scholarly journals The Economic Burden and Determinant Factors of Parents/Caregivers of Children with Cerebral Palsy in Malaysia: A Mixed Methods Study

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.

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.


Author(s):  
Robert M. Kay ◽  
Kristan Pierz ◽  
James McCarthy ◽  
H. Kerr Graham ◽  
Henry Chambers ◽  
...  

Purpose The purpose of this study was for an international panel of experts to establish consensus indications for distal rectus femoris surgery in children with cerebral palsy (CP) using a modified Delphi method. Methods The panel used a five-level Likert scale to record agreement or disagreement with 33 statements regarding distal rectus femoris surgery. The panel responded to statements regarding general characteristics, clinical indications, computerized gait data, intraoperative techniques and outcome measures. Consensus was defined as at least 80% of responses being in the highest or lowest two of the five Likert ratings, and general agreement as 60% to 79% falling into the highest or lowest two ratings. There was no agreement if neither threshold was reached. Results Consensus or general agreement was reached for 17 of 33 statements (52%). There was general consensus that distal rectus femoris surgery is better for stiff knee gait than is proximal rectus femoris release. There was no consensus about whether the results of distal rectus femoris release were comparable to those following distal rectus femoris transfer. Gross Motor Function Classification System (GMFCS) level was an important factor for the panel, with the best outcomes expected in children functioning at GMFCS levels I and II. The panel also reached consensus that they do distal rectus femoris surgery less frequently than earlier in their careers, in large part reflecting the narrowing of indications for this surgery over the last decade. Conclusion This study can help paediatric orthopaedic surgeons optimize decision-making for, and outcomes of, distal rectus femoris surgery in children with CP. Level of evidence V


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

2006 ◽  
Vol 86 (8) ◽  
pp. 1107-1117 ◽  
Author(s):  
Olaf Verschuren ◽  
Tim Takken ◽  
Marjolijn Ketelaar ◽  
Jan Willem Gorter ◽  
Paul JM Helders

Abstract Background and Purpose. The purpose of this study was to examine the reliability and validity of data obtained with 2 newly developed shuttle run tests (SRT-I and SRT-II) to measure aerobic power in children with cerebral palsy (CP) who were classified at level I or II on the Gross Motor Function Classification System (GMFCS). The SRT-I was developed for children at GMFCS level I, and the SRT-II was developed for children at GMFCS level II. Subjects. Twenty-five children and adolescents with CP (10 female, 15 male; mean age=11.9 years, SD=2.9), classified at GMFCS level I (n=14) or level II (n=11), participated in the study. Methods. To assess test-retest reliability of data for the 10-m shuttle run tests, the subjects performed the same test within 2 weeks. To examine validity, the shuttle run tests were compared with a GMFCS level–based treadmill test designed to measure peak oxygen uptake. Results. Statistical analyses revealed test-retest reliability for exercise time (number of levels completed) (intraclass correlation coefficients of .97 for the SRT-I and .99 for the SRT-II) and reliability for peak heart rate attained during the final level (intraclass correlation coefficients of .87 for the SRT-I and .94 for the SRT-II). High correlations were found for the relationship between data for both shuttle run tests and data for the treadmill test (r=.96 for both). Discussion and Conclusion. The results suggest that both 10-m shuttle run tests yield reliable and valid data. Moreover, the shuttle run tests have advantages over a treadmill test for children with CP who are able to walk and run (GMFCS level I or II). [Verschuren O, Takken T, Ketelaar M, et al. Reliability and validity of data for 2 newly developed shuttle run tests in children with cerebral palsy. Phys Ther. 2006;86:1107–1117.]


2014 ◽  
Vol 21 (1) ◽  
pp. 40-46
Author(s):  
Geovana Sôffa Rézio ◽  
Cibelle Kayenne Martins Roberto Formiga

The aim of the study was to analyze the inclusion of children with cerebral palsy in elementary schools. The sample consisted of 31 children between 1 and 11 years old, with a mean of 5 years and 2 months, coming from 2 rehabilitation centers and their leaders and teachers. As for functionality, 71% are Gross Motor Function Classification System (GMFCS) level I, 51.6% are diplegic and 58.1% had cerebral palsy during the prenatal stage. Regarding economic classification, 54.8% of the families were in class C. A neurological evaluation form was applied. A gross motor evaluation using the GMFCS; a socioeconomic assessment using the Brazilian Criteria for Economic Classification and the School Function Assessment were done. The results revealed that these children perform their activities in all aspects of the school participation, although they require constant supervision, moderate assistance and minimal adaptation. These results may be useful to better adapt the school environment, for a better targeting of assistance provided and to plan clinical interventions with these children.


2018 ◽  
Vol 12 (6) ◽  
pp. 635-639 ◽  
Author(s):  
K. E. Bugler ◽  
M. S. Gaston ◽  
J. E. Robb

Purpose The purpose of this study is to report the number of children from a total population of children with cerebral palsy (CP) in Scotland who had a displaced or dislocated hip at first registration in a national surveillance programme. Methods Migration percentage (MP), laterality, Gross Motor Function Classification System (GMFCS) level, CP subtype, distribution of CP and age were analyzed in 1171 children. Relative risk was calculated with 95% confidence intervals. Hip displacement and dislocation were defined as a MP of 40 to 99 and > 100 respectively. Results Radiographs were available from the first assessment of 1171 children out of 1933 children registered on the system. In all, 2.5% of children had either one or both hips dislocated (29/1171) and dislocation only occurred in children of GMFCS levels IV and V. A total of 10% of children had a MP 40 to 99 in one or both hips (117/1171). An increasing GMFCS level was strongly associated with an abnormal MP. Hip dislocation was unusual in patients under the age of seven years. A MP of 40 to 99 was not seen in children with isolated dystonia. Displacement was more frequent in children with bilateral involvement and dislocation was only seen in spastic and mixed tone groups. Conclusion This data gives an overview of the number of CP children who have hip displacement/dislocation in Scotland and who will possibly require surgery. Level of Evidence I


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.


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