Assessment Quality of Life in Children with Cerebral Palsy, Ages 2–18 Years

Izzah, Alfira Nailatul; Irwanto, Irwanto; Andriati, Andriati; Gunawan, Prastiya Indra

doi:10.20473/jbe.v9i22021.166-174

Cited by 3 publications

(3 citation statements)

References 23 publications

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“…The tool that was used to assess children's QoL was the Pediatric Quality of Life Inventory (PedsQL)TM 4.0 Generic Core Scales, which was developed by Varni et al 12 This questionnaire was already considered valid and reliable for the evaluation of QoL of children in various populations using different languages such as Chinese, Thai, and also Indonesian. [13][14][15][16] The PedsQL 4.0 GC consists of a 23-item questionnaire and encompasses four scales: physical functioning (8 items), emotional functioning (5 items), social functioning (5 items), and academic functioning (5 items). Parents only fill out this questionnaire because of the incapability of children with CRS.…”

Section: Methodsmentioning

confidence: 99%

Increasing the Health-Related Quality of Life in Children with Congenital Rubella Syndrome: A Mixed-methods Study

Herini,

Triono,

Iskandar

et al. 2023

J Community Empowerment for Health

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Background: Rubella infection during the first trimester of pregnancy is a significant cause of fetal malformation syndrome, known as Congenital Rubella Syndrome (CRS). The most prevalent abnormalities associated with CRS are hearing loss, vision impairment (primarily congenital cataracts), congenital heart disease, and global developmental delay affecting the children's quality of life (QoL). A Community Engagement Program was arranged collaboratively to increase the QoL of children with CRS and enhance parents' skills and knowledge to better care for their children with CRS.Methods: A mixed-method descriptive study was conducted to assess the QoL improvement in children with CRS and to determine parents' knowledge about CRS. Children's QoL data were obtained using the Pediatric Quality of Life Inventory (PedsQL)TM 4.0 Generic Core Scales and analyzed with paired T-tests. A survey and focus group discussion (FGD) were used to gather parents' knowledge about CRS.Results: We involved ten members willing to participate voluntarily in the PedsQL assessment and FGD. The result was an increase in patients' QoL in the Physical Function domain that was statistically significant: pre-test and post-test physical health summary (490 (±261) vs. 510 (±251); p=0.022), social (322 (±126) vs. 337 (±113); p=0.217), emotional (370 (±105) vs. 397 (±105); p=0.065), and school (342 (±94) vs. 355 (±97); p=0.586). From the survey and the FGD, the parents had diverse experiences and understanding of CRS-supporting examinations and treatments needed. Parents felt the children's growth and development, social and school functions were the common burdens. In order to help CRS prevention, the parents suggested a more comprehensive premarital program and antenatal care.Conclusions: The Community Engagement Program helps to increase the patients’ QoL in the Physical Function domain. Comprehensive multidiscipline management is needed to support children's growth, social function, and educational function. Periodic evaluations are required to monitor the QoL of children with CRS.

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Section: Methodsmentioning

confidence: 99%

Increasing the Health-Related Quality of Life in Children with Congenital Rubella Syndrome: A Mixed-methods Study

Herini,

Triono,

Iskandar

et al. 2023

J Community Empowerment for Health

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“…The original questionnaire has previously undergone validity, reliability, and sensitivity testing, yielding medium to large Pearson's product-moment correlation coefficient effects and an Cronbach's α value of .79 [13]. Furthermore, all question items were translated into Indonesian and validated according to the guidelines set by the Mapi Trust Organization [2]. Each question uses a Likert scale, ranging from 0 (never) to 4 (almost always).…”

Section: ) Pediatric Hrqolmentioning

confidence: 99%

“…

Cerebral palsy (CP) is the leading cause of childhood disability, presenting a significant burden in low-and middle-income countries (LMICs) [1]. It is the most prevalent motor disability in children, often accompanied by issues related to sensation, perception, cognition, communication, and behavior, as well as epilepsy and secondary musculoskeletal problems [2]. Recent epidemiological data estimate Purpose: Children with cerebral palsy (CP) and their parents experience various problems that can affect their quality of life.

…”

mentioning

confidence: 99%

Factors affecting the health-related quality of life of children with cerebral palsy in Indonesia: a cross-sectional study

Lestari,

Sitaresmi,

Sutomo

et al. 2024

Child Health Nurs Res

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Purpose: Children with cerebral palsy (CP) and their parents experience various problems that can affect their quality of life. This study examined factors affecting the quality of life of children with CP.Methods: A cross-sectional study was conducted in Yogyakarta, Indonesia, from January to August 2019. The participants were consecutively recruited children with CP aged 2 to 18 years and their parents. Ninety-eight children with CP and their parents, specifically their mothers, were recruited. Children’s health-related quality of life (HRQoL) was measured using the Pediatrics Quality of Life Cerebral Palsy. Parental HRQoL and stress were measured using the WHOQOL-BREF and Parenting Stress Index (PSI).Results: Functional level V was the most common category for both Gross Motor Function Classification System (GMFCS) and Bimanual Fine Motor Function (BFMF) (35% and 28%, respectively). Children’s mean HRQoL was medium (49.81±20.35). The mean total PSI score was high (94.93±17.02), and 64% of parents experienced severe stress. Bivariate analysis showed that GMFCS, BFMF, number of comorbidities, presence of pain, and parental stress were significantly correlated with the total score for children’s HRQoL (p<.05). Multiple linear regression analysis (p<.05) demonstrated that more severe GMFCS and parental stress were associated with lower mean HRQoL scores in children.Conclusion: Factors including the level of GMFCS and parental stress affected the HRQoL of children with CP. Parental stress management should be included in the comprehensive management of these children.

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Quality of life in Children with Cerebral Palsy

Hanif,

Zameer,

Waheed

et al. 2023

PJHS

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Cerebral palsy refers to a non-progressive brain disorder that affects the development of brain in developing infant and reduces the quality of life. Quality of life (QOL) is assessed using the CPQOL tool. Objectives: To assess the quality of life of children with CP. Methods: A cross-sectional study was conducted at the National Institute of Rehabilitation Medicine, Islamabad during Oct-2022 to Mar-2023. The sample was raised using slovin’s formula and non-probability convenient sampling technique was used. Data were collected using standard CP-QOL tool. All types of CP diagnosed cases both gender, presence of a caregiver and an age range of 4 to 12 years were included. Patients with non-availability of a caregiver and presence of any other illness not associated with CP were excluded. Results: Out of 129 participants, 105 were included on the basis of inclusion and exclusion criteria. The mean ± SD of patients overall score came out to be 46.83 ±9.75. CPQOL score of males were 47.36±9.96 and of female was 46.19±9.56. CPQOL score of age 4-6years was 45.12±10.58, 7-9 years was 47.70±9.15 and 10-12 years was 49.21±8.54 while overall CPQOL score of children with diplegic CP was 48.38±9.11, hemiplegic CP was 48.66±7.74, quadriplegic CP was 37.92±11.16. Conclusions: study showed that among both genders, females had poor QoL than males. This study also concluded that quadriplegic children had poor QoL than any other types of cerebral palsy. The overall status of QoL of children having Cerebral Palsy was low.

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Assessment Quality of Life in Children with Cerebral Palsy, Ages 2–18 Years

Cited by 3 publications

References 23 publications

Increasing the Health-Related Quality of Life in Children with Congenital Rubella Syndrome: A Mixed-methods Study

Increasing the Health-Related Quality of Life in Children with Congenital Rubella Syndrome: A Mixed-methods Study

Factors affecting the health-related quality of life of children with cerebral palsy in Indonesia: a cross-sectional study

Quality of life in Children with Cerebral Palsy

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