A pilot implementation study of a chronic pain core outcome set and decision tree for children and young people with cerebral palsy.

Purpose: This study aimed to (i) develop a decision tree to guide clinicians to use a core outcome set (COS) of chronic pain assessment tools specific to children and young people with cerebral palsy and (ii) pilot test the implementation of the decision tree and core set in clinical practice.

Materials And Methods: The study involved two stages. Stage one was the development of the decision tree using a focus group with clinicians.

Adapting two pain assessment tools for young people with cerebral palsy: a multi-stakeholder consensus study.

Introduction: Cerebral palsy (CP) is the most common cause of childhood physical disability. Chronic pain is a common comorbidity of CP; however, holistic pain assessment is challenging due to few available self-report tools for people with CP and diverse cognitive, communication, and functional abilities. Previous research has identified 2 tools for potential use in CP (Fear of Pain Questionnaire for Children-Short Form [FOPQ-C-SF] and Modified Brief Pain Inventory [mBPI]), along with potential modifications.

The comprehensibility and feasibility of the modified brief pain inventory and fear of pain questionnaire adapted for children and young people with cerebral palsy.

Purpose: To test the comprehensibility and feasibility of the modified brief pain inventory (mBPI) and Fear of Pain Questionnaire for Children short-form (FOPQ-C-SF) adapted for children and young people with cerebral palsy (CP), with diverse cognitive and communication abilities. Improving assessment of pain interference (mBPI) and pain-related fear (FOPQ-C-SF) in CP can enhance quality of life by increasing access to under-utilised interventions targeting pain-related physical disability and mental health.

Methods: A convergent mixed methods approach was used.

A core outcome set to assess chronic pain interference and impact on emotional functioning for children and young people with cerebral palsy.

Aim: To: (1) develop a core outcome set (COS) to assess chronic pain interference and impact on emotional functioning for children and young people with cerebral palsy (CP) with varying communication, cognitive, and functional abilities; (2) categorize the assessment tools according to reporting method or observer-reported outcome measures; and (3) categorize the content of tools in the COS according to the International Classification of Functioning, Disability and Health (ICF).

Method: A two-stage multi-stakeholder consensus process was used: stage 1 consisted of a workshop where 42 valid and reliable assessment tools were presented to 12 clinicians and six individuals with lived experience of CP to exclude tools considered not feasible; stage 2 consisted of a 2-round Delphi survey of 85 clinicians, researchers, and individuals with lived experience of CP to gain consensus on which tools to include. Included tools were mapped to the framework of the ICF.

Measurement properties and feasibility of chronic pain assessment tools for use with children and young people with cerebral palsy.

Purpose: Chronic pain assessment tools exist for children, but may not be valid, reliable, and feasible for populations with functional, cognitive or communication limitations, for example, cerebral palsy (CP). This study aimed to (i) identify chronic pain assessment tools used with children and young people and rate their measurement properties; (ii) develop a CP specific feasibility rating tool to assess the feasibility of tools in CP; and (iii) categorise tools according to reporting method.

Materials And Methods: Assessment tools were identified by literature review.

Comprehensive care programmes for children with medical complexity.

Background: Children with medical complexity (CMC) represent a small, but growing, proportion of all children. Regardless of their underlying diagnosis, by definition, all CMC have similar functional limitations and high healthcare needs. It has been suggested that improving aspects of healthcare delivery for CMC improves health- and quality of life-related outcomes for children and their families and reduces healthcare-related expenditure.

Examining tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy: stakeholder preference and recommendations for modification.

Purpose: To firstly identify tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy (CP), and secondly identify suggestions to improve their relevance, comprehensiveness, comprehensibility and feasibility for the CP population. Improving assessment of the impact of pain on emotional functioning can enhance quality of life by improving access to interventions for pain-related physical disability, anxiety and depression.

Methods: Ethics approval was granted through the Women's and Children's Health Network Human Research Ethics Committee (2022/HRE00154).

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.

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.

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.

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.

Training Two-Wheel Bike Skills in Children with Cerebral Palsy: A Practice Survey of Therapists in Australia.

: To describe current practices of physiotherapists and occupational therapists when training two-wheel bike skills in children with cerebral palsy (CP) within an International Classification of Functioning, Disability and Health (ICF) framework. : Ninety-five physiotherapists and occupational therapists working with children with CP in Australia completed a customized online survey. Survey questions related to: eligibility, initial assessment, intervention characteristics, and evaluation of effectiveness.

Prevalence and characteristics of pain in children and young adults with cerebral palsy: a systematic review.

Aim: The primary aim of this review is to evaluate the evidence for pain prevalence in children and young adults with cerebral palsy. Secondary aims are to identify pain characteristics and types of pain measurement used in this population.

Method: Ovid MEDLINE, Embase, CINAHL Plus, and PubMed were searched in October 2016 and updated in November 2017.

Dyskinetic vs Spastic Cerebral Palsy: A Cross-sectional Study Comparing Functional Profiles, Comorbidities, and Brain Imaging Patterns.

The authors aimed to describe the distribution of predominant and secondary motor types and compare functional profiles, comorbidities, and brain imaging patterns between dyskinetic and spastic cerebral palsy. Children recruited from a cerebral palsy register were assessed at age 5, 10, or 15. Motor types, topography, functional classifications, and comorbidities were recorded.

Trihexyphenidyl for dystonia in cerebral palsy.

Background: Cerebral palsy occurs in up to 2.1 of every 1000 live births and encompasses a range of motor problems and movement disorders. One commonly occurring movement disorder amongst those with cerebral palsy is dystonia: sustained or intermittent involuntary muscle spasms and contractions that cause twisting, repetitive movements and abnormal postures.

Task-specific gross motor skills training for ambulant school-aged children with cerebral palsy: a systematic review.

Objectives: The primary objective is to systematically evaluate the evidence for the effectiveness of task-specific training (TST) of gross motor skills for improving activity and/or participation outcomes in ambulant school-aged children with cerebral palsy (CP). The secondary objective is to identify motor learning strategies reported within TST and assess relationship to outcome.

Design: Systematic review.

Bike skills training for children with cerebral palsy: protocol for a randomised controlled trial.

Introduction: Two-wheel bike riding can be a goal for children with cerebral palsy (CP) and a means of participating in physical activity. It is possible for some children with CP to ride a two-wheel bike; however, currently far fewer can ride compared with their typically developing peers. Evidence supports training targeted towards goals of the child with CP and their family; yet there is little evidence to guide best-practice bike skills training.

Ability of independently ambulant children with cerebral palsy to ride a two-wheel bicycle: a case-control study.

Aim: Limited information exists on the ability of children with cerebral palsy (CP) to ride a two-wheel bicycle, an activity that may improve health and participation. We aimed to describe bicycle-riding ability and variables associated with ability to ride in children with CP (Gross Motor Functional Classification System [GMFCS] levels I-II) compared with children with typical development.

Method: This case-control study surveyed parents of 114 children with CP and 87 children with typical development aged 6 to 15 years (115 males, mean age 9y 11mo, standard deviation [SD] 2y 10mo).

Children with cerebral palsy and periventricular white matter injury: does gestational age affect functional outcome?

This study aimed to determine differences in functional profiles and movement disorder patterns in children aged 4-12 years with cerebral palsy (CP) and periventricular white matter injury (PWMI) born >34 weeks gestation compared with those born earlier. Eligible children born between 1999 and 2006 were recruited through the Victorian CP register. Functional profiles were determined using the Gross Motor Function Classification System (GMFCS), Manual Abilities Classification System (MACS), Communication Function Classification System (CFCS), Functional Mobility Scale (FMS) and Bimanual Fine Motor Function (BFMF).

Interventions in pediatric chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review.

Purpose: A range of interventions have been used for the management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in children and adolescents. Currently, debate exists as to the effectiveness of these different management strategies. The objective of this review was to synthesize and critically appraise the literature on interventions for pediatric CFS/ME.

Reliability of the functional mobility scale for children with cerebral palsy.

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.