Understanding social cognition in children with cerebral palsy: exploring the relationship with executive functions and the intervention outcomes in a randomized controlled trial.

Children with Cerebral Palsy (CP) experience Social Cognition (SC) difficulties, which could be related to executive functioning. While motor interventions are common, there is limited knowledge about the impact of cognitive interventions on SC in this population. This study examined the relationship between SC and Executive Function (EF) skills and the effectiveness of an EF intervention that included some SC tasks for improving SC in children with CP. SC and EF domains were assessed in 60 participants with CP (30 females; 8-12 years). The relationship between SC and EF baseline scores was analyzed by bivariate correlations and contingency tables. Participants were matched by age, sex, motor ability, and intelligence quotient and randomized into intervention or control groups. The intervention group underwent a 12-week home-based computerized EF intervention. Analysis of covariance was used to examine differences in SC components between groups at post-intervention and 9 months after. Significant positive correlations were found between the SC and EF scores. The frequencies of impaired and average scores in SC were distributed similarly to the impaired and average scores in EFs. The intervention group showed significant improvements in Affect Recognition performance post-intervention, which were maintained at the follow-up assessment, with a moderate effect size. Long-term improvements in Theory of Mind were observed 9 months after. CONCLUSIONS: This study highlights the association between SC and EFs. A home-based computerized cognitive intervention program improves SC in children with CP. Including SC tasks in EF interventions may lead to positive short- and long-term effects for children with CP. CLINICAL TRIAL REGISTRATION: NCT04025749 retrospectively registered on 19 July 2019. WHAT IS KNOWN: • Executive functions and social cognition are associated with social and community participation in people with cerebral palsy. • A home-based computerized cognitive intervention can improve the executive functioning of children with cerebral palsy. WHAT IS NEW: • Social cognition performance is related to core and higher-order executive functions. • A home-based computerized executive function intervention, including social cognition tasks, has positive short- and long-term effects on social cognition skills in children with cerebral palsy.

Respiratory Comorbidities and Complications of Cerebral Palsy.

Respiratory complications are the most frequent cause of morbidity, mortality, and poor quality of life in children with cerebral palsy (CP) and represent the leading cause of hospitalizations. Several factors negatively influence the respiratory status of these children: lung parenchymal alterations and factors modifying the pulmonary pump function of chest and respiratory muscles, as well as concomitant pathologies that indirectly affect the respiratory function, such as sleep disorder, malnutrition, epilepsy, and pharmacological treatments. Early management of respiratory complications can improve the global health of children with CP and enhance quality of life for them and their caregivers.

The everydayness of falling: consequences and management for adults with cerebral palsy across the life course.

PURPOSE: To explore the cause, influences and consequences of falling for adults with cerebral palsy (CP) across their life course, and how this is managed. MATERIALS AND METHODS: We used interview data from a multimethod UK study exploring the effects of ageing with CP and healthcare across the life course. Twenty-six participants were recruited and interviewed using various digital platforms to maximise inclusive participation in the UK. Follow-up email semi-structured interviews were conducted to further explore experiences of falls. Transcribed interviews were analysed thematically. RESULTS: Falling and fear of falling (FoF) is problematic for over half of the participants in the sample. They perceived falls and FoF as limiting their participation, autonomy and independence in employment, social and cultural activities. Participants used their own management strategies, due to limited specialist interventions or practitioner knowledge to manage or prevent falls. Practices, such as the use of a wheelchair or avoiding activities prompted changes to relationships and identity. CONCLUSIONS: Falling for adults with CP happens earlier in life compared to the general population. Adults with CP may benefit from specialist falls prevention services to help maintain muscle strength and balance. Research is needed to evaluate effective interventions for people with CP.

Falling negatively impacts on the lives and identities of people with cerebral palsy, including younger adults.In other areas such as services for older people, or those who have experienced stroke, rehabilitation services have helped people reduce falls rates through maintaining strength and balance.Falls prevention rehabilitation services are needed for people with cerebral palsy and should include relevant mobility devices and assistive technologies while maintaining social participation and quality of life.

Knee Angle Estimation from Surface EMG during Walking Using Attention-Based Deep Recurrent Neural Networks: Feasibility and Initial Demonstration in Cerebral Palsy.

Accurately estimating knee joint angle during walking from surface electromyography (sEMG) signals can enable more natural control of wearable robotics like exoskeletons. However, challenges exist due to variability across individuals and sessions. This study evaluates an attention-based deep recurrent neural network combining gated recurrent units (GRUs) and an attention mechanism (AM) for knee angle estimation. Three experiments were conducted. First, the GRU-AM model was tested on four healthy adolescents, demonstrating improved estimation compared to GRU alone. A sensitivity analysis revealed that the key contributing muscles were the knee flexor and extensors, highlighting the ability of the AM to focus on the most salient inputs. Second, transfer learning was shown by pretraining the model on an open source dataset before additional training and testing on the four adolescents. Third, the model was progressively adapted over three sessions for one child with cerebral palsy (CP). The GRU-AM model demonstrated robust knee angle estimation across participants with healthy participants (mean RMSE 7 degrees) and participants with CP (RMSE 37 degrees). Further, estimation accuracy improved by 14 degrees on average across successive sessions of walking in the child with CP. These results demonstrate the feasibility of using attention-based deep networks for joint angle estimation in adolescents and clinical populations and support their further development for deployment in wearable robotics.

Kinematic upper limb analysis outperforms electromyography at grading the severity of dystonia in children with cerebral palsy.

BACKGROUND: Severity of dyskinesia in children with cerebral palsy is often assessed using observation-based clinical tools. Instrumented methods to objectively measure dyskinesia have been proposed to improve assessment accuracy and reliability. Here, we investigated the technique and movement features that were most suitable to objectively measure the severity of dystonia in children with cerebral palsy. METHODS: A prospective observational study was conducted with 12 participants with cerebral palsy with a predominant motor type of dyskinesia, spasticity, or mixed dyskinesia/spasticity who had upper limb involvement (mean age: 12.6 years, range: 6.7-18.2 years). Kinematic and electromyography data were collected bilaterally during three upper limb tasks. Spearman rank correlations of kinematic or electromyography features were calculated against dystonia severity, quantified by the Dyskinesia Impairment Scale. FINDINGS: Kinematic features were more influential compared to electromyography features at grading the severity of dystonia in children with cerebral palsy. Kinematic measures quantifying jerkiness of volitional movement during an upper limb task with a reaching component performed best (|rs| = 0.78-0.9, p < 0.001). INTERPRETATION: This study provides guidance on the types of data, features of movement, and activity protocols that instrumented methods should focus on when objectively measuring the severity of dystonia in children with cerebral palsy.

Dyskinetic Cerebral Palsy in Children: Clinical Perspectives on Common Comorbidities and Health-Related Quality of Life.

BACKGROUND: The data on specific comorbidities in children with dyskinetic cerebral palsy (DCP) is limited. We evaluated the pattern of comorbidities and health related quality of life (HRQOL) in these children and compared them between etiological and motor impairment subgroups. METHODOLOGY: This cross-sectional study was conducted over 18 months in children with DCP of both sex, and age between one and 14 years. Comorbidities were assessed using standardized scales such as gross motor functioning scale (GMFCS), developmental profile-3 (DP-3), developmental behaviour checklist, sleep behaviour questionnaire (SBQ), and caregiver questionnaire. RESULTS: Sixty-five children with DCP were evaluated (hyperbilirubinemia n = 43, 66% and perinatal asphyxia n = 19, 29%). The majority of children were severely affected in gross motor functioning (level IV 29.2% and level V 53.8%). Epilepsy was seen in 21.5% of cases (19% in hyperbilirubinemia and 32% in asphyxia, p = 0.4). The mean age of onset of seizures was 15.4 + 20.6 months (range 2-72). Visual problems were seen in 54% of cases and included upgaze palsy, squint, refractive error, optic atrophy and cortical blindness. A significant proportion of children with hyperbilirubinemia had upgaze palsy as compared to those with perinatal asphyxia (70% vs. 32%, p 0.01). Rest of the visual problems were not significantly different between the two etiological subgroups. Drooling (87.6%), protein-energy malnutrition (66.6%), and reflux (57%) were the most common gastrointestinal problems in children with DCP. Children with DCP showed problems in social relating (33.8%), anxiety (26.2%), and self-absorbed behaviour (7.7%). However, there were no statistically significant differences between the etiological, motor impairment and age-based subgroups. Children with DCP had high scores on SBQ, suggesting sleep problems. Sleep scores were similar in the hyperbilirubinemia and perinatal asphyxia subgroups. Greater sleep problems were noted in children aged < 4y (70.6 + 10.1 vs. 56.5 + 11.3, p < 0.05 as compared to children above 4y of age) and severe motor impairments (68.2 + 11.3 vs. 57.2 + 13.1, p 0.008 as compared to mild-moderate motor impairment). Poor overall developmental scores were seen in 61.5% children and were significantly associated with GMFCS (p 0.04). The majority of children showed impairments in physical (58.5%), adaptive behaviour (58.5%), social-emotional (50.8%), cognitive (60%) and communication (52%) subscales of DP-3. Cognitive impairment was similar in the etiological (hyperbilirubinemia vs. perinatal asphyxia, p = 0.3), and motor impairment (mild-moderate vs. severe, p = 0.9) subgroups. HRQOL was significantly affected by motor impairment in positioning-transfer (p value 0.0001), and interaction-communication domains (p value 0.0001), however, there was no difference based on the etiology of hyperbilirubinemia and asphyxia. CONCLUSION: Children with DCP demonstrate several comorbidities and impaired quality of life. These are similar in hyperbilirubinemia and perinatal asphyxia cohorts, expect for significant proportion of upgaze palsy in DCP secondary to hyperbilirubinemia. Younger children have more problematic behaviour and impaired sleep quality. Severe motor disability influences the developmental outcomes, cognition, sleep and HRQOL in children with DCP.

Effects of Whole-Body Vibration Therapy in Weight-Bearing and Non-Weight Bearing Positions for Upper and Lower Extremities on Balance and Cervical Joint Position Sense in Children With Cerebral Palsy.

INTRODUCTION: Cerebral palsy (CP) is a complex pathological entity that affects muscular control, coordination, proprioception, fine and gross motor abilities, position, stability, and, in some cases, cognition. This study aimed to compare the effects of whole-body vibration therapy (WBVT) in weight bearing and non-weight bearing positions for the upper and lower extremities on balance and cervical joint position sense in children with spastic CP. METHODS: A randomized controlled trial was carried out on 60 hemiplegic children with spastic CP aged 5-15 years. Following randomization, all participants were allocated into six equal-sized groups based on the application of WBVT for upper extremities, lower extremities, or both simultaneously in either weight-bearing or non-weight-bearing positions. Pediatric balance scale (PBS) and laser tracker system were used to assess functional balance and cervical joint position sense. RESULTS: One-way analysis of variance for Inter-group analysis showed a statistically significant difference among all groups in PBS and cervical joint position sense (p<0.05). CONCLUSION: WBVT was found to be beneficial in improving balance and cervical joint position sense in both weight-bearing and non-weight-bearing positions for the upper and lower extremities in children with cerebral palsy. However, the simultaneous application of WBVT in weight-bearing positions for both upper and lower extremities showed the most significant improvements in improving both balance and cervical joint position sense, indicating the most efficacious position of this treatment approach in children with cerebral palsy.

The relation between visual functions, functional vision, and bimanual function in children with unilateral cerebral palsy.

BACKGROUND: Accurate visual information is needed to guide and perform efficient movements in daily life. AIMS: To investigate the relation between visual functions, functional vision, and bimanual function in children with unilateral cerebral palsy (uCP). METHODS AND PROCEDURES: In 49 children with uCP (7-15 y), we investigated the relation between stereoacuity (Titmus Stereo Fly test), visual perception (Test of Visual Perceptual Skills), visuomotor integration (Beery Buktenica Test of Visual-Motor Integration) and functional vision (Flemish cerebral visual impairment questionnaire) with bimanual dexterity (Tyneside Pegboard Test), bimanual coordination (Kinarm exoskeleton robot, Box opening task), and functional hand use (Children's Hand-use Experience Questionnaire; Assisting Hand Assessment) using correlations (rs) and elastic-net regularized regressions (d). OUTCOMES AND RESULTS: Visual perception correlated with bimanual coordination (rs=0.407-0.436) and functional hand use (rs=0.380-0.533). Stereoacuity (rs=-0.404), visual perception (rs=-0.391 to -0.620), and visuomotor integration (rs=-0.377) correlated with bimanual dexterity. Functional vision correlated with functional hand use (rs=-0.441 to -0.458). Visual perception predicted bimanual dexterity (d=0.001-0.315), bimanual coordination (d=0.004-0.176), and functional hand use (d=0.001-0.345), whereas functional vision mainly predicted functional hand use (d=0.001-0.201). CONCLUSIONS AND IMPLICATIONS: Visual functions and functional vision are related to bimanual function in children with uCP highlighting the importance of performing extensive visual assessment to better understand children's difficulties in performing bimanual tasks. WHAT THIS PAPER ADDS: Previous findings showed that up to 62 % of children with unilateral cerebral palsy (uCP) present with visual impairment, which can further compromise their motor performance. However, the relation between visual and motor function has hardly been investigated in this population. This study makes a significant contribution to the literature by comprehensively investigating the multi-level relation between the heterogenous spectrum of visual abilities and bimanual function in children with uCP. We found that mainly decreased visual perception was related to decreased bimanual dexterity, bimanual coordination, and functional hand use while impairments in functional vision were only related to decreased functional hand use. Additionally, elastic-net regression models showed that visual assessments can predict bimanual function in children with uCP, however, effect sizes were only tiny to small. With our study, we demonstrated a relation between visual functions and bimanual function in children with uCP. These findings suggest the relevance of thoroughly examining visual functions in children with uCP to identify the presence of visual impairments that may further compromise their bimanual function.

The effect of horse riding simulator on upper extremity skills, trunk control and functionality in cerebral palsy: a randomized controlled trial.

PURPOSE: The aim of this study was to investigate the effect of horse riding simulator on upper extremity skills, trunk control and functionality in cerebral palsy (CP). MATERIALS AND METHODS: This randomized controlled trial included total 32 CP, 16 in horse riding simulator group (HRSG) and 16 in control group (CG). ABILHAND-Kids, Jebsen-Taylor Hand Function Test (JTHFT), Gross Motor Function Measurement-sitting dimension (GMFM-B), Trunk Control Measurement Scale (TCMS), Pediatric Evaluation of Disability Inventory (PEDI) were evaluated before and after procedure. RESULTS: It was observed that there were improvements in both groups for ABILHAND-Kids scores after intervention, but the change in HRSG was significantly higher (p < 0.001). For all parameters of JTHFT (except writing dominant, non-dominant, turning cards-dominant), there was a significant difference between groups in favor of HRSG (p < 0.001-0.002). There was no change in GMFM-B values with intervention for both groups (p > 0.05). There were significant changes in favor of HRSG group in terms TCMS-Total (p = 0.003). There were significant changes in HRSG compared to CG for PEDI (pPEDI-Self-care<0.001, pPEDI-Mobility<0.001, pPEDI-Social function=0.016, respectively). CONCLUSIONS: It has been found that HRS in addition to conventional physiotherapy have positive effects on upper extremity skills, trunk control and functional abilities in daily life in the rehabilitation process of CP.The study protocol is registered on ClinicalTrials.gov (Identifier: NCT05518370).

Horse riding simulator (HRS) in addition to the routine physiotherapy is an effective method to improve upper extremity skills in children with CP.HRS may be an effective method to improve functional abilities of the children with Cerebral Palsy (CP).HRS is suitable for indoor use and has positive therapeutic effects on children with CP.The type and difficulty of the movements can be programmed gradually with HRS.

Reoperation, Readmission, and Postoperative Bleeding in Pediatric Cerebral Palsy Patients Undergoing Spinal Arthrodesis.

Background Cerebral palsy (CP) is one of the most common neuromuscular disorders in children, and spinal abnormalities are vastly more common in people with CP compared to the general population. Further investigation is needed to improve our understanding of the perioperative factors that place children with CP at greater risk of postoperative complications. This study aims to investigate (1) whether pediatric CP patients have higher rates of postoperative complications after spinal fusion and (2) risk factors for postoperative bleeding, readmission, and reoperation. Methodology The 2019 American College of Surgeons National Surgical Quality Improvement Program Pediatric database was used for this study. Chi-square tests were used to compare patient demographics, frequency of comorbidities, intraoperative factors, and postoperative complications between CP and non-CP patients. Multivariable logistic regression modeling was conducted to determine if CP was an independent risk factor for the composite variable that included postoperative bleeding, readmission, and reoperation. Results A total of 4,445 patients were included in the study, with 606 CP and 3,839 non-CP patients. Several comorbidities were more prevalent in the CP cohort, most notably asthma, gastrointestinal disease, previous cardiac surgery, and hematologic disorders. Multivariable logistic regression modeling revealed that CP, older age, non-Caucasian race, American Society of Anesthesiologists (ASA) class of 3 or higher, posterior surgical approach, previous cardiac surgery, and ostomy were significantly correlated with higher postoperative complications. Conclusions This study demonstrates that CP, older age, non-Caucasian race, ASA class of 3 or higher, posterior approach, previous cardiac surgery, and ostomy are independent risk factors for postoperative complications, including readmission, reoperation, and postoperative bleeding requiring transfusions. Consequently, there is a pressing need for additional research to establish perioperative strategies that reduce postoperative risks for these patients. Spine surgeons should consider the findings of this study when communicating the potential risks of spinal fusion surgery with patients and their families.

Preoperative gastric volume assessment using ultrasound in cerebral palsy pediatric patients: A prospective observational study.

BACKGROUND: Although cerebral palsy is a risk factor for aspiration, there is insufficient research on residual gastric volume after preoperative fasting in children with cerebral palsy. We evaluated the incidence of a full stomach by ultrasound assessment of the gastric volume in children with cerebral palsy who underwent orthopedic surgery after preoperative fasting. METHODS: The patients fasted for 8h for solid foods and 2h for clear liquids. We obtained the gastric antral cross-sectional area using ultrasound in the semi-recumbent and right lateral decubitus positions. A calculated stomach volume > 1.5 mL.kg-1 was considered as full, which poses a high aspiration risk. The primary outcome was the incidence of full stomach, and the secondary outcomes were the qualitative gastric volume and correlation of disease severity categorized according to the Gross Motor Function Classification System with the residual gastric volume, gastric volume per body weight, and qualitative gastric volume. RESULTS: Thirty-seven pediatric patients with cerebral palsy, scheduled for elective orthopedic surgery, were included for analysis. Full-stomach status was observed in none, and the gastric volume per body weight was 0.5 (0.4-0.7) mL.kg-1. No significant differences were observed in the residual gastric volume (p = 0.114), gastric volume per body weight (p = 0.117), or qualitative grade of gastric volume (p = 0.642) in relation to disease severities. CONCLUSION: Children with cerebral palsy who fasted preoperatively had empty or nearly empty stomachs. Further studies are required to determine the optimal fasting duration for such children.

HABIT training in unilateral spastic cerebral palsy children having mirror movement disorder.

The single-arm feasibility study was planned to evaluate the therapeutic effect of hand arm bimanual intensive training in improving the fine and gross motor functions of hand, and in the reduction of intensity with respect to mirror movement disorder. The sample comprised unilateral spastic cerebral palsy children aged 6-16 years who were having mirror movement disorder and were able to make a gross grip. The hand arm bimanual intensive training was provided to the participants for 6 hours per day for 15 days for a total of 90 hours. Comparison of baseline and post-intervention showed that the functional independence level of children had improved, with improvement in unimanual and bimanual hand performance (p˂0.05). However, there was no improvement seen in the severity of mirror movements (p>0.05). Hence, hand arm bimanual intensive training was found to be effective in increasing the functional independence of cerebral palsy children by improving the hand function, but there was no effect on mirror movement disorder.

Evaluating the Validity of Tests to Predict Sprint and Change of Direction Speed in Para-Athletes With Brain Impairments.

Maximum running speed is a performance determinant in para-athletics and cerebral palsy football. Sixty international para-athletes with brain impairments completed five activity-limitation tests (standing broad jump, four bounds for distance, split jumps, 10-m speed skip, and running in place) and two criterion tests (40-m sprint and modified agility test). The same three tests (standing broad jump, four bounds for distance, and 10-m speed skip) that correlated with running performance in nondisabled runners (.67 < r < -.82; p < .05; 75% of variance) also correlated in para-athletes with brain impairments (.41 < r < -.62; p < .01; 55% of variance). Standing broad jump, four bounds for distance, split jumps, and running in place also correlated with change-of-direction speed (.43 < r < -.63; p < .01; 58% of variance). Results indicate that methods of classification for para-athletics with nondisabled runners are also valid with para-athletes with brain impairments, and new sport-specific relationships were found for assessing the performance of rapid and short sprints toward different directions, specific of a team para-sport like cerebral palsy football.

Cervicothoracic ventral-dorsal rhizotomy for treatment of brachial hypertonia in cerebral palsy.

PURPOSE: Cervicothoracic ventral-dorsal rhizotomy (VDR) is a potential treatment of medically refractory hypertonia in patients who are not candidates for intrathecal baclofen, particularly in cases of severe upper limb hypertonia with limited to no function. A longitudinal cohort was identified to highlight our institutional safety and efficacy using cervicothoracic VDR for the treatment of hypertonia. METHODS: Retrospective data analysis was performed for patients that underwent non-selective cervicothoracic VDR between 2022 and 2023. Non-modifiable risk factors, clinical variables, and operative characteristics were collected. RESULTS: Six patients (three female) were included. Four patients underwent a bilateral C6-T1 VDR, one patient underwent a left C7-T1 VDR, and another underwent a left C6-T1 VDR. Three patients had quadriplegic mixed hypertonia, one patient had quadriplegic spasticity, one patient had triplegic mixed hypertonia, and one patient had mixed hemiplegic hypertonia. The mean difference of proximal upper extremity modified Ashworth scale (mAS) was - 1.4 ± 0.55 (p = 0.002), and - 2.2 ± 0.45 (p < 0.001) for the distal upper extremity. Both patients with independence noted quality of life improvements as well as increased ease with dressing and orthotics fits. Caregivers for the remaining four patients noted improvements in caregiving provision, mainly in dressing, orthotics fit, and ease when transferring. CONCLUSION: Cervicothoracic VDR is safe and provides tone control and quality of life improvements in short-term follow-up. It can be considered for the treatment of refractory hypertonia. Larger multicenter studies with longer follow-up are necessary to further determine safety along with long-term functional benefits in these patients.

Rethinking the Accessibility of Hearing Assessments for Children with Developmental Disabilities.

We aim to determine the accessibility of gold-standard hearing assessments - audiogram or auditory brainstem response (ABR) - during the first 3 months of hearing health care for children with and without developmental disabilities. Electronic health records were examined from children (0-18 years) who received hearing health care at three hospitals. Children with developmental disabilities had a diagnosis of autism, cerebral palsy, Down syndrome, or intellectual disability. Assessments from the first 3 months were reviewed to determine if ≥ 1 audiogram or ABR threshold was recorded. To evaluate differences in assessment based on disability status, logistic regression models were built while accounting for age, race, ethnicity, sex, and site. Of the 131,783 children, 9.8% had developmental disabilities. Whereas 9.3% of children in the comparison group did not access a gold-standard assessment, this rate was 24.4% for children with developmental disabilities (relative risk (RR) = 3.79; p < 0.001). All subgroups were at higher risk relative to the comparison group (all p < 0.001): multiple diagnoses (RR = 13.24), intellectual disabilities (RR = 11.52), cerebral palsy (RR = 9.87), Down syndrome (RR = 6.14), and autism (RR = 2.88). Children with developmental disabilities are at high risk for suboptimal hearing evaluations that lack a gold-standard assessment. Failure to access a gold-standard assessment results in children being at risk for late or missed diagnosis for reduced hearing. Results highlight the need for (1) close monitoring of hearing by healthcare providers, and (2) advancements in testing methods and guidelines.

The effects of ankle mulligan mobilisation in children with cerebral palsy: A randomized single blind control study.

OBJECTIVE: To assess the impact of range of motion changes before and after Mulligan mobilisation with ankle movement interventions on the daily lives of children with diplegic cerebral palsy. METHODS: The single blind randomised controlled study was conducted from July 30, 2022, to January 10, 2023, at 3 rehabilitation centres in Hebron, Palestine, after approval from the ethics review committee of Eastern Mediterranean University, Northern Cyprus, and comprised children with cerebral palsy, who were randomised into intervention group IG and control group CG. All the subjects received regular physiotherapy sessions, overseen by their parents, while those in group IG received mobilisation with ankle movement treatment 3 times per week for 4 weeks. Post-intervention assessment of ankle range of motion, balance, functional performance and quality of life was done using a goniometer, the timed up and go test, 88-item gross motor function measure, 6-minute walk test and the cerebral palsy quality of life questionnaire. Data was analysed using SPSS 24. RESULTS: Of the 64 patients, 40(63%) were girls, and 24(37%) were boys. The overall age range was aged 4-12 years. There were 32(50%) patients in each of the two groups. Mobilisation with movement had a significant effect on active and passive range of motion for the left and right ankles (p<0.05) as well as on balance, gross motor function and quality of life (p>0.05). However, mobilisation with movement had no significant effect on the the distance covered during the 6-minute walk test (p>0.05). CONCLUSIONS: Mobilisation with movement had a significant impact on active and passive ankle range of motion, balance and quality of life in diplegic children with cerebral palsy, but it had no impact on gait function. Clinical trial registration number: The study was registered at the United States National Institutes of Health (ClinicalTrials.gov) with registration number NCT05500924.

Permanent cutaneous vesicostomy: a pragmatic approach to safely manage lower urinary tract dysfunction in pediatric patients with chronic and life-limiting conditions and neuropathic bladders.

Introduction: Lower urinary tract dysfunction (LUTD) in cerebral palsy (CP) and other neuromuscular diseases can present with chronic retention that leads to hydronephrosis, recurrent urinary tract infections (UTI), and stone formation. Whenever the conservative treatment of LUTD fails for any reason, it is considered to be complicated LUTD, in which a surgical approach is warranted. Cutaneous vesicostomy (CV) is a simple, well-tolerated, and potentially reversible procedure that protects the upper tracts. We describe our experience using CV for this complex population. Materials and methods: Children with CP and other neuromuscular diseases admitted to pediatric long-term care units for palliative care between 2015 and 2019 were included in the study. They present multi-system involvement, polypharmacy, and Gross Motor Function Classification System levels of 4 or 5. We retrospectively studied this population's indications and results of CV. Results: Of the 52 admitted patients, 18 presented LUTD with UTI (n:18; 100%), stones (n:5; 28%), progressive hydroureteronephrosis (n:3; 17%), or stones (n:2; 11%). Conservative initial management (catheterizations, prophylaxis antibiotics) was effective in half the cases. The remaining nine were defined as complicated LUTD and underwent CV. After a mean follow-up of 11.3 months, the follow-up showed improved hydronephrosis in all nine (100%) patients. Recurrent UTIs were no longer seen in eight of nine patients, although three patients required bladder irrigations; bladder stones did not recur after CV; the kidney stones needed further intervention. Revision of the CV was required in two (11%) cases at 12 and 24 months postoperatively due to stoma stenosis. Conclusion: CV is a relatively simple and effective procedure representing a pragmatic solution for managing complicated LUTD in complex long-term institutionalized pediatric palliative care patients with neuropathic bladders.

'There was nothing, just absolute darkness': Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study.

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.

The Impact of Neurological Disorders on Clinical and Functional Outcomes after Shoulder Arthroplasty: A Systematic Review.

BACKGROUND: Patients with pre-existing neurologic disorders present a unique set of challenges for shoulder arthroplasty (SA) surgeons due to the presence of concomitant contractures, muscle weakness, and spasticity, which may affect outcomes and complication rates after shoulder arthroplasty. The goal of this systematic review was to evaluate the clinical and functional outcomes after SA in patients pre-existing with neurologic disorders, focusing on complication and reoperation rates. METHODS: This systematic review was performed in adherence to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines outlined by Cochrane Collaboration. A search of PubMed, the Medline Library, and EMBASE from inception until September 2023 was conducted to obtain studies reporting on outcomes after SA in patients with neurological disorders. Study demographics and information on outcomes including patient-reported outcomes and complication rates were collected. The methodological quality of included primary studies was appraised using the MINORS scoring system. RESULTS: Twenty articles published between 1997 and 2023 met inclusion criteria. In total, 13,126 patients with neurological conditions with 7 different neurological disorders (Parkinson's disease (PD), epilepsy and seizures, cerebral palsy (CP), poliomyelitis, Charcot neuropathy (CN), cerebrovascular disease (CVD) and multiple sclerosis (MS)) were included. The mean patient age was 64.3 years (range, 33.0 - 75.8 years), 51.4% of patients were male, and the mean postoperative follow-up time was 5.1 years (range, 1.4 - 9.9 years). PD was the most reported neurological disorder (9 studies, 8,033 patients), followed by epilepsy (4 studies, 3,783 patients), and MS (1 study, 1,077 patients). While these patients did experience improvements in outcomes following SA, high complication and revision rates were noted. CONCLUSIONS: Patients with neurologic disorders demonstrate improvements in pain and function after SA but have higher reported complication and revision rates when compared with patients without neurologic conditions. This systematic review offers valuable data for both the surgeon and patient regarding anticipated clinical results and possible complications from SA in patients with neurologic disorders that may aid in shared decision-making when considering SA.

Novel Machine Learning Analysis Algorithm of DNA Methylation Patterns Identifies Cerebral Palsy with Concurrent Epilepsy.

Background: Spastic cerebral palsy, the most common pediatric-onset disabling condition with an estimated prevalence of 0.2% in children, is a complex condition characterized by stiff movement, muscle contractures, and abnormal gait that can diminish quality of life. Spastic CP accounts for approximately 83% of all CP cases and frequently co-occurs with other complex conditions, like epilepsy. An estimated 42% of spastic CP cases have co-occurring epilepsy. Unfortunately, CP is often difficult to diagnose. Although most children with CP are born with it or acquire it immediately after birth, many are not identified until after 19 months of age with CP diagnosis often not confirmed until 5 years of age. New bioinformatic approaches to identify CP earlier are needed. Recent studies indicate that altered DNA methylation patterns associated with CP may have diagnostic value. The potential confounding effects of co-occurrent epilepsy on these patterns are not known. We evaluated machine learning classification of CP patients with or without co-occurring epilepsy. Results: Whole blood samples were collected from 30 study participants diagnosed with epilepsy (n=4), spastic CP (n=10), both (n=8), or neither (n=8). A novel Support-Vector-Machine learning algorithm was developed to identify methylation loci that have ability to classify CP from controls in the presence or absence of epilepsy. This algorithm was also employed to measure classification ability of identified methylation loci. After preprocessing of data, isolation of important methylation loci was performed in a binary comparison between CP and controls, as well as in a 4-way scheme, encapsulating epilepsy diagnoses. The classification ability was similarly assessed. CP Classification performance was evaluated with and without inclusion of epilepsy as a feature. Median F1 scores were 0.67 in 4-class comparison, and 1.0 in the binary classification, outperforming Linear-Discriminant-Analysis (0.57 and 0.86, respectively). Conclusion: This novel algorithm was able to classify study participants with spastic CP and/or epilepsy from controls with significant performance. The algorithm shows promise for rapid identification in methylation data of diagnostic methylation loci. In this model, Support Vector Machines outperformed Linear Discriminant Analysis in classification. In the evaluation of epigenetics-based diagnostics for CP, epilepsy may not be a significant confounding factor.