Cerebral Palsy Quality Of Life Research Articles

Cost-Effectiveness of an Intensive Upper Limb Rehabilitation Therapy for Children With Unilateral Cerebral Palsy: An Economic Evaluation of a Randomized Controlled Trial.

Background: Unilateral cerebral palsy is a major cause of childhood disability and a substantial economic burden. Intensive group-based therapy, consisting of hybrid constraint-induced movement and bimanual therapies, has been shown to be effective in improving specific quality-of-life domains in children with this disability. Our objective in this study was to assess if this intervention was cost-effective compared with standard care. Methods: An open-label, parallel, randomized controlled trial with an embedded economic evaluation of the intervention was conducted. A total of 47 children were randomized to either the intervention group (n = 27) or the standard care (n = 20) group. The effectiveness of the intervention was assessed using the Cerebral Palsy Quality of Life (Child) questionnaire across several domains. Nonparametric bootstrapping was used to quantify uncertainty intervals (UIs) for incremental cost-effectiveness ratios. Results: The incremental cost-effectiveness ratios for the intervention were 107 to 1071 (95% UI: -4606) for Family Health and 6448 to 1000, only for the Pain and Impact of Disability domain was the intervention likely to have a probability of being cost-effective exceeding 0.75. Conclusions: Other than the Pain and Impact of Disability domain, there was insufficient evidence demonstrating the intervention to be cost-effective over a 13-week time horizon.

Cost-Effectiveness of an Intensive Upper Limb Rehabilitation Therapy for Children With Unilateral Cerebral Palsy: An Economic Evaluation of a Randomized Controlled Trial

Background: Unilateral cerebral palsy is a major cause of childhood disability and a substantial economic burden. Intensive group-based therapy, consisting of hybrid constraint-induced movement and bimanual therapies, has been shown to be effective in improving specific quality-of-life domains in children with this disability. Our objective in this study was to assess if this intervention was cost-effective compared with standard care. Methods: An open-label, parallel, randomized controlled trial with an embedded economic evaluation of the intervention was conducted. A total of 47 children were randomized to either the intervention group (n = 27) or the standard care (n = 20) group. The effectiveness of the intervention was assessed using the Cerebral Palsy Quality of Life (Child) questionnaire across several domains. Nonparametric bootstrapping was used to quantify uncertainty intervals (UIs) for incremental cost-effectiveness ratios. Results: The incremental cost-effectiveness ratios for the intervention were $273 (95% UI: $107 to $945) for Pain and Impact of Disability, $1071 (95% UI: -$5718 to $4606) for Family Health and $1732 (95% UI: -$6448 to $8775) for Access to Services. For the 4 remaining domains, the intervention was dominated by standard care. At a willingness-to-pay threshold of $1000, only for the Pain and Impact of Disability domain was the intervention likely to have a probability of being cost-effective exceeding 0.75. Conclusions: Other than the Pain and Impact of Disability domain, there was insufficient evidence demonstrating the intervention to be cost-effective over a 13-week time horizon.

TRANSLATION AND CROSS-CULTURAL ADAPTATION OF THE CEREBRAL PALSY QUALITY OF LIFE-CHILD PRIMARY CAREGIVER (CPQOL-CPC) TO FILIPINO

Introduction: Cerebral palsy (CP) is a prevalent cause of childhood disability. Its impact is significantly higher in low to moderate income countries like the Philippines, with a disease burden 5 to 10 times greater. The Cerebral Palsy Quality of Life for Children (CP QOL-Child) - Primary Caregiver Questionnaire is a self-report measure which assesses quality of life (QOL) of children with CP. It has excellent psychometric properties and remarkable representation of the International Classification of Functioning, Disability and Health. The validity and reliability of the English tool may be affected when used to a different speaking population. The objectives of this research were to: 1) translate the CP QOL-Child to Filipino, and 2) determine conceptual equivalence, understandability, and acceptability of the translated version. Methods: Five steps of the translation process were conducted; forward translation, reconciliation of items, backward translation (BT), review of forward and BT by an expert panel, and pretesting with cognitive interviews. Ten target participants, selected using maximum variation approach, participated in the pretesting. In the panel discussion, percentage of agreement on conceptual equivalence was determined and thematic analysis was conducted. For pre-testing, cognitive interviews were evaluated according to understandability of items and appropriateness of response. Results: The panel review determined 65 items with full agreement (100%), 13 items with moderate agreement (80%), and 39 items with low agreement (≤60%) on conceptual equivalence between the BT and the original. The considerations for revisions were 1) grammar, 2) colloquialism and, 3) culture. Difficulties in understanding the translation during pre-testing were attributed to unfamiliarity of terms and concepts, and formatting. Participants’ feedback were incorporated into the final Filipino version. Discussion: The Filipino translation of the CPQOL-Child appears to be understandable and culturally appropriate based on expert panel and pre-testing participants. This version can be used to establish the tool’s psychometric properties.

Effects of Hippotherapy on Health-Related Quality of Life in Caregivers of Children with Cerebral Palsy: A Pilot Quasi-Experimental Study in Japan.

Despite accumulating data regarding the beneficial effects of hippotherapy on gait and balance skills in children with cerebral palsy (CP), its effects on caregivers' quality of life (QOL) are limited, presumably due to a lack of reliable and valid measurement tools. This study aims to evaluate the impact of hippotherapy on the health-related QOL of primary caregivers using the Japanese version of the Cerebral Palsy Quality of Life for Children (CP QOL) questionnaire. A quasi-experimental design embedded within our existing cohort was utilized. A total of 29 children with CP (range 4-12 years) and their caregivers participated in either a weekly hippotherapy or recreation (usual care) program for 1 year. In addition to gait-related measurements (Gross Motor Function Measure [GMFM]-E) of children, CP QOL-evidenced determinants of the caregivers' health-related QOL and well-being were compared before and after the intervention. In addition to improvements in children's GMFM-E scores, hippotherapy improved CP QOL domains related to participation and physical health, children's emotional well-being, and parents' overall health (p < 0.05). Linear regression analysis showed a positive relationship between the children's GMFM-E scores and their caregivers' health domains in participants who received hippotherapy (r2 = 0.404; p = 0.011). Hippotherapy has a beneficial effect on the physical and mental well-being and satisfaction of Japanese parents caring for children with CP.

Brain Stimulation and Constraint Induced Movement Therapy in Children With Unilateral Cerebral Palsy: A Randomized Controlled Trial

Background There is a crucial need to devise optimum rehabilitation programs for children with cerebral palsy (CP). Objective This study aimed to assess the feasibility, safety, and efficacy of combining 6-Hz primed, low-frequency, repetitive transcranial magnetic stimulation (rTMS) with modified constraint-induced movement therapy (mCIMT) in improving upper limb function in children with unilateral CP. Methods Children aged 5 to 18 years with unilateral CP were randomized (23 in each arm) to receive 10 sessions of mCIMT with real rTMS (intervention arm) or mCIMT with sham rTMS (control arm), on alternate weekdays over 4 weeks. The primary outcome was the difference in mean change in Quality of Upper Extremity Skills Test (QUEST) scores. Secondary outcomes were changes in QUEST domain scores, speed and strength measures, CP quality of life (CP-QOL) scale scores, and safety of rTMS. Results All 46 children completed the trial except one. At 4 weeks, the mean change in total QUEST scores was significantly higher in the intervention arm as compared to the control arm (11.66 ± 6.97 vs 6.56 ± 4.3, d = 5.1, 95% CI 1.7-8.5, P = .004). Change in “weight bearing” and “protective extension” domain score was significantly higher for children in the intervention arm. These improvements were sustained at 12 weeks (P = .028). CP-QOL scores improved at 12 weeks. No serious adverse events were seen. Conclusion A 6-Hz primed rTMS combined with mCIMT is safe, feasible, and superior to mCIMT alone in improving the upper limb function of children with unilateral CP. Trial Registration: ClinicalTrials.gov Identifier: NCT03792789.

IMPROVEMENT IN HURLER SYNDROME WITH AYURVEDIC MANAGEMENT: A CASE REPORT

Hurler syndrome is a rare lysosomal storage disorder occurring due to the deficiency of the lysosomal enzyme alpha L Iduronidase and has an autosomal recessive inheritance [1]. Ayurveda explains this condition as aavaranajanya vatavyadhi (obstructive pathology) [2]. This is the case of Hurler Syndrome of a female child of 13yrs with a relevant family history (her sister had the same syndrome). The patient had dysmorphic facies, pain and stiffness over multiple joints, dysmorphic facies, difficulty in walking, and mild speech impairment. She visited the outpatient department of our tertiary Ayurvedic health centre three times. She took OP and IP management along with dietary recommendations for about two months and ten days, and significant improvement was noted such as a reduction in contractures, ability to walk independently, self-feeding and the ability for normal schooling. The assessment was done with Cerebral Palsy Quality of Life (CPQOL). The values changed from 330 to 445 before and after treatment, respectively and gradings of spasticity as per the Modified Ashworth scale changed from 2+ to 1+ in both upper limbs and from 3+ to 2+ in both lower limbs.

Trunk Control Measurement Scale (TCMS): Psychometric Properties of Cross-Cultural Adaptation and Validation of the Spanish Version

The aim of this study was to develop a Spanish Version of the Trunk Measurement Scale (TCMS-S) to analyze its validity and reliability and determine the Standard Error of Measurement (SEM) and Minimal Detectable Change (MDC) in children with Cerebral Palsy (CP). Participants were assessed twice 7-15 days apart with the TCMS-S and once with the Gross Motor Function Measurement-88 (GMFM-88), Pediatric Disability Inventory-Computer Adaptive Test (PEDI-CAT), Cerebral Palsy Quality of Life (CPQoL), and Gross Motor Classification System (GMFCS). Internal consistency was evaluated using Cronbach's alpha, and the intraclass correlation (ICC) and kappa coefficients were used to investigate the agreement between the assessments. Finally, 96 participants with CP were included. The TCMS-S showed excellent internal consistency (Cronbach's alpha = 0.95 [0.93 to 0.96]); was highly correlated with the GMFM-88 (rho = 0.816) and the "mobility" subscale of the PEDI-CAT (rho = 0.760); showed a moderate correlation with the "feeling about functioning" CPQoL subscale (rho = 0.576); and differentiated between the GMFCS levels. Excellent test-retest agreement was found for the total and subscale scores (ICC ≥ 0.94 [0.89 to 0.97). For the total TCMS-S score, an SEM of 1.86 and an MDC of 5.15 were found. The TCMS-S is a valid and reliable tool for assessing trunk control in children with CP.

Prevalence, severity, and predictors of malnutrition in Indian children with cerebral palsy and their impact on health-related quality of life.

Although several studies have shown that undernutrition is frequent in children with cerebral palsy (CP), studies determining predictors of undernutrition and its impact on health-related quality of life (HRQoL) are scarce. This study aimed to assess the prevalence, severity, and predictors of malnutrition in children with CP and its impact on quality of life. This prospective study was performed between August 2019 and December 2021 in children with a clinical diagnosis of CP aged 2-18years. We also intended to determine the socio-demographic and clinical predictors of undernutrition in these children and its impact on HRQoL, measured by the cerebral palsy quality of life (CPQoL)-Primary Caregiver reported version. Out of 569 (5.4 ± 2.8years of age, 74% boys) children with CP, 71%, 44%, and 72% children were underweight, wasted, and stunted respectively, whereas 22%, 11%, and 21% were severely underweight, wasted and stunted respectively. Lower socioeconomic status, higher Gross Motor Function Classification System, and Manual Ability Classification System level were found to be significantly associated with the severity of stunting and underweight (p < 0.05), but not with wasting. CPQoL score in children with CP aged > 4years was lower in patients with severe wasting, stunting, and underweight, as compared to their rest of the counterparts when adjusted for socio-demographic and other clinical variables (p < 0.05). Conclusion: Chronic undernutrition is more common than severe acute malnutrition in children with CP. The severity of undernutrition is an important predictor of impaired HRQoL in children with CP. What is Known: • Several studies have shown that undernutrition is frequent in children with cerebral palsy; however, studies determining predictors of undernutrition and its impact on health-related quality of life are scarce. What is New: • Our study identifies that lower socioeconomic status, higher Gross Motor Function Classification System, and Manual Ability Classification System level are significantly associated with the severity of stunting and being underweight. • Chronic undernutrition is more common than severe acute malnutrition in children with cerebral palsy. Its severity is an important predictor of impaired health-related quality of life in children with cerebral palsy.

Translation and validation of Cerebral Palsy Quality of Life Questionnaire-Teen in Hong Kong Chinese population [CP QoL-Teen (HK)

Cerebral palsy (CP) is an early onset, non-progressive, neuromotor disorder. Adolescence is the transition from childhood to adulthood when changes in physical and emotional aspects and self-perception occur further imposing an impact to quality of life (QoL) in individuals with CP. Cerebral Palsy Quality of Life (CP QoL) Teen is a questionnaire examining different domains of QoL for adolescents with CP. This study is aimed at translating and validating self-report and proxy-report CP QoL-Teen (HK). Prior approval of translation has been obtained. Forward and backward translations were performed following standardized translation procedures. Participants and their caregivers were asked to complete self-report and proxy-report CP QoL-Teen (HK), and Child Health Questionnaire (CHQ). Internal consistency and test–retest reliability were assessed by Cronbach’s alpha and intraclass correlation coefficient (ICC), respectively. Concurrent validity was evaluated by Spearman’s rank correlation between subscales of CP QoL-Teen (HK) and CHQ as well as expanded and revised version of Gross Motor Function Classification System (GMFCS-E&R). Ninety-six participants completed the study. Of these, twenty participants completed CP QoL-Teen (HK) twice. Cronbach’s α of CP QoL-Teen (HK) ranged from 0.84 to 0.95 suggesting excellent internal consistency. Moderate to excellent test–retest reliability were demonstrated in all subscales of CP QoL-Teen (HK) (self-report: ICC = 0.46–0.8; proxy-report: ICC = 0.40–0.72, p < 0.05). Weak to moderate association between subscales of CP QoL-Teen (HK) and CHQ (self-report: rs = 0.24–0.61; proxy-report: rs = − 0.41–0.60) was reported.Conclusion: This study showed that CP QoL-Teen (HK) has good psychometric properties. It is a valid and reliable tool to assess quality of life of adolescents with CP.What is Known:• Cerebral Palsy Quality of life-Teen (CP QoL-Teen) is a validated tool with strong psychometric properties and clinical utility in gauging the QoL in adolescents with CP during their transition from childhood to adulthood when changes in physical and emotional aspects and self-perception occur. Yet, a locally validated tool is lacking in measuring the QoL for adolescents with CP in Hong Kong.What is New:• The Chinese translated version CP QoL-Teen (HK) is a valid and reliable tool to assess quality of life of adolescents with CP tailoring to the local cultural and social background with good psychometric properties being demonstrated.

Factors Related to Quality of Life in Children With Cerebral Palsy

BackgroundWe investigated the influence of relevant demographic, clinical, neuropsychological, and psychosocial variables on the proxy-reported quality of life (QOL) of children with cerebral palsy (CP). MethodsThe proxy-reported Cerebral Palsy Quality of Life-Child questionnaire (CP QOL-Child) was completed by 58 children with CP (mean age 10.22 years, SD 1.67). Relationships between QOL scores and demographic, clinical, neuropsychological, and psychosocial variables were assessed. CP QOL scores and other variables that correlated significantly were introduced into a multiple linear regression model. ResultsExecutive functioning and motor functional status were explanatory variables for the CP QOL total score. Executive functions explained three specific QOL domains: Social Wellbeing and Acceptance, Feelings about Functioning, and Emotional Wellbeing and Self-esteem. Parental stress also explained Social Wellbeing and Acceptance. Motor functional status and visual perception were explanatory variables for the Access to Services domain. Finally, autism spectrum disorder (ASD) traits were an explanatory variable for the Participation and Physical Health domain. ConclusionExecutive functioning and motor functional status importantly influence QOL of children with CP. Visual perception, ASD symptoms, and parental stress variables are related with specific QOL domains. These findings demonstrate that interventions targeting cognitive functions in children with CP may positively influence QOL.

Exploring the quality of life of adolescents with Cerebral Palsy participating in conductive education around the Pannonian Basin.

Quality of life (QoL) is a concept that includes physical, psychological, social, spiritual, and other domains of functioning. Good QoL is a fundamental goal of treatment for Cerebral Palsy (CP), therefore it is an outstanding goal of Conductive Education (CE) as well. CE is a Hungarian method that combines special education and rehabilitation for people living with CP. We aimed to compare the opinions and views about the life of teenagers from the perspective of adolescents and their caregivers from different socio-cultural backgrounds. It was a descriptive, cross-sectional study. We used the Cerebral Palsy Quality of Life for the adolescent questionnaire (CP QoL -Teen) to measure QoL, which was translated into Hungarian and validated by Semmelweis University in 2017. Our study included 20 young adolescents (mean age 16) with CP and their caregivers living in Hungary (n1 = 40) and 20 Hungarian-speaking families (n2 = 40) from surrounding countries: Slovakia, Romania, and Ukraine (mean age 14.5). All the families are participating in CE. There was no significant divergence in the whole QoL score between the groups. Nonetheless, we found an outstanding difference in the Hungarian groups' 'Feelings about functioning' domain between teens and caregivers. A significant proportion of Hungarian teens-although living with greater pain-are less concerned about their illness (R = -0.754). 85% of responders study at segregated schools offering CE. The study shed new light on the importance of a personalized form of education and on the weight of the positive effects of segregated education. Personalized education can develop the patients' QoL.

Validity and Reliability of the Turkish Version of the KIDSCREEN-27 for Individuals With Cerebral Palsy.

Our aims in this study were to examine the construct/concurrent validity and internal/test-re-test reliabilities of both the self-report and parent-report questionnaires of a Turkish version of the KIDSCREEN-27 for adolescents with cerebral palsy (CP). We used a convenience sample of 135 children and adolescents with CP aged 8-18years (65 males, 70 females; M age = 12.39, SD = 3.57) and their parents/caregivers (123 mothers, seven fathers, and five grandmothers). We explored structural construct validity via confirmatory factor analysis (CFA). Concurrent validity was examined via Spearman's correlations between the KIDSCREEN-27 questionnaires and the self-report and primary caregiver report forms of the Cerebral Palsy Quality of Life for Children (CP QOL-Child) and adolescents (CP QOL-Teen). We explored test-retest and internal consistency reliabilities utilizing intraclass correlation coefficients (ICC) and Cronbach's alpha (α), respectively. CFA goodness-of fit indices verified that the predefined model of the KIDSCREEN-27 was a good fit for data from the CP population (X2/df<5, GFI >0.90, AGFI >0.90, RMSEA<0.80). Results showed the subdomains of both KIDSCREEN-27 forms to be significantly correlated with the matched subdomains of the CP QOL-Child and CP QOL-Teen questionnaires (ranges of r = 0.62-0.94). Overall, α and ICC coefficients for all subdomains of both KIDSCREEN-27 versions were acceptable (α and ICC >0.70). Both versions of the KIDSCREEN-27 have satisfactory psychometric properties for use in evaluating health-related quality of life (HRQOL) outcomes in children and adolescents with CP.

The safety and efficacy of umbilical cord blood mononuclear cells in individuals with spastic cerebral palsy: a randomized double-blind sham-controlled clinical trial

IntroductionThe current multi-center, randomized, double-blind study was conducted among children with cerebral palsy (CP) to assess the safety and efficacy of umbilical cord blood mononuclear cell (UCB-MNC). We performed the diffusion tensor imaging to assess the changes in the white matter structure.MethodsMales and females aged 4 to 14 years old with spastic CP were included. Eligible participants were allocated in 4:1 ratio to be in the experimental or control groups; respectively. Individuals who were assigned in UCB-MNC group were tested for human leukocyte antigen (HLA) and fully-matched individuals were treated with UCB-MNCs. A single dose (5 × 106 /kg) UCB-MNCs were administered via intrathecal route in experimental group. The changes in gross motor function measure (GMFM)-66 from baseline to one year after treatment were the primary endpoints. The mean changes in modified Ashworth scale (MAS), pediatric evaluation of disability inventory (PEDI), and CP quality of life (CP-QoL) were also evaluated and compared between groups. The mean changes in fractional anisotropy (FA) and mean diffusivity (MD) of corticospinal tract (CST) and posterior thalamic radiation (PTR) were the secondary endpoints. Adverse events were safety endpoint.ResultsThere were 72 included individuals (36 cases in each group). The mean GMFM-66 scores increased in experimental group; compared to baseline (+ 9.62; 95%CI: 6.75, 12.49) and control arm (β: 7.10; 95%CI: 2.08, 12.76; Cohen’s d: 0.62) and mean MAS reduced in individuals treated with UCB-MNCs compared to the baseline (-0.87; 95%CI: -1.2, -0.54) and control group (β: -0.58; 95%CI: -1.18, -0.11; Cohen’s d: 0.36). The mean PEDI scores and mean CP-QoL scores in two domains were higher in the experimental group compared to the control. The imaging data indicated that mean FA increased and MD decreased in participants of UCB-MNC group indicating improvements in white matter structure. Lower back pain, headaches, and irritability were the most common adverse events within 24 h of treatment that were related to lumbar puncture. No side effects were observed during follow-up.ConclusionsThis trial showed that intrathecal injection of UCB-MNCs were safe and effective in children with CP.Trial RegistrationThe study was registered with ClinicalTrials.gov (NCT03795974).

Exploring the Feasibility of a Virtual, Home-Based MusicGlove® Protocol for Children with Hemiparetic Cerebral Palsy

Background: The MusicGlove® as an occupational therapy intervention has been shown to improve upper limb function and satisfaction over conventional therapies for adults who have had a stroke, however, its effectiveness with children who have cerebral palsy has not been examined. The purpose of this research was to explore the feasibility of a virtual, home-based MusicGlove® protocol to increase upper extremity function, quality of life, and internal motivation in children with hemiparetic cerebral palsy. Method: Three participants, ages 6 to 16, diagnosed with hemiparetic cerebral palsy participated in 23 guided sessions using the home-based MusicGlove protocol over 5 weeks. Functional outcomes, quality of life, and intrinsic motivation were measured using the ABILHAND-Kids, Cerebral Palsy Quality of Life, and Intrinsic Motivation Inventory. Results: Two participants had an increase in percentages of notes hit (13%­­–20%) following the MusicGlove® intervention. All three participants rated the MusicGlove® as being of value/usefulness and two reported interest/enjoyment in using the MusicGlove®. All three participants and their caregivers reported an increase in quality of life and decrease in perceived difficulty of daily activities. Conclusion: The virtual, home-based MusicGlove® protocol may be a feasible intervention to improve hand function for children diagnosed with cerebral palsy.

The use of intrathecal baclofen for management of spasticity in hereditary spastic paraparesis: A case series.

Hereditary Spastic Paraparesis (HSP) causes lower limb spasticity, pain and limits ambulation resulting in a negative impact on an individual's quality of life. This case series evaluates the use of Intra-thecal Baclofen (ITB) on 5 ambulant children with HSP. Our results suggest ITB is associated with a reduction in spasticity and a trend towards improvement in patient-reported quality of life and achievement of personalised goals. This was evidenced with lower Modified Ashworth Scale (MAS) scores and increasing values using the Cerebral Palsy Quality of Life (CPQoL) tool and Goal Attainment Scale (GAS). ITB was not associated with any major immediate or longer-term adverse effects. Overall, our study supports the role of ITB, used in a goal-directed manner, in the management of children and young people with HSP where other standard treatment options have been unsuccessful.

Clinical and imaging outcomes after intrathecal injection of umbilical cord tissue mesenchymal stem cells in cerebral palsy: a randomized double-blind sham-controlled clinical trial

BackgroundThis study assessed the safety and efficacy of intrathecal injection of umbilical cord tissue mesenchymal stem cells (UCT-MSC) in individuals with cerebral palsy (CP). The diffusion tensor imaging (DTI) was performed to evaluate the alterations in white-matter integrity.MethodsParticipants (4–14 years old) with spastic CP were assigned in 1:1 ratio to receive either UCT-MSC or sham procedure. Single-dose (2 × 107) cells were administered in the experimental group. Small needle pricks to the lower back were performed in the sham-control arm. All individuals were sedated to prevent awareness. The primary endpoints were the mean changes in gross motor function measure (GMFM)-66 from baseline to 12 months after procedures. The mean changes in the modified Ashworth scale (MAS), pediatric evaluation of disability inventory (PEDI), and CP quality of life (CP-QoL) were also assessed. Secondary endpoints were the mean changes in fractional anisotropy (FA) and mean diffusivity (MD) of corticospinal tract (CST) and posterior thalamic radiation (PTR).ResultsThere were 36 participants in each group. The mean GMFM-66 scores after 12 months of intervention were significantly higher in the UCT-MSC group compared to baseline (10.65; 95%CI 5.39, 15.91) and control (β 8.07; 95%CI 1.62, 14.52; Cohen’s d 0.92). The increase was also seen in total PEDI scores (vs baseline 8.53; 95%CI 4.98, 12.08; vs control: β 6.87; 95%CI 1.52, 12.21; Cohen’s d 0.70). The mean change in MAS scores after 12 months of cell injection reduced compared to baseline (−1.0; 95%CI −1.31, −0.69) and control (β −0.72; 95%CI −1.18, −0.26; Cohen’s d 0.76). Regarding CP-QoL, mean changes in domains including friends and family, participation in activities, and communication were higher than the control group with a large effect size. The DTI analysis in the experimental group showed that mean FA increased (CST 0.032; 95%CI 0.02, 0.03. PTR 0.024; 95%CI 0.020, 0.028) and MD decreased (CST −0.035 × 10-3; 95%CI −0.04 × 10-3, −0.02 × 10-3. PTR −0.045 × 10-3; 95%CI −0.05 × 10-3, −0.03 × 10-3); compared to baseline. The mean changes were significantly higher than the control group.ConclusionsThe UCT-MSC transplantation was safe and may improve the clinical and imaging outcomes.Trial registrationThe study was registered with ClinicalTrials.gov (NCT03795974).

Feasibility and Concurrent Validity of Cerebral Palsy Quality of Life for Children (CP QOL-Child) in Thai Version

Background: The Cerebral Palsy Quality of Life for Children (CP QOL-Child) questionnaires are condition-specific QOL measures for children with CP focusing on perspectives of children with CP on their quality of life, not on their physical difficulties. The perspectives of well-being are core concepts of quality of life. The CP QOL-Child has already been translated in Thai and the reliability is excellent. The validity after the translation has not been conducted and is required. therefore, it is needed to examine the validity to ensure the clinical practicality. Objective: To examine feasibility and concurrent validity of the CP QOL-Child (Thai version). Materials and Methods: Eighty-five primary caregivers of 4- to 12-year-old children and 65 children between 9- and 12-years-old, who passed the inclusion criteria, completed three questionnaires including the CP QOL-Child (Thai version), the PedsQL 4.0 Generic Core Scales, and the PedsQL 3.0 CP module (Thai version). Results: For feasibility of the CP QOL-Child, no missing items were found in any items for the child self-report. For parent proxy report, missing items were scattered and from 1.2% to 7.1%. For concurrent validity, according to the total scores of both versions, the self-report and the parent proxy, the correlation coefficients between CP QOL-Child and PedsQL 4.0 Generic Core Scales were 0.23 to 0.25 meaning no or little correlations, at significance level of 0.05. The correlation coefficients between the CP QOL-Child and the PedsQL CP module were 0.38 to 0.49, meaning fair correlations, at significance level of 0.01. Conclusion: The feasibility of the CP QOL-Child (Thai version) was reportedly acceptable. The concurrent validity support that the CP QOL-Child may not measure the quality of life at the same constructs as the PedsQL. The CP QOL-Child asks the client’s perspectives of quality of life (QOL) while both PedsQL modules ask the client’s difficulties that might relate to QOL. Keywords: Health-related quality of life, CP QOL-Child, Cerebral palsy, Feasibility, Validity

Visit to the Disability Integrating Health Post and Its Effect on the Quality of Life of Children with Cerebral Palsy: A Multivariate Evidence from Sukoharjo, Central Java

Background: An assessment of the quality of life of children with cerebral palsy is important to be carried out, as part of the indicators of achiev­ing health service delivery goals. To faci­litate access to health services for children with dis­­abilities, the government of Sukoharjo Dis­trict esta­b­lished an integrated health post (pos­yandu) for children with disabilities called in­clu­sion cen­ters. This study aimed to deter­mine the quality of life of children with cerebral palsy who receive ser­­­vi­ces at the inclusion center. Subjects and Method: his was a cross sec­tional study conducted in 12 inclusion centers in Suko­harjo, Central Java. A sample of 100 child­­ren with cerebral palsy (CP) aged 4-18 years old was selected by fixed disease samp­ling. The depen­dent variable was the quality of life of CP child­ren. The independent variables were the level of gross motor function capa­bility, parental cop­ing, quality service, and freq­uency of pos­yandu visits. Gross motor func­t­ion capability was mea­sured by Gross Motor Funt­ion Classifi­cation Sys­tem (GMFCS). Qua­lity of life was measured by the Cerebral Palsy Qua­lity of Life (CP-QOL) ver­sion of the parent proxy. Data collection used ques­tion­­naire and analyzed by a multiple linear reg­ression run on Stata 13. Results: Better quality of life of children with cereb­ral palsy was influenced by lower GMFCS levels (b= -128.72; 95% CI= -220.34 to -37.10; p= 0.006), good parental coping (b= 18.87; 95% CI= 10.85 to 26.89; p<0.001), good service quality (b= 20.79; 95% CI= 9.99 to 31.59; p<0.001), and more frequent visits to posyandu (b= 214.86; 95% CI= 56.66 to 373.15; p= 0.008). Conclusion: Quality of life of children with cerebral palsy is influenced by lower GMFCS levels, good parental coping, good service qua­lity, and more frequent visits to posyandu. Keywords: quality of life, disability, cerebral palsy, integrating health post (posyandu) Correspondence: Retno Dwi Rohaniyati, Masters Program in Pub­­lic Health, Universitas Sebelas Maret, Jl. Ir. Su­­tami 36A, Surakarta, Central Java, Indo­ne­sia. Email: retnodr16@gmail.com. Mobile: 08­15­4626 8418. Journal of Maternal and Child Health (2020), 5(2): 193-199 https://doi.org/10.26911/thejmch.2020.05.02.09

Clinical response of Abhaya Ghrita and procedure based therapy on Gross Motor Functions in children with Cerebral Palsy : An Open Label, Randomized Clinical Trial

Introduction - Cerebral Palsy (CP) being the leading cause of disability in children is a symptom complex, whichv has worldwide incidence of 2.1/1000 live births, and for India it is 3/1000 live births. In Ayurveda, the cerebral palsy can be correlated with various conditions due to Vata predominance. There is no satisfactory criterion in managing this condition is developed till date. The present study is planned with Abhaya Ghrita and procedure based therapy to provide possible improvement in gross motor function of children with cerebral palsy and thereby improving their quality of life. Material and Methods - A Trial was conducted at a tertiary health care setting to evaluate the clinical efficacy of Ayurvedic Intervention (Abhaya Ghrita and procedure based therapy Udvartana, Sarvanga Abhyanga, Nadi Sweda and Matra Basti). Diagnosed children of cerebral palsy, aged 1-12 years of either gender were selected. The scale gross motor function manual (GMFM) and Cerebral Palsy quality of life (CP-QOL) were used for assessment. Results - Total 20 patients were registered in the present study. 70% patients were below 8 years of age with clear male predominance comprised of 85% of the total sample size. As per the birth history of the patients 15% were preterm, home delivery was present in 20%. 45% and 10% were Low birth weight (LBW) and Very Low birth weight (VLBW) after birth respectively. History of delayed cry was present in 80% cases. 45% required Hospitalization and 65% were subjected to Resuscitation and need of incubator just after birth was present in 25% patients. Discussion - Gross Motor Function scale has shown significant improvement in motor activities like lying and rolling, sitting and total score with pandlt;0.001, on crawling and kneeling and standing with pandlt;0.01 and on walking and running with pandlt;0.02. The CP-QOL has also shown significant results on health and family and friends component. Conclusion - Thus, it may be concluded that the Ayurveda approach is effective in improving the gross motor function and quality of life of children with cerebral palsy.

Effects of Intellectual Disability on Gross Motor Function and Health Related Quality of Life in Cerebral Palsy

Objective: Cerebral palsy (CP) is a common developmental disorder which causes intellectual and motor disability, and affects quality of life. The aim of this study was to reveal the effect of intellectual disability (ID) on motor function and quality of life in CP.Methods: Twenty-seven children with CP were divided into two groups as with or without ID. Motor function and health related quality of life was evaluated with Gross Motor Function Measurement–88 (GMFM-88) and Child Health Questionnaire-Parent Form 50 (CHQ-PF50) respectively.Results: All dimensions of GMFM-88 and most of the dimensions of CHQ-PF50 were lower in children with ID compared to those without ID (p&amp;lt;0.05).Conclusion: ID seems to have a disruptive effect on motor function and health related quality of life in CP. Adding approaches to improve the cognitive status to the CP rehabilitation program may be beneficial for motor function and quality of life.