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Aim: To evaluate clinicians' perspectives on the impact of 'lockdown' during the COVID‐19 pandemic for children and young people with severe physical neurodisability and their families. Method: Framework analysis of comments from families during a recent service review was used to code the themes discussed according to the World Health Organization International Classification of Functioning, Disability and Health (ICF) and interpreted into emergent themes to summarize the impact of lockdown (Stage 1). They were presented to a clinician focus group for discussion (consultants and physiotherapists working in a specialist motor disorders service, [Stage 2]). Results: Three overarching themes 'Uncertainty and Anxiety', 'Exacerbation of Existing Inequalities' and 'Care Provision: Reaction, Adaptation, and Innovation' summed up the impact of the COVID‐19 pandemic on health and well‐being in children and young people with neurodisability and their families. All themes were influenced by time. Interpretation: This study reflects clinician's perceptions of family experiences of the pandemic and lockdown. Significant impact is apparent in the entire U.K. population, but the complexity of care needs for children with physical neurodisability exacerbates this. Lobbying for government policy is vital to ensure that all children, and in particular those with significant health and social care needs, are protected and continue to access services. During the restoration and recovery phase of the pandemic, there is a need for service reconfiguration that utilizes what we have learned and is adaptive to individual family circumstances. [ABSTRACT FROM AUTHOR]

Aim: To explore factors predicting acquisition and loss of best walking ability in young people with bilateral cerebral palsy (CP). Method: In our population cohort (Study of Hips And Physical Experience) of 338 children (201 males, 137 females) with bilateral CP, age at achieving walking was recorded and walking ability predicted from early motor milestones. Walking was assessed at 5 to 8 years (mean 7y) and in 228 of 278 survivors at 13 to 19 years (mean 16y). Parent carers reported their view of any loss of best achieved walking. Factors potentially associated with loss of best achieved walking were explored: severity and type of motor disorder; intellect and communication; manipulative skill; general health and comorbidity; pain; orthopaedic surgery; musculoskeletal spine and lower limb deformity; weight; fatigue; mood; and presence of regular exercise regime. Results: The ability to walk independently was reliably predicted by the motor milestone 'getting to sit and maintain sitting' by the age of 36 months (without aids) and 55 months (with aids). Forty‐five per cent of the cohort never walked 10 steps independently. Not all who achieved walking without aids were still doing so by a mean age of 16 years, which was associated with later age at achieving walking and the degree of musculoskeletal deformity, as was the parent carers' report of loss of best walking. Interpretation: In this study, development of musculoskeletal deformity was a significant factor in not maintaining best achieved walking by mean age 16 years, which is most likely to occur in young people whose walking ability is with aids over short distances or in therapy only. Prediction of future walking ability in a child with bilateral CP can be made from early motor milestones. [ABSTRACT FROM AUTHOR]

Aim: We explored factors associated with pain and its severity in a population cohort of young people with bilateral cerebral palsy, comparing parent/carer and young people self-reports.Method: Of 278 survivors (mean age 16y 8mo, SD 1y 4mo, range 13y 8mo-19y 3mo) from the South Thames in the Study of Hips and Physical Experience cohort of 338 young people with bilateral cerebral palsy, 212 parents/carers and 153 young people completed questionnaires on the presence, severity, timing, site, associated factors, impact, and treatment of pain.Results: Seventy per cent of parents/carers reported pain within 3 months, 59% the previous week, and 50% the previous day with 56% reporting 'regularly experienced'. Of young people able to do so, 63% reported pain within 3 months, 50% the previous week, and 42% the previous day, with 48% reporting regular pain. There was strong agreement between the parent/carer and young people, reporting pain severity over the previous 3 months. Pain severity was associated with increased motor impairment and comorbidity, particularly constipation, spasticity, equipment use, and higher emotional score, but not sex, intellectual disability, speech, or maternal education. Multiple sites of musculoskeletal pain were reported in two-thirds of individuals. Pain was associated with voluntary movement in individuals with less motor impairment and with being moved in those with severe motor impairment. Greater pain severity had a negative effect on both physical and psychological quality of life.Interpretation: Increasing awareness of the comorbidities in cerebral palsy may aid effective treatment, reducing pain experienced by young people with cerebral palsy.What This Study Adds: Regular moderate or severe pain is reported in young people with bilateral cerebral palsy (CP) in all Gross Motor Function Classification System levels. Pain is reported more frequently in young people who are non-ambulant. General ill health is strongly associated with severity of pain after controlling for severity of CP, especially constipation. Pain occurs most often in ambulant young people during voluntary activity and in those who are non-ambulant when being moved. There is strong agreement between parents/carers and young people about pain presence and severity. [ABSTRACT FROM AUTHOR]

While there remains limited intervention to address the damage to the developing brain, current multidisciplinary management of cerebral palsy (CP) needs to minimise the impact of secondary musculoskeletal complications. A focus on comorbidities to maximise function for activity and participation by supporting the child and family in their environment is required. Comprehensive clinical guidance was published by National Institute for Health and Care Excellence (NICE) earlier this year. This article aims to provide a practical clinical approach to the child and family based on:(1) art: empathy, listening and weighing up the clinical picture of the child and family in context; diagnosis, the need for support and space; and care coordination at the right time; and (2) science: the current science in CP care is rapidly expanding in terms of plasticity, pathophysiology, functional assessments and treatments. [ABSTRACT FROM AUTHOR]

Abstract: An interdisciplinary European group of clinical experts in the field of movement disorders and experienced Botulinum toxin users has updated the consensus for the use of Botulinum toxin in the treatment of children with cerebral palsy (CP). A problem-orientated approach was used focussing on both published and practice-based evidence. In part I of the consensus the authors have tabulated the supporting evidence to produce a concise but comprehensive information base, pooling data and experience from 36 institutions in 9 European countries which involves more than 10,000 patients and over 45,000 treatment sessions during a period of more than 280 treatment years. In part II of the consensus the Gross Motor Function Measure (GMFM) and Gross Motor Function Classification System (GMFCS) based Motor Development Curves have been expanded to provide a graphical framework on how to treat the motor disorders in children with CP. This graph is named “CPGraph Treatment Modalities – Gross Motor Function” and is intended to facilitate communication between parents, therapists and medical doctors concerning (1) achievable motor function, (2) realistic goal-setting and (3) treatment perspectives for children with CP. The updated European consensus 2009 summarises the current understanding regarding an integrated, multidisciplinary treatment approach using Botulinum toxin for the treatment of children with CP. [Copyright &y& Elsevier]

Aim: To assess whether preoperative botulinum neurotoxin A (BoNT-A) affects pain after major hip surgery for children with bilateral cerebral palsy (CP)., Method: This was a randomized, parallel arms, placebo-contolled trial. Children with hypertonic CP aged 2 to 15 years awaiting bony hip surgery at a tertiary hospital were randomized to receive either BoNT-A or placebo injections into the muscles of the hip on a single occasion immediately before surgery. The primary outcome was the paediatric pain profile (PPP), which was assessed at baseline and weekly for 6 weeks. Treatment allocation was by minimization. Participants, clinicians, and outcome assessors were masked to group assignment., Results: Twenty-seven participants (17 males, 10 females; mean 8y 8mo [SD 3y 9mo], range 3y 4mo-15y 10mo) were allocated to BoNT-A and 27 participants (14 males, 13 females; mean 8y 11mo [SD 3y 5mo], range 4y 1mo-15y 2mo) to placebo. Mean (SD) PPP at 6 weeks for the BoNT-A group (n=24 followed up) was 10.96 (7.22) and for the placebo group (n=26) was 10.04 (8.54) (p=0.69; 95% confidence interval [CI] -4.82, 3.18). There were 16 serious adverse events in total during 6 months of follow-up (n=6 in BoNT-A group)., Interpretation: Use of BoNT-A immediately before bony hip surgery for reducing postoperative pain for children with CP was not supported., What This Paper Adds: Botulinum neurotoxin A (BoNT-A) does not reduce postoperative pain following bony hip surgery. BoNT-A also does not affect postoperative quality of life., (© 2019 Mac Keith Press.)