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The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.

ABSTRACT: BACKGROUND:To explore the lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy. METHODS:A convergent parallel mixed methods design was undertaken. First, a quantitative cross-sectional study of participants able to self-report their quality of life was undertaken. This study characterised pain chronicity, intensity, body locations, and quality of life. Second, semi-structured interviews were undertaken with a subset of children and adolescents experiencing chronic pain. RESULTS:Twenty-five children and adolescents took part in the cross-sectional study, 23 of whom experienced chronic pain and 13 of moderate intensity. Pain was often located in multiple bodily regions (6/21), with no trends in quality of life outcomes detected. Eight participated in semi-structured interviews, which identified three key themes including 'lives embedded with dyskinesia', 'real world challenges of chronic pain', and 'still learning strategies to manage their pain and dyskinesia'. CONCLUSIONS:A high proportion of children and adolescents with cerebral palsy and dyskinesia who were able to self-report experienced chronic pain. The physical and emotional impacts of living with chronic pain and dyskinesia existed along a spectrum, from those with lesser to greater extent of their impacts. Children and adolescents may benefit from targeted chronic pain education and management within bio-psychosocial models.

SUBMITTER: McKinnon CT

PROVIDER: S-EPMC7076980 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.

McKinnon Clare T CT White Jennifer H JH Morgan Prue E PE Antolovich Giuliana C GC Clancy Catherine H CH Fahey Michael C MC Harvey Adrienne R AR

BMC pediatrics 20200317 1

<h4>Background</h4>To explore the lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.<h4>Methods</h4>A convergent parallel mixed methods design was undertaken. First, a quantitative cross-sectional study of participants able to self-report their quality of life was undertaken. This study characterised pain chronicity, intensity, body locations, and quality of life. Second, semi-structured interviews were undertaken with a subset of children and adoles ...[more]

PMID: 32183802

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Project description:The purpose of this pilot study was to compare walking speed, an important component of gait, in the laboratory and daily life, in young individuals with cerebral palsy (CP) and with typical development (TD), and to quantify to what extent gait observed in clinical settings compares to gait in real life. Fifteen children, adolescents and young adults with CP (6 GMFCS I, 2 GMFCS II, and 7 GMFCS III) and 14 with TD were included. They wore 4 synchronized inertial sensors on their shanks and thighs while walking at their spontaneous self-selected speed in the laboratory, and then during 2 week-days and 1 weekend day in their daily environment. Walking speed was computed from shank angular velocity signals using a validated algorithm. The median of the speed distributions in the laboratory and daily life were compared at the group and individual levels using Wilcoxon tests and Spearman's correlation coefficients. The corresponding percentile of daily life speed equivalent to the speed in the laboratory was computed and observed at the group level. Daily-life walking speed was significantly lower compared to the laboratory for the CP group (0.91 [0.58-1.23] m/s vs 1.07 [0.73-1.28] m/s, p = 0.015), but not for TD (1.29 [1.24-1.40] m/s vs 1.29 [1.20-1.40] m/s, p = 0.715). Median speeds correlated highly in CP (p < 0.001, rho = 0.89), but not in TD. In children with CP, 60% of the daily life walking activity was at a slower speed than in-laboratory (corresponding percentile = 60). On the contrary, almost 60% of the daily life activity of TD was at a faster speed than in-laboratory (corresponding percentile = 42.5). Nevertheless, highly heterogeneous behaviors were observed within both populations and within subgroups of GMFCS level. At the group level, children with CP tend to under-perform during natural walking as compared to walking in a clinical environment. The heterogeneous behaviors at the individual level indicate that real-life gait performance cannot be directly inferred from in-laboratory capacity. This emphasizes the importance of completing clinical gait analysis with data from daily life, to better understand the overall function of children with CP.

Project description:BackgroundChronic pain is estimated to impact one-in-three children with cerebral palsy (CP). Psychological interventions including behavioral and cognitive strategies play a key role in chronic pain management, but there is a paucity of research exploring their use in children with CP.AimTo investigate the acceptability and feasibility of biofeedback assisted relaxation training (BART) for chronic pain management in children with CP using a mixed-methods study design.MethodsBiofeedback assisted relaxation training was delivered via BrightHearts, an iOS application. Inclusion criteria were as follows: CP; self-reported chronic pain; age 9-18 years; and fluent English speaker. Children used BrightHearts for ten minutes daily, over four weeks. Qualitative post-intervention interviews were undertaken (child, parent) and quantitative pre-post measures (child) were gathered including pain intensity (numerical rating scale), and anxiety intensity (numerical rating scale). Content analysis was conducted for qualitative data. Descriptive statistics and exploratory analyses were performed for quantitative data.ResultsTen children participated (n = 3 male, mean age = 13.1 years SD = 2.5 years, GMFCS level I = 4, II = 2, III = 3, IV = 1). Predominant movement disorder was spasticity (n = 7) and dyskinesia, mainly dystonia (n = 3). Content analysis suggested an overarching theme "BrightHearts is a good thing to put in my toolbox" providing an overall representation of participants' experiences. For many, BrightHearts was a valuable supplement to children's pain management strategies: "The source of the pain is still there, but the actual effect of the pain isn't so relevant." Four sub-themes were identified: "Managing my pain;" "Managing my anxiety and stress," "Helping me do what I need to do;" and "Fitting it into my life." Some participants reported improvements in their anxiety management, and others described benefits in sleep and school following improved pain/anxiety management. A range of practical and personal factors within this heterogeneous group presented barriers to using BrightHearts including limited time, attention, and boredom. Seven-out-of-eight children would recommend BrightHearts to others with chronic pain and six-out-of-eight noticed a difference in their pain since using BrightHearts (n = 2 missing data). Non-significant reductions in pain or anxiety intensity scores were found following the intervention.ConclusionThis pilot suggests BrightHearts is an acceptable and feasible intervention for chronic pain management in children with CP and may be useful for some children as part of a multimodal approach.

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.

Project description:BackgroundCerebral palsy (CP) is the most common physical disability among children (2.5 to 3.6 cases per 1000 live births). Inadequate physical activity (PA) is a major problem effecting the health and well-being of children with CP. Practical, yet accurate measures of PA are needed to evaluate the effectiveness of surgical and therapy-based interventions to increase PA. Accelerometer-based motion sensors have become the standard for objectively measuring PA in children and adolescents; however, current methods for estimating physical activity intensity in children with CP are associated with significant error and may dramatically underestimate HPA in children with more severe mobility limitations. Machine learning (ML) models that first classify the PA type and then predict PA intensity or energy expenditure using activity specific regression equations may be more accurate than standalone regression models. However, the feasibility and validity of ML methods has not been explored in youth with CP. Therefore, the purpose of this study was to develop and test ML models for the automatic identification of PA type in ambulant children with CP.MethodsTwenty two children and adolescents (mean age: 12.8 ± 2.9 y) with CP classified at GMFCS Levels I to III completed 7 activity trials while wearing an ActiGraph GT3X+ accelerometer on the hip and wrist. Trials were categorised as sedentary (SED), standing utilitarian movements (SUM), comfortable walking (CW), and brisk walking (BW). Random forest (RF), support vector machine (SVM), and binary decision tree (BDT) classifiers were trained with features extracted from the vector magnitude (VM) of the raw acceleration signal using 10 s non-overlapping windows. Performance was evaluated using leave-one-subject out cross validation.ResultsSVM (82.0-89.0%) and RF (82.6-88.8%) provided significantly better classification accuracy than BDT (76.1-86.2%). Hip (82.7-85.5%) and wrist (76.1-82.6%) classifiers exhibited comparable prediction accuracy, while the combined hip and wrist (86.2-89.0%) classifiers achieved the best overall performance. For all classifiers, recognition accuracy was excellent for SED (94.1-97.9%), good to excellent for SUM (74.0-96.6%) and brisk walking (71.5-86.0%), and modest for comfortable walking (47.6-70.4%). When comfortable and brisk walking were combined into a single walking class, recognition accuracy ranged from 90.3 to 96.5%.ConclusionsML methods provided acceptable classification accuracy for detection of a range of activities commonly performed by ambulatory children with CP. The resultant models can help clinicians more effectively monitor bouts of brisk walking in the community. The results indicate that 2-step models that first classify PA type and then predict energy expenditure using activity specific regression equations are worthy of exploration in this patient group.

Dataset Information

The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.

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The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.

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