Families' and therapists' experience of a telehealth programme for children and adolescents with cerebral palsy during the COVID-19 pandemic.

Previous studies have shown the efficacy of botulinum toxin type A (BoNT-A) in the management of ambulant individuals with cerebral palsy (CP). There is little evidence on its use in non-ambulant children with CP. This review aimed to investigate indications and efficacy for BoNT-A use in managing pain, care, and comfort, and improving function in children with CP in Gross Motor Function Classification System (GMFCS) levels IV and V. Electronic databases were searched from the earliest available date to June 2012 using a combination of subject headings and free text. Inclusion criteria consisted of studies with (1) participants aged 18 or under, (2) participants with CP in GMFCS levels IV and V, (3) participants receiving BoNT-A treatment, and (4) studies published in English-language peer-reviewed journals. The search resulted in a total of 814 studies, of which 19 met the inclusion criteria. Eighteen studies provided level IV or V evidence and one level I evidence according to the American Academy for Cerebral Palsy and Developmental Medicine guidelines for the development of systematic reviews. Most of the studies were of weak to moderate methodological quality. The evidence that BoNT-A is effective in reducing postoperative pain in children with CP in GMCFS levels IV and V is limited, with only one level I study identified. Remaining indications were general pain reduction, maintaining hip integrity, achieving functional changes, and goal attainment. A high percentage of participants in the studies showed positive changes in these areas. With the poor level of evidence of the included studies, no definite conclusion could be drawn on the indications for BoNT-A use in children with CP in GMCFS levels IV and V. Further investigation by rigorous studies is required.

To describe caregiver experiences, perceptions, and device preferences between a modified ride-on car (MROC) and an Explorer Mini, including perceived changes in participation, barriers, and benefits for young children with cerebral palsy (CP) classified in Gross Motor Function Classification System (GMFCS) level V. A subset of data were analyzed from a larger multisite study. Semi-structured interviews were conducted with 10 caregivers of children with CP in GMFCS level V across a 16-week trial with two mobility devices. Each interview was audio-recorded, transcribed verbatim, and analysed using constant comparison methods. Seven of 10 caregivers preferred the Explorer Mini over the MROC. Four themes emerged. One related to the perceived benefits and barriers of each device (ease and convenience is essential) and three related to perceived changes in participation: (1) autonomy enacted through mobility; (2) belonging and being present; and (3) participation recognized as an area of growth. Despite limited consideration of powered mobility for this population, caregivers of children in GMFCS level V reported similar benefits and barriers compared to children in other GMFCS levels shown in the literature. Particularly, caregivers perceived positive changes in their child's participation and recognized the ability for continued improvements in participation when using powered mobility. Children with cerebral palsy classified in Gross Motor Function Classification System level V are often excluded from powered mobility use and research. Despite this, caregivers reported positive experiences for their children. Caregivers felt that participation in powered mobility led to increased autonomy and overall sense of inclusion and belonging for their children. Most caregivers preferred the Explorer Mini over the modified ride-on car but recognized that both devices had benefits and barriers to use.

This study was executed as correlation study to investigate the correlation between the dimensions of diaphragm movement, and respiratory functions and pressures in accordance with the Gross Motor Function Classification System (GMFCS) levels on children with cerebral palsy as the participants. Forty-three children in the age range of 5–13 years diagnosed with cerebral palsy as the research participants were divided into three groups (levels I, II, and III) through systematic stratified random sampling in accordance with their GMFCS levels. Pearson correlation analysis was executed to examine the correlation between dimensions of diaphragm movement, and respiratory functions and pressures in accordance with the GMFCS levels of the participants. There was no significant correlation between the dimensions of diaphragm movement, and respiratory functions and pressures in all of the three groups in accordance with the GMFCS levels of the participants. Therefore, it is deemed that although measurement of the dimensions of diaphragm movement of children with cerebral palsy by using diagnostic ultrasonic M-mode imaging device can be considered as auxiliary tool in predicting the breathing capabilities, it cannot be used as independent measurement equipment.

The purpose of this study was to evaluate mid-term results of proximal femoral varus derotation osteotomy (VDRO) in children with cerebral palsy and determine what effect age, Gross Motor Function Classification System (GMFCS) level, and surgeon volume had on surgical success. We analyzed a cohort of children with cerebral palsy who underwent VDRO for hip displacement at a tertiary-level pediatric hospital between 1994 and 2007. Age, sex, GMFCS level, preoperative radiographic parameters, previous botulinum toxin administration or soft-tissue release, adjunctive pelvic osteotomy, the performance of bilateral surgery at the index VDRO, and surgeon volume (the number of procedures performed) were recorded. Results were analyzed via univariate and multivariate analyses for association with the need for revision hip surgery. Kaplan-Meier survivorship curves were generated, determining the time from index surgery to failure (defined as the need for subsequent surgical procedures on the hip and/or pelvis, or a hip migration percentage of >50% at the time of final follow-up), and were further stratified according to osseous versus soft-tissue revision. A total of 567 VDROs were performed in 320 children (mean age [and standard deviation], 8.2 ± 3.8 years). The mean follow-up was 8.3 years (range, three to eighteen years). Of the initial 320 patients, 117 (37%) were considered to have had failure. Multivariate Cox regression analysis confirmed that younger age at surgery (p < 0.001), increased GMFCS level (p = 0.01), and lower annual surgical hip volume (p = 0.02) were significant independent predictors of any type of surgical revision. Furthermore, soft-tissue release at VDRO was protective against revision (p = 0.02). Five-year survivorship analysis revealed a 92% success rate for children classified as GMFCS levels I and II compared with a 76% success rate for those of GMFCS level V (p < 0.01). This study demonstrated a 37% failure rate after VDRO in children with cerebral palsy. Older age, lower GMFCS level, and increased surgeon volume were strong predictors of surgical success.

To determine caregiver knowledge and preferences for gross motor information and examine differences across Gross Motor Function Classification System (GMFCS) levels. A questionnaire was developed. Respondents reported GMFCS knowledge, preference for knowledge, and experience with GMFCS and motor curve information. In total, 303 caregivers of children with cerebral palsy (CP) (GMFCS level I: 22%; GMFCS level II: 16%; GMFCS level III: 15%; GMFCS level IV: 23%; GMFCS level V: 24%) completed the questionnaire. Forty-five per cent of caregivers knew the GMFCS level at survey, and only 31% knew how their child's motor development compared with others of similar age and level. Caregiver education level was associated with knowledge (p<0.001). Most prefer discussing motor development with a therapist. Of caregivers who knew their child's GMFCS level at survey, 83% reported it would be helpful to revisit the topic over time. Compared with GMFCS level IV and V, caregivers of children in GMFCS levels I to III preferred to learn at the same time as CP diagnosis, (p=0.04) and were more likely to report having received visual aids (p=0.04). Caregivers of children in GMFCS levels IV and V found it more difficult to learn their child's level (p<0.001) versus those caring for children of GMFCS levels I to III, and reported seeing pictures with descriptions more informative (p=0.03). Caregivers of children with CP may not know GMFCS and motor curve information, and vary in experience and preferences for this information. Fewer than half of caregivers of children with cerebral palsy (CP) know their child's Gross Motor Function Classification System level. Most want to know how their child's function compares to other children with CP. The majority of caregivers would like to revisit the topic over time. Caregivers want to discuss gross motor information with the therapist and doctor.

AimTo investigate the prevalence, characteristics, and risk factors of hip pain in adolescents with cerebral palsy (CP) and compare the findings with those of the same individuals 5 years earlier.MethodSixty‐seven adolescents (28 females, 39 males; mean age 14y 7mo; SD 1y 5mo; range 12–17y) with bilateral CP, in Gross Motor Function Classification System (GMFCS) levels III to V enrolled in a CP surveillance programme were assessed for hip pain. Their caregivers responded to the questions on the intensity and frequency of hip pain from the Child Health Questionnaire (CHQ) (transformed to CHQ hip pain score; 100 indicates no pain). Interference of hip pain with daily activities and sleep was recorded on numeric rating scales. Hip displacement was measured radiographically by the migration percentage.ResultsTwenty‐eight participants had 44 painful hips. Their mean CHQ hip pain score was 40 (SD 21.4; range 10–80). Independent risk factors for hip pain, low CHQ hip pain score, and interference with sleep were severe hip subluxation (migration percentage 50–89%) and GMFCS level V. A migration percentage of 50% to 89% was the only independent risk factor for interference with daily activities. Over 5 years, the number of participants with hip pain increased from 18 to 28, while the mean migration percentage of the most displaced hip was unchanged.InterpretationOur CP hip surveillance programme did not protect the participants against increasing prevalence of hip pain during adolescence. We suggest that surveillance programmes for CP should include guidelines on the characteristics and management of hip pain.What this paper addsHip pain prevalence increased in adolescents over a 5‐year period in a cerebral palsy surveillance programme.Risk factors for hip pain were Gross Motor Function Classification System level V and severe hip subluxation.

Single-level selective dorsal rhizotomy (SDR), typically indicated for ambulatory patients, is a controversial topic for severe spastic cerebral palsy (CP) with Gross Motor Function Classification System (GMFCS) level IV or V. The objective of this case series and systematic literature review was to outline the indication and outcome of palliative SDR for nonambulatory patients with CP and GMFCS level IV and V, focusing on improvement of spasticity and of patient and caregiver reported quality of life assessment. A retrospective case series of patients with CP and GMFCS level IV or V who underwent single-level SDR at the authors' institution is presented. Furthermore, two databases (PubMed and Embase) were searched and a systematic review with a search string based on the terms "selective dorsal rhizotomy," "cerebral palsy," and "outcome" was conducted. The primary outcome was the reduction of spasticity based on the modified Ashworth scale (MAS). Secondary outcomes were change on the Gross Motor Function Measure-66 (GMFM-66), evaluation of patient-reported outcome measures (PROMs), surgical morbidity, and mortality. Eleven consecutive children under the age of 25 years undergoing palliative single-level SDR were included. All patients showed a reduction in MAS score (mean 1.09 ± 0.66 points) and no surgical morbidity and mortality occurred. For the systematic review results from our case series, in addition to 4 reports, 274 total patients were included. Reduction of spasticity based on MAS score was noted in all studies (mean range 1.09-3.2 points). Furthermore, in 2 studies spasticity of the upper extremities showed a MAS score reduction as well (range 1.7-2.8 points). The GMFM-66 score improved in 72% of the patients, while bladder function improved in 78% of the patients. Based on the PROMs, 92% of the patients/caregivers were satisfied with the outcome and their quality of life after the procedure. Two wound infections (2.7%) and one CSF leak (1.3%) occurred, while no surgery-related deaths were described. This analysis showed an improvement in spasticity, daily care, and comfort for patients with CP and GMFCS levels IV and V. Larger cohorts analyzing the outcome of palliative single-level SDR, based on the MAS, GMFM-66, and PROMs, are still needed and should be the focus of future studies. Systematic review registration no.: CRD42024495762 (https://www.crd.york.ac.uk/prospero/).

Surgery for spinal deformity in patients with cerebral palsy is reported to have high perioperative complication rates. However, minor complications are not generally reported and the influence of the varied severity of complications on length of stay is not known. Understanding the risk factors for both minor and major perioperative complications and their effect on length of stay is important information for clinicians who seek to improve care for this group of children. (1) What is the prevalence of postoperative complications in the first 30 days after surgery for spinal deformity in a New Zealand national cohort of children with cerebral palsy using the Clavien-Dindo classification? (2) What are the patient and operative predictive risk factors for minor and major perioperative complications? (3) What is the effect of year of operation on risk of minor and major perioperative complications? (4) What is the effect of perioperative complications on length of stay? We conducted a retrospective cohort study, identifying all children in New Zealand with a confirmed diagnosis of cerebral palsy who had surgery for a spinal deformity from January 1997 to January 2018. Two hundred-three patients with cerebral palsy (102 boys) were surgically treated for a spinal deformity, at a mean age of 14 ± 3 years, at one of three centers in New Zealand. Six children had Gross Motor Function Classification System Level II or III, 66 had Gross Motor Function Classification System Level IV, and 131 had Gross Motor Function Classification System Level V. Thirty-day perioperative complications were extracted from the patients' health records and classified according to the Clavien-Dindo system. Univariate and multivariate analyses were performed to identify patient and operative risk factors for complications, and the effect on length of stay. In all, 85% of patients experienced at least one perioperative complication. There were 300 Clavien-Dindo Grade I complications in 141 patients, 156 Clavien-Dindo Grade II complications in 102 patients, 25 Clavien-Dindo Grade III complications in 22 patients, 29 Clavien-Dindo Grade IV complications in 28 patients, and one Clavien-Dindo Grade V complication (death; 0.5%). Univariate analysis showed that multiple independent factors, Gross Motor Function Classification System Level V ability (odds ratio 2.13 [95% confidence interval 1.15 to 3.95]; p = 0.02), seizure disorder (OR 2.27 [95% CI 1.20 to 4.32]; p < 0.01), preoperative Cobb angle of greater than 70° (OR 2.40 [95% CI 1.20 to 4.78]; p < 0.01), and anterior approach to surgery (OR 3.29 [95% CI 1.21 to 8.90]; p = 0.02), were associated with Grade I complications but, of these factors, only the presence of a seizure disorder (OR 2.27 [95% CI 1.20 to 4.32]; p < 0.01) was associated with Grade I complications on multivariate analysis. Previous recurrent respiratory infections predicted an increased risk of Clavien-Dindo Grade II complications (OR 3.6 [95% CI 1.81 to 7.0]; p = 0.03). The presence of a feeding gastrostomy was associated with an increased risk of Clavien-Dindo Grade IV complications (OR 2.6 [95% CI 1.19 to 5.87]; p = 0.02). The year of operation did not influence the frequency of any grade of complication, but the presence of any complication led to an increased length of stay. Overall, 85% of patients with cerebral palsy had at least one complication after spinal deformity surgery and 25% had major complications (Grades III, IV, and V), with proportionate increases in the postoperative length of stay. Patient-specific factors aid in the identification of complication risk. Level II, prognostic study.

To evaluate whether spasticity measures are related to pain in adults with cerebral palsy (CP). This cross-sectional study recruited individuals aged 16 to 89years with a diagnosis of CP. Participants completed the Penn Spasm Frequency Scale (PSFS), Brief Pain Inventory (BPI), and PROMIS Pain Interference measures. The Modified Ashworth Scale (MAS) and Tardieu spasticity angles of six joints were rated and summed to composite MAS and Tardieu scores for each participant. Associations between spasticity and pain measures were evaluated. Forty-seven participants (27 females, 20 males) with a mean age of 35years 7months (range 18-77y) spanning all Gross Motor Function Classification System (GMFCS) levels were included. Twenty-six participants reported their average pain level on BPI as greater than 0 over the past week (median pain level 4.0). Median PSFS was 1.0 (range 0.0-1.0) and this correlated with average BPI and Pain Interference T scores (median 40.7; ρ=0.33 and ρ=0.31 respectively [both p=0.01]). When adjusted for pain medication use and age, MAS correlated with BPI (ρ=0.30; p=0.04). Other pain and spasticity measures, or GMFCS level, were not significantly related with pain interference or BPI rating. Age was weakly associated with BPI (slope=0.10; p<0.01). PROMIS Pain Interference was lower than population-based norms. Patient-rated spasm frequency demonstrated better association with pain levels and interference than physician-rated MAS and Tardieu. Pain was not associated with Gross Motor Function Classification System level. Pain increased with age, as anticipated. Self-reported spasm scores were associated with increased pain in contrast to clinical examination scales. Adjusted, summed spasticity on the Modified Ashworth Scalewas associated with painscores on the Brief Pain Inventory. Although pain is experienced by adults with cerebral palsy, pain did not interfere with activities.

Change in mobility function and its causes in adults with cerebral palsy by Gross Motor Function Classification System level: A cross-sectional questionnaire study.

First, to describe the impact of health conditions on daily activities over time in children with cerebral palsy (CP) and to create age-specific reference centiles. Second, to determine the amount of change typical over a 1-year period, across Gross Motor Function Classification System (GMFCS) levels. A prospective, cohort design, with five assessments over 2 years, involved 708 children with a confirmed diagnosis of CP participating in the On Track Study (396 males, 312 females; mean age 6y [SD 2y 7mo]; range 18mo-12y at first assessment; 32.1% in GMFCS level I, 22.7% in GMFCS level II, 11.2% in GMFCS level III, 18.2% in GMFCS level IV, 15.7% in GMFCS level V). The impact of health conditions on daily activities was assessed using the Child Health Conditions Questionnaire. Data were analyzed using mixed-effects models and quantile regression. Linear longitudinal trajectories describe the relatively stable impact of health conditions over time for each functional level for children aged 2 years to 12 years, with the lowest scores (least impact) in GMFCS level I and the highest scores (highest impact) in GMFCS level V. Centiles were created for children in each GMFCS level. A system to interpret the magnitude of change over time in centiles was developed. Longitudinal trajectories of co-occurring health conditions assist with understanding children's prognoses. Centiles assist in understanding a child's experience relative to children in similar GMFCS levels. Guidelines are provided to determine if children are progressing 'as expected', 'better than expected' or 'more poorly than expected' in regard to the impact of health conditions on daily activities. For children with cerebral palsy, the mean impact of health conditions on daily activities is relatively stable. Significant intraindividual and interindividual variability for the impact of health conditions exists, which complicates prognosis. Centiles enable interpretation of the impact of health conditions relative to Gross Motor Function Classification System level.

To review the potential predictors of outcome after single-event multilevel surgery (SEMLS) in children with cerebral palsy (CP). A literature search using the following criteria was performed in six electronic databases: (1) children with cerebral palsy; (2) analysed potential predictors of outcome after SEMLS; (3) minimum 12months follow-up. The potential predictors were predefined: sex; topographical distribution; socio-economic status; Gross Motor Function Classification System (GMFCS) level; preoperative kinematic summary statistic; age at surgery. Study quality was appraised with the methodological index for non-randomized studies (MINORS) and the Oxford Centre for Evidence-Based Medicine scale. Of the seven studies identified, the MINORS scores ranged from 9 to 11 and all were graded 2b on the Oxford Centre for Evidence-Based Medicine scale. There was little or no evidence to support sex, topographical distribution, or socio-economic status as predictive factors after SEMLS. Preoperative Gait Profile Score (GPS) was the best measure of expected improvement in gait kinematics. Parent-reported satisfaction and GPS were best after SEMLS in children graded GMFCS II. The best long-term results were seen in those aged between 10years and 12years of age. The candidate who might expect to realize the most improvement from SEMLS is aged between 10years and 12years, is in GMFCS level II, and has a poor preoperative GPS. Children aged 10 to 12years, in Gross Motor Function Classification System level II, with a poor preoperative Gait Profile Score might expect to realize the most improvement after single-event multilevel surgery.

To predict ambulatory status and Gross Motor Function Classification System (GMFCS) levels in patients with cerebral palsy (CP) by applying natural language processing (NLP) to electronic health record (EHR) clinical notes. Individuals aged 8 to 26 years with a diagnosis of CP in the EHR between January 2009 and November 2020 (~12 years of data) were included in a cross-sectional retrospective cohort of 2483 patients. The cohort was divided into train-test and validation groups. Positive predictive value, sensitivity, specificity, and area under the receiver operating curve (AUC) were calculated for prediction of ambulatory status and GMFCS levels. The median age was 15 years (interquartile range 10-20 years) for the total cohort, with 56% being male and 75% White. The validation group resulted in 70% sensitivity, 88% specificity, 81% positive predictive value, and 0.89 AUC for predicting ambulatory status. NLP applied to the EHR differentiated between GMFCS levels I-II and III (15% sensitivity, 96% specificity, 46% positive predictive value, and 0.71 AUC); and IV and V (81% sensitivity, 51% specificity, 70% positive predictive value, and 0.75 AUC). NLP applied to the EHR demonstrated excellent differentiation between ambulatory and non-ambulatory status, and good differentiation between GMFCS levels I-II and III, and IV and V. Clinical use of NLP may help to individualize functional characterization and management. Natural language processing (NLP) applied to the electronic health record (EHR) can predict ambulatory status in children with cerebral palsy (CP). NLP provides good prediction of Gross Motor Function Classification System level in children with CP using the EHR. NLP methods described could be integrated in an EHR system to provide real-time information.

The aim of this study is to evaluate the association between gross motor function classification system levels and implementation of home programs in children with cerebral palsy. Material-Method: This study is a cross-sectional study. The study group consists of 247 cerebral palsy patients who referred to rehabilitation centers and who agreed to participate in the study and their relatives. Gross Motor Function Classification System was used to find out the severity of cerebral palsy. The state of implementing home program was questioned through the parents of the children within the rehabilitation program. 51.6% of the children in the study were male, while 48.4% were female. Average age of the participants was 9.5±0.5 years (min.:0, max.:21). When the reasons for cerebral palsy were examined, 17.5% were found to be prenatal, 54.2% were found to be natal and 27.3% were found to be postnatal. Distribution of the children in terms of Gross Motor Function Classification System levels was found as 4.9% in level 1, as 21.9% in level 2, 34.4% in level 3, 25.1% in level 4, and 13.8% in level 5. Average age of the participant parents was found as 36.4±12.4 years (min.:18, max.:73). 93.8% of the parents were mothers, while 6.2% were fathers. Home program given by physiotherapist was applied to only 35.6% of the children by the parent. In this study, statistically significant difference was found between Gross Motor Function Classification System levels and application of home programs (p [Med-Science 2019; 8(1.000): 221-4]

The Pediatric Outcomes Data Collection Instrument (PODCI) was developed in 1994 as a patient-based tool for use across a broad age range and wide array of musculoskeletal disorders, including children with cerebral palsy (CP). The purpose of this study was to establish means and SDs of the Parent PODCI measures by age groups and Gross Motor Function Classification System (GMFCS) levels for ambulatory children with CP. This instrument was one of several studied in a prospective, multicenter project of ambulatory patients with CP between the aged 4 and 18 years and GMFCS levels I through III. Participants included 338 boys and 221 girls at a mean age of 11.1 years, with 370 diplegic, 162 hemiplegic, and 27 quadriplegic. Both baseline and follow-up data sets of the completed Parent PODCI responses were statistically analyzed. Age was identified as a significant predictor of the PODCI measures of Upper Extremity Function, Transfers and Basic Mobility, Global Function, and Happiness With Physical Condition. Gross Motor Function Classification System levels was a significant predictor of Transfers and Basic Mobility, Sports and Physical Function, and Global Function. Pattern of involvement, sex, and prior orthopaedic surgery were not statistically significant predictors for any of the Parent PODCI measures. Mean and SD scores were calculated for age groups stratified by GMFCS levels. Analysis of the follow-up data set validated the findings derived from the baseline data. Linear regression equations were derived, with age as a continuous variable and GMFCS levels as a categorical variable, to be used for Parent PODCI predicted scores. The results of this study provide clinicians and researchers with a set of Parent PODCI values for comparison to age- and severity-matched populations of ambulatory patients with CP.