Quality of life analysis of children with patent ductus arteriosus after closure treatment: A single‐centre study

2021 ◽  
Author(s):  
Kai‐Peng Sun ◽  
Wen‐Peng Xie ◽  
Jian‐Feng Liu ◽  
Qiang Chen ◽  
Hua Cao
Keyword(s):  
Quality Of Life ◽  
Patent Ductus Arteriosus ◽  
Ductus Arteriosus ◽  
Single Centre ◽  
Centre Study ◽  
Single Centre Study ◽  
Life Analysis ◽  
Patent Ductus

scholarly journals Serum natremia affects health-related quality of life in patients with liver cirrhosis: a prospective, single centre study

2013 ◽  
Vol 12 (3) ◽  
pp. 448-455 ◽  
Author(s):  
Ewa Wunsch ◽  
Grzegorz Naprawa ◽  
Dorota Koziarska ◽  
Małgorzata Milkiewicz ◽  
Przemysław Nowacki ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Liver Cirrhosis ◽  
Health Related Quality ◽  
Single Centre ◽  
Centre Study ◽  
Related Quality ◽  
Single Centre Study ◽  
Health Related

scholarly journals Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China

2020 ◽  
Author(s):  
Qisheng Gao ◽  
Shanshan Wang ◽  
Jianping Ren ◽  
Xin Wen
Keyword(s):  
Quality Of Life ◽  
Patent Ductus Arteriosus ◽  
Rare Diseases ◽  
Ductus Arteriosus ◽  
Psychosocial Health ◽  
School Functioning ◽  
Autoimmune Thrombocytopenia ◽  
Parent Proxy ◽  
Patent Ductus

Abstract Background: It becomes increasingly important to measure the health-related quality of life (HRQoL) of rare diseases in children and adolescents in recent decades. Much attention has been paid to investigate the HROoL of one specific rare disease by self-report in previous studies. This study aimed to evaluate and compare the HROoL of 11 rare diseases in Chinese children by parent proxy-report, to explore the factors associated with HROoL of patients and to know the problems of most concern.Methods: A total of 651 children aged from 2 to 18 were enrolled from the Children’s Hospital Affiliated Zhejiang University in 2018. Their parents completed the parent proxy-reports version of the Pediatric Quality of Life InventoryTM 4.0 (PedsQLTM). Independent samples t-test, one-way ANOVA, or Kruskal-Wallis H test was used to compare HROoL scores between groups. Multilevel linear regression models with random intercept were applied to analyze the relationship between socioeconomic variables and both the total score and sub-domain scores.Results: The total PedsQL scores of Patent ductus arteriosus, Infantile agranulocytosis, Autoimmune thrombocytopenia, Polysyndactyly, Hirschsprung disease, Cleft lip and palate, Tetralogy of fallot, Myasthenia gravis, Guillain-barre syndrome, Glycogen storage disease, and Langerhans cell histiocytosis children were 79.65±5.46, 95.88±3.48, 71.39±3.27, 91.77±6.35, 76.18±6.92, 96.33±4.22, 77.85±8.90, 95.99±3.31, 85.77±4.56, 82.97±4.13 and 77.6±5.15, respectively. Age was significantly associated with physical functioning, school functioning, and psychosocial health score. Gender and The household registration place was significantly associated with the overall score. The most urgent desire of patients was reducing the overall medical costs.Conclusions: These data show that Patent ductus arteriosus scores lowest in physical functioning, Autoimmune thrombocytopenia (ITP) ranks the lowest in the emotional functioning score, social functioning score, school functioning score, psychosocial health score, and total score. Incentive policies should be further taken to improve orphan drug availability and reduce the financial burden of rare diseases.

scholarly journals AB004. Quality of life in patients who underwent liver resection: a single centre study

2018 ◽  
Vol 3 ◽  
pp. AB004-AB004
Author(s):  
Edward S. Uy Magadia ◽  
Catherine S. C. Teh ◽  
Amornetta Jordan-Casupang
Keyword(s):  
Quality Of Life ◽  
Liver Resection ◽  
Single Centre ◽  
Centre Study ◽  
Single Centre Study

Potential predictors of the selected areas of the quality of life in adolescents with Crohn’s disease in remission – a single-centre study

2019 ◽  
Vol 76 (1) ◽  
pp. 1-8
Author(s):  
Grażyna Cepuch ◽  
Agnieszka Kruszecka-Krówka ◽  
Agnieszka Gniadek ◽  
Marta Daszuta ◽  
Maria Kózka
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Single Centre ◽  
Centre Study ◽  
Single Centre Study

scholarly journals The effects of WeChat follow-up management to improve the parents’ mental status and the quality of life of premature newborns with patent ductus arteriosus

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Bin Yang ◽  
Jian-Feng Liu ◽  
Wen-Peng Xie ◽  
Hua Cao ◽  
Qiang Chen
Keyword(s):  
Quality Of Life ◽  
Patent Ductus Arteriosus ◽  
Mental Status ◽  
Ductus Arteriosus ◽  
Intervention Group ◽  
Control Group ◽  
Patent Ductus ◽  
Better Than

Abstract Objective This study aimed to explore the effect of WeChat follow-up management on improving the parents’ mental status and the quality of life of premature newborns with patent ductus arteriosus (PDA) after discharge. Methods Participants were randomly divided into an intervention group and a control group. WeChat was used in the intervention group for the postdischarge follow-up management, while the control group was managed traditionally. The psychological status and quality of life of the parents of the two groups were analyzed and compared. Results The SAS and SDS scores in the intervention group at three months after discharge were significantly better than those at discharge, but there was no significant change in the control group. During the three-month follow-up, the SAS and SDS scores in the intervention group were significantly better than those in the control group. The WHOQOL-BREF scale scores in the intervention group were significantly better than those in the control group in physiology, psychology, social relations, and the environment. The total quality of life score in the intervention group was also significantly better than that in the control group. All patients in the intervention group were followed up as appropriate, while five patients in the control group were lost to follow-up. The incidence of pneumonia and feeding intolerance in the intervention group were significantly lower than those in the control group. Conclusion The application of WeChat in the follow-up management of premature infants with PDA could alleviate parents’ anxiety and depression in taking care of their children at home and can improve their quality of life.

scholarly journals Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China

2020 ◽  
Author(s):  
Qisheng Gao ◽  
Shanshan Wang ◽  
Jianping Ren ◽  
Xin Wen
Keyword(s):  
Quality Of Life ◽  
Patent Ductus Arteriosus ◽  
Rare Diseases ◽  
Ductus Arteriosus ◽  
Psychosocial Health ◽  
School Functioning ◽  
Autoimmune Thrombocytopenia ◽  
Parent Proxy ◽  
Patent Ductus

Abstract Background It is increasingly important to measure the health-related quality of life (HRQoL) of rare disease in children and adolescents in recent decades. Much attention has been paid to investigate the HROoL of one specific rare disease by self-report in previous studies. This study aimed to evaluate and compare the HROoL of 11 rare diseases in Chinese children by parent proxy-report, to explore the factors associated with HROoL of patients and to know the problems of most concern. Methods A total of 651 children aged from 2 to 18 were enrolled from the Children’s Hospital Affiliated Zhejiang University in 2018. Their parents completed the parent proxy-reports version of the Pediatric Quality of Life Inventory TM 4.0 (PedsQL TM ). Independent-samples t -test, one-way ANOVA or Kruskal-Wallis H test was used to compare HROoL scores between groups. Multilevel linear regression models with random intercepts was applied to analyze the relationship between socioeconomic variables and both the total score and sub-domain scores. Results The total PedsQL scores of Patent ductus arteriosus, Infantile agranulocytosis, Autoimmune thrombocytopenia, Polysyndactyly, Hirschsprung disease, Cleft lip and palate, Tetralogy of fallot, Myasthenia gravis, Guillain-barre syndrome, Glycogen storage disease and Langerhans cell histiocytosis children were 79.65±5.46, 95.88±3.48, 71.39±3.27, 91.77±6.35, 76.18±6.92, 96.33±4.22, 77.85±8.90, 95.99±3.31, 85.77±4.56, 82.97±4.13 and 77.6±5.15, respectively. Age was significantly associated with physical functioning, school functioning and psychosocial health score. Gender and household registration place were significantly associated with overall score. The most urgent desire of patients was reducing the overall medical costs. Conclusions These data show that Patent ductus arteriosus scores lowest in physical functioning, Autoimmune thrombocytopenia (ITP) ranks the lowest in emotional functioning score, social functioning score, school functioning score, psychosocial health score and total score. Incentive policies should be further adopted to improve orphan drug availability and reduce the financial burden of rare diseases.

scholarly journals A Single Centre Study from India on the IMPACT on Quality of Life in Thalassaemia Major – HSCT Versus LONG TERM Transfusion

2016 ◽  
Vol 22 (3) ◽  
pp. S192
Author(s):  
Revathi Raj ◽  
Sreejith Ramachandran ◽  
Ramya Uppuluri ◽  
Divya Subburaj ◽  
Atish Bakane ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Thalassaemia Major ◽  
Single Centre ◽  
Centre Study ◽  
Single Centre Study ◽  
The Impact
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