorders in cerebral palsy.

Aim: To characterize motor disorders in children and young people with cerebral palsy (CP).

Method: This was a cross-sectional study of 582 children and young people with CP (mean age 9 years 7 months; range 11 months-19 years 9 months; standard deviation 4 years 11 months; 340 males) attending a rehabilitation clinic at a specialized children's hospital (May 2018-March 2020). Data on motor disorders, topography, functional classifications, and non-motor features, such as epilepsy, intellectual disability, and sensory impairments, were collected using the Australian Cerebral Palsy Register CP Description Form.

Social determinants of health for children with cerebral palsy and their families.

Social determinants of health (SDH) influence health and social outcomes in positive and negative ways. Understanding the impact of SDH on children with cerebral palsy (CP) is essential to improve health equity, optimize health outcomes, and support children with CP and their families to thrive in society. In this narrative review, we summarize the landscape of SDH impacting children with CP and their families worldwide.

Codesigning a social prescribing pathway to address the social determinant of health concerns of children with cerebral palsy and their families in Australia: a protocol for a mixed-methods formative research study.

Introduction: Social determinants of health (SDH) are contributors to health inequities experienced by some children with cerebral palsy and pose barriers to families engaging with complex and fragmented healthcare systems. There is emerging evidence to support 'social prescribing' interventions that systematically identify SDH concerns and refer patients to non-medical social care support and services to address their needs. To date, social prescribing has not been trialled specifically for children with neurodevelopmental disabilities, including cerebral palsy, in Australia.

Goal setting, goal attainment and quality of life of children following selective dorsal rhizotomy.

Aim: The aim of this study is to describe the individualized occupational performance issues identified by parents/carers and children prior to selective dorsal rhizotomy (SDR) surgery and analyse change up to 2 years post surgery in goal attainment and quality of life (QoL).

Method: The Australian SDR Research Registry (trial registration: ACTRN12618000985280) was used to extract data for individualized goals, goal attainment and QoL based on the Canadian Occupational Performance Measure (COPM) and the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child parent-proxy) at baseline and 1 and 2 years following SDR. Change in mean scores was analysed using linear mixed models.

Biofeedback assisted relaxation training and distraction therapy for pain in children undergoing botulinum neurotoxin A injections: A crossover randomized controlled trial.

Aim: To compare biofeedback assisted relaxation training (BART) with distraction therapy for pain during botulinum neurotoxin A (BoNT-A) treatment.

Method: This was a crossover randomized controlled trial. Eligible participants were 7 years and older with neurological conditions.

BrightHearts: A pilot study of biofeedback assisted relaxation training for the management of chronic pain in children with cerebral palsy.

Background: Chronic pain is estimated to impact one-in-three children with cerebral palsy (CP). Psychological interventions including behavioral and cognitive strategies play a key role in chronic pain management, but there is a paucity of research exploring their use in children with CP.

Aim: To investigate the acceptability and feasibility of biofeedback assisted relaxation training (BART) for chronic pain management in children with CP using a mixed-methods study design.

Non-attendance at outpatient clinic appointments by children with cerebral palsy.

Aim: To determine factors that influence non-attendance at outpatient clinics by children with cerebral palsy (CP).

Method: This was a retrospective cohort study of 1395 children with CP (59.6% male; born 2005 to 2017) identified from the New South Wales (NSW)/Australian Capital Territory CP Register, who had scheduled appointments at outpatient clinics at two NSW tertiary paediatric hospitals between 2012 and 2019.

Safety of sibling cord blood cell infusion for children with cerebral palsy.

Cerebral palsy (CP) is a nonprogressive neurological disorder and the most common physical disability of childhood. There is no cure for CP, but stem cells have the potential to improve brain injury and hence function. This phase 1 clinical trial investigated the safety of the intravenous infusion of full-matched sibling cord blood cells for children with CP aged 1 to 16 years.

Prescribed medicine use and extent of off-label use according to age in a nationwide sample of Australian children.

Background: Medicine prescribing for children is impacted by a lack of paediatric-specific dosing, efficacy and safety data for many medicines.

Objectives: To estimate the prevalence of medicine use among children and the rate of 'off-label' prescribing according to age at dispensing.

Methods: We used population-wide primarily outpatient dispensing claims data for 15% of Australian children (0-17 years), 2013-2017 (n = 840,190).

Determinants of Hospital-Based Health Service Utilization in Cerebral Palsy: a Systematic Review.

Objective: To systematically review and synthesize evidence of determinants associated with hospital-based health service utilization among individuals with cerebral palsy (CP).

Data Sources: Electronic databases MEDLINE, Embase, APA Psycinfo were searched from January 2000 to April 2020.

Study Selection: Observational studies were included that described people with CP, reported quantitative measures of hospital-based health service utilization (inpatient, outpatient, emergency department), and based in high-income countries.

Autosomal dominant ADAR c.3019G>A (p.(G1007R)) variant is an important mimic of hereditary spastic paraplegia and cerebral palsy.

Background: The type 1 interferonopathy, Aicardi-Goutières syndrome 6 (AGS6), is classically caused by biallelic ADAR mutations whereas dominant ADAR mutations are associated with dyschromatosis symmetrica hereditaria (DSH). The unique dominant ADAR c.3019G>A variant is associated with neurological manifestations which mimic spastic paraplegia and cerebral palsy (CP).

Lived experiences of pain in children and young people with cerebral palsy.

Aim: To explore the lived experiences of pain in children and young people with cerebral palsy (CP).

Method: Participants were recruited from the Sydney Children's Hospitals Network and the New South Wales/Australian Capital Territory CP Registers. Inclusion criteria were as follows: CP; aged 9 to 17 years; current/past experience of pain; fluent in English; no greater than mild intellectual disability.

'Life-changing surgery': English-language news media representation of selective dorsal rhizotomy.

Background: Selective dorsal rhizotomy (SDR) is a neurosurgical intervention to reduce spasticity in children with cerebral palsy. Parents researching SDR for their child may be influenced by framing of SDR in news media articles they read. This study examined framing of SDR in English-language news media.