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Author(s):  
Aniza Ismail ◽  
Ruhana Sk Abd Razak ◽  
Leny Suzana Suddin ◽  
Aidalina Mahmud ◽  
Sazlina Kamaralzaman ◽  
...  

The economic burden is a major concern for parents/caregivers of children with cerebral palsy (CP). This study used the sequential explanatory mixed-method approach to explorethe economic burden on parents/caregivers with a CP child in Malaysia and the factors associated with the economic burden. The study period spanned April 2020 and December 2020. A total of 106 questionnaire respondents were selected for the quantitative part, and 15 were interviewed to obtain qualitative input. A retrospective costing analysis was conducted based on the cost data obtained from the questionnaire. The majority of the children were GrossMotor Function Classification System (GMFCS) Level 5 (71%), quadriplegic (63%), and aged >4 years (90%). The estimated annual median total economic burden on the parents/caregivers per child in 2020 was RM52,540.00 (~USD12,515.03), with indirect cost being the greatest cost (RM28,800.00, ~USD6860.16), followed by developmental cost (RM16,200.00, ~USD3858.84), direct healthcare cost (RM4540.00, ~USD1081.43) and direct non-healthcare cost (RM3000.00, ~USD714.60). The annual household income was identified as a significant determinant factor (p=0.019, 95% CI: 0.04, 0.40) of the economic burden. The participants’ responses during the in-depth interview in the qualitative part of the study supported the premise that socioeconomic factors play a substantial role in determining the total economic burden. Our findings may aid local policymakers when planning the greater provision of support to the affected families in the future, especially for the parents/caregivers of children with CP, who are facing socioeconomic challenges.


2021 ◽  
Author(s):  
Michaela V. Bonfert ◽  
Evelyn Jelesch ◽  
A. Sebastian Schroeder ◽  
Julia Hartmann ◽  
Helene Koenig ◽  
...  

AbstractThe Gait Outcome Assessment List (GOAL) is a patient or caregiver-reported assessment of gait-related function across different domains of the International Classification of Functioning, Disability, and Health (ICF) developed for ambulant children with cerebral palsy (CP). So far, the questionnaire is only available in English. The aim of this study was to translate the GOAL into German and to evaluate its reliability and validity by studying the association between GOAL scores and gross motor function as categorized by the gross motor function classification system (GMFCS) in children with cerebral palsy (CP). The GOAL was administered to primary caregivers of n = 91 children and adolescents with CP (n = 32, GMFCS levels I; n = 27, GMFCS level II; and n = 32, GMFCS level III) and n = 15 patients were capable of independently completing the whole questionnaire (GMFCS level I). For assessing test–retest reliability, the questionnaire was completed for a second time 2 weeks after the first by the caregivers of n = 36 patients. Mean total GOAL scores decreased significantly with increasing GMFCS levels with scores of 71 (95% confidence interval [CI]: 66.90–74.77) for GMFCS level I, 56 (95% CI: 50.98–61.86) for GMFCS level II, and 45 (95% CI: 40.58–48.48) for GMFCS level III, respectively. In three out of seven domains, caregivers rated their children significantly lower than children rated themselves. The test–retest reliability was excellent as was internal consistency given the GOAL total score. The German GOAL may serve as a much needed patient-reported outcome measure of gait-related function in ambulant children and adolescents with CP.


2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Karina A. Zapata ◽  
Charter L. Rushing ◽  
Mauricio R. Delgado ◽  
Chanhee Jo

2021 ◽  
pp. 1-10
Author(s):  
Jennifer M. Ryan ◽  
Grace Lavelle ◽  
Marika Noorkoiv ◽  
Damien Kiernan ◽  
Nicola Theis ◽  
...  

INTRODUCTION: The aim of this study was to investigate the association between gait parameters, gross motor function and physical activity (PA) in young people with cerebral palsy (CP). METHODS: Thirty-eight adolescents aged between 10–19 years with spastic CP in GMFCS levels I-III (mean [standard deviation] age 13.7 [2.4] yr; 53%female) were included in this cross-sectional study. Hip, knee and ankle joint excursion and stance time was assessed using 3D gait analysis. Self-selected walking speed was assessed during a timed 10 m overground walk and treadmill walking. Gross motor function was assessed using dimensions D and E of the Gross Motor Function Measure (GMFM-66). Moderate-to-vigorous PA, light PA and step-count were assessed using an accelerometer. Linear regression was used to examine associations. RESULTS: After adjusting for age, sex and GMFCS level, percentage stance time was associated with dimension E of the GMFM-66 (β= –0.29, 95%CI –0.54 to –0.05). There was no evidence that any other gait parameters were associated with GMFM-66 dimensions D or E. There was also no evidence that gait parameters or GMFM-66 dimensions D or E were associated with step-count or time in PA after adjusting for age, sex and GMFCS level. DISCUSSION: The findings provide an insight into the complexity of the relationship between gait quality or ability at the impairment level, function as measured in a controlled environment, and the performance of habitual PA, which is essential for health among children with CP.


2021 ◽  
Author(s):  
Fabiën N. Belle ◽  
Sandra Hunziker ◽  
Joel Fluss ◽  
Sebastian Grunt ◽  
Stephanie Juenemann ◽  
...  

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.


2021 ◽  
Vol 12 ◽  
Author(s):  
Roshaan Salie ◽  
Maaike M. Eken ◽  
Kirsten A. Donald ◽  
A. Graham Fieggen ◽  
Nelleke G. Langerak

Background: Research in high income countries shows that people with cerebral palsy (CP) are less physically active than typically developing (TD) peers, but less is known regarding physical activity (PA) in those with CP in low-to-middle income countries. The aim of this study was to determine daily step count and levels of PA in adolescents and adults with CP living in urban South Africa, compared to TD peers, and to determine associations with sex, Gross Motor Function Classification System (GMFCS) level, body mass index and socio-economic status.Materials and Methods: This case–control study included 26 adolescents and 22 adults with CP (GMFCS Level I-V) and matched TD peers (25 and 30, respectively). Participants wore an ActiGraph GT3X for 7 consecutive days to determine step count and time (minutes per hour) spent in PA levels, including sedentary (SED), low physical activity (LPA) and moderate to vigorous physical activity (MVPA).Results: The daily step count and PA levels for ambulant adolescents with CP (GMFCS level I-III) were similar to TD peers, while this was less for adolescents classified in GMFCS level IV-V. Daily step count, SED and MVPA were similar for adults classified in GMFCS level I-II compared to TD adults, while all parameters were lower for adults using assistive devices (GMFCS level III) and non-ambulant adults (GMFCS level IV-V) compared to TD peers. Daily step count and PA levels were inversely associated with GMFCS, while no other associations were found.Conclusion: People with CP who were more mobile dependent (higher GMFCS level) were less active. However, adolescents and adults with CP classified as GMFCS levels I-II living in urban South Africa recorded similar step count and PA levels as their TD peers. This was also the case for adolescents using assistive devices, though not for those in the adult group (GMFCS level III). Furthermore, it was apparent that even the ambulant individuals with CP and TD cohorts were relatively inactive. Intervention programs for CP and TD adolescents should be aimed at finding strategies to keep adolescents physically active well into adulthood, in order to promote physical health, social and emotional well-being and independence.


Author(s):  
Elisa Valenzuela ◽  
Renata Rosa ◽  
Carlos Monteiro ◽  
Leslie Keniston ◽  
Kênnea Ayupe ◽  
...  

Purpose: To evaluate the effects of a short-term intensive virtual reality intervention in adolescents with cerebral palsy (CP). Methods: Single-subject design, type A–B-follow-up, with four participants (P) with CP, 15–18 years, GMFCS level II. A two-week intervention phase was performed with twelve Nintendo® Wii games in six sessions (90 min) per week. Outcome variables were semi-static balance (Pressure Center Oscillation—PCO), gait speed (Ten Meter Walk Test at usual speed—TMWT-U; and fast speed—TMWT-F), mobility (Timed Up and Go test—TUG), endurance (sit-to-stand test 5 times—STS-5), and gross motor activity (Gross Motor Function Measure—GMFM). Results: Statistical improvements were observed in GMFM-D (P2–P3), TMWT-F (P2–P3–P4) and TMWT-U (P2), STS-5 (P3–P4), TUG (P3), and PCO (P2–P3), assessed by level, trend, latency, and visual inspection to analyze change. Conclusions: This study shows that a short-term intensive intervention using Nintendo® Wii-based games in adolescents, GMFCS level II, can be an effective therapy, leading to some recovery of functioning in these young people.


2021 ◽  
Vol 90 ◽  
pp. 250
Author(s):  
S. Smati ◽  
A. Pouliot-Laforte ◽  
M. Lemay ◽  
L. Ballaz
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