scholarly journals Description of health related quality of life of children and adolescents with hemophilia from India

2020 ◽  
Vol 19 (3) ◽  
pp. 12-16
Author(s):  
A. Dsouza ◽  
D. Nayak ◽  
A. Kurien ◽  
M. S. Pai ◽  
B. S. Nayak

Hemophilia is a genetic disease that impairs quality of life due to its chronicity of nature where the individual will experience spontaneous bleeding or bleeding after an injury which requires frequent visits to the hospital for treatment. The objective of this study was to find the Health-related quality of life (HRQoL) of children and adolescents with moderate and severe hemophilia between 6 years and 16 years using the Haemo-QoL questionnaire. A prospective survey was carried out among 107 children and adolescents from two hemophilia treatment centers in Karnataka state. Approval was taken from the ethical committee. The data was analyzed using SPSS version 16.0. The mean age was 11.00 ± 2.98 years. Among the 107 participants, 89.70% had hemophilia A and 10.30% had hemophilia B. Moderate hemophilia was found among 54.20% participants and 45.80% had severe hemophilia. Overall, the HRQoL scores (55.41) were higher in the age group of 6–7 years compared to 8–12 years and 13–16 years. The mean HRQoL in the domain of family were: 77.84 ± 23.12 among 6–7 years, 66.00 ± 17.34 among the 8–12 years and 60.38 ± 16.72 among 13–16 years. Children demonstrated poor HRQoL in the domains of family and friends. The results indicate a need for continuous monitoring of QoL to identify better treatment methods.

Author(s):  
Silva Hovsepian ◽  
Mostafa Qorbani ◽  
Mohammad Esmaeil Motlagh ◽  
Aryan Madady ◽  
Morteza Mansourian ◽  
...  

AbstractBackground:Considering the role of different ethnical, cultural and geographical factors in health related quality of life (HRQOL) as well as the perception of different populations regarding various weight disorders, we aimed to evaluate the association between body mass index (BMI) and HRQOL in Iranian children and adolescents.Methods:This cross-sectional study was part of the Weight Disorders Survey of the CASPIAN-IV study. During this study, students aged 6–18 years from urban and rural areas of 30 provinces of Iran were selected. HRQOL of the students was evaluated by using the Persian version of the Pediatric Quality of Life inventory (PedsQL™ 4.0™ 4.0) Generic Core Scales. The mean of total HRQOL and its subscales were compared in underweight, normal weight, overweight and obese students.Results:The mean of total HRQOL, physical functioning and psychological functioning scores in the total population were 83.31, 84.25 and 82.79, respectively. The mean of the total HRQOL score and the psychosocial score were significantly lower in underweight students aged 6–12 years than in other groups (p<0.05). The mean of the total HRQOL score and psychosocial score were significantly lower in obese students aged 13–18 years than in other groups (p<0.05). Overweight and obesity was negatively associated with total HRQOL, psychosocial and school functioning subscales (p<0.05). There was a significant negative association between emotional functioning and obesity (p<0.05).Conclusions:The findings or this study support the importance of personal perception and cultural norm roles in HRQOL. Given the association between weight disorders and psychosocial health, it is suggested that social and cultural factors have a more crucial role in the HRQOL of children and adolescents.


2017 ◽  
Vol 56 (1) ◽  
pp. 1-10 ◽  
Author(s):  
Anja Radsel ◽  
Damjan Osredkar ◽  
David Neubauer

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.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ann E. Aronu ◽  
Samuel N. Uwaezuoke ◽  
Uzoamaka V. Muoneke

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.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mina Pakkhesal ◽  
Elham Riyahi ◽  
AliAkbar Naghavi Alhosseini ◽  
Parisa Amdjadi ◽  
Nasser Behnampour

Abstract Background Childhood dental caries can affect the children’s and their parents’ oral health-related quality of life. The aim of the present study was to evaluate the impact of oral and dental health conditions on the oral health-related quality of life in preschool children and their parents. Methods In this descriptive-analytical cross-sectional study, samples were selected from children 3 to 6 years old enrolled in licensed kindergartens using "proportional allocation" sampling. Then, the parents of the children were asked to complete the Early Childhood Oral Health Impact Scale (ECOHIS). Results In this study, 350 children aged 3 to 6 years were evaluated with a mean age of 4.73 years. The mean dmft index (decayed, missed, and filled teeth) was 3.94 ± 4.17. The mean score of oral health-related quality of life was 11.88 ± 6.9, which 9.36 ± 5.02 belongs to the impact on children and 2.52 ± 3.20 to parents' impact. Conclusions The mean score of ECOHIS increased with the dmft index increase in children, indicating a significant relationship between the dmft and ECOHIS score. These outcomes can be used as proper resources to develop preventive policies and promote oral health in young children.


2015 ◽  
Vol 5 (S3) ◽  
Author(s):  
Sven-Arne Jansson ◽  
Eva Östblom ◽  
Jennifer Protudjer ◽  
Marianne Heibert Arnlind ◽  
Ulf Bengtsson ◽  
...  

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