scholarly journals Self-versus Proxy-Reported Pain in Children with Cerebral Palsy: A Population-Based Registry Study of 3783 Children

2020 ◽  
Vol 11 ◽  
pp. 215013272091152 ◽  
Author(s):  
Gunnar Hägglund ◽  
Amanda Burman-Rimstedt ◽  
Tomasz Czuba ◽  
Ann I. Alriksson-Schmidt

Objective: To assess how the prevalence of pain in a population-based sample of children and adolescents with cerebral palsy (CP) differ based on self- or proxy reporting. Methods: This cross-sectional registry study included 3783 children (58% boys), 1 to 18 years old, enrolled in the Swedish follow-up program for CP. Logistic regression was used to regress source of reporting (self or proxy) on the presence of general pain adjusted for age, sex, Gross Motor Function Classification System (GMFCS), and Communication Function Classification System (CFCS) levels, including marginal effects between source of reporting and adjusted covariates. Results: The pain item was self-reported in 45%, proxy-reported in 51%, and information was missing in 3%. Pain was reported in 44% of those who self-reported and in 41% of those who proxy-reported ( P = .04). The logistic regression showed that the average marginal effects of proxy versus self-reported pain were lower among children at GMFCS level IV (−0.14, 95% CI −0.17 to −0.03) and CFCS level I (−0.09, CI −0.16 to −0.01) and higher at CFCS level III (0.11, CI 0.00-0.22). There were no statistically significant differences in average marginal effects related to age, sex, or the other GMFCS and CFCS levels between proxy and self-reporting. Conclusions: Pain was more often reported by those who self-reported. However, after adjusting for age, sex, CFCS level, and GMFCS level, the proportion of reported pain was almost equal between self and proxy-reporting. Assuming that the self- and proxy-reported groups were not significantly different on relevant factors not controlled for the results indicate that presence of pain is equally reported by children and parents.

2010 ◽  
Vol 90 (8) ◽  
pp. 1148-1156 ◽  
Author(s):  
Olaf Verschuren ◽  
Manon Bloemen ◽  
Cas Kruitwagen ◽  
Tim Takken

BackgroundVery few objective data exist regarding aerobic performance in young people with cerebral palsy (CP). The characterization of aerobic fitness could provide baseline and outcome measures for the rehabilitation of young people with CP.ObjectiveThe objective of this study was to provide reference values for aerobic fitness in a group of children, adolescents, and young adults who had CP and who were classified at Gross Motor Function Classification System (GMFCS) level I or II. Data were collected with 10-m shuttle run tests.DesignThis investigation was a cross-sectional observational study conducted between August 2008 and June 2009.MethodsReference values were established using data from a total of 306 children, adolescents, and young adults who had CP, who were 6 to 20 years old, and who were recruited from 26 rehabilitation centers in the Netherlands, Switzerland, Australia, Canada, and the United States. A total of 211 participants were classified at GMFCS level I (mean age=12.2 years, SD=3.0), and 95 were classified at GMFCS level II (mean age=12.4 years, SD=3.2); 181 were male, and 125 were female. Aerobic fitness was reflected by the level achieved on the 10-m shuttle run tests.ResultsOn the basis of a total of 306 assessments from the 10-m shuttle run tests, 4 reference curves were created.LimitationsThe limitation of this study is the cross-sectional nature of the design.ConclusionsThis study provided height-related reference values for aerobic fitness in children, adolescents, and young adults who had CP, who were 6 to 20 years old, and who were classified at GMFCS level I or II. Generalized additive models for location, scale, and shape were used to construct centile curves. These curves are clinically relevant and provide a user-friendly method for the prediction of aerobic fitness in young people with CP.


Author(s):  
Dhirendra Kumar Singh ◽  
Nonica Laisram ◽  
Amita Malik ◽  
Vinay Kanaujia ◽  
Suman Badhal ◽  
...  

Introduction: Cerebral Palsy (CP) is one of the most common causes of disability in children. Neuroimaging is useful in determining structural or functional relationships in children with CP. It provides an opportunity to link various CP types to the localisation of the brain maldevelopment or lesion. Aim: To study association of motor function and brain structure on neuroimaging Magnetic Resonance Imaging (MRI) in CP children. Materials and Methods: This cross-sectional observational study was conducted in a tertiary care hospital from August 2015 to December 2016. A total of 50 diagnosed cases of CP were included after satisfying inclusion and exclusion criteria. After detailed history and clinical examination, MRI of brain was advised. All parameters were assessed in terms of Gross Motor Functional Classification System (GMFCS), Manual Ability Classification System (MACS) and MRI Grading. Categorical variables were presented as numbers and percentage and association was checked using Chi-square test or Fischer’s-exact test. A p-value of <0.05 was considered statistically significant. Results: Patients with CP in the study ranged from 2-12 years with mean age of 5.43 (±2.58) years. Out of 50 cases, 30 (60%) were in the age group of 2-5 years, 17 (34%) were in the age group of 6-10 years and three (6%) were in the age group of 11-12 years. Out of 50 enrolled cases, maximum cases were having GMFCS level 3 (n=14) and MACS level 2 (n=15). There was significant positive association (p-value <0.05) between GMFCS level and grading of MRI. Similar significant association was observed for analysis of association of MACS level and MRI Grading. Conclusion: The present study highlighted that there was a significant association between extent and type of brain lesion and motor functions (GMFCS and MACS levels). Type and extent of brain lesion helps clinician to understand prognosis of functional motor outcome in CP children.


2009 ◽  
Vol 89 (12) ◽  
pp. 1304-1314 ◽  
Author(s):  
Robert J. Palisano ◽  
Lin-Ju Kang ◽  
Lisa A. Chiarello ◽  
Margo Orlin ◽  
Donna Oeffinger ◽  
...  

Background Through social and community participation, children and youth with cerebral palsy (CP) form friendships, gain knowledge, learn skills, express creativity, and determine meaning and purpose in life. Objective The purposes of this study were: (1) to determine whether social and community participation of children and youth with CP differ based on age, sex, and gross motor function, and (2) to identify the types of activities in which social and community participation are highest. Design and Methods A prospective cross-sectional analytic design was used. The participants were a sample of convenience of 291 children (6–12 years of age) and 209 youth (13–21 years of age) with CP (55.4% males, 44.6% females) receiving services from 7 children's hospitals. Participants completed the Children's Assessment of Participation and Enjoyment (CAPE) by structured interview. Gross Motor Function Classification System (GMFCS) level was determined by the researchers. Results Youth did a higher percentage of activities with friends and others and outside the home than children. Children and youth in level I did a higher percentage of activities with friends and others compared with children and youth in levels II and III and in levels IV and V. Children and youth in level I and in levels IV and V did a higher percentage of activities outside the home than children and youth in levels II and III. Differences were not found between females and males. The percentage of activities done with friends and others and outside the home was highest for physical and skill-based activities. Limitations Findings cannot be attributed only to GMFCS level. Conclusions The ability to walk without restrictions is desirable for social and community participation. For children and youth with CP who have limitations in mobility, physical therapists have roles as consultants for accessibility, activity accommodations, and assistive technology and as advocates for inclusive environments.


2019 ◽  
Vol 34 (6) ◽  
pp. 332-338
Author(s):  
Carlos P. Viñals-Labañino ◽  
Ana E. Velazquez-Bustamante ◽  
Silvia I. Vargas-Santiago ◽  
Maria L. Arenas-Sordo

Cerebral palsy describes a group of movement and posture disorders that cause activity limitation, and are attributable to nonprogressive disorders that occur in the fetal or infant brain. The growth of these children should not be compared with those of the healthy population. We studied 452 children, 186 female and 266 male. We compared the results in 2 growth charts, Centers for Disease Control and Prevention (CDC) and cerebral palsy, and the results were statistically significant ( P = .00001). With the CDC charts, 40.71% of the patients were below the 5th percentile and only 5.5% of them when we used the charts for cerebral palsy patients. The Mexican cerebral palsy patients were similar to US cerebral palsy patients when we compared height ( P = .4075) and body mass index (BMI) ( P = .4075). Only the weight was found to be different ( P = .00001). All the correlation indexes were negative: Eating and Drinking Ability Classification System (EDACS)-BMI (rho = –0.4798) ( P = .00001), Communication Function Classification System (CFCS)-BMI (rho = –0.4353) ( P = .00001), and Gross Motor Function Classification System (GMFCS)-BMI (rho = –0.3584) ( P = .00001). The growth charts of the healthy pediatric population tend to overestimate the underweight. We propose to use cerebral palsy charts as a reference in our patients. It is possible to determine a functional profile (communication, gross motor function and safety, and feed efficiency) for the cerebral palsy population based on their BMI.


2019 ◽  
Vol 9 (1) ◽  
pp. 28 ◽  
Author(s):  
Tadashi Ito ◽  
Koji Noritake ◽  
Hiroshi Sugiura ◽  
Yasunari Kamiya ◽  
Hidehito Tomita ◽  
...  

This study examined the association between Gait Deviation Index (GDI) and the five-times-sit-to-stand test (FTSST) or gait speed results, which represent mobility and muscle strength of the lower extremities in ambulatory children with Gross Motor Function Classification System (GMFCS) level I and II spastic cerebral palsy. In this cross-sectional, observational study, three-dimensional gait analysis data were obtained during gait trials to evaluate the GDI in 35 children (age 5–16 years) with spastic palsy. Motor function was evaluated using FTSST and gait speed. Gross motor function was evaluated using GMFCS. Children with GMFCS level II spastic cerebral palsy demonstrated lower GDI (p < 0.001) and poorer FTSST (p = 0.031) than those with GMFCS level I spastic cerebral palsy. Correlation analysis showed that FTSST results were significantly correlated with GDI (r = −0.624; p < 0.001). Motor function may be important for the maintenance of gait quality in patients with GMFCS level I and II spastic cerebral palsy and should not be ignored. In conclusion, reduction in gait impairment may affect the values of FTSST and GDI in patients with spastic cerebral palsy who can ambulate without an assistive device.


BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Gunnar Hägglund ◽  
Sandra Julsen Hollung ◽  
Matti Ahonen ◽  
Guro L. Andersen ◽  
Guðbjörg Eggertsdóttir ◽  
...  

Abstract Background Spasticity is present in more than 80% of the population with cerebral palsy (CP). The aim of this study was to describe and compare the use of three spasticity reducing methods; Botulinum toxin-A therapy (BTX-A), Selective dorsal rhizotomy (SDR) and Intrathecal baclofen therapy (ITB) among children and adolescents with CP in six northern European countries. Methods This registry-based study included population-based data in children and adolescents with CP born 2002 to 2017 and recorded in the follow-up programs for CP in Sweden, Norway, Denmark, Iceland and Scotland, and a defined cohort in Finland. Results A total of 8,817 individuals were included. The proportion of individuals treated with SDR and ITB was significantly different between the countries. SDR treatment ranged from 0% ( Finland and Iceland) to 3.4% (Scotland) and ITB treatment from 2.2% (Sweden) to 3.7% (Denmark and Scotland). BTX-A treatment in the lower extremities reported 2017–2018 ranged from 8.6% in Denmark to 20% in Norway (p < 0.01). Mean age for undergoing SDR ranged from 4.5 years in Norway to 7.3 years in Denmark (p < 0.01). Mean age at ITB surgery ranged from 6.3 years in Norway to 10.1 years in Finland (p < 0.01). Mean age for BTX-A treatment ranged from 7.1 years in Denmark to 10.3 years in Iceland (p < 0.01). Treatment with SDR was most common in Gross Motor Function Classification System (GMFCS) level III, ITB in level V, and BTX-A in level I. The most common muscle treated with BTX-A was the calf muscle, with the highest proportion in GMFCS level I. BTX-A treatment of hamstring and hip muscles was most common in GMFCS levels IV-V in all countries. Conclusion There were statistically significant differences between countries regarding the proportion of children and adolescents with CP treated with the three spasticity reducing methods, mean age for treatment and treatment related to GMFCS level. This is likely due to differences in the availability of these treatment methods and/or differences in preferences of treatment methods among professionals and possibly patients across countries.


2016 ◽  
Vol 31 (7) ◽  
pp. 957-965 ◽  
Author(s):  
Christelle Pons ◽  
Sylvain Brochard ◽  
Philippe Gallien ◽  
Benoit Nicolas ◽  
Aurélie Duruflé ◽  
...  

Objective: To evaluate medication, rehabilitation and healthcare consumption in adults with CP as a function of Gross Motor Function Classification System (GMFCS) level. Design: Questionnaire-based cross-sectional study. Setting: Brittany, a French county. Subjects: Adults with cerebral palsy. Interventions: Questionnaires relating to drugs, orthotic devices, mobility aids, rehabilitation and medical input were sent to 435 members of a unique regional French network dedicated to adults with cerebral palsy. The questionnaire was completed by the participant or a helper if necessary. Results: Of the 282 responders, 7.8% had a GMFCS level of I, 14.2% II, 17.7% III, 29.1% IV and 31.2% V. Participants consumed a large amount of healthcare. Almost three-quarters took orally administered drugs, of which antispastic and antiepileptic drugs were among the most frequent. Nearly all patients had at least one type of rehabilitation, 87.2% had physiotherapy, 78% used at least one mobility aid and 69.5% used at least one orthotic device. The frequency of numerous inputs increased with GMFCS level. Specificities were found for each GMFCS level, e.g. participants with GMFCS level IV and V had a high level of medical input and a greater use of trunk-supporting devices, antireflux and laxative. Profiles could be established based on GMFCS levels. Conclusions: Adults with cerebral palsy use a large amount of drugs, mobility aids, orthotic devices, rehabilitation and medical input. Healthcare is targeted at cerebral palsy-related issues. GMFCS is a determinant of healthcare consumption and thus a useful tool for clinical practice to target care appropriately.


2019 ◽  
Vol 34 (13) ◽  
pp. 842-850
Author(s):  
Emmanuel Segnon Sogbossi ◽  
Damienne Houekpetodji ◽  
Toussaint G. Kpadonou ◽  
Yannick Bleyenheuft

Cerebral palsy is a common cause of pediatric motor disability. Although there are increasing amounts of data on the clinical profile of children with cerebral palsy in high-income countries, corresponding information about low-income countries and developing countries is lacking. Therefore, we aimed to describe the clinical spectrum of cerebral palsy in children in Benin, a representative West African low-income country. Our cross-sectional observational study included 114 children with cerebral palsy recruited from community-based rehabilitation centers and teaching hospitals (median age: 7 years, range 2-17; sex: 66% male). Data were collected through review of medical records and interviews with children’s mothers. Assessment included risk factors, clinical subtypes according to the Surveillance of CP in Europe criteria, severity of motor outcome scored by the Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System, comorbidities, and school attendance. We recorded a high prevalence of intrapartum adverse events. Seventeen percent of children had postneonatal cerebral palsy, with cerebral malaria being the most common cause. Most children were severely affected (67.5% as bilateral spastic; 54.4% as GMFCS IV or V), but severity declined substantially with age. Only 23% of the children with cerebral palsy had attended school. Poor motor outcomes and comorbidities were associated with school nonattendance. These results suggest that intrapartum risk factors and postnatal cerebral malaria in infants are opportune targets for prevention of cerebral palsy in Sub-Saharan low-income countries.


2020 ◽  
Vol 5 (1) ◽  
pp. 1-12
Author(s):  
Bambang Trisnowiyanto

Background:  The most common disorder or disability in childhood is cerebral palsy, obtained during the antenatal, perinatal or early postnatal period. Cerebral palsy is a non-progressive injury or brain lesion with very variable clinical manifestations. children with cerebral palsy have impaired movement, ability levels and functional limitations and affected body parts. Therefore, to find out the level of independence in children with cerebral palsy, it is necessary to have an examination carried out by health workers, especially physiotherapy. In this case, an examination using the Gross Motor Function Classification System (GMFCS). The purpose of this study was to determine the degree of independence of children with cerebral palsy in several regions in Java and Sumatra. Methods: A total of 315 children with cerebral palsy (mean ± SD)  participated in this cross-sectional study design. The research was conducted in March-June 2019. GMFCS data was collected from children with cerebral palsy in the parent community of cerebral palsy in 10 cities. The Kolmogorov-Smirnov test used for data normality test. Result: Overall research subjects from 10 cerebral palsy communities with a total sample of 315 children, most cerebral palsy with GMFCS level 4 as many as 117 children (37.1%), then GMFCS level 3 as many as 84 children (26.7%), GMFCS level 5 is 67 children (21.3%), level 2 GMFCS is 24 children (7.6%), and at least children with level 1 GMFCS are 23 children (7.3%). Conclusion: The conclusion is from a total of 315 children with cerebral palsy, the level of Indonesian children's independence based on GMFCS most of them are less independent.


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