scholarly journals Cohort profile: the Swiss Cerebral Palsy Registry (Swiss-CP-Reg) cohort study

2021 ◽  
Author(s):  
Fabiën N. Belle ◽  
Sandra Hunziker ◽  
Joel Fluss ◽  
Sebastian Grunt ◽  
Stephanie Juenemann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Data Collection ◽  
Personal Information ◽  
Knowledge Exchange ◽  
Motor Impairment ◽  
Motor Dysfunction ◽  
Level I ◽  
Gmfcs Level

BACKGROUND: Cerebral Palsy (CP) is a group of permanent disorders of movement and posture that follows injuries to the developing brain. It results in motor dysfunction and a wide variety of comorbidities like epilepsy, pain, speech, hearing and vision disorders, cognitive dysfunction, and eating and digestive difficulties. Central data collection is essential to study the epidemiology, clinical presentations, care, and quality of life of patients affected by CP. CP specialists founded the Swiss Cerebral Palsy Registry (Swiss-CP-Reg) in 2017. This paper describes the design, structure, aims and achievements of the Swiss-CP-Reg and presents first results. METHODS: Swiss-CP-Reg records patients of any age suffering from CP who are born, treated, or live in Switzerland. It collects data from medical records and reports, from questionnaires answered by patients and their families, and from data linkage with routine statistics and other registries. The registry contains information on diagnosis, clinical presentation, comorbidities, therapies, personal information, family history, and quality of life. RESULTS: From August 2017 to August 2021, 546 participants (55% males, mean age at registration 8 years (interquartile range [IQR]: 5-12) were enrolled in Swiss-CP-Reg. Most had been born at term (56%), were less than 2 years old at diagnosis (73%, median 9 months, IQR: 18-25), and were diagnosed with spastic CP (76%). Most (59%) live with a mild motor impairment (Gross Motor Function Classification System [GMFCS] level I or II), 12% with a moderate motor impairment (GMFCS level III), and 29% with a severe motor impairment (GMFCS level IV or V). In a subset of 170 participants, we measured intelligence quotient (IQ) and saw a reduced IQ by GMFCS scale increase. The Swiss-CP-Reg has a strong interest in research with currently 5 nested projects running, and many more planned. CONCLUSIONS: Swiss-CP-Reg collects and exchanges national data on people living with CP to answer clinically relevant questions. Its structure enables retrospective and prospective data collection and knowledge exchange between experts to optimise and standardise treatment and improve the health and quality of life of those diagnosed with CP in Switzerland.

scholarly journals Disease Severity and Motor Impairment Correlate With Health-Related Quality of Life in AP-4-Associated Hereditary Spastic Paraplegia

2021 ◽  
Vol 7 (4) ◽  
pp. e605
Author(s):  
Catherine Jordan ◽  
Gregory Geisel ◽  
Julian E. Alecu ◽  
Bo Zhang ◽  
Mustafa Sahin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Hereditary Spastic Paraplegia ◽  
Motor Impairment ◽  
Health Related Quality ◽  
Spastic Paraplegia ◽  
Childhood Onset ◽  
Related Quality ◽  
Health Related

ObjectiveAP-4-associated hereditary spastic paraplegia (AP-4-HSP) is a childhood-onset neurogenetic disease and mimic of cerebral palsy. Data on health-related quality of life (HRQoL) are lacking. To establish a metric for HRQoL and caregiver priorities, we used the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire to assess HRQoL in correlation with disease severity in 64 patients with AP-4-HSP.MethodsA cross-sectional analysis of caregiver-reported HRQoL was performed using the CPCHILD questionnaire in combination with a detailed clinical characterization.ResultsHRQoL was impaired in all domains in patients with AP-4-HSP (mean score: 59.6 ± 12.6 [SD]), with no significant difference between the 4 subtypes. Age, as a surrogate for disease duration, and Spastic Paraplegia Rating Scale scores, as an indicator for corticospinal tract dysfunction and motor impairment, correlated with lower CPCHILD scores (Pearson r = −0.31, p = 0.01 and r = −0.52, p < 0.0001, respectively). Patients with tetraplegia showed lower CPCHILD scores compared with individuals with diplegia or no spasticity. Wheelchair dependence reduced HRQoL in all domains. The presence of seizures, including medically refractory epilepsy, was not associated with lower CPCHILD scores. Standardized assessment of caregiver priorities identified several areas of high importance to HRQoL.ConclusionsWe show that the CPCHILD questionnaire, developed for use in children with cerebral palsy, can be used to assess HRQoL in patients with childhood-onset complex hereditary spastic paraplegia. HRQoL is reduced in patients with AP-4-HSP and correlates with the degree of motor impairment. These results provide a framework for medical decision making and a baseline for the future development of treatment guidelines and interventional trials.

scholarly journals What predicts the proxy-reported health-related quality of life of adolescents with cerebral palsy in Bangladesh?

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Rosalie Power ◽  
Claire Galea ◽  
Mohammad Muhit ◽  
Eamin Heanoy ◽  
Tasneem Karim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Cerebral Palsy ◽  
Motor Impairment ◽  
Health Related Quality ◽  
Middle Income ◽  
Related Quality ◽  
Health Related ◽  
Caregiver Mental Health

Abstract Background The health-related quality of life (HRQoL) of adolescents with CP in low and middle-income countries is often poor, as is the case in Bangladesh. This exploratory study examined what factors predict the proxy-reported HRQoL of adolescents with CP in rural Bangladesh, a typical low- and middle-income country (LMIC). Methods Adolescents with CP (10 to 18y) were identified using the Bangladesh Cerebral Palsy Register. HRQoL was assessed using the Cerebral Palsy Quality of Life-Teens proxy-report questionnaire (CPQoL-Teens), adolescent mental health using the Strengths and Difficulty Questionnaire (SDQ) and caregiver mental health using the Depression, Anxiety and Stress Scale (DASS-21). Theoretical and statistical interests (i.e. bivariate analysis, p < 0.05) identified potential predictors which were entered into hierarchical multiple linear regression (HMLR) models in order of clinical significance; HMLR related adolescent clinical characteristics, adolescent and caregiver mental health and proxies of socioeconomic status to CPQoL-Teens dimensions. Results One hundred fifty-four adolescents with CP (mean age 15y 1mo, SD 1y 8mo, female 31.2%) participated in this study. Twenty-four factors were identified to explore for relationship to adolescent proxy-reported HRQoL. Fifteen of the factors correlated to one or more CPQoL-Teens dimension; strongest correlation was between ‘feelings about functioning’ and motor impairment (r = 0.545). Nine were predictive of CPQoL-Teens dimensions; adolescent sex, school attendance, severity of motor impairment, hearing and speech impairment, mother’s education, primary caregiver depression and stress, and having a sanitary latrine at home resulting in score changes of between 0.79 (95% CI 0.24 to 1.35) to 35.1 (95% CI 6.03 to 64.22). Conclusions Many of the factors predicting the proxy-reported HRQoL of adolescents with CP are amenable to intervention, and have the potential to improve adolescent wellbeing. Several determinants are priorities of the sustainable development goals (SDGs); these findings should inform resource prioritization to improve the wellbeing of adolescents with CP in Bangladesh and other LMICs.

scholarly journals Hip dysplasia among children with spastic cerebral palsy in rural Bangladesh

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Tasneem Karim ◽  
Mahmudul Hassan Al Imam ◽  
Prue Golland ◽  
Aynul Islam Khan ◽  
Iqbal Hossain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Hip Dysplasia ◽  
Clinical History ◽  
Population Based ◽  
Spastic Cerebral Palsy ◽  
Study Cohort ◽  
X Rays ◽  
Gmfcs Level

Abstract Background Hip dysplasia is common among children with cerebral palsy (CP), particularly in spastic CP. It can result in pain, reduced function and quality of life. However, the burden of hip dysplasia among children with CP in llow-and middle-income countries (LMICs) like Bangladesh is unknown. We aimed to define the burden of hip dysplasia among children with spastic CP in Bangladesh. Methods This study includes a subset of the Bangladesh CP Register (BCPR) study cohort who were registered between January and March 2015. The BCPR is a population-based surveillance of children with CP (aged < 18 years) operating in a northern sub-district (Shahjadpur; child population ~ 226,114) of Bangladesh. Community-based key informant’s method (KIM) survey conducted to identify children with CP in the surveillance area. A diagnosis of CP was made based on clinical history and examination by the study physicians and physiotherapist. Study participants had an antero-posterior (AP) X-ray of their pelvis. The degree of subluxation was assessed by calculating the migration percentage (MP). Results During the study period, 196 children with CP were registered, 144 had spastic CP. 40 children with spastic CP (80 hips) had pelvic X-Rays (mean age 9.4 years, range 4.0–18.0 years) and 32.5% were female. Gross Motor Function Classification System (GMFCS) showed 37.5% (n = 15) with GMFCS level I-II and 62.5% (n = 25) with GMFCS level III-V. Twenty percent (n = 8) of the children had hip subluxation (MP: 33–80%). Osteopenic changes were found in 42.5% (n = 17) children. Conclusions To the best of our knowledge this is one of the first studies exploring hip dysplasia among children with spastic CP in Bangladesh. Our findings reflect that hip dysplasia is common among children with spastic CP. Introduction of hip surveillance programmes is imperative for prevention of secondary complications, reduced function and poor quality of life among these children.

scholarly journals What predicts the health-related quality of life of adolescents with cerebral palsy in Bangladesh?

2019 ◽  
Author(s):  
Rosalie Power ◽  
Claire Galea ◽  
Mohammad Muhit ◽  
Eamin Heanoy ◽  
Tasneem Karim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Cerebral Palsy ◽  
Motor Impairment ◽  
Health Related Quality ◽  
Middle Income ◽  
Related Quality ◽  
Health Related ◽  
Caregiver Mental Health

Abstract Background: The health-related quality of life (HRQoL) of adolescents with CP in low and middle-income countries is often poor, as is the case in Bangladesh. This exploratory study examined what factors predict the proxy-reported HRQoL of adolescents with CP in rural Bangladesh, a typical low- and middle-income country (LMIC). Methods: Adolescents with CP (10 to 18y) were identified using the Bangladesh Cerebral Palsy Register. HRQoL was assessed using the Cerebral Palsy Quality of Life-Teens proxy-report questionnaire (CPQoL-Teens), adolescent mental health using the Strengths and Difficulty Questionnaire (SDQ) and caregiver mental health using the Depression, Anxiety and Stress Scale (DASS-21). Theoretical and statistical interests (i.e. bivariate analysis, p<0.05) identified potential predictors which were entered into hierarchical multiple linear regression (HMLR) models in order of clinical significance; HMLR related adolescent clinical characteristics, adolescent and caregiver mental health and proxies of socioeconomic status to CPQoL-Teens dimensions. Results: 154 adolescents with CP (mean age 15y 1mo, SD 1y 8mo, female 31.2%) participated in this study. Twenty-four factors were identified to explore for relationship to adolescent proxy-reported HRQoL. Fifteen of the factors correlated to one or more CPQoL-Teens dimension; strongest correlation was between ‘feelings about functioning’ and motor impairment (r=0.545). Nine were predictive of CPQoL-Teens dimensions; adolescent sex, school attendance, severity of motor impairment, hearing and speech impairment, mother’s education, primary caregiver depression and stress, and having a sanitary latrine at home resulting in score changes of between 0.79 (95% CI 0.24 to 1.35) to 35.1 (95% CI 6.03 to 64.22). Conclusions: Many of the factors predicting the proxy-reported HRQoL of adolescents with CP are amenable to intervention, and have the potential to improve adolescent wellbeing. Several determinants are priorities of the sustainable development goals (SDGs); these findings should inform resource prioritization to improve the wellbeing of adolescents with CP in Bangladesh and other LMICs.

scholarly journals Determinants of health-related quality of life among adolescents with cerebral palsy in Bangladesh

2019 ◽  
Author(s):  
Rosalie Power ◽  
Claire Galea ◽  
Mohammad Muhit ◽  
Eamin Heanoy ◽  
Tasneem Karim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Cerebral Palsy ◽  
Motor Impairment ◽  
Health Related Quality ◽  
Middle Income ◽  
Related Quality ◽  
Health Related ◽  
Low And Middle Income

Abstract Background: The health-related quality of life (HRQoL) of adolescents with cerebral palsy (CP) in low and middle-income countries is often poor, as is the case in Bangladesh. This study examined what modifiable factors are predictors of HRQoL among adolescents with CP in rural Bangladesh, a typical low- and middle-income country (LMIC). Methods: Adolescents with CP (10 to 18y) were identified using the Bangladesh Cerebral Palsy Register. HRQoL was assessed with the Cerebral Palsy Quality of Life-Teens questionnaire (CPQoL-Teens). Bivariate analysis and hierarchical multiple linear regression models related adolescent clinical characteristics and mental health, caregiver mental health and proxies of socioeconomic status to HRQoL outcomes. Results: 154 adolescents with CP (mean age 15y 1mo SD 1y 8mo, female n =31.2%) participated in this study. Numerous characteristics correlated to HRQoL; strongest correlation was between ‘feelings about functioning’ and motor impairment ( r =0.545). Nine factors were predictive of CPQoL-Teens dimensions; adolescent sex, school attendance, severity of motor impairment, hearing and speech impairment, mother’s education, primary caregiver depression and stress, and having a sanitary latrine at home resulting in score changes of between 0.79 (95% CI 0.24 to 1.35) to 35.1 (95% CI 6.03 to 64.22). Conclusions: Many of the factors predicting the HRQoL of adolescents with CP are amenable to intervention, and have the potential to improve adolescent wellbeing. Several determinants are priorities of the sustainable development goals (SDGs); these findings should inform resource prioritization to improve the wellbeing of adolescents with CP in Bangladesh and other LMICs.

scholarly journals Quality of Life assessment among children and adolescents with Cerebral Palsy. An observational descriptive study in the city of Naples and its surroundings

2020 ◽  
Author(s):  
Marino Simone ◽  
Scuotto Luciana
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Children And Adolescents ◽  
Main Tool ◽  
Small Sample ◽  
Life Assessment ◽  
Starting Point ◽  
Level I ◽  
The City

This study aims to assess the Quality of Life in children and adolescents with Cerebral Palsy in the city of Naples and its surroundings. We have tried to photograph the QoL of subjects with cronic pathology in a specific social context and historic moment, and, if possible, delegate the priority areas of intervention and the actions for QoL improvement to other studies. PedsQL 4.0- Generic Core ScaleTM was the main tool for the assessment of QoL in young subject with CP, which has been added to a personal data sheet. The sample has been stratified according to the severity of disease as reported by the Gross Motor Function Classification System (from level I to V, in order of increasing severity), to age group as reported by PedsQL questionnaire (8-12 years and 13-18 years) and finally by gender. The statistical analysis assesses the differences in the median values related to age, Physical Score, Psychosocial Score and Total Score, of all groups whose p value to the U Mann Whitney or Kruskal- Wallis test is less than 0.05. 27 patients, 13 males and 14 females, and their caregiver who are all mothers, were enrolled; of these 27 patients, 18 are between 8 and 12 years old and 9 are between 13 and 18 years old. 4 of these patients due to the presence of cognitive impairment were not able to answer the questionnaire, so only the information given by the caregivers were taken into account. Referring to GMFCS, 11 patients are evalueted as level I, 5 patients as level II, 1 as III, 3 patients as IV and 7 patients as V. Patients come from 5 Physical Rehabilitation centers in Naples and its surrounding. Significant differences were found between patients from 8- 12 years and 13-18 years, where the adoloscents reported a drastic drop of Quality of Life (p= 0.22 on Total Score). Furthermore, the initial hypothesis about the inverse proportionality between decrease in QoL and the severity of patology (evalueted with GMFCS) is confirmed, both from what reported by patients and their caregivers (p= 0.014 in Total Score for both groups). Finally it was found that the caregivers of patients with low severity of patologhy (level I and II) understimate the Quality of Life of their children, both in Physical funcitioning (p= 0.02) and in the Total Score (p= 0.04) The international literature agrees with result shown by this work and this allows us to ask question that can be shared even beyond the national borders. Moreover, this small sample study can be a starting point for a future multicentric survey on regional territories, in order to allow an assessment of the Quality of Health assistance and to found any discrepancies.

scholarly journals Influence of adapted hip-hop dancing on quality of life and social participation among children/adolescents with cerebral palsy

2019 ◽  
Vol 77 (10) ◽  
pp. 712-722
Author(s):  
Joseana Wendling WITHERS ◽  
Sandra Baggio MUZZOLON ◽  
Marise Bueno ZONTA
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Data Collection ◽  
Child Behavior ◽  
Hip Hop ◽  
Child Behavior Checklist ◽  
Emotional And Behavioral Problems ◽  
Control Group ◽  
Data Collection Instrument

ABSTRACT To describe the influence of adapted hip-hop dancing on the quality of life (QoL) and biopsychosocial profile of children/adolescents with cerebral palsy (CP). Methods Pilot study including 18 children/adolescents with CP and Gross Motor Function Classification System levels I and II. Nine participants took part in an adapted hip-hop dance practice (study group; SG), and nine others served as the control group (CG). All participants were assessed with the Pediatric Outcomes Data Collection Instrument and the Child Behavior Checklist at baseline and after at least three months of dance practice and a public performance (SG) or a similar period without intervention (CG). Results Improvement in QoL was observed in the SG in the domains of transfer and basic mobility (p = 0.00*), sporting and physical function (p = 0.04*), and global function and symptoms (p = 0.01*). In the SG, there was a reduction in emotional and behavioral problems and an increase in social competence in the biopsychosocial profile. Greater participation in adapted hip-hop dancing was associated with a greater gain in the transfer and basic mobility domains (p = 0.05*) of the Pediatric Outcomes Data Collection Instrument and in the activities (p = 0.05*) and social (p = 0.04*) scales of the Child Behavior Checklist. Conclusions Children/adolescents with CP participating in adapted hip-hop dance practice showed improvement in QoL and biopsychosocial profile scores.

scholarly journals What predicts the proxy-reported health-related quality of life of adolescents with cerebral palsy in Bangladesh?

2019 ◽  
Author(s):  
Rosalie Power ◽  
Claire Galea ◽  
Mohammad Muhit ◽  
Eamin Heanoy ◽  
Tasneem Karim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Cerebral Palsy ◽  
Motor Impairment ◽  
Health Related Quality ◽  
Middle Income ◽  
Related Quality ◽  
Health Related ◽  
Caregiver Mental Health

Abstract Background: The health-related quality of life (HRQoL) of adolescents with CP in low and middle-income countries is often poor, as is the case in Bangladesh. This exploratory study examined what factors predict the proxy-reported HRQoL of adolescents with CP in rural Bangladesh, a typical low- and middle-income country (LMIC). Methods: Adolescents with CP (10 to 18y) were identified using the Bangladesh Cerebral Palsy Register. HRQoL was assessed using the Cerebral Palsy Quality of Life-Teens proxy-report questionnaire (CPQoL-Teens), adolescent mental health using the Strengths and Difficulty Questionnaire (SDQ) and caregiver mental health using the Depression, Anxiety and Stress Scale (DASS-21). Theoretical and statistical interests (i.e. bivariate analysis, p <0.05) identified potential predictors which were entered into hierarchical multiple linear regression (HMLR) models in order of clinical significance; HMLR related adolescent clinical characteristics, adolescent and caregiver mental health and proxies of socioeconomic status to CPQoL-Teens dimensions. Results: 154 adolescents with CP (mean age 15y 1mo, SD 1y 8mo, female 31.2%) participated in this study. Twenty-four factors were identified to explore for relationship to adolescent proxy-reported HRQoL. Fifteen of the factors correlated to one or more CPQoL-Teens dimension; strongest correlation was between ‘feelings about functioning’ and motor impairment ( r =0.545). Nine were predictive of CPQoL-Teens dimensions; adolescent sex, school attendance, severity of motor impairment, hearing and speech impairment, mother’s education, primary caregiver depression and stress, and having a sanitary latrine at home resulting in score changes of between 0.79 (95% CI 0.24 to 1.35) to 35.1 (95% CI 6.03 to 64.22). Conclusions: Many of the factors predicting the proxy-reported HRQoL of adolescents with CP are amenable to intervention, and have the potential to improve adolescent wellbeing. Several determinants are priorities of the sustainable development goals (SDGs); these findings should inform resource prioritization to improve the wellbeing of adolescents with CP in Bangladesh and other LMICs.

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