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Little is known about the relationship between working memory (WM) abilities and reading in children with cerebral palsy (CP) who have age-appropriate communication and language. The aim of this group case study is to analyze the WM abilities and their relationship to reading in children with CP and age-appropriate communication and language. Fifteen children with CP (6:9 to 11:6 years) and age-appropriate communication and language were identified. They were given tests of communication and language, reading (decoding), and three aspects of WM: phonological short-term memory (PSTM); visuospatial short-term memory (VSTM); and the central executive (CE). The children were divided into two groups; five who had age-appropriate reading (Age-appropriate Readers), and ten with very low reading abilities (Developing Readers). The results showed that PSTM was mostly age appropriate in both reading groups and their scores mostly correlated with their reading abilities. VSTM scores were very poor in both groups and not related to reading group membership or reading. CE abilities were mostly as would be expected for the Age-appropriate Readers, but low for the Developing Readers; CE scores correlated with reading abilities. The findings suggest that there are variations in the working memory abilities in this group of children and that the CE may be an important contributor to their reading development.

The purpose of this case study was to explore the communication needs of a child with deafness and cerebral palsy (DCP) and how these needs can be supported by interventions targeting the use of communication approaches and strategies. One semi-structured interview with the child's parents and five observations of the child in different contexts before and after the interventions took place. A rating scale "Checklist of Identified Needs", deriving from the observation data, the "Early Years Foundation Stage (EYFS) Development Matters" assessment and a British Sign Language (BSL) receptive and expressive skills assessment were used to explore the child's communication strategies before and after the intervention. The child completed two parallel school-based interventions lasting seven weeks, (1) one delivered daily which focused on BSL usage and Augmentative Alternative Communication (AAC) and (2) one targeting communication strategies such as initiating and maintaining eye contact using a weekly "social story" and play-based sessions. Our results indicated that the combined use of sign and AAC technology to target key areas of communication use and a targeted approach using social stories to support communication strategies can be effective in enhancing communication skills of children with DCP. Implications for practice are discussed.

Few studies have investigated how individuals with partially intelligible speech choose to communicate, including how, when, and why they might use a speech-generating device (SGD). This study aimed to add to the literature by exploring how this group of individuals use different communication strategies. Qualitative interviews were carried out with 10 participants with partially intelligible speech with the aim of investigating participants' perceptions of modes of communication and communication strategies. Transcripts were analyzed using Framework Analysis to investigate the role of SGDs alongside other communication strategies. Factors that influence why, when, and how a person chooses to communicate were identified and these were interpreted as an explanatory model of communication with partially intelligible speech. Participants described how they made the decision whether to attempt to communicate at all and then which communication method to use. Decision-making was influenced by the importance of the message, how much time is available, past experience, and the communication partner. Each communication attempt adds to an individuals' experience of communicating and influences subsequent decisions. This study suggests that individuals with partially intelligible speech are at risk of reduced communication environments and networks and that current SGDs may not be designed in a way that recognizes their particular needs.

The aim of this article was to explore the views of parents regarding seating for children with cerebral palsy. Two interviews with parents were conducted. These were transcribed verbatim and thematic analysis was conducted. This small study outlines three themes: the importance of seating, seating and participation, and the parental role in supporting participation. The parents in this study viewed seating as beneficial to support participation by enhancing energy conservation and promoting upper limb use. Barriers may relate to equipment provision and poor community access and parents may perceive themselves to play a role in overcoming barriers by adopting an advocacy role.

Background: Commissioners and providers require information relating to the number of people requiring a service in order to ensure provision is appropriate and equitable for the population they serve. There is little epidemiological evidence available regarding the prevalence of people who could benefit from augmentative and alternative communication (AAC) in the UK. Aim: To determine the prevalence of people who could benefit from AAC in the UK. Methods & Procedures: An epidemiological approach was taken to create a new estimate of need: the prevalence of the main medical conditions and specific symptoms leading to the requirement for AAC were identified from the literature and AAC specialists were consulted to estimate the number of people who may require AAC. Outcomes & Results: A total of 97.8% of the total number of people who could benefit from AAC have nine medical conditions: dementia, Parkinson's disease, autism, learning disability, stroke, cerebral palsy, head injury, multiple sclerosis and motor neurone disease. The total expectation is that 536 people per 100 000 of the UK population (approximately 0.5%) could benefit from AAC. Conclusions & Implications: To provide accurate figures on the potential need for and use of AAC, data need to be consistently and accurately recorded and regularly reviewed at a community level. The existing data suggest an urgent need for more accurate and up to date information to be captured about the need for AAC in the UK to provide better services and ensure access to AAC strategies, equipment and support.

Background: Communication difficulties are common in cerebral palsy (CP) and are frequently associated with motor, intellectual and sensory impairments. Speech and language therapy research comprises single-case experimental design and small group studies, limiting evidence-based intervention and possibly exacerbating variation in practice. Aims: To describe the assessment and intervention practices of speech-language therapist (SLTs) in the UK in their management of communication difficulties associated with CP in childhood. Methods & Procedures: An online survey of the assessments and interventions employed by UK SLTs working with children and young people with CP was conducted. The survey was publicized via NHS trusts, the Royal College of Speech and Language Therapists (RCSLT) and private practice associations using a variety of social media. The survey was open from 5 December 2011 to 30 January 2012. Outcomes & Results: Two hundred and sixty-five UK SLTs who worked with children and young people with CP in England (n = 199), Wales (n = 13), Scotland (n = 36) and Northern Ireland (n = 17) completed the survey. SLTs reported using a wide variety of published, standardized tests, but most commonly reported assessing oromotor function, speech, receptive and expressive language, and communication skills by observation or using assessment schedules they had developed themselves. The most highly prioritized areas for intervention were: dysphagia, alternative and augmentative (AAC)/interaction and receptive language. SLTs reported using a wide variety of techniques to address difficulties in speech, language and communication. Some interventions used have no supporting evidence. Many SLTs felt unable to estimate the hours of therapy per year children and young people with CP and communication disorders received from their service. Conclusions & Implications: The assessment and management of communication difficulties associated with CP in childhood varies widely in the UK. Lack of standard assessment practices prevents comparisons across time or services. The adoption of a standard set of agreed clinical measures would enable benchmarking of service provision, permit the development of large-scale research studies using routine clinical data and facilitate the identification of potential participants for research studies in the UK. Some interventions provided lack evidence. Recent systematic reviews could guide intervention, but robust evidence is needed in most areas addressed in clinical practice.

This longitudinal case study presents John's journey through childhood and adolescence, living with visual difficulties associated with a cerebral visual impairment. It highlights the day-to-day problems that John encountered, giving practical solutions and strategies that have enabled his dream of going to a university to be realized. John and his family are an inspiration. (Contains 3 figures and 1 table.)

Aim: Evidence-based recommendations regarding which exercise tests to use in children and adolescents with cerebral palsy (CP) are lacking. This makes it very difficult for therapists and researchers to choose the appropriate exercise-related outcome measures for this group. This study aimed to identify a core set of exercise tests for children and adolescents with CP. Method: Fifteen experts (10 physical therapists/researchers and five exercise physiologists; three from the Netherlands, two from the USA, one from the UK, five from Canada, and four from Australia) participated in a Delphi survey which took four stages to achieve a consensus. Based on the information that was collected during the survey, a core set of measures was identified for levels I to IV of the Gross Motor Function Classification System (GMFCS). Results: For children with CP classified at GMFCS levels I and II, tests were identified for two motor skills (walking and cycling). For the subgroup of children with CP classified at GMFCS level III, the tests that were identified related to walking, cycling, and arm cranking. For children with CP classified at GMFCS level IV, the tests included in the core set were related to cycling and arm cranking. Interpretation: The core set will help physical therapists, exercise physiologists, and other health professionals who work with children and adolescents with CP to decide which test(s) to use in clinical practice or research. This will facilitate comparability of results across studies and clinical programmes.

Social validity is the extent to which procedures, goals, and outcomes are acceptable and important to end users and is not commonly addressed during assessment development. This article pilots a process of triangulating multiple methods to evaluate the social validity of a self-report assessment. These procedures were piloted using the Child Occupational Self-Assessment (COSA), a self-report of everyday activities for children with disabilities. This study collected COSA responses from 502 children with disabilities and conducted observations and interviews with 5 additional children with cerebral palsy. Data were aligned with social validity benchmark statements and integrated using data displays. Social validity was evaluated by examining congruencies and discrepancies in the results. Implications and the legitimacy of design decisions are discussed. (Contains 3 figures, 5 tables, and 3 notes.)

Inequality in communicative resources available to non-speaking children with cerebral palsy in comparison with their "naturally" speaking co-participants has material consequences for the ways in which face-to-face interaction is organized. Analyses of interaction involving non-speaking children with physical disability and speaking adults has often interpreted the patterns of interaction observed as indicative of non-speaking children's apparent passivity in interaction. Research concerned with these children's interactions with their peers has shown evidence of non-speaking children's active engagement in episodes of interaction characterized by, for example, shared laughter and heightened affect. The analysis presented here utilizes the principles and practices of Conversation Analysis (CA) to examine how non-speaking children with cerebral palsy and their peers bring about and organize episodes of non-serious interaction. In so doing the analysis reveals how non-speaking children are demonstrably active in developing the interaction as non-serious, and how both children collaborate in constituting the non-speaking child as playfully naughty. (Contains 1 note and 2 tables.)

This paper presents the processes and findings of a three-year action research project implemented in a small number of urban slums in the city of Kolkata (previously known as Calcutta), the capital of the state of West Bengal in Eastern India. The project involved partnership between an established institute for cerebral palsy in Kolkata, two United Kingdom (UK) universities and three non-government organisations working on community development in the urban slums of Kolkata. These diverse groups working jointly were able to reach low-income, disadvantaged families with low literacy skills, providing individualised home-based intervention for their child with disabilities. (Contains 4 tables.)

This study investigated typically developing children's attitudes to physical and intellectual disabilities using the "Peer Attitudes Toward the Handicapped Scale" (PATHS). Participants were 202 children aged from 9 to 12 years in mainstream classes in the UK. The effect of knowledge about disabilities on attitudes was investigated by controlling whether children received a description of either a child with cerebral palsy or a child with Down syndrome before or after completing the PATHS. Children's friendship intentions towards the described child were also elicited. More positive attitudes toward intellectual disabilities were expressed by children provided with information about Down syndrome. More negative attitudes toward physical disability were expressed by children provided with information about cerebral palsy. This pattern was mostly attributable to the responses of girls who appeared to be more sensitive to the provision of information. Only children's attitudes to physical disability predicted friendship intentions.

This paper evaluates two research projects concerned with conductive education for children with cerebral palsy, one in Germany and the other in the United Kingdom. Issues of generalizability and drawing causal conclusions are raised. The paper finds that neither the most sanguine expectations nor the worst misgivings about conductive education were substantiated by the two projects. (DB)

In this article, the author talks about functional electrical stimulation in children and adolescents with cerebral palsy. Functional electrical stimulation (FES) is defined as the electrical stimulation of muscles that have impaired motor control, in order to produce a contraction to obtain functionally useful movement. It was first proposed in the 1980s as a treatment option in children with cerebral palsy (CP). The most common application, at least in the adult stroke population, is FES applied to the dorsiflexors during the swing phase to prevent drop foot which could lead to tripping and falls. A 2009 UK National Institute for Health and Clinical Excellence (NICE) guidance states that current evidence on safety and efficacy of FES for improving drop foot of central neurological origin is adequate to support the use of this procedure. However, the studies reviewed for this guidance were mainly on the adult stroke population.

Purpose: Little is known about how children learn to control eye-gaze technology, and clinicians lack information to guide decision-making. This paper examines whether typically developing 2–3 year olds can infer for themselves the causal mechanisms by which eye-gaze technology is controlled, whether a teaching intervention based on causal language improves performance and how their performance compares to the same task accessed via a touchscreen. Methods and materials: Typically developing children's (n = 9, Mean Age 28.7 months) performance on a cause and effect game presented on eye-gaze and touchscreen devices was compared. The game was presented first with no specific instruction on how to control the devices. This was followed by a subsequent presentation with explicit instruction about how the access methods worked, using a causal language approach. A final presentation examined whether children had retained any learning. Results: Performance in the eye-gaze condition without instruction (42.5% successful trials) was significantly below performance in the corresponding touchscreen condition (75%). However, when causal language instruction was added, performance with both access methods rose to comparable levels (90.7% eye-gaze and 94.6% touchscreen success). Performance gains were not retained post-intervention. Conclusions: Although 2–3 years in the study could make use of eye-gaze technology with support, this study found no evidence that these children could infer the causal mechanisms of control independently or intuitively. The lack of spatial contiguity and the comparative lack of feedback from eye-gaze devices are discussed as possible contributory factors. IMPLICATIONS FOR REHABILITATION: There are challenges in young children inferring for themselves the causal link between eye movements and control of an eye-gaze device. Explicit instruction may improve children's performance in a specific task, but it is debatable whether this translates to the establishment of causal mechanisms for control of the device. Clinicians should be cautious of making assumptions about what children are learning from activities claiming to teach cause and effect or other foundational eye-gaze control skills. [ABSTRACT FROM AUTHOR]

The cerebral palsies (CP) have a UK prevalence of 1–2/1000. 60–80% of children with CP have upper-limb involvement. Physical movement difficulties including tone abnormalities, weakness and secondary musculoskeletal function are associated with sensory, cognitive difficulties and medical co-morbidities. Understanding the underlying pathophysiology of CP and structured multidisciplinary assessment in the context of the International Classification of Functioning, Disability and Health (ICF) can guide management to improve activity and participation for children with CP. A range of therapy, medical and surgical interventions may be offered to a child and their family. The selection of treatment options should be focused on individualized and realistic goals. Clear outcomes should be evaluated. This review aims to summarize a structured approach to assessment and management of upper limb function in CP; and is illustrated by case examples. [ABSTRACT FROM AUTHOR]

Aim: In order to understand the global variations in the growth trajectories of cerebral palsy patients, this study aimed to compare the growth patterns of cerebral palsy patients in Saudi Arabi with United States and United Kingdom counterparts. Method: Anthropometric data from 107 participants with cerebral palsy in Saudi Arabia were collected, including age, gender, cerebral palsy type, Gross Motor Function Classification System level, birth weight, weight at assessment, height at assessment, body mass index, and head circumference at assessment. Results: This study found discrepancies between the growth patterns of Saudi Arabian children with cerebral palsy and United Kingdom and the United States growth charts, particularly among those with severe cerebral palsy. Significant differences were observed in weight, height, and body mass index z-scores when comparing Saudi Arabian data with the United kingdom and United States reference data. Interpretation: These findings emphasize the importance of validating growth charts across different populations to ensure accurate monitoring and clinical management of children with cerebral palsy. Additionally, this study highlights the need for region-specific growth references to better address the diverse needs of individuals with cerebral palsy worldwide. [ABSTRACT FROM AUTHOR]

Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. Methods: Two rounds of semi‐structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open‐ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data‐driven inductive thematic analysis. Results: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP. [ABSTRACT FROM AUTHOR]

Parent and therapist engagement and partnership are critical in early intervention physiotherapy and occupational therapy for infants with cerebral palsy to improve outcomes. The main aim of this study was to understand how parents perceive their engagement experience in early intervention over time. Grounded theory methodology was used. Twenty parents of diverse backgrounds participated in 22 interviews (including some repeated longitudinally) to reflect on their engagement experience within the context of early intervention community services provided in the UK NHS. The findings highlight how parents' perspectives of their engagement in EI change according to critical circumstances, including their preceding neonatal trauma, the at-risk CP label, firmer diagnosis of CP and their child's response to intervention. We theorise that this disrupted transition experience to parenthood becomes part of parental framing (or sense-making) of their engagement in EI. Overlapping frames of uncertainty, pursuit and transformation capture and explain nuances in parents' engagement patterns within EI over time. This theorising has implications for early intervention therapists in how they engage in the lives of families and partner with parents to support healthier parental transition, wellbeing and subsequent improved infant outcomes. New insights are provided into how recent advances to prognostic practices for infants with cerebral palsy affect parental perspectives and their engagement experience in early intervention The paper's organising concepts support a clearer understanding for early intervention practitioners of this complex parent experience Early intervention practitioners are encouraged to reflect upon their practice as they engage in families' lives and partner with parents during this challenging period to optimise outcomes [ABSTRACT FROM AUTHOR]

Background: To address if the long-standing association between maternal infection, depression/anxiety in pregnancy, and offspring neurodevelopmental disorder (NDD) is causal, we conducted two negative-control studies. Methods: Four primary care cohorts of UK children (pregnancy, 1 and 2 years prior to pregnancy, and siblings) born between 1 January 1990 and 31 December 2017 were constructed. NDD included autism/autism spectrum disorder, attention-deficit/hyperactivity disorder, intellectual disability, cerebral palsy, and epilepsy. Maternal exposures included depression/anxiety and/or infection. Maternal (age, smoking status, comorbidities, body mass index, NDD); child (gender, ethnicity, birth year); and area-level (region and level of deprivation) confounders were captured. The NDD incidence rate among (1) children exposed during or outside of pregnancy and (2) siblings discordant for exposure in pregnancy was compared using Cox-regression models, unadjusted and adjusted for confounders. Results: The analysis included 410 461 children of 297 426 mothers and 2 793 018 person-years of follow-up with 8900 NDD cases (incidence rate = 3.2/1000 person years). After adjustments, depression and anxiety consistently associated with NDD (pregnancy-adjusted HR = 1.58, 95% CI 1.46–1.72; 1-year adj. HR = 1.49, 95% CI 1.39–1.60; 2-year adj. HR = 1.62, 95% CI 1.50–1.74); and to a lesser extent, of infection (pregnancy adj. HR = 1.16, 95% CI 1.10–1.22; 1-year adj. HR = 1.20, 95% CI 1.14–1.27; 2-year adj. HR = 1.19, 95% CI 1.12–1.25). NDD risk did not differ among siblings discordant for pregnancy exposure to mental illness HR = 0.97, 95% CI 0.77–1.21 or infection HR = 0.99, 95% CI 0.90–1.08. Conclusions: Maternal risk appears to be unspecific to pregnancy: our study provided no evidence of a specific, and therefore causal, link between in-utero exposure to infection, common mental illness, and later development of NDD. [ABSTRACT FROM AUTHOR]

This paper explores whether a structured history-taking tool yields useful descriptions of children's looking skills. Parents of 32 children referred to a specialist communication clinic reported their child's looking skills using the Functional Vision for Communication Questionnaire (FVC-Q), providing descriptions of single object fixation, fixation shifts between objects and fixation shifts from object to person. Descriptions were compared with clinical assessment. 24/32 children were reported to have some limitation in fixation. Limitation was subsequently seen in 30/32 children. Parental report and assessment agreed fully in 23/32 (72%). The largest area of discrepancy was object-person fixation shifts, with five children not observed to show this behavior despite its being reported. Findings indicate a structured questionnaire yields description of fixations, which correspond well with clinical assessment. Descriptions supported discussion between parents and clinicians. It is proposed that the FVC-Q is a valuable tool in supporting clinicians in eliciting information about fixation skills. [ABSTRACT FROM AUTHOR]

Purpose: Assess the effects of selective dorsal rhizotomy (SDR) on motor function and quality of life in children with a Gross Motor Function Classification System (GMFCS) level of IV or V (non-ambulatory). Methods: This is a prospective, observational study in three tertiary neurosurgery units in England, UK, performing SDR on children aged 3–18 with spastic diplegic cerebral palsy, and a GMFCS level of IV or V, between 2012 and 2019. The primary outcome measure was the change in the 66-item Gross Motor Function Measure (GMFM-66) from baseline to 24 months after SDR, using a linear mixed effects model. Secondary outcomes included spasticity, bladder function, quality of life, and pain scores. Results: Between 2012 and 2019, 144 children who satisfied these inclusion criteria underwent SDR. The mean age was 8.2 years. Fifty-two percent were female. Mean GMFM-66 score was available in 77 patients (53.5%) and in 39 patients (27.1%) at 24 months after SDR. The mean increase between baseline and 24 months post-SDR was 2.4 units (95% CI 1.7–3.1, p < 0.001, annual change 1.2 units). Of the 67 patients with a GMFM-66 measurement available, a documented increase in gross motor function was seen in 77.6% (n = 52). Of 101 patients with spasticity data available, mean Ashworth scale decreased after surgery (2.74 to 0.30). Of patients' pain scores, 60.7% (n = 34) improved, and 96.4% (n = 56) of patients' pain scores remained the same or improved. Bladder function improved in 30.9% of patients. Conclusions: SDR improved gross motor function and reduced pain in most patients at 24 months after surgery, although the improvement is less pronounced than in children with GMFCS levels II and III. SDR should be considered in non-ambulant patients. [ABSTRACT FROM AUTHOR]

Many infancy-onset epilepsies have poor prognosis for seizure control and neurodevelopmental outcome. Ketogenic diets can improve seizures in children older than 2 years and adults who are unresponsive to antiseizure medicines. We aimed to establish the efficacy of a classic ketogenic diet at reducing seizure frequency compared with further antiseizure medicine in infants with drug-resistant epilepsy. In this phase 4, open-label, multicentre, randomised clinical trial, infants aged 1–24 months with drug-resistant epilepsy (defined as four or more seizures per week and two or more previous antiseizure medications) were recruited from 19 hospitals in the UK. Following a 1-week or 2-week observation period, participants were randomly assigned using a computer-generated schedule, without stratification, to either a classic ketogenic diet or a further antiseizure medication for 8 weeks. Treatment allocation was masked from research nurses involved in patient care, but not from participants. The primary outcome was the median number of seizures per day, recorded during weeks 6–8. All analyses were by modified intention to treat, which included all participants with available data. Participants were followed for up to 12 months. All serious adverse events were recorded. The trial is registered with the European Union Drug Regulating Authorities Clinical Trials Database (2013–002195–40). The trial was terminated early before all participants had reached 12 months of follow-up because of slow recruitment and end of funding. Between Jan 1, 2015, and Sept 30, 2021, 155 infants were assessed for eligibility, of whom 136 met inclusion criteria and were randomly assigned; 75 (55%) were male and 61 (45%) were female. 78 infants were assigned to a ketogenic diet and 58 to antiseizure medication, of whom 61 and 47, respectively, had available data and were included in the modifified intention-to-treat analysis at week 8. The median number of seizures per day during weeks 6–8, accounting for baseline rate and randomised group, was similar between the ketogenic diet group (5 [IQR 1–16]) and antiseizure medication group (3 [IQR 2–11]; IRR 1·33, 95% CI 0·84–2·11). A similar number of infants with at least one serious adverse event was reported in both groups (40 [51%] of 78 participants in the ketogenic diet group and 26 [45%] of 58 participants in the antiseizure medication group). The most common serious adverse events were seizures in both groups. Three infants died during the trial, all of whom were randomly assigned a ketogenic diet: one child (who also had dystonic cerebral palsy) was found not breathing at home; one child died suddenly and unexpectedly at home; and one child went into cardiac arrest during routine surgery under anaesthetic. The deaths were judged unrelated to treatment by local principal investigators and confirmed by the data safety monitoring committee. In this phase 4 trial, a ketogenic diet did not differ in efficacy and tolerability to a further antiseizure medication, and it appears to be safe to use in infants with drug-resistant epilepsy. A ketogenic diet could be a treatment option in infants whose seizures continue despite previously trying two antiseizure medications. National Institute for Health and Care Research. [ABSTRACT FROM AUTHOR]

Background: Cerebral palsy (CP) is one of the most common neurological disorders in children and results in lifelong physical impairments. Adults with CP have approximately the same life expectancy as their non-disabled peers, so helping them to stay healthy throughout the life course will have long-term cost benefits via reductions in hospital admissions, long-term care, and unemployment rates. Aim: To explore how adults with CP experience ageing. Design & setting: National online survey given to adults with CP in the UK. Method: The participants were adults with CP. Items for the online survey were taken from existing self-report measures, with additional items developed for the survey. Several domains of functioning were assessed including mobility, dexterity, fatigue, pain, speech, mental health, swallowing and health maintenance/self-care as well as healthcare usage. Data were analysed using χ2 to examine the relationships between the demographic variables and the survey responses. Results: The survey was completed by 395 participants, of whom 74.2% were female and approximately 59.3% aged <45 years. Responders reported having problems with mobility, pain, and fatigue with older participants reporting higher levels of pain and more mobility problems, although the correlations were fairly small. Healthcare usage was surprisingly low. Conclusion: The study found that age was associated with a decline in mobility and a higher level of pain, although the relationships were weak. It is possible that the low healthcare usage among the responders is owing to services not being available to respond to their needs. [ABSTRACT FROM AUTHOR]

Limited funding is available for athletes with disabilities in the United Kingdom. This compounds the barriers to participation and development that already exist. To combat this growing problem, a Multi-Disciplinary Pediatric Adaptive Sports Clinic was formed. Fifteen athletes with disabilities attended the Clinic from November 2017 to November 2019. In our cohort, there were 10 males and 5 females (age range: 13–18 years). Most athletes participated at a grassroots level (n = 9). The range of diagnoses included cerebral palsy, Ehlers Danlos syndrome and congenital hand differences. Forty-four appointments were made after the initial meeting with a 95% attendance rate. Improvements beyond the minimal clinically important differences (MCID) for the Patient Specific Functional Scale, Numerical Pain Rating Scale, and Medical Research Council Manual Muscle Testing Scale were noted in over half of cases. With a focus on injury prevention and strength and conditioning techniques, this clinic supported athletes to successfully compete from a recreational to an elite level across all types of sports and adolescent ages by providing patient-specific regimens. Our case series provides preliminary evidence to suggest the formation of similar clinics that can support athletes with disabilities across a range of sports. [ABSTRACT FROM AUTHOR]

The aims of this study were to describe how and why adults with CP living in the UK and Ireland accessed and used physiotherapy services; to describe the type of physiotherapy accessed and satisfaction with physiotherapy services and to examine the associations between relevant factors. A cross-sectional semi-structured online survey was employed. Participants were adults with CP aged 18 and above living in the UK and Ireland; able to complete an online questionnaire in English independently or with technical or physical assistance. Data were collected from April 2019 to February 2020. Participants (n = 162) were aged 18–74 years. The majority were female (75%) and lived in the UK (83%). Ninety percent of participants reported a need for physiotherapy but only 35% received physiotherapy services. The most common reason for visiting physiotherapy was mobility decline (62%). Satisfaction with the availability and quality of physiotherapy services were 21% and 27%, respectively. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. Adults with CP did not receive the physiotherapy services that they perceived they needed. There is a need to develop physiotherapy services in collaboration with people living with CP. Adults with cerebral palsy (CP) needed physiotherapy services, but were not receiving the physiotherapy services that they perceive they needed. Adults were not satisfied with the availability or quality of physiotherapy services received. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. There is a need to develop physiotherapy services from a life-span perspective for adults living with CP. [ABSTRACT FROM AUTHOR]

To understand physiotherapy and physiotherapy services from the perspectives of adults with cerebral palsy (CP). Twenty-two adults with CP (15 women, 7 men), from across the UK, aged between 23 and 51 years, Gross Motor Function Classification System I-V, were interviewed about their experiences of physiotherapy and physiotherapy services. Participants were recruited through advertisements placed with relevant national organisations. The interviews were transcribed and analysed according to principles of Reflective Lifeworld Research. A second analysis examined the findings in relation to Donabedian's structure-process-outcome framework for healthcare quality. Specialist services for adults with CP were described as scarce, unknowable, complex and disconnected through the life course. Specific problems included; structural dimensions such as access to and organisation of services, signposting to services and access to expert advice; process dimensions including a lack of attention to patients' perspectives, needs, priorities, experience and expertise; and outcome dimensions for example the negative impact of physiotherapy service configurations on health, well-being and quality of life. Study findings support grassroots calls to radically improve and increase physiotherapy services for adults with CP. Accessible and widely available specialist services, information and advice across the life course would do much to address unmet need. Adults with CP found it difficult to identify and access specialised physiotherapy services and to obtain information and advice to help them best manage their condition. Adults with CP need physiotherapy services throughout the different phases of their lives, to meet their present needs, and to anticipate and, where possible, to prevent future needs. Participants highly valued person-centred physiotherapy and we recommend this approach is adopted as the foundational philosophy guiding physiotherapy services and interventions for adults with CP. More specialist physiotherapy services are urgently needed to meet the needs of adults with CP in the UK. [ABSTRACT FROM AUTHOR]

Increased levels of vitamin D in the summer months from natural seasonal variations in sun exposure have been linked to improvements in musculoskeletal health and function in UK populations; however, studies have shown that differences in lifestyles because of disability can inhibit the natural vitamin D increase in these populations. We hypothesized that men with cerebral palsy (CP) will experience smaller increases in 25-hydroxyvitamin D (25(OH)D) from winter to summer and men with CP will not experience any improvements in musculoskeletal health and function during the summer. A longitudinal observational study in 16 ambulant men with CP aged 21.0 ± 1.3 years and 16 healthy, physical activity matched, typically developed controls aged 25.4 ± 2.6 years, completed assessments of serum 25(OH)D and parathyroid hormone during winter and summer. Neuromuscular outcomes included vastus lateralis size, knee extensor strength, 10-m sprint, vertical jumps, and grip strength. Bone ultrasounds were performed to obtain radius and tibia T and Z scores. Men with CP and typically developed controls showed a 70.5% and 85.7% increase in serum 25(OH)D from winter to summer months, respectively. Neither group showed seasonal effect on neuromuscular outcomes muscle strength, size, vertical jump, or tibia and radius T and Z scores. A seasonal interaction effect was seen in the tibia T and Z scores (P <.05). In conclusion, there were similar seasonal increases in 25(OH)D observed in men with CP and typically developed controls, but serum 25(OH)D levels were still considered insufficient to improve bone or neuromuscular outcomes. [Display omitted] Cerebral palsy (CP) is a brain injury in utero that commonly leads to muscle spasticity that reduces range of motion (RoM) and alters gait, resulting in poor musculoskeletal (MSK) health. Vitamin D may improve MSK health but seasonal changes in the United Kingdom cause these to fluctuate. Sixteen men with CP were measured for vitamin D and MSK outcomes during winter and summer. There was a 70.5% increase in vitamin D from winter to summer but showed no seasonal changes on MSK outcomes. [ABSTRACT FROM AUTHOR]

Background: Early intervention in cerebral palsy could improve motor outcome but is only possible following early identification of those affected. There is a need for training of healthcare professionals (HCPs) in early detection of atypical motor development. We developed a video-based e-learning course - Training in Early Detection for Early Intervention (TEDEI) - to address this need. We evaluated whether participation in the course improved knowledge and changed behaviour of HCPs. Methods: Participants were 332 HCPs (38% physiotherapists, 35.8% occupational therapists), predominantly UK-based (83.7%). Analysis of training effects used mixed methods and followed Kirkpatrick's model, first assessing "Reaction" through a feedback questionnaire involving Likert scale and free text responses (n = 141). "Learning" was assessed through multiple choice questions (MCQs): all 332 HCPs completed a pre-course quiz of 6 MCQs followed by the course, then a 16 item post-course quiz including the 6 pre-course questions. "Behaviour" was assessed through in-depth qualitative interviewing of 23 participants. Results: "Reaction": TEDEI was found to be effective, engaging and well structured. "Learning": Scores improved significantly between the pre-course and post-course quiz, median improvement 1/6 (z = 5.30, p < 0.001). HCPs also reported a perceived improvement in their knowledge, confidence and ability. "Behaviour": HCPs could see how TEDEI would improve their clinical practice through having an assessment framework, ways of working better with parents, and developing observational skills useful for tele-health assessments. Conclusion: Our brief e-learning course on early detection for early intervention was viewed positively, improved knowledge and showed potential for positive changes in practice. Kirkpatrick's model provided a useful framework for undertaking this evaluation. [ABSTRACT FROM AUTHOR]

The aim of this retrospective study was to establish the incidence and associated risk factors for cerebral palsy (CP) at a tertiary maternity hospital in the UK between 2000–2016. We identified CP patients from our electronic coding system using ICD codes. Multiple independent variables for all live births born during this period were included in a univariate and multivariate logistic regression (LR) to identify associations between these and CP. We identified 130 CP children out of 87318 live births. Univariate LR determined male sex, birth weight <2500 g, gestational age of ≤36 weeks, Small-for-gestational-age, 1-and 5-minute Apgar score <9, neonatal intensive care unit (NICU) admission, multiple births, breech, emergency Caesarean section and delivery between 16.00–20.00 as significant risk factors. In the multivariate LG male sex, 1-minute Apgar <9, 5-minute Apgar <5 and admission to NICU remained as significant risk factors. The risk for delivery between 16.00–19.59 was nearly significant. There was a significant association between NICU admission and moderate-severe CP. Our CP incidence of 0.149% is at the lower end of the incidence spectrum of international comparisons. What is already known on this subject? The historic reported incidence of cerebral palsy (CP) ranges from 1.1 to 3.6 cases per 1000 live births, with birth weight <2500g, birth <28 weeks of gestation, Apgar scores ≤4 and male sex having been associated with an increased incidence. What do the results of this study add? This is a large series of live births from a tertiary maternity hospital with a comparative low CP incidence of 0.149%, despite the hospital dealing with many complex pregnancies and deliveries. We identified that already an Apgar score of <9 at 1 minute (significant) and births between 16.00–20.00 (non-significant) were associated with an increased risk to develop CP but not with a specific day of the week. What are the implications of these findings for clinical practice and/or future research? Our significant association between a 1-minute Apgar score of <9 and CP stresses the importance of immediate efficient resuscitation already for babies with a 1-minute score as high as 8. The increased CP risk for deliveries between 16.00–19.59 may be linked to staffing issues and needs further exploration. New data from a single maternity hospital Analysis of risk factors GMFCS distribution [ABSTRACT FROM AUTHOR]

Background: Ambulant children with cerebral palsy (CP) undertake physiotherapy to improve balance and walking. However, there are no relevant clinical guidelines to standardize usual physiotherapy care in the United Kingdom. A consensus process can be used to define usual physiotherapy care for children with CP. The resulting usual care checklist can support the development of clinical guidelines and be used to measure fidelity to usual care in the control groups of trials for children with CP. Methods: Twelve expert physiotherapists were recruited. In Phase 1, statements on usual care were developed using a survey and two nominal groups. Phase 2 included a literature review to support usual physiotherapy interventions. Phase 3 used a confirmatory survey, which also captured changes to provision during the COVID‐19 pandemic. Consensus was calculated by deriving the mean of the deviations from the median score (MDM). High consensus was deemed to be where MDM < 0.42. Results: Physiotherapists reached high consensus on five outcome measures (MDM range 0–0.375) and nine areas of assessment (MDM range 0–0.25). Physiotherapists reached moderate consensus on task‐specific training (MDM = 0.75), delivered at weekly intensity for 4–6 weeks (MDM = 0.43). There was high consensus (MDM = 0) that children should participate in modified sport and fitness activities and that children with Gross Motor Function Classification System Level III should be monitored on long‐term pathways (MDM = 0.29). Conclusions: Physiotherapists reached consensus on two usual care interventions, and a checklist was developed to inform the control groups of future randomized controlled trials. Further consensus work is required to establish clinical guidelines to standardize usual physiotherapy care in the United Kingdom. [ABSTRACT FROM AUTHOR]

Background: An improved understanding of the current practice of standing frame use may have implications for supporting parents in managing standing frames. We aimed to investigate how parents of children with cerebral palsy perceive and manage standing frame use in home settings., Methods: We conducted a mixed methods study with an explanatory sequential design, first collecting and analysing quantitative questionnaire data and then using these results to inform a qualitative follow-up phase to explain them. The questionnaire was answered by 103 parents of children with cerebral palsy across five countries, Denmark, Norway, Great Britain, Canada and the United States, and 12 Danish families participated in the subsequent interviews. A descriptive analysis was conducted using the questionnaire data. The qualitative data were analysed using a directed content analysis, enabling integration of the quantitative and qualitative data., Results: The quantitative analysis showed that 89% of the parents felt confident with their child's standing frame, and 82% felt they had sufficient knowledge about how their child's standing frame could/should be used. However, the qualitative analysis showed that even when feeling confident, the parents experienced insecurity regarding whether their child was positioned correctly, and being responsible for positioning was challenging., Conclusion: Our study implies a need for providing educational materials to assist the parents in ensuring optimal positioning of their child in the standing frame to decrease insecurity. Additionally, our study suggests a need to provide more thorough information about the benefits of using a standing frame and ensure alignment of expectations in relation to the child's prognosis of functional independence., (© 2024 The Author(s). Child: Care, Health and Development published by John Wiley & Sons Ltd.)

Introduction: When studying the effect of ankle-foot orthoses (AFOs) on gait, it is important to know their sagittal plane stiffness. However, there are no established thresholds for stiffness of nonarticulated AFOs designed to be rigid. If wanting to implement published algorithms for ankle-foot orthosis-footwear combinations (AFO-FCs), the AFOs must be equally as stiff as those of the developer of the published AFO-FC algorithms. Hence, the aim of this work was to compare the sagittal plane stiffness of AFOs designed to be rigid, made for a clinical trial in the United States, and following algorithms for AFO-FC designs, to those made and used clinically in the United Kingdom by the developer of the AFO-FC algorithms. Materials and Methods : Stiffness of nine pediatric polypropylene AFOs was tested (United Kingdom, six; United States, three). A computer-controlled motorized device was used in which all AFOs were clamped with the calf shell in a fixed vertical component and the foot section in a rotating plate. Each AFO was tested for three trials, loading the foot plate 30 Nm toward dorsiflexion and 20 Nm toward plantarflexion. Torque-angle graphs were plotted, and deflection and stiffness were compared descriptively across AFOs. Results : Average deflection of AFOs was 3.42[degrees] +/- 0.83[degrees] for United Kingdom and 4.81[degrees] +/- 1.05[degrees] for United States. Average stiffness of AFOs was 14.34 +/- 3.34 Nm/[degrees] for United Kingdom and 10.30 +/- 1.92 Nm/[degrees] for United States. Conclusions : All tested AFOs deflected only a few degrees in either direction (range, 2.59[degrees]-6.02[degrees]), providing the first information reported for the stiffness of rigid pediatric nonarticulated AFOs. Overall, the UK AFOs were stiffer and deflected less than the US study AFOs. AFO design features should be carefully considered as they likely influence sagittal plane stiffness and deflection under load. [ABSTRACT FROM AUTHOR]

Background: Swallowing impairment (dysphagia) following brain injury can lead to life-threatening complications such as dehydration, aspiration pneumonia and acute choking episodes. In adult therapeutic practice, there is research and clinical evidence to support the use of swallowing exercises to improve swallowing physiology in dysphagia; however, the use of these exercises in treating children with dysphagia is largely unexplored. Fundamental questions remain regarding the feasibility and effectiveness of using swallowing exercises with children. This review aims to outline the published literature on exercise-based treatment methods used in the rehabilitation of dysphagia secondary to an acquired brain injury across the lifespan. This will allow the range and effects of interventions utilised to be mapped alongside differential practices between adult and child populations to be formally documented, providing the potential for discussions with clinicians about which rehabilitative interventions might be appropriate for further trial in paediatrics. Methods: This study will use a scoping review framework to identify and systematically review the existing literature using Joanna Briggs Institute (JBI) and Preferred Reporting Items for Systematic Reviews (PRISMA) scoping review guidelines. Electronic databases (MEDLINE, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Allied and Complementary Medicine Database (AMED)), grey literature and the reference lists of key texts including systematic reviews will be searched. Information about the rehabilitation design, dosage and intensity of exercise programmes used as well as demographic information such as the age of participants and aetiology of dysphagia will be extracted. The number of articles in each area and the type of data source will be presented in a written and visual format. Comparison between the literature in adult and child populations will be discussed. Discussion: This review is unique as it directly compares dysphagia rehabilitation in adults with that of a paediatric population in order to formally identify and discuss the therapeutic gaps in child dysphagia rehabilitation. The results will inform the next stage of research, looking into the current UK-based speech and language therapy practices when working with children with acquired dysphagia. Systematic review registration: Open science framework osf.io/ja4dr [ABSTRACT FROM AUTHOR]

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. Methods: Content analysis of English‐language news media articles including the search term 'rhizotomy' in the Factiva database published July 2015 to July 2018 in online or print form in Canada, New Zealand, Australia, United States of America and the United Kingdom. Results: One hundred and eighty‐six articles were identified describing 91 different children (45 male), almost all with cerebral palsy, median age 4 years old. One hundred and twenty‐six articles were written prior to surgery; in many articles, SDR surgery involved travel overseas and/or fundraising. SDR was described universally in positive terms with little discussion of risks. Content of articles variably included the specialized nature of SDR, parental frustration with their local health system and their hope for positive outcomes. There was geographical variation in both numbers of articles and content. Conclusions: SDR is a common focus in cerebral palsy news media articles in some countries. Framing in these articles supports SDR as a beneficial and specialized procedure and may lead families to believe they need to work outside their local health systems. As news media are likely an important influence on families' attitudes to SDR, clinicians should be aware of this influence. [ABSTRACT FROM AUTHOR]

Introduction: Evidence-based occupational therapy home programmes for children with unilateral cerebral palsy have demonstrated efficacy; however, uptake into routine practice is varied. The aim of this study was to gain a deeper understanding of the therapist-perceived supports and barriers to using occupational therapy home programmes for children with unilateral cerebral palsy, based on evidence of best practice in the United Kingdom. Method: Fourteen occupational therapists completed semi-structured telephone interviews. Using a qualitative framework analysis approach, support and barrier factors were indexed against the Theoretical Domains Framework, before being categorised more broadly using the Capability, Opportunity, Motivation and Behaviour Model. Findings: Common supports included: (a) strong leadership within the team to facilitate the translation of occupational therapy home programmes and evidence-based interventions into service-specific protocols; (b) knowledge exchange within professional networks and (c) mentorship. Common barriers included: (a) lack of resources; (b) restricted opportunities to review occupational therapy home programmes and (c) difficulties keeping up-to-date with the evidence in this area. Conclusion: To be effective, occupational therapy home programmes need to be based on evidence of best practice; analysis indicated an urgent need to capture outcomes, record parental practice, further integrate 'occupation' within goal-setting, and develop use of conceptual models of practice to both enhance family-centred care and articulate the profession's unique contribution. [ABSTRACT FROM AUTHOR]

In the trials, a substantial proportion of newborns who underwent therapeutic hypothermia (TH) had an adverse outcome after hypoxic-ischaemic encephalopathy (HIE). Cooled babies were noted to have fewer cerebral lesions on MRI but when present lesions were predictive of adverse outcome. We investigate the predictive value of cerebral MRI in babies who undergo cooling in the clinical setting outside of the clinical trials in a prospective UK cohort. Of 75 babies recruited from four centres, neurodevelopment was available for 69 (92%) with 29% (20/69) being abnormal. The unfavourable MRI group (n = 22) had significantly lower motor (p < 0.001), language (p < 0.001) and cognition (p < 0.001) scores on Bayley-III assessment, compared to the favourable MRI group (n = 47). On multiple regression there was a significant relationship between basal ganglia and thalami abnormality and motor (p = 0.002), cognition (p = 0.011) and language (p = 0.013) outcomes. Half of the babies who had an MRI predictive of adverse outcome (11/22) had highest grade cerebral palsy. Cerebral MRI had 95% sensitivity, 94% specificity, 91% PPV and 98% NPV in predicting neurodevelopment. In this clinical cohort, fewer children had adverse neurodevelopment after TH compared to the TH trials. However, half the children who had an MRI predictive of adverse ND outcome had the most severe form of cerebral palsy. In this cohort, cerebral MRI was found to be highly predictive of neurodevelopmental outcome. • In this cohort, conventional cerebral MRI is highly predictive of neurodevelopmental outcome. • 73% of babies with cerebral MRI predictive of adverse outcome developed cerebral palsy. • Conventional cerebral MRI provides useful prognostic information for counselling families. [ABSTRACT FROM AUTHOR]

Anecdotal evidence suggests the use of bolus tube feeding is increasing in the long-term home enteral tube feed (HETF) patients. A cross-sectional survey to assess the prevalence of bolus tube feeding and to characterise these patients was undertaken. Dietitians from ten centres across the UK collected data on all adult HETF patients on the dietetic caseload receiving bolus tube feeding (n 604, 60 % male, age 58 years). Demographic data, reasons for tube and bolus feeding, tube and equipment types, feeding method and patients' complete tube feeding regimens were recorded. Over a third of patients receiving HETF used bolus feeding (37 %). Patients were long-term tube fed (4·1 years tube feeding, 3·5 years bolus tube feeding), living at home (71 %) and sedentary (70 %). The majority were head and neck cancer patients (22 %) who were significantly more active (79 %) and lived at home (97 %), while those with cerebral palsy (12 %) were typically younger (age 31 years) but sedentary (94 %). Most patients used bolus feeding as their sole feeding method (46 %), because it was quick and easy to use, as a top-up to oral diet or to mimic mealtimes. Importantly, oral nutritional supplements (ONS) were used for bolus feeding in 85 % of patients, with 51 % of these being compact-style ONS (2·4 kcal (10·0 kJ)/ml, 125 ml). This survey shows that bolus tube feeding is common among UK HETF patients, is used by a wide variety of patient groups and can be adapted to meet the needs of a variety of patients, clinical conditions, nutritional requirements and lifestyles. [ABSTRACT FROM AUTHOR]

Objective: The Viking Speech Scale (VSS) reliably classifies the speech performance of children with cerebral palsy. This paper aims to establish the construct validity of the VSS by testing the extent to which percentage intelligibility in single word speech and connected speech predicts VSS rating. Patients and Methods: This is a secondary analysis of two sets of anonymised data collected for previous research. The full data set comprised 79 children with cerebral palsy from the US (n = 43) and the UK (n = 36): (43 boys, 36 girls); mean age 7.2 years (SD 3.3). Single word intelligibility was measured using the TOCS+ words for US children and Children's Speech Intelligibility Measure for the UK children. Connected speech intelligibility was measured from a subset of repeated sentences in TOCS+ for US children and picture description for the UK children. We used ordinal logistic regression to examine prediction of VSS rating by percentage single word and connected speech intelligibility scores in both samples. Results: Percentage single word intelligibility and connected speech intelligibility predicted VSS rating in univariate and multivariate regression models for both the US and UK samples. Conclusion: Intelligibility predicts VSS for both single words and connected speech, establishing the construct validity of VSS. [ABSTRACT FROM AUTHOR]

Childbirth should be a very happy, positive and rewarding experience for the woman, her partner and her family as well as for health-care providers. Women and their families have every right to expect that bringing a new life into this world would be a safe process. However, the latest 'Each Baby Counts' Report published by the Royal College of Obstetricians and Gynaecologists in November 2018 has highlighted that out of nearly 700,000 babies born in the UK, 1123 babies died or sustained a severe brain damage during the intrapartum period (i.e., during labour). Despite excellent antenatal surveillance in the UK with regular antenatal clinic visits, ultrasound scans and blood tests as well as the free availability of the cardiotocograph machines to monitor the foetal heart rate during labour, very sadly 124 babies had died during labour. Moreover, 145 babies were born alive but died within the first days after birth, and 854 babies met the criteria for severe brain damage. According to this latest 'Each Baby Counts' Report, 71% of babies might have a different outcome with different care, and cardiotocograph misinterpretation accounted for 34% of all cases of poor perinatal outcomes. It is no longer acceptable to continue 'counting' our poor perinatal outcomes and produce glossy reports such as the 'Each Baby Counts' without scrutinising the underlying causes which are forcing excellent and caring midwives and obstetricians to make bad mistakes in the labour wards. [ABSTRACT FROM AUTHOR]

Introduction: Occupational therapy home programmes for children with cerebral palsy have a robust evidence-base, but their content and usage in United Kingdom practice is unknown. Method: A national online survey questionnaire was conducted with occupational therapists to explore their current occupational therapy home programme practices, and attitudes toward using home programmes with children with cerebral palsy. Recruitment was through members of two sections of the Royal College of Occupational Therapists, a University's Fieldwork-Supervisor's Database and self-selection following promotion on occupational therapy networks, social media and newsletters. Results: Of all survey respondents (n = 123), the majority of respondents (n = 74; 60%) used occupational therapy home programmes. The uptake and use of evidence-based home programme content varied, revealing evidence-practice gaps. Respondents clearly articulated their professional reasoning and acknowledged benefits of using home programmes. However, they reported barriers to implementing them within a family-centred framework, citing time constraints, lack of knowledge, skills and training, and insufficient support. Conclusion: Occupational therapists report challenges to implementing evidence-based interventions and the routine, systematic application of a range of standardised measurement tools pre/post occupational therapy home programmes. Such tools would enhance quality outcomes for children with cerebral palsy and their families. However, occupational therapists indicated the need for greater organisational support, further education and skill development in these areas. [ABSTRACT FROM AUTHOR]

Selective dorsal rhizotomy (SDR) is used to improve spasticity, gait, and pain in children with spastic diplegia. There is growing evidence supporting its long-term benefits in terms of functional outcomes, independence, and quality of life. There is, however, little contemporary work describing the surgical morbidity of this irreversible procedure. The purpose of this study is to evaluate the surgical outcomes and complications of SDR at a single United Kingdom center. Demographics, surgical, postoperative, and follow-up data for all patients undergoing SDR between 2011 and 2016 were collected from medical records. Preoperative Gross Motor Function Classification System levels in 150 consecutive patients were II (35%), III (65%), and IV (1%). Median age was 6 years and 58% were male patients. There were no deaths, cerebrospinal fluid leaks, returns to theater, or readmissions within 30 days. There were no new motor or sphincter deficits. Postoperative neuropathic pain was reported by 5.3% and sensory symptoms by 8.7%. Other complications included: postoperative nausea and vomiting (19.3%), superficial wound infection (3.3%), urinary retention (1.3%), headache (6.7%), and urine or chest infection (4.7%). Follow-up data were available for all patients (93% to 12 months, 72% to 24 months). Persistent neuropathic symptoms were reported in 6.5% at 24 months. SDR using a single-level approach is a safe procedure with low surgical morbidity. This study complements the growing evidence base in support of SDR for spastic diplegia and should help inform decisions when considering treatment options. [ABSTRACT FROM AUTHOR]

Background: Multimorbidity [two or more conditions in addition to intellectual disability (ID)] is known to be more common among people with ID. However, the relationship between multimorbidity and lifestyle factors is currently unknown. The aim of this study was to determine the prevalence of multimorbidity in a population of adults with ID. We also aimed to identify risk factors, including lifestyle factors, for multimorbidity in this population. Methods: This was a cross‐sectional analysis using data from a diabetes screening study of 920 adults aged 18–74 years with ID living in Leicestershire, UK. We described comorbidities and the prevalence of multimorbidity in this population. We explored the relationship between multimorbidity and age, gender, ethnicity, severity of ID, socio‐economic status, physical activity, sedentary behaviour, fruit and vegetable consumption and smoking status using multiple logistic regression. Results: The prevalence of multimorbidity was 61.2% (95% CI 57.7–64.7). Multimorbidity was independently associated with being female (P < 0.001) and severe/profound ID (P = 0.004). Increasing age was of borderline significance (P = 0.06). Individuals who were physically inactive or sedentary were more likely to be multimorbid, independent of ability to walk, age, gender, severity of ID, ethnicity and socio‐economic status (adjusted OR = 1.91; 95% CI 1.23–2.97; P = 0.004 and OR = 1.98; 95% CI 1.42–2.77; P < 0.001). After excluding probable life‐long conditions (autism spectrum conditions, attention deficit hyperactivity disorders, epilepsy, cerebral palsy and other paralytic syndromes) as contributing comorbidities, the effect of sedentary behaviour, but not physical activity, remained (P = 0.004). We did not observe a relationship between multimorbidity, fruit and vegetable consumption and smoking status. Conclusions: Multimorbidity presents a significant burden to people with ID. Individuals who were physically inactive or sedentary were more likely to be multimorbid, but further work is recommended to explore the relationship between multimorbidity and lifestyle factors using standardised objective measures. [ABSTRACT FROM AUTHOR]

No amount of symposia and clinical meetings and formal management will make a clinical difference unless obstetric units regularly and ruthlessly self-assess to curb medical negligence. Court case, which represent a small portion of substandard outcomes, not infrequently reveal a serious lack of obstetric judgment as well as paucity of knowledge which are compatible with unsupervised responsibility of labour ward duties. One UK court case ACF 32(2): 09/2019 presents a factual picture of obstetric practice which is difficult to reconcile with modern UK practice. This article limits itself to a number of facts as presented to court by the claimant, and the comments are directed purely at the resulting implications. These facts as stated are seriously worrying in themselves as they reflect practice well below the minimum care to be expected in a modern country and are far from what is recommended by the Royal College of Obstetricians and Gynaecologists and indeed every day standards. The article recommends the shifting of focus from individual to collective or unit responsibility to achieve better care. In any case where gross mismanagement is found, there should be a wider check on practices within the whole obstetric unit. [ABSTRACT FROM AUTHOR]

Background: Assisted reproductive technologies (ART) have increased the incidence of multiple births, which can have a negative impact on maternal and offspring health. The study aimed to investigate the association between genetically predicted multiple birth and the risk of 42 common diseases of the nervous, psychiatric, cardiovascular, respiratory, digestive, and endocrine systems., Methods: The study utilized two-sample Mendelian randomization (MR) analysis to explore the potential causal relationship between genetically predicted multiple birth and the genetically predicted risk of diseases. The study used the FinnGen and UK Biobank datasets for analysis., Results: The study found no significant causal relationship between multiple birth and psychiatric disorders. However, the lower limits of the 95% confidence intervals for bipolar affective disorder and anxiety disorders were not robust, indicating a need for further investigation. The study found that multiple birth may be a strong risk factor for infantile cerebral palsy, and caution is necessary in both natural and ART multiple births. The study revealed a potential causal relationship between multiple birth and coronary heart disease, ischemic heart disease, and deep vein thrombosis, which may be related to abnormal intrauterine environments in multiple pregnancies. Surprisingly, multiple birth appears to have a protective effect against some respiratory diseases, such as chronic obstructive pulmonary disease and asthma., Conclusions: The study highlights the need for caution regarding the risk of infantile cerebral palsy, cardiovascular diseases, and psychiatric disorders in multiple birth. Our study can lead to the development of preventive strategies and improved clinical management for affected infants., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Objectives: To describe physiotherapy management to improve or maintain lower-limb function among adolescents with cerebral palsy, classified in Gross Motor Function Classification System levels I-III, in the United Kingdom (UK). Methods: A list of interventions was identified using a nominal group technique and developed into a survey, which was distributed to approximately 2,100 pediatric physiotherapists in the UK through the Association of Pediatric Chartered Physiotherapists and a private physiotherapy clinic in London between April and June 2015. One-hundred and thirty-five physiotherapists completed the survey. Survey respondents indicated how frequently they used each intervention (i.e., “frequently,” “sometimes,” “rarely,” and “never”) in the past year. Results: Provision of explanations to the child, liaison with families, liaison with health professionals, provision of advice to schools, and stretching were the most frequently used interventions with 90%, 90%, 86%, 79%, and 76% of respondents, respectively, reporting that they frequently used each. The interventions most commonly reported as “never” used were conductive education (88%), MOVE programme (85%), functional electrical stimulation (82%), body-weight supported treadmill training (80%), and rebound therapy (71%). Conclusions: This study suggests that a large number of interventions are used by physiotherapists in the United Kingdom to improve or maintain lower-limb function among adolescents with CP, not all of which are evidence-based. [ABSTRACT FROM AUTHOR]

Abstract In the last decade preterm birth rates have continued to rise hand in hand with improving neonatal care. Unfortunately rates of severe disability have remained static. National benchmarking of key outcomes shows significant variations in adaptation of best practices across United Kingdom (UK). While emerging technologies give us a glimpse of fascinating possibilities, widespread adoption of evidence-based interventions should remain a priority. In this article we have attempted to outline mechanisms of preterm brain injury and identify the most promising strategies currently available to minimize it. Quality improvement strategies (QI) that can help perinatal teams adopt best practices and promising new therapies are discussed. [ABSTRACT FROM AUTHOR]

Abstract: Background: Standing frames are used for children with cerebral palsy (CP). They may improve body structure and function (e.g., reducing risk of hip subluxation, and improving bladder and bowel function), improving activity (e.g., motor abilities) and participation (e.g., interaction with peers), but there is little evidence that they do. We aimed to identify current UK standing frame practice for children with CP and to understand stakeholder views regarding their clinical benefits and challenges to use. Method: Three populations were sampled: clinicians prescribing standing frames for children with CP (n = 305), professionals (health and education) working with children with CP who use standing frames (n = 155), and parents of children with CP who have used standing frames (n = 91). Questionnaires were developed by the co‐applicant group and piloted with other professionals and parents of children with CP. They were distributed online via clinical and parent networks across the UK. Results: Prescribing practice was consistent, but achieving the prescribed use was not always possible. Respondents in all groups reported the perceived benefits of frames, which include many domains of the International Classification of Functioning Disability and Health for Children and Youth. Challenges of use are related to physical space and child‐reported pain. Conclusions: These survey findings provide information from key stakeholders regarding current UK standing frame practice. [ABSTRACT FROM AUTHOR]

Abstract: Background: The speech intelligibility of children with dysarthria and cerebral palsy has been observed to increase following therapy focusing on respiration and phonation. Aims: To determine if speech intelligibility change following intervention is associated with change in acoustic measures of voice. Methods & Procedures: We recorded 16 young people with cerebral palsy and dysarthria (nine girls; mean age 14 years, SD = 2; nine spastic type, two dyskinetic, four mixed; one Worster–Drought) producing speech in two conditions (single words, connected speech) twice before and twice after therapy focusing on respiration, phonation and rate. In both single‐word and connected speech we measured vocal intensity (root mean square—RMS), period‐to‐period variability (Shimmer APQ, Jitter RAP and PPQ) and harmonics‐to‐noise ratio (HNR). In connected speech we also measured mean fundamental frequency, utterance duration in seconds and speech and articulation rate (syllables/s with and without pauses respectively). All acoustic measures were made using Praat. Intelligibility was calculated in previous research. Outcomes & Results: In single words statistically significant but very small reductions were observed in period‐to‐period variability following therapy: Shimmer APQ –0.15 (95% CI = –0.21 to –0.09); Jitter RAP –0.08 (95% CI = –0.14 to –0.01); Jitter PPQ –0.08 (95% CI = –0.15 to –0.01). No changes in period‐to‐period perturbation across phrases in connected speech were detected. However, changes in connected speech were observed in phrase length, rate and intensity. Following therapy, mean utterance duration increased by 1.11 s (95% CI = 0.37–1.86) when measured with pauses and by 1.13 s (95% CI = 0.40–1.85) when measured without pauses. Articulation rate increased by 0.07 syllables/s (95% CI = 0.02–0.13); speech rate increased by 0.06 syllables/s (95% CI = < 0.01–0.12); and intensity increased by 0.03 Pascals (95% CI = 0.02–0.04). There was a gradual reduction in mean fundamental frequency across all time points (–11.85 Hz, 95% CI = –19.84 to –3.86). Only increases in the intensity of single words (0.37 Pascals, 95% CI = 0.10–0.65) and reductions in fundamental frequency (–0.11 Hz, 95% CI = –0.21 to –0.02) in connected speech were associated with gains in intelligibility. Conclusions & Implications: Mean reductions in impairment in vocal function following therapy observed were small and most are unlikely to be clinically significant. Changes in vocal control did not explain improved intelligibility. [ABSTRACT FROM AUTHOR]