Single-centre parental survey of paediatric rehabilitation services for children with cerebral palsy.
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SUBMITTER: Bican R
PROVIDER: S-EPMC8011711 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectiveThe objective of this study was to assess the rehabilitation status and factors associated with rehabilitation service utilisation among children with cerebral palsy (CP) in Bangladesh.Materials and methodsThis is a population-based surveillance study conducted among children with CP registered in the Bangladesh CP Register (BCPR), the first population-based register of children with CP aged <18 years (y) in Bangladesh. Children with CP were identified from the community using the key informant method and underwent a detailed neurodevelopmental assessment. Socio-demographic, clinical and rehabilitation status were documented. Unadjusted and adjusted analyses with a 95% confidence interval (CI) were used to identify potential predictors of rehabilitation service uptake.ResultsBetween January 2015 and December 2019, 2852 children with CP were registered in the BCPR (mean (standard deviation, SD) age: 7 y 8 months (mo) (4 y 7 mo), 38.5% female). Of these, 50.2% had received rehabilitation services; physiotherapy was the most common type of service (90.0%). The mean (SD) age at commencement of rehabilitation services was 3 y 10 mo (3 y 1 mo). The odds of not receiving rehabilitation was significantly higher among female children (adjusted odds ratio (aOR) 1.3 [95% CI: 1.0-1.7], children whose mothers were illiterate and primary level completed (aOR 2.1 [95% CI: 1.4-3.1] and aOR 1.5 [95% CI: 1.1-2.1], respectively), fathers were illiterate (aOR 1.9 [95% CI: 1.3-2.8]), had a monthly family income ~US$ 59-118 (aOR: 1.8 [95% CI: 1.2-2.6]), had hearing impairment (aOR: 2.3 [95% CI: 1.5-3.5]) and motor severity (i.e. Gross Motor Function Classification System level III (aOR: 0.6 [95% CI: 0.3-0.9]) and level V (aOR: 0.4 [95% CI: 0.2-0.7])).ConclusionsRehabilitation status was poor among the majority of the children with CP in the BCPR cohort, limiting their opportunities for functional improvement. A community-based rehabilitation model focusing on socio-demographic and clinical characteristics should be a public health priority in Bangladesh.
| S-EPMC8092763 | biostudies-literature
Project description:ObjectiveTo describe the comorbidities in children with cerebral palsy (CP) and determine the characteristics associated with different impairments.DesignCross-sectional study.SettingTertiary care referral centre in India.PatientsBetween April 2018 and May 2022, all children aged 2-18 years with a confirmed diagnosis of CP were enrolled by systematic random sampling. Data on antenatal, birth and postnatal risk factors, clinical evaluation and investigations (neuroimaging and genetic/metabolic workup) were recorded.Main outcome measuresPrevalence of the co-occurring impairments was determined using clinical evaluation or investigations as indicated.ResultsOf the 436 children screened, 384 participated (spastic CP=214 (55.7%) (spastic hemiplegic=52 (13.5%); spastic diplegia=70 (18.2%); spastic quadriplegia=92 (24%)), dyskinetic CP=58 (15.1%) and mixed CP=110 (28.6%)). A primary antenatal/perinatal/neonatal and postneonatal risk factor was identified in 32 (8.3%), 320 (83.3%) and 26 (6.8%) patients, respectively. Prevalent comorbidities (the test used) included visual impairment (clinical assessment and visual evoked potential)=357/383(93.2%), hearing impairment (brainstem-evoked response audiometry)=113 (30%), no understanding of any communication (MacArthur Communicative Development Inventory)=137 (36%), cognitive impairment (Vineland scale of social maturity)=341 (88.8%), severe gastrointestinal dysfunction (clinical evaluation/interview)=90 (23%), significant pain (non-communicating children's pain checklist)=230 (60%), epilepsy=245 (64%), drug-resistant epilepsy=163 (42.4%), sleep impairment (Children's Sleep Habits Questionnaire)=176/290(60.7%) and behavioural abnormalities (Childhood behaviour checklist)=165 (43%). Overall, hemiparetic and diplegic CP and Gross Motor Function Classification System ≤3 were predictive of lesser co-occurring impairment.ConclusionCP children have a high burden of comorbidities, which increase with increasing functional impairment. This calls for urgent actions to prioritise opportunities to prevent risk factors associated with CP and organise existing resources to identify and manage co-occurring impairments.Trial registration numberCTRI/2018/07/014819.
| S-EPMC10335521 | biostudies-literature
Project description:PURPOSE: The goals of this study were to 1) describe the feeding skills of young children with cerebral palsy (CP); and 2) elucidate the type and severity of feeding problems for children with and without oral-motor involvement. METHOD: Parents of 37 children (16 females, 21 males) with CP, who ranged in age from 11-58 months (mean age = 41 months), completed questionnaires regarding their child's past and current feeding abilities. Children were also clinically evaluated to determine whether each had evidence of oral-motor involvement. RESULTS: Children with CP and oral-motor involvement had significantly more difficulty with self-feeding, increased frequency of coughing and choking, increased prevalence of swallowing evaluation and feeding therapy, and were introduced to solid food at a later age relative to children with CP who did not have oral-motor involvement. Both groups of children were similar in their history of tube feeding, bottle feeding, difficulty with solid foods, use of adaptive equipment, duration of mealtimes, and presence of choking, coughing, and gagging. CONCLUSIONS: Children with and without oral-motor involvement initially presented with similar feeding difficulties. However, feeding problems appeared to resolve to a greater extent in children without oral-motor involvement. The difficulties identified early in life, for children with oral-motor involvement, appeared to persist with development.
| S-EPMC2688002 | biostudies-literature
Project description:Cannabinoids are prescribed to children with cerebral palsy despite limited evidence. We aimed to assess cannabinoid prescribing practices in children with cerebral palsy, focusing on indications, types of preparations used, and tolerability. Furthermore, we investigated how physicians acquire knowledge about cannabinoid medication. We asked physicians with expertise in the care of children with cerebral palsy about their prescribing practices for cannabinoids. Data were collected through an online survey, which was distributed by email. In addition to the demographic information of participants, we also inquired about the indications for the prescription of cannabinoids, experiences regarding efficacy, and observed side effects of the therapy. Seventy physicians from Europe, North America, and Australia completed the survey. Forty-seven participants were experienced in treating of children with cerebral palsy with cannabinoids. The most common indication was epilepsy (69%), followed by spasticity (64%) and pain (63%). The preparations and doses prescribed varied considerably. Half of the participants evaluated the effect of the cannabinoids as moderate. Twenty-nine physicians reported side effects, most frequently, drowsiness (26%), somnolence (19%), fatigue (13%), and diarrhea (13%). Despite the lack of evidence to date, cannabinoids are used to treat children with cerebral palsy in a wide variety of indications. Randomized controlled trials in this vulnerable patient group are therefore of utmost importance.
| S-EPMC10742030 | biostudies-literature
Project description:AimTo identify challenges of combining robotic upper extremity rehabilitation with tDCS in children with upper extremity bilateral cerebral palsy (CP) by assessing feasibility, tolerability and safety.MethodsThis was an unblinded, open-label, pilot clinical trial. Participants completed 10 × 1 h sessions of robotic rehabilitation combined with motor cortex anodal tDCS. Feasibility, acceptability and practicality, were assessed including the number of participants completing the protocol, factors limiting participation, time required for sessions, and completion of functional assessments and tolerability scales. To assess safety, standardized clinical and robotic measures of sensorimotor function were performed. The trial was registered at clinicaltrials.gov (NCT04233710).ResultsEight children were recruited (mean age 8y ± 1.8y, range 6-11 years) and 5 completed the intervention. There were no serious adverse events. One child developed focal seizures 6 weeks after the trial that were deemed to be unrelated. Barriers to completion included time and scheduling demands and patient factors, specifically cognitive/behavioral impairments and dyskinesia. No decline in clinical function was appreciated.ConclusionsRobotic upper extremity rehabilitation combined with tDCS may be feasible in children with bilateral CP. Careful participant selection, family engagement, and protocol adaptations are recommended to better understand the feasibility and tolerability of future trials.
| S-EPMC9397997 | biostudies-literature
Project description:Background Recent research indicates that intensive rehabilitation tends to be effective for children with cerebral palsy (CP). Intensive Neurophysiological Rehabilitation System (INRS) is a multi-component approach that combines various interventions and addresses different functional goals.. This study aimed to examine the effectiveness of the INRS treatment in children with bilateral CP. Methods In this quasi-randomized controlled study, 48 children with spastic bilateral CP (age 5–12 years, GMFCS Levels I-IV, MACS Levels I-IV) were assigned to an experimental or control group in order they have been enrolled. The experimental group underwent INRS treatment in the tertiary care facility for about four hours daily for ten days and continued routine home treatment for four weeks. After the first evaluation, participants from the control group stayed on the waiting list for four weeks receiving home treatment and then starting the INRS treatment. Thereby, all participants were assessed three times. The primary outcome measure was a Gross Motor Function Measure 66 Item Set (GMFM). The secondary outcome measures included the Jebsen-Taylor Hand Function test, Box and Blocks test, ABILHAND-Kids Questionnaire, Self-care and Mobility domain of the Pediatric Evaluation of Disability Inventory, and the ankle dorsiflexion passive range of motion. Results There was a statistically significant increase in the GMFM score after the INRS treatment in both the experimental group (mean difference (MD) 2.0, P < 0.01) and control group (MD 1.5, P < 0.05), with a large size effect (partial eta squared (η2) = 0.21 and η2 = 0.14). The mean difference between groups during the first study period was 2.89 points (p < 0.01) in the GMFM score with a medium effect size (η2 = 0.12). Statistically significant superiority of the INRS treatment over home treatment was also obtained by Jebsen-Taylor Hand Function Test and the Box and Blocks Test in both dominant and non-dominant hands. Conclusions The study indicates that the INRS treatment can be beneficial for improving both gross motor functions and hand function in children with bilateral CP. Further longitudinal studies are required to evaluate the effects of the INRS treatment on the participation level of children with CP. Trial registration The study protocol was registered on ClinicalTrials.gov under the identifier: NCT04093180 on 17/09/2019.
| S-EPMC10116667 | biostudies-literature
Project description:Background and aimsThe provision of coordinated and multidisciplinary rehabilitation programs that adapt to the individual with cerebral palsy (CP) evolving rehabilitation needs throughout the different phases of life is highly challenging for healthcare systems. The aim of this study was to report the changes in motor rehabilitation (MR) environmental factors, service use and patient outcomes between children and adults with cerebral palsy and to identify if changes took place earlier or later than the standard division between pediatric and adult healthcare systems at 18 years.MethodsWe used data from the French ESPaCe survey to select a set of indicators for MR environmental factors, service use and patient outcomes, highlighted by patients and families in previous studies. We then compared the distribution of the indicator data between children and adults, as well as between four transition age groups: children under 12, adolescents up to 17 years, young adults, and adults over 25 years of age. We estimated odds ratios adjusted for motor involvement, associated impairments and informant type.ResultsA total of 997 respondents over 2 years of age were included in this study (484 children and 513 adults). Finding an available physiotherapist was very difficult for almost half of the children, and a greater proportion of adolescents and adults. Physiotherapy was provided in a private outpatient practice for twice as many adults over 25 years as children and adolescents. The weekly amount of physical therapy decreased as outpatient practice increased. Multidisciplinary rehabilitation decreased sharply from adolescence and was halved at adulthood. Satisfaction with the MR program decreased from childhood into adolescence and adulthood. Perceived impact of physiotherapy on people with CP and their main carers were less positive in adolescents.ConclusionsHealthcare policies should focus on accessibility issues at all ages, consider adolescents as a specific population, consider a wide transition phase (12-25 yo) and maintain a multidisciplinary approach at adulthood. There is a strong need for national rehabilitation strategies for individuals with CP.
| S-EPMC8905679 | biostudies-literature
Project description:Although paediatric flexible bronchoscopy is safe with relatively few side effects, parents frequently report an associated burden. To assess this, we undertook 25 semi-structured interviews with the parents of children who had recently undergone this procedure. Despite reporting the procedure was well explained, parental worry about procedure was common. The procedure resulted in children missing a median of 2 days from nursery/school and the parents having to take a median of 2 days carers leave. There was an additional financial burden related to sibling childcare, travel costs and car parking. Clinicians should address these issues in pre-procedure counselling.
| S-EPMC7970217 | biostudies-literature
Project description:Cerebral palsy is primarily an upper motor neuron disease that results in a spectrum of progressive movement disorders. Secondary to the neurological lesion, muscles from patients with cerebral palsy are often spastic and form debilitating contractures that limit range of motion and joint function. With no genetic component, the pathology of skeletal muscle in cerebral palsy is a response to aberrant neurological input in ways that are not fully understood. This study was designed to gain further understanding of the skeletal muscle response to cerebral palsy using microarrays and correlating the transcriptional data with functional measures. Hamstring biopsies from gracilis and semitendinosus muscles were obtained from a cohort of patients with cerebral palsy (n=10) and typically developing patients (n=10) undergoing surgery. Affymetrix HG-U133A 2.0 chips (n=40) were used and expression data was verified for 6 transcripts using quantitative real-time PCR, as well as for two genes not on the microarray. Chips were clustered based on their expression and those from patients with cerebral palsy clustered separately. Significant genes were determined conservatively based on the overlap of three summarization algorithms (n=1,398). Significantly altered genes were analyzed for over-representation among gene ontologies, transcription factors, pathways, microRNA and muscle specific networks. These results centered on an increase in extracellular matrix expression in cerebral palsy as well as a decrease in metabolism and ubiquitin ligase activity. The increase in extracellular matrix products was correlated with mechanical measures demonstrating the importance in disability. These data lay a framework for further studies and novel therapies. Skeletal muscle biopsies from both the gracilis and semitendinosus were obtained during surgery for 20 pediatric subjects for affymetrix microarray analysis. We obtained a group of 10 patients undergoing medial hamstring lengthening in the cerebral palsy group and 10 patients undergoing ACL reconstruction with hamstring autograft in the control group. This provided 40 microarrays in 4 groups to analyze the effect of cerebral palsy and also differences between muscles.
2012-11-21 | E-GEOD-31243 | biostudies-arrayexpress
Project description: Not available
| S-EPMC9636454 | biostudies-literature