scholarly journals Investigation on Quality of Life and Economic Burden of Children with Cerebral Palsy in Changzhou

2022 ◽  
Vol 2022 ◽  
pp. 1-9
Author(s):  
Chaorong Bian ◽  
Feng Peng ◽  
Haibin Guo ◽  
Kejin Chen
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
General Population ◽  
Economic Burden ◽  
Population Level ◽  
Disabled Persons ◽  
Average Score ◽  
Children With Cerebral Palsy ◽  
Socioeconomic Burden

Based on the data of children with cerebral palsy (CP) in Changzhou obtained by the Disabled Persons’ Federation, this study sampled some children with CP and investigated their survival status, treatment cost, and family burden so as to provide scientific decision-making basis and policy suggestions for coping with disease hazards and improving children’s quality of life. In this study, a simple random sampling method was used to conduct household surveys of the selected children with CP. The economic burden of CP is measured by direct and indirect methods, and the quality of life of patients of children with CP and their families is analyzed qualitatively and quantitatively by the EuroQol Five Dimensions (EQ-5D) Questionnaire. The average family economic burden of each case of CP in Changzhou was about 4,188,500 yuan, of which the direct medical burden was 205,800 yuan and the indirect economic burden was 3,982,700 yuan. The socioeconomic burden of CP in Changzhou is as high as about 2.244 billion yuan. From the EQ-5D measurement results of 55 children with CP, the average index score was 0.423, which was lower than the national general population level. The proportions of patients with CP who have problems in the five aspects of action, self-care, daily activities, pain/discomfort, and anxiety/depression are 72.73%, 81.82%, 81.82%, 83.64%, and 92.73%, respectively, which are significantly higher than those of the national general population. The average score of the Visual Analogue Scale (VAS) is 58.09, which is significantly lower than the national general population level. The only major factor affecting the quality of life of patients with CP and their families is the health status represented by the EQ-5D score. To liberate and develop the labor ability of patients and their direct caregivers through clinical treatment, rehabilitation, and special education is the most effective way to reduce the socioeconomic burden of CP. Relevant government departments should perform their duties, integrate social assistance resources, implement early intervention, and launch targeted support and assistance policy.

scholarly journals Emotional well-being and social support as important factors affecting the quality of life of parents of a child with cerebral palsy

2019 ◽  
Vol 18 ◽  
pp. e019002
Author(s):  
Katarína Molnárová Letovancová ◽  
Miriam Slaná ◽  
Michaela Hromková
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Cerebral Palsy ◽  
Well Being ◽  
Average Score ◽  
Family Quality Of Life ◽  
Life Questionnaire ◽  
Quality Of Life Scale ◽  
Children With Cerebral Palsy

The birth of a child with cerebral palsy is an enormous challenge for the parents which has a direct impact on their quality of life. Therefore, we believe it is important to pay attention to this topic. To that end, we conducted research on the quality of life of parents of children with cerebral palsy in 2018. To achieve our goal, we applied quantitative research strategy and used a valid research tool, i.e. a standardized quality of life questionnaire – Family Quality of Life Scale ("FQOL"). The average score reached by respondents was 94.0918 points which indicates a higher quality of life in respondents than expected. The evaluation of the average score for each dimension of the scale showed that respondents scored the lowest in the "Emotional Well-Being" dimension (13.2551 points) and "Social Support" (15.6429 points). The research further confirmed that there were statistically significant differences in the quality of life of respondents depending on their age (t = -2.341, p = 0.021), marital status (F = 3.476, p = 0.019) and the territorial region (χ2 = 15.39, p = 0.031). A statistically significant relationship between the quality of life of respondents and the age of the child with cerebral palsy (0.288 **, p = 0.004) was confirmed. Despite a relatively high score that indicated a higher quality of life in respondents, the research identified two areas in which parents of children with cerebral palsy had a lower quality of life, namely, their emotional well-being and social support.

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

A Cross-Sectional Study to Evaluate the Quality of Life of Caregivers for Children with Cerebral Palsy in Saudi Arabia, Jeddah

2021 ◽  
Author(s):  
Alanoud Akram Aman ◽  
Bashaer Baharoon ◽  
Haifa Jamal Idrees ◽  
Ahad Mohammedyusuf Taj ◽  
Bassmah Ali Alzahrani ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Saudi Arabia ◽  
Cerebral Palsy ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Children With Cerebral Palsy

scholarly journals The relationship between quality of life and functioning for children with cerebral palsy

2008 ◽  
Vol 50 (3) ◽  
pp. 199-203 ◽  
Author(s):  
A Shelly ◽  
E Davis ◽  
E Waters ◽  
A Mackinnon ◽  
D Reddihough ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Children With Cerebral Palsy ◽  
The Relationship

scholarly journals Measuring Effects on Pain and Quality of Life after Abobotulinum Toxin A Injections in Children with Cerebral Palsy

Toxins ◽  
2022 ◽  
Vol 14 (1) ◽  
pp. 43
Author(s):  
Christian Wong ◽  
Ian Westphall ◽  
Josephine Sandahl Michelsen
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Goal Attainment ◽  
Clinical Problem ◽  
Pain Reduction ◽  
Toxin A ◽  
Children With Cerebral Palsy ◽  
Goal Attainment Scale ◽  
Daily Pain

Sixty-seven percent of children with cerebral palsy (CCP) experience pain. Pain is closely interrelated to diminished quality of life. Despite this, pain is an overlooked and undertreated clinical problem. The objective of this study was to examine the analgesic effect of a single lower extremity intramuscular injection of Abobotulinum toxin A/Dysport in CCP. Twenty-five CCP with at least moderate pain (r-FLACC ≥ 4) during passive range of motion were included. Localized pain and pain in everyday living were measured by r-FLACC and the Paediatric Pain Profile (PPP), respectively. Functional improvements were evaluated by the goal attainment scale (SMART GAS). Quality of life was evaluated by either the CPCHILD or the CP-QOL. The subjects were evaluated at baseline before injection, then after 4, 12, and 28 weeks. Twenty-two subjects had a significant mean and maximum localized pain reduction (p < 0.001) at four weeks post-treatment in 96% (21/22). The reduction was maintained at 12 (19/19) and 28 weeks (12/15). Daily pain evaluated by the PPP was significantly reduced and functional SMART GAS goals were significantly achieved from 4 to 28 weeks. Quality of life improved significantly at four weeks (CPCHILD). Significant functional gains and localized and daily pain reduction were seen from 4 to 28 weeks.

scholarly journals The Dynamics of the Quality of Life of Mothers Bringing up Children with Cerebral Palsy

2019 ◽  
Vol 8 (4) ◽  
pp. 58-73
Author(s):  
A. Pevneva
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Structural Components ◽  
Core Element ◽  
Dominant Position ◽  
Structural Hierarchy ◽  
Children With Cerebral Palsy ◽  
Core Elements ◽  
Theoretical Issues

In studies of psychological problems of mothers bringing up children with cerebral palsy, the least explored is the problem of the quality of life. The knowledge of the structural and dynamic characteristics of the quality of life may give an answer to a number of methodological and theoretical issues on the change in the quality of life over time, its structural hierarchy and organization, structure sustainability/unsustainability and core elements. The aim of present study was to identify the dynamics of the quality of life of the mother of a child with cerebral palsy. 66 mothers raising a child with cerebral palsy have been surveyed; 48 respondents participated in a repeated measurement. The outcome of the study is the proof that the quality of life is not stable, it depends on the situation and is reproduced in the context of the situation. The dynamics of the quality of life of the mother of a child with cerebral palsy is characterized by difference in indicators of all structural components with the tendency to change positively, constancy of dominant position of physical functioning, structural transformation of the organization, its flexibility, as well as change of the structural core element.

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