Health-Related Quality of Life in Children and Adolescents with Autism Spectrum Disorder

2011 ◽  
Vol 39 (2) ◽  
pp. 123-131 ◽  
Author(s):  
Inge Kamp-Becker ◽  
Johanna Schröder ◽  
Holger Muehlan ◽  
Helmut Remschmidt ◽  
Katja Becker ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Reference Sample ◽  
Autism Spectrum ◽  
Self Report ◽  
Health Related Quality ◽  
Adolescents With Autism ◽  
Related Quality ◽  
Health Related

Objective: This study evaluates self- and proxy-reported health-related quality of life (HRQOL) in children and adolescents with autism spectrum disorders (ASD). The study also compares HRQOL in ASD patients with a healthy control sample and a psychiatric reference sample. Method: 42 children and adolescents (39 male, mean age: 12.7 ± 2.6 years, mean IQ: 100.5 ± 20.7) with the diagnosis of autism spectrum disorder (ASD) and their parents completed the Inventory for the Assessment of Quality of Life in Children and Adolescents (ILK). Results: Mean ILK LQ 0–28 scores were 20.6 (± 4.6) (self-report version) and 18.2 (± 4.0) (proxy version). Compared to a reference sample, mean ILK scores from the ASD sample were at the 47th percentile (self-report) and the 33rd percentile (proxy). Compared to children and adolescents with psychiatric disorders, self-reported ILK scores correlated with the 69th percentile, and proxy-reported ILK scores correlated with the 67th percentile. Self-reported HRQOL was significantly higher than proxy-reported HRQOL. No significant correlation was found between HRQOL and age, IQ, or autistic symptoms. Conclusions: HRQOL in children and adolescents with ASD seems to be better than in other psychiatric disorders, but lower than in healthy controls.

scholarly journals Health-related quality of life in children and adolescents with cerebral palsy

2017 ◽  
Vol 56 (1) ◽  
pp. 1-10 ◽  
Author(s):  
Anja Radsel ◽  
Damjan Osredkar ◽  
David Neubauer
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Children And Adolescents ◽  
Social Inclusion ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Mean

Abstract Introduction In a cross-sectional cohort study, health-related quality of life of Slovenian children and adolescents with cerebral palsy was examined, and factors associated with it have been identified. Methods Caregivers of 122 children and adolescents with cerebral palsy were addressed to fill out proxy versions of HRQoL questionnaires (DISABKIDS generic and cerebral palsy module). Children and adolescents without cognitive deficit were asked to fill out the self-report versions. Results Ninety-one families of 43 children (the mean age is 10 years, 6 months, SD 1.2; 26 males and 17 females) and 48 adolescents (the mean age is 14 years, SD 0.9; 23 males and 25 females) completed proxyreports. Forty-eight individuals were able to self-report (26 children and 22 adolescents). Health-related quality of life was perceived as good. Self-reporting participants scored higher than their caregivers (mean score 75.6, SD 15.9 versus mean 72.3, SD 17.9; p=0.048). Adolescents scored lower than children in all domains (mean score 69.4, SD 19.4 versus mean 80.8, SD 10.0; p=0.01). Higher age (p<0.001), pain (p<0.001) and disturbed sleep (p=0.002) were strong predictors of worse health-related quality of life. Social Inclusion and Independence domains received the lowest scores. Conclusions Slovenian children and adolescents with cerebral palsy have a good health-related quality of life, with Social Inclusion and Independence being the weakest domains. Children reported higher scores than adolescents or their caretakers. Pain was the strongest predictor of poor health-related quality of life.

Impact of dental treatment on the oral health‐related quality of life of children and adolescents with Autism Spectrum Disorder

2021 ◽  
Author(s):  
Joelma Silva Almeida ◽  
Regina Fátima Fernandes ◽  
Áurea Castelo Branco Andrade ◽  
Bruna da Costa Almeida ◽  
Anderson Nixon da Silva Amorim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Oral Health ◽  
Dental Treatment ◽  
Autism Spectrum ◽  
Health Related Quality ◽  
Adolescents With Autism ◽  
Related Quality ◽  
Health Related

scholarly journals Parental perceptions of oral health-related quality of life of Brazilian children and adolescents with autism spectrum disorder

2019 ◽  
Vol 22 (4) ◽  
pp. 497-505
Author(s):  
Viviane Cancio ◽  
Khawana Faker ◽  
Mônica Almeida Tostes
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Oral Health ◽  
Autism Spectrum ◽  
Caries Experience ◽  
Health Related Quality ◽  
Adolescents With Autism ◽  
Related Quality ◽  
Health Related

Objective:This paper aimed to assess the oral health-related quality of life (OHRQoL) of children and adolescents with autism spectrum disorder (ASD) using the parental/caregiver perceptions questionnaire (PCPQ). Materials and methods: Children aged 2 to 14 years, enrolled in the ACOLHER/PNE project at the Fluminense Federal University, RJ, Brazil, were assessed. The main independent variable was dental caries experience, diagnosed according to the World Health Organization (WHO) criteria. The variable was categorized as caries-free when dmft/DMFT=0 and caries experience when dmft/DMFT ≥ 1. Caregiver schooling, age, sex, and socioeconomic factors (Brazilian minimum wage – BMW) were the other independent variables. Quality of life (QoL) was measured using PCPQ subscales and total score. Mann-Whitney U, Kruskal-Wallis, and multivariate Poisson regression correlation analysis were performed. Results: The median age of patients was 8 (SD= 3.76). The study group consisted of 57 (76.0%) males and 18 (24.0%) females. Fifty parents (66.7%) have more than eight years of education and 35 (46.7%) earn less than 2 BWM. The impact values were significantly higher in male individuals in the oral symptoms (OS) domain and in individuals without caries experience in the social well-being (SW) domain (p<0.05). Conclusions: these results seem to suggest that individuals with ADS without caries experience in permanent dentitions in the SW domain and males in the OS domain had a higher impact quality of life. 

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 Reliability of generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome: a systematic review

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ann E. Aronu ◽  
Samuel N. Uwaezuoke ◽  
Uzoamaka V. Muoneke
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Children And Adolescents ◽  
Idiopathic Nephrotic Syndrome ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Generic Quality ◽  
Quality Of Life Instruments

Abstract Introduction Most of the studies reporting the negative impact of idiopathic nephrotic syndrome on health-related quality of life in children and adolescents were conducted with generic quality-of-life instruments rather than disease-specific instruments. The consistency of these studies' findings using these generic instruments is not well established. Aim This systematic review aims to determine the reliability of current generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome. Methods We searched the PubMed, MEDLINE, EMBASE, and Google Scholar databases for articles published between 2000 and 2020, using appropriate descriptors. We included primary studies that met the eligibility criteria, independently screened their titles and abstracts, and removed all duplicates during the study-selection process. We resolved disagreements until a consensus was reached on study selection. We independently retrieved relevant data, including the generic quality-of-life instruments and the subjects’ and controls’ aggregate health-related quality of life scores, using a preconceived data-extraction form. Results Ten original articles were selected for qualitative and quantitative analyses. Some of the studies reported the following significant findings. The mean health-related quality of life scores for children with prevalent and incident nephrotic syndrome were 68.6 (range, 52.6–84.6) and 73.7 (range, 55.9–91.5), respectively. Children with idiopathic nephrotic syndrome and their controls with other chronic diseases had median scores of 65 (interquartile range, 59–68.75) and 62.2 (interquartile range, 58.05–65.78). Patients on oral immunosuppressive drug and intravenous rituximab reportedly had median scores of 76.2 and 72.6 and mean scores of 71.4 (range, 55.4–87.4) and 61.6 (range, 42.1–81.1) respectively for quality-of-life assessment on the ‘school functioning domain.’ Conclusions The health-related quality of life scores in patients with idiopathic nephrotic syndrome are consistently low. Lower scores occur in prolonged disease duration and severe clinical phenotypes, whereas the scores are higher than the scores obtained in other chronic diseases. These consistent findings underscore the reliability of the current generic instruments in assessing health-related quality of life in patients with idiopathic nephrotic syndrome.

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