scholarly journals The study of life quality parameters in children and adolescents with HIV associated tuberculosis

2020 ◽  
Vol 98 (9) ◽  
pp. 14-17
Author(s):  
D. N. Аdzhablaeva
Keyword(s):  
Hiv Infection ◽  
Children And Adolescents ◽  
Life Quality ◽  
Quality Parameters ◽  
Hiv Status ◽  
Cross Sectional ◽  
Quality Of Life Inventory ◽  
Life Inventory ◽  
Hiv Negative

The objective of the study: to perform comparative assessment of life quality (LQ) associated with health of children and adolescents suffering from tuberculosis, both HIV negative and HIV positive.Subjects and methods. In 2017-2019, the cross-sectional epidemiological study was conducted in Pediatric Department of Samarkand Regional TB Dispensary, the study was aimed to assess life quality associated with health in 70 children and adolescents at the age from 5 to 18 years old. 35 of them had tuberculosis and HIV infection (TB/HIV Group), 35 had tuberculosis and negative HIV status. Pediatric Quality of Life Inventory – PedsQL was used to assess the life quality.Conclusion. The combination of HIV infection and tuberculosis has a more pronounced effect on the physical and mental functioning of patients and worsens the life quality of children and adolescents to a greater extent than tuberculosis. 

scholarly journals Quality of life of  children with spinal muscular atrophy  and their caregivers  from the perspective of caregivers :  a Chinese cross-sectional study

2020 ◽  
Author(s):  
Mei Yao ◽  
Ying Ma ◽  
Ruiying Qian ◽  
Yu Xia ◽  
Changzheng Yuan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Muscular Atrophy ◽  
Cross Sectional Study ◽  
Type I ◽  
Type Ii ◽  
Cross Sectional ◽  
Type Iii ◽  
Quality Of Life Inventory ◽  
Life Inventory

Abstract Background: Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors associated with QoL in a cross-sectional study conducted in China.Methods: We recruited 101 children aged 0-17 years with SMA and their caregivers from a children’s hospital in China. Twenty-six children had type I SMA, 56 type II and 19 type III. Each child’s QoL was measured by the Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQL NMM), which was completed by the child’s caregivers. The caregiver’s QoL was measured by the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Information on sociodemographic characteristics, disease-specific characteristics, and treatments were collected using the proxy-reported questionnaire. Two-sample t-tests and one-way ANOVA were used to compare differences in average scores of QoL across subgroups.Results: Children with type III SMA had a higher average Total score of PedsQL NMM and higher average scores in domains Neuromuscular disease and Family resources than children with type I or type II SMA (p < 0.001). Caregivers of children with type III SMA reported higher average scores in the domains of Physical, Emotional, Social, and Cognitive functioning of the PedsQL FIM than those of children with types I or II SMA (p < 0.05). In addition, disease-related characteristics (e.g. limited mobility, stable course of disease, skeleton deformity, and digestive system dysfunction) and respiratory support were associated with lower average scores of PedsQL NMM and PedsQL FIM (p < 0.05). Exercise training, multidisciplinary team management and use of the medication Nusinersen were each associated with higher average scores in both PedsQL NMM and FIM (p < 0.05). Conclusion: Our study has demonstrated factors that may impair or improve QoL of children patients with SMA and their parents. Particularly, QoL was relatively poor in children with type I and type II SMA as well as in their caregivers compared to those with type III SMA. We strongly recommend that standard of care in a multidisciplinary team (MDT) be strengthened to improve the QoL of SMA patients. Our study called for increased attention from clinical physicians on measuring QoL in their clinical practices in order to enhance the understanding of impacts of SMA and to make better decisions regarding treatment.

scholarly journals EMOTIONAL REPERCUSSIONS AND QUALITY OF LIFE IN CHILDREN AND ADOLESCENTS UNDERGOING HEMODIALYSIS OR AFTER KIDNEY TRANSPLANTATION

2020 ◽  
Vol 38 ◽  
Author(s):  
Ana Amélia Fayer Rotella ◽  
Rosemeire Aparecida do Nascimento ◽  
Maria Fernanda Carvalho de Camargo ◽  
Paulo Cesar Koch Nogueira
Keyword(s):  
Quality Of Life ◽  
Kidney Transplantation ◽  
Kidney Disease ◽  
Children And Adolescents ◽  
Emotional Suffering ◽  
Quality Of Life Inventory ◽  
Significant Difference ◽  
End Stage ◽  
Life Inventory

ABSTRACT Objective: To investigate the emotional repercussions and quality of life (QOL) associated with end-stage kidney disease (ESKD) in children and adolescents undergoing hemodialysis or a kidney transplant (TX). Methods: We conducted a quantitative-qualitative study. 48 children and adolescents with ESKD were interviewed; half of them underwent hemodialysis treatment, and the other half had a kidney transplantation. Their respective 48 caregivers also participated in the study. The questionnaire involved both the Pediatric Quality of Life Inventory and a thematic story-drawing tool. An analysis of the QOL questionnaire’s results was done by comparing the sum of points between groups and the theme-based story-drawing consisted of interpreting the data contained in the material using Freudian and Lacanian theories. Results: In the QOL questionnaires, the total score was higher in the transplanted patients and in their caregivers, suggesting a perception of better QOL after kidney transplantation. In the specific aspects of the questionnaire, physical capacity was considered superior by children who underwent transplants and their caregivers. There were no differences between the groups in the emotional, social and school aspects. However, the caregivers of the patients who had a transplant perceived a significant difference in QOL in the school aspect. In the thematic story-drawings, emotional suffering in the two analyzed groups was evidenced regardless of the treatment. Conclusions: Despite the questionnaire results suggesting that transplantation does improve some aspects of QOL, there were no differences observed between kidney replacement therapies regarding the emotional repercussion of chronic kidney disease.

scholarly journals Quality of life of  children with spinal muscular atrophy  and their caregivers  from the perspective of caregivers :  a Chinese cross-sectional study

2020 ◽  
Author(s):  
Mei Yao ◽  
Ying Ma ◽  
Ruiying Qian ◽  
Yu Xia ◽  
Changzheng Yuan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Muscular Atrophy ◽  
Cross Sectional Study ◽  
Type I ◽  
Type Ii ◽  
Cross Sectional ◽  
Type Iii ◽  
Quality Of Life Inventory ◽  
Life Inventory

Abstract Background: Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors associated with QoL in a cross-sectional study conducted in China.Methods: We recruited 101 children aged 0-17 years with SMA and their caregivers from a children’s hospital in China. Twenty-six children had type I SMA, 56 type II and 19 type III. Each child’s QoL was measured by the Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQL NMM), which was completed by the child’s caregivers. The caregiver’s QoL was measured by the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Information on sociodemographic characteristics, disease-specific characteristics, and treatments were collected using the proxy-reported questionnaire. Two-sample t-tests and one-way ANOVA were used to compare differences in average scores of QoL across subgroups.Results: Children with type III SMA had a higher average Total score of PedsQL NMM and higher average scores in domains Neuromuscular disease and Family resources than children with type I or type II SMA (p < 0.001). Caregivers of children with type III SMA reported higher average scores in the domains of Physical, Emotional, Social, and Cognitive functioning of the PedsQL FIM than those of children with types I or II SMA (p < 0.05). In addition, disease-related characteristics (e.g. limited mobility, motor degeneration, skeleton deformity, and digestive system dysfunction) and respiratory support were associated with lower average scores of PedsQL NMM and PedsQL FIM (p < 0.05). Exercise training, multidisciplinary team management and use of the medication Nusinersen were each associated with higher average scores in both PedsQL NMM and FIM (p < 0.05).Conclusion: Our study has demonstrated factors that may impair or improve QoL of children patients with SMA and their parents. Particularly, QoL was relatively poor in children with type I and type II SMA as well as in their caregivers compared to those with type III SMA. We strongly recommend that standard of care in a multidisciplinary team (MDT) be strengthened to improve the QoL of SMA patients. Our study called for increased attention from clinical physicians on measuring QoL in their clinical practices in order to enhance the understanding of impacts of SMA and to make better decisions regarding treatment.

scholarly journals Changes in quality of life in adolescents as an indicator of treatment efficiency

2014 ◽  
Vol 95 (6) ◽  
pp. 866-869
Author(s):  
D N Adzhablaeva
Keyword(s):  
Quality Of Life ◽  
Life Quality ◽  
Specific Treatment ◽  
Positive Influence ◽  
Patient Treatment ◽  
School Life ◽  
Quality Of Life Inventory ◽  
Quality Of Life Indicators ◽  
Life Inventory

Aim. The research is targeted for estimating quality of life in adolescents with different types of tuberculosis. Methods. Quality of life in 30 adolescents aged 13-17 years was evaluated using Pediatric Quality of Life Inventory - PedsQL questionnaire. Parents were evaluated separately. An initial level of a quality of life before the treatment initiation and quality of life right after in-patient treatment completion (56 days) were compared. Results. Adolescents had pessimistic and emotionally limited subjective estimations of their clinical condition and its influences on all types of activities. The change in Pediatric Quality of Life Inventory scores (49.4±2.1 before treatment, compared to 51.9±2.0 after treatment) confirmed that recreation and treatment of tuberculosis significantly raised the subjective scores for all aspects of patient’s quality of life. Quality of life indicators by different functional scales were higher if assessed by parents compared to patients themselves (p 0.001). Parents were sure in positive influence of the prolonged course of the specific treatment on «school life» scale parameters. Comparative assessment of quality of life trend showed that improvement after treatment was observed according to assessment both by parents and patients themselves. All quality of life indicators were higher in female patients (score of all types of activities - 55.7±2.7 points) compared to males (48.3±2.8 points). Conclusion. Revealed trends confirm the need for performing recreational, medical, social, rehabilitative actions and psychosocial correction considering the age features of adolescents, their subjective estimations and functioning in a hospital.

scholarly journals Aspects of motor development and quality of life in the context of child obesity

2021 ◽  
Vol 31 (1) ◽  
pp. 58-65
Author(s):  
Maria Iara Socorro Martins ◽  
Natália Aguiar Moraes Vitoriano ◽  
Cristiany Azevedo Martins ◽  
Elisete Mendes Carvalho ◽  
Renata Viana Brígido de Moura Jucá ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Motor Development ◽  
Anxiety And Depression ◽  
Pediatric Endocrinology ◽  
Cross Sectional ◽  
Quality Of Life Inventory ◽  
Severely Obese ◽  
Life Inventory

Introduction: Child development is a period of progressive and complex transformations related to growth, maturation, learning, motor skills, and psychosocial issues. Objective: Analyze the influence of obesity on the aspects of motor development and quality of life of children aged three to eight years, and and their mothers’ levels of anxiety and depression. Methods: Cross-sectional descriptive and quantitative approach study with children enrolled and attended at a pediatric endocrinology in Fortaleza, CE, in the period between June and November 2017. The study sample consisted of 24 children from three to eight years of age. We used the anthropometric quantification, the Motor Development Scale, and the Pediatric Quality of Life Inventory (PedsQL™) for children. We applied the Beck anxiety and depression questionnaires for mothers. Results: 16 were female, and 17 were severely obese. Most of the sample showed motor development changes 42,85% classified as “inferior” in the obesity category, and 41.17% in the severely obese category. Both groups revealed”complete right-handed” and “undefined” laterality in around 40% of the individuals. The quality of life had a low mean score. The majority of mothers from both groups presented minimal anxiety and depression. Conclusions: Obesity interferes negatively with the overall motor development, determination of laterality, and quality of life of children, perceiving more severe levels of anxiety and depression in mothers of children severely obesity.

The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease

2008 ◽  
Vol 17 (4) ◽  
pp. 613-626 ◽  
Author(s):  
Bradley S. Marino ◽  
David Shera ◽  
Gil Wernovsky ◽  
Ryan S. Tomlinson ◽  
Abigail Aguirre ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Heart Disease ◽  
Children And Adolescents ◽  
Life Measure ◽  
Quality Of Life Inventory ◽  
Life Inventory

scholarly journals Kualitas Hidup Penderita Talasemia berdasarkan Instrumen Pediatric Quality of Life Inventory 4.0 Generic Core Scales di Ruang Rawat Anak Rumah Sakit Umum Cut Meutia Aceh Utara

Sari Pediatri ◽  
2018 ◽  
Vol 20 (1) ◽  
pp. 11
Author(s):  
Muhsinun Nikmah ◽  
Mauliza Mauliza
Keyword(s):  
Quality Of Life ◽  
Cross Sectional ◽  
Quality Of Life Inventory ◽  
Pedsql 4.0 ◽  
Life Inventory

Latar belakang. Talasemia merupakan kelainan genetik yang diderita seumur hidup dan akan menimbulkan banyak masalah akibat proses penyakit itu sendiri maupun karena pengobatannya. Hal ini akan memengaruhi kualitas hidup anak.Tujuan. Mengetahui kualitas hidup penderita talasemia berdasarkan instrumen Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales di Ruang Rawat Anak Rumah Sakit Umum Cut Meutia Aceh Utara.Metode. Penelitian deskriptif dengan desain penelitian cross sectional dengan besar sampel sebanyak 41 orang anak.Hasil. Hasil analisis univariat didapatkan rerata kualitas hidup subjek penelitian adalah 60,48. Kualitas hidup paling tinggi terdapat pada kelompok usia 13-18 tahun (68,42), jenis kelamin laki-laki (62,86), pendidikan SMA/Sederajat (81,52), kadar Hb pre-transfusi <9 g/dL (60,51), mendapat transfusi 3 bulan terakhir (61,60), lama sakit >5 tahun (65,74), dan pendapatan orangtua per bulan > Rp.3.5.000.000 (68,59).Kesimpulan. Rerata kualitas hidup penderita talasemia di Rumah Sakit Umum Cut Meutia Aceh Utara adalah buruk, khususnya pada fungsi sekolah.

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