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.

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.

Quality of life evaluation in patients with mucopolysaccharidosis using PedsQL

2018 ◽  
Vol 23 (2) ◽  
pp. 278-285 ◽  
Author(s):  
Marcos Almeida Matos ◽  
Fábio Ferri-de-Barros ◽  
Roberto Guarniero
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Internal Consistency ◽  
Psychosocial Health ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Health Domain ◽  
Pedsql 4.0 ◽  
Physical Health Domain

Mucopolysaccharidosis (MPS) is a rare and neglected disorder. Only a few studies to date have focused on humanistic impacts of the disease, particularly health-related quality of life (HRQOL). The objective of our research is to (1) evaluate HRQOL in Brazilian patients with MPS and (2) assess the validity of the PedsQL 4.0 Generic Core Scales (PedsQL) in this specific disease. We performed an analytical cross-sectional study using the Brazilian Portuguese version of the PedsQL in 22 patients with MPS between the ages of 8 and 21. With regard to assessing the validity of the PedsQL for MPS, we evaluated internal consistency using Cronbach’s α coefficient and reliability using the Spearman–Brown estimate of agreement. The mean HRQOL score in our sample was 63.6 points. The worst score was obtained in the Psychosocial domain (61.9) on account of interference with school (56.1), while the Physical Health domain had the highest score (67.6). The total PedsQL internal consistency was .764 points. The Physical Health domain obtained the highest internal consistency (.914), whereas the Psychosocial Health domain obtained the lowest one (.754). MPS was demonstrated to decrease HRQOL, and PedsQL seems to be a valid instrument to perform this kind of analysis.

Quality of life in multiple sclerosis patients in Spain

2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Well Being ◽  
Cross Sectional Study ◽  
Self Report ◽  
Regression Analyses ◽  
Cross Sectional ◽  
Scale Scores ◽  
Multiple Sclerosis Patients

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.

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 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.

Parent Reports of Quality of Life for Pediatric Patients With Cancer With No Realistic Chance of Cure

2011 ◽  
Vol 29 (6) ◽  
pp. 639-645 ◽  
Author(s):  
Deborah Tomlinson ◽  
Pamela S. Hinds ◽  
Ute Bartels ◽  
Eleanor Hendershot ◽  
Lillian Sung
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Psychosocial Health ◽  
Cross Sectional Study ◽  
Mean Difference ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Entire Cohort ◽  
Targeted Interventions

Purpose To compare quality of life of children with cancer with no reasonable chance of cure reported by parents 6 months or fewer versus more than 6 months before death. Patients and Methods This cross-sectional study included children between the ages of 2 and 18 years with cancer and no reasonable chance of cure at The Hospital for Sick Children, Toronto, Ontario, Canada. Parents reported quality of life on behalf of their children. Outcomes were the PedsQL 4.0 Generic Core Scales, Acute Cancer Module, and Multidimensional Fatigue Scale. Results Seventy-three parents of children participated. Compared with children who survived more than 6 months (n = 43), those who died at 6 months or fewer (n = 30) had significantly worse physical health (mean difference, 15.9; 95% CI, 1.8 to 30.0; P = .028), more pain and hurt (mean difference, 15.5; 95% CI, 0.9 to 30.0; P = .037), and worse general fatigue (mean difference, 15.8; 95% CI, 2.4 to 29.1; P = .021) and sleep/rest fatigue (mean difference, 16.0; 95% CI, 3.5 to 28.5; P = .013). Among the entire cohort, those with leukemia/lymphoma had worse physical and psychosocial quality of life compared with those with solid or brain tumors. Recent stem-cell transplantation was associated with worse psychosocial health. Conclusion Parents of children with cancer reported worse physical health, pain, and fatigue proximal to death. Those with leukemia/lymphoma were at higher risk for impaired quality of life. This knowledge can help in the design of targeted interventions to improve quality of life for children dying as a result of cancer.

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

Cross-sectional study of urinary problems in adults with cerebral palsy: awareness and impact on the quality of life

2017 ◽  
Vol 38 (7) ◽  
pp. 1193-1203 ◽  
Author(s):  
Necmettin Yıldız ◽  
Yeşim Akkoç ◽  
Murat Ersöz ◽  
Berrin Gündüz ◽  
Belgin Erhan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Urinary Problems
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