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

2021 ◽  
Vol 104 (1) ◽  
pp. 136-140
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Concurrent Validity ◽  
Correlation Coefficients ◽  
Self Report ◽  
Significance Level ◽  
Pedsql 4.0 ◽  
Missing Items ◽  
Parent Proxy

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

scholarly journals Quality of life of adolescents with cerebral palsy: agreement between self-report and caregiver’s report*

2020 ◽  
Vol 28 ◽  
Author(s):  
Mariana Ceravolo Ferreira ◽  
Nathália Ribeiro Garcia ◽  
Cejane Oliveira Martins Prudente ◽  
Maysa Ferreira Martins Ribeiro
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Physical Health ◽  
Cross Sectional Study ◽  
The Self ◽  
Self Report ◽  
Cross Sectional ◽  
School Activities ◽  
Pedsql 4.0

Objective: to assess the quality of life (QOL) of adolescents with cerebral palsy (CP) by self-report and by the caregiver’s report, and to analyze the agreement between these reports. Method: cross-sectional study conducted with 101 adolescents with CP and 101 caregivers. Both answered the Pediatric Quality of Life Inventory (PedsQL), module 4.0 - Generic (PedsQL 4.0) and module 3.0 - PC (PedsQL 3.0). Agreement between reports was analyzed using the Mann-Whitney test and the intra-class correlation coefficient (ICC) (p<0.05). Results: the lowest scores were in physical health, school activities and fatigue in the self-report. The lowest scores were in physical health and daily activities, in the caregivers’ report. Perceptions among adolescents and caregivers differed in physical health, movement and equilibrium, daily and school activities, with a lower score for caregivers in all of them. The agreement between the self-report and the caregivers’ report was poor (ICC<0.44) and in both instruments, the caregivers’ report was less optimistic. Conclusion: physical health is the most impaired domain of the QOL of adolescents with CP, both in the self-report and in the caregivers’ report. However, there is poor agreement between these reports, emphasizing that the use of the caregivers’ report should be cautious.

The Vietnamese Version of the Health-related Quality of Life Measure for Children with Epilepsy (CHEQOL-25): Reliability

MedPharmRes ◽  
2017 ◽  
Vol 1 (1) ◽  
pp. 9-14
Author(s):  
Tri Doan ◽  
Tuan Tran ◽  
Han Nguyen ◽  
◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Good Practice ◽  
The Self ◽  
Self Report ◽  
Health Related Quality ◽  
Life Measure ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

Purpose: This study aimed to translate and culturally adapt the self-report and parent-proxy Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Vietnamese and to evaluate their reliability. Methods: Both English versions of the self-report and parent-proxy CHEQOL-25 were translated and culturally adapted into Vietnamese by using the Principles of Good Practice for the Translation and Cultural Adaptation Process. The Vietnamese versions were scored by 77 epileptic patients, who aged 8–15 years, and their parents/caregivers at neurology outpatient clinic of Children Hospital No. 2 – Ho Chi Minh City. Reliability of the questionnaires was determined by using Cronbach’s coefficient α and intra-class correlation coefficient (ICC). Results: Both Vietnamese versions of the self-report and parent-proxy CHEQOL-25 were shown to be consistent with the English ones, easy to understand for Vietnamese children and parents. Thus, no further modification was required. Cronbach’s α coefficient for each subscale of the Vietnamese version of the self-report and parent-proxy CHEQOL-25 was 0.65 to 0.86 and 0.83 to 0.86, respectively. The ICC for each subscale of the self-report and parent-proxy CHEQOL-25 was in the range of 0.61 to 0.86 and 0.77 to 0.98, respectively. Conclusion: The Vietnamese version of the self-report and parent-proxy CHEQOL-25 were the first questionnaires about quality of life of epileptic children in Vietnam. This Vietnamese version was shown to be reliable to assess the quality of life of children with epilepsy aged 8–15 years.

scholarly journals The quality of life in Chinese juvenile idiopathic arthritis patients: psychometric properties of the pediatric quality of life inventor generic core scales and rheumatology module

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Hua-hong Wu ◽  
Feng-qi Wu ◽  
Yang Li ◽  
Jian-ming Lai ◽  
Gai-xiu Su ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Juvenile Idiopathic Arthritis ◽  
Reliability And Validity ◽  
Correlation Coefficients ◽  
Active Period ◽  
Generic Core Scale ◽  
Remission Period ◽  
Pedsql 4.0 ◽  
The Mean

Abstract Background Juvenile idiopathic arthritis (JIA) may seriously affects patients’ quality of life (QoL), but it was rarely focused and studied in China, so we explore JIA children’s QoL using Chinese version of the PedsQL4.0 Generic Core and PedsQL3.0 Rheumatology Module scale, and analyzed the psychometric properties of these two Scales among Chinese JIA children. Methods We recruited 180 JIA patients from Children's Hospital Affiliated to Capital Institute of Pediatrics and Hebei Yanda Hospital from July 2018 to August 2019. The questionnaires include information related on JIA, PedsQL4.0 generic core and PedsQL3.0 Rheumatology Module scales. According to the disease type, onset age of and course of JIA, we divided them into different groups, then compared the QoL status among different groups. Moreover, we analyzed the reliability and validity of these two scales in these 180 JIA children. Results The mean score of PedsQL4.0 generic core scale on these 180 patients was 82.85 ± 14.82, for these in active period was 72.05 ± 15.29, in remission period was 89.77 ± 9.23; the QoL score of systemic, polyarticular and oligoarticular JIA patients were 77.05 ± 19.11, 84.33 ± 12.46 and 87.12 ± 10.23. The mean score of PedsQL3.0 Rheumatology Module scale on 180 patients was 91.22 ± 9.45, for these in active period was 84.70 ± 11.37, in remission period was 95.43 ± 4.48; the QoL score of systemic, polyarticular and oligoarticular JIA patients were 89.41 ± 11.54, 89.38 ± 10.08 and 93.71 ± 6.92. In the PedsQL 4.0 Generic Core scale, the α coefficients of total scale and almost every dimension are all greater than 0.8 except for the school activity dimension of 0.589; the correlation coefficients of 22 items’ scores (total 23 items) with the scores of dimensions they belong to are greater than 0.5 (maximum value is 0.864), and the other one is 0.406. In PedsQL3.0 Rheumatology Module scale, except for the treatment and worry dimensions of 0.652 and 0.635, the α coefficients of other dimensions and the total scale are all greater than 0.7; the correlation coefficients of all items’ score were greater than 0.5 (the maximum is 0.933, the minimum is 0.515). Conclusions The QoL of Chinese JIA children is worse than their healthy peers, these in active period and diagnosed as systemic type were undergoing worst quality of life. The reliability and validity of PedsQL 4.0 Generic Core and PedsQL3.0 Rheumatology Module scale in Chinese JIA children are satisfactory, and can be used in clinical and scientific researches.

scholarly journals Quality of life in Hungarian patients with cystic fibrosis

2013 ◽  
Vol 154 (20) ◽  
pp. 784-791 ◽  
Author(s):  
Réka Bodnár ◽  
Klára Holics ◽  
Rita Ujhelyi ◽  
László Kádár ◽  
Lajos Kovács ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Self Report ◽  
Clinical Severity ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Multisystemic Disease ◽  
Cystic Fibrosis Questionnaire ◽  
Parent Proxy

Introduction: Cystic fibrosis is a progressive multisystemic disease which affects the quality of life of patients. Aim: The aim of the study was to evaluate quality of life in Hungarian patients with cystic fibrosis. Methods: Validated Hungarian translation of The Cystic Fibrosis Questionnaire – Revised was used to measure quality of life. Clinical severity was determined on the basis of Shwachman–Kulczycki score. Lung function was measured using spirometry. Results: 59 patients were included from five centres in Hungary. The relationships between 8–13 year-old children self-report and parent proxy report was 0.77 (p<0.001) in physical functioning, 0.07 (p<0.001) in emotional functioning, 0.51 (p<0.001) in eating, 0.21 (p<0.001) in treatment burden, 0.54 (p<0.001) in body image, 0.49 (p<0.001) in respiratory symptoms and 0.40 (p<0.001) in digestive symptoms domains. Conclusions: In contrast to physical domains weak correlations were observed between answers obtained from children and their parents in psychosocial domains. The perception of both patients and their parents should be assessed when measuring quality of life in paediatric patients with cystic fibrosis. Orv. Hetil., 2013, 154, 784–791.

scholarly journals P.072 Agreement between children and their parents’ ratings of the health-related quality of life of children with Duchenne Muscular Dystrophy

2018 ◽  
Vol 45 (s2) ◽  
pp. S35-S35
Author(s):  
S Brar ◽  
C Campbell ◽  
E McColl ◽  
W Martens ◽  
M McDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy ◽  
Level Of Agreement

Background: When measuring young Duchenne Muscular Dystrophy (DMD) patients’ health-related quality of life (HRQoL), parent-proxy reports are heavily relied on. Therefore, it is imperative that the relationship between parent-proxy and child self-report HRQoL is understood. This study examined the level of agreement between children and their parent-proxy rating of the child’s HRQoL. Methods: We used FOR-DMD clinical trial baseline data. HRQoL, measured using the PedsQL inventory, was reported by 178 parent and child (ages 4 to 7 years) dyads. Intracorrelation coefficients (ICC) measured absolute agreement while paired t-tests determined differences in the average HRQoL ratings between groups. Results: The level of agreement between child and parent-proxy ratings of HRQoL was poor for the generic PedsQL scale (ICC: 0.29) and its subscales; and, similarly low for the neuromuscular disease module (ICC:0.16). On average, parents rated their child’s HRQoL as poorer than the children rated themselves in all scales except for psychosocial and school functioning. Conclusions: Child and parent-proxy HRQoL ratings are discordant in this study sample, as occurs in other chronic pediatric diseases. This should be taken into account when interpreting clinical and research HRQoL findings in this population. Future studies should examine reasons for parents’ perception of poorer HRQoL than that reported by their children.

scholarly journals The Effect of Insight Questions Inventory and Visual Support Strategies on Carer-Reported Quality of Life for Children With Cerebral Palsy and Perceptual Visual Dysfunction in Nigeria: A Randomized Controlled Trial

2021 ◽  
Vol 15 ◽  
Author(s):  
Roseline E. Duke ◽  
Torty Chimaeze ◽  
Min J. Kim ◽  
Soter Ameh ◽  
Kathryn Burton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Standard Therapy ◽  
Improve Quality ◽  
Visual Dysfunction ◽  
Support Strategies ◽  
Children With Cerebral Palsy ◽  
Visual Support ◽  
Pedsql 4.0

Structured clinical history question inventories have previously been used to try and elicit symptoms of perceptual visual dysfunction (PVD) in children with cerebral palsy (CP) in different settings. Earlier studies have suggested that PVD may affect quality of life and specific habilitational strategies, linked to inventory responses, may improve quality of life. Through an RCT, based on a community based sample of children with CP in Cross River State, Nigeria, we aimed to determine if a structured history inventory such as the Insight question inventory (IQI) and associated tailored visual support strategies (IQI VSS) for the management of those children who have PVD, can improve quality of life and is superior to standard therapy. Children with CP were recruited by the key informant method and confirmed by clinical examination. The parent reported IQI was used to identify children with PVD. Primary outcome measures were both Pediatric Quality of Life 4.0 Generic (PedsQL 4.0 Generic) and Pediatric Quality of Life 3.0 Cerebral Palsy (PedsQL 3.0 CP) scale scores. Children were enrolled with a parallel arm allocation to either IQI and IQI VSS or to standard therapy for CP. Children were followed up for 6 weeks with weekly phone call session and the questionnaires repeated at the end of the 6 weeks’ period. Results show that the children in the treatment group (n = 191) showed no significantly different change between baseline and follow up in quality of life (PedsQL 4.0 Generic p = 0.943: and PedsQL-CP 3.0 p = 0.287), compared to the control group. There was suggestion of a better improvement (p = 0.035) in the PedsQL 3.0 CP subscale of speech and communication for the intervention group. The use of IQI VSS for the treatment of PVD in children with CP in this population does not show any superiority over current standard CP management in terms of overall quality of life. However, there was some evidence of improvement in quality of life in the area of speech and communication. Further research and refinement of these management method is required.Clinical Trial Registration:www.ClinicalTrials.gov, identifier [PACTR20161200188] 6396.

scholarly journals Quality of life, depressive and minor psychiatrics symptoms in nursing students

2020 ◽  
Vol 73 (suppl 1) ◽  
Author(s):  
Jéssica Morgana Gediel Pinheiro ◽  
Andreia Barcellos Teixeira Macedo ◽  
Liliana Antoniolli ◽  
Thayane Martins Dornelles ◽  
Juliana Petri Tavares ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Depressive Symptoms ◽  
Nursing Students ◽  
Psychiatric Symptoms ◽  
Cross Sectional Study ◽  
Self Report ◽  
Cross Sectional ◽  
Significance Level ◽  
Assess Quality

ABSTRACT Objective: To assess quality of life, prevalence of depressive and minor psychiatric symptoms in Nursing students. Methods: Cross-sectional study, conducted from March to April 2018, at a federal university. Sample composed of 242 Nursing students, from the 1st to the 8th semester. Data was collected using the quality of life instruments, Beck Depression Inventory and Self-Report Questionnaire. A significance level of 0.05 was considered. Results: The mean age was 22.9 ± 5.1 years. It was found that 25% of the students had severe depressive symptoms and 54% of the students had minor psychiatric disorders, with a higher prevalence in the first semesters. An inverse relationship was observed between the frequency of depressive symptoms and quality of life scores (p = 0.05). Conclusion: Nursing students showed a high prevalence of depressive symptoms, indicating the importance of implementing actions to promote and prevent mental health.

scholarly journals Children with Cerebral Palsy and their Quality Of Life in Nepal

2018 ◽  
Vol 37 (2) ◽  
pp. 122-128
Author(s):  
Niti Shrestha ◽  
Sabitra Paudel ◽  
Ritesh Thapa
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Classification System ◽  
Cross Sectional Study ◽  
Self Report ◽  
Emotional Wellbeing ◽  
Related Factors ◽  
Cross Sectional ◽  
Children With Cerebral Palsy

Introduction: Cerebral Palsy (CP) may affect individual’s everyday life and it may have significant impact on quality of life (QOL). The objective of this study was to assess the quality of life of children with Cerebral Palsy in Nepal.Material and Methods: This is a descriptive cross sectional study that involved 42 children between 4 and 12 years of age. The Socio-demographic variables were obtained from interviews and CP related factors were obtained from medical reports. Validated CP-QOL child self-report and parent proxy version of questionnaire was used for data collection. Severity was assessed using Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), Communication function Classification System (CFCS) and ICD-10 Classification System. Data were summarized using descriptive statistics. Kruskal Wallis and Man Whitney was used to find out association between Cerebral Palsy related factors and Quality of Life.Results: 57.1% (n=24) were between 8 and12 years of age and 42.9% (n=18) were between 4 and 8 years of age. Overall QOL was reported to be fairly good. Both the child and Caregiver gave highest score on “Social wellbeing and acceptance” and “Emotional wellbeing and self-esteem domain” and Lowest Point in “Pain and Impact of disability”. This implies that Psychosocial Quality of Life is good in children with CP. Quality of Life as reported by child was better than Quality of Life reported by Caregiver.Conclusion: Overall QOL is fairly good in children with CP. However, Pain and impact of disability impairs QOL.

scholarly journals Agreement Between Proxy-Rated and Self-Reported Quality of Life for Persons With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 262-262
Author(s):  
Mariko Sakka ◽  
Ayumi Igarashi ◽  
Chie Fukui ◽  
Maiko Noguchi-Watanabe ◽  
Asa Inagaki ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intraclass Correlation ◽  
Correlation Coefficients ◽  
The Self ◽  
Self Report ◽  
Intraclass Correlation Coefficients ◽  
Proxy Rating ◽  
Self Reports ◽  
Two Measures

Abstract While quality of life (QOL) is an important endpoint of homecare for persons with dementia (PWD), PWDs often have difficulty in articulating their QOL by themselves. Instead proxy-rating is often used. However, evidence is still scarce regarding to what extent proxy-ratings reflect actual QOL of PWDs. We examined the association between self-report QOL by PWDs and proxy-rated QOL. We conducted a questionnaire survey to PWDs who were 75 years and older, their family, and homecare nurse in charge of the PWD. Two measures were used: 1) a newly developed, 4-item self-report for QOL of PWDs, and 2) a standardized, 6-item proxy-rating dementia QOL scale. In the self-report, the PWD were asked about their daily mood or satisfaction in life in brief, easy-to-understand sentences. The self-reports and proxy-ratings were compared using intraclass correlation coefficients (ICC). Data from 382 PWDs, 248 family caregivers and 124 nurses were used. The mean age of PWD was 85.9 years and 60.5% were female. The proxy-rating by nurses were more strongly associated with self-reports, compared to the association between family proxy rating and self-reports (r = 0.351, p &lt; .001; r = 0.236, p &lt; .001, respectively). Proxy ratings by spouses and biological children were significantly associated with self-report (r = 0.257, p =.004; r =. 204, p = .006, respectively), while rating by children-in-law were not (r = 0.217, p = .160). Proxy-ratings may not be an appropriate substitute for self-report. Homecare nurses may evaluate the QOL of PWD better than their family caregiver.

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