Quality of life in young patients after cone reconstruction for Ebstein anomaly

2019 ◽  
Vol 29 (06) ◽  
pp. 756-760 ◽  
Author(s):  
Kristen L. Sessions ◽  
Charlotte Van Dorn ◽  
Joseph A. Dearani ◽  
Simrit Warring ◽  
Kaitlin Leopold ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Patients ◽  
Chronic Health Conditions ◽  
Health Conditions ◽  
Full Time ◽  
Ebstein Anomaly ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Parent Proxy

AbstractObjective:To evaluate the health status and quality of life of young patients who had cone reconstruction for Ebstein anomaly.Methods:We reviewed all patients who had cone reconstruction from 2007 to 2016 at our institution. Prospective surveys were mailed to all eligible patients. Quality of life was assessed using the PedsQL 4.0 Generic Core Scales, including four domains: physical, emotional, social, and school functioning.Results:Of 116 eligible patients, 72 (62%) responded. About 96% reported their health as excellent or good, and 52% were symptom-free. Only 37% of patients were taking any medications, the most common of which was aspirin (30%). Only 19% had been hospitalised for cardiac reasons following cone reconstruction. The average self-reported quality of life was 85.3/100, whereas the average parent proxy-reported quality of life was 81.8/100. There was no difference by self or parent proxy-report in quality of life between cone reconstruction patients and healthy children; however, quality of life was significantly better compared with children with other chronic health conditions. By self-report and parent proxy-report, 15.1 and 16.7% of patients were deemed “at risk” for reduced quality of life, respectively. Socially, 63/64 (98%) patients over 5 years old were either full-time students or working full-time.Conclusion:Children with Ebstein anomaly following cone reconstruction have excellent quality of life comparable with healthy peers and significantly better than other children with chronic health conditions. Families of children with Ebstein anomaly can expect excellent quality of life, long-term health status, and social functioning following cone reconstruction.

scholarly journals Quality of life in Hungarian patients with cystic fibrosis

2013 ◽  
Vol 154 (20) ◽  
pp. 784-791 ◽  
Author(s):  
Réka Bodnár ◽  
Klára Holics ◽  
Rita Ujhelyi ◽  
László Kádár ◽  
Lajos Kovács ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Self Report ◽  
Clinical Severity ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Multisystemic Disease ◽  
Cystic Fibrosis Questionnaire ◽  
Parent Proxy

Introduction: Cystic fibrosis is a progressive multisystemic disease which affects the quality of life of patients. Aim: The aim of the study was to evaluate quality of life in Hungarian patients with cystic fibrosis. Methods: Validated Hungarian translation of The Cystic Fibrosis Questionnaire – Revised was used to measure quality of life. Clinical severity was determined on the basis of Shwachman–Kulczycki score. Lung function was measured using spirometry. Results: 59 patients were included from five centres in Hungary. The relationships between 8–13 year-old children self-report and parent proxy report was 0.77 (p<0.001) in physical functioning, 0.07 (p<0.001) in emotional functioning, 0.51 (p<0.001) in eating, 0.21 (p<0.001) in treatment burden, 0.54 (p<0.001) in body image, 0.49 (p<0.001) in respiratory symptoms and 0.40 (p<0.001) in digestive symptoms domains. Conclusions: In contrast to physical domains weak correlations were observed between answers obtained from children and their parents in psychosocial domains. The perception of both patients and their parents should be assessed when measuring quality of life in paediatric patients with cystic fibrosis. Orv. Hetil., 2013, 154, 784–791.

Traumatic Brain Injury Quality of Life Communication Item Bank Short Form--Parent-Proxy Report Version

2019 ◽  
Author(s):  
Matthew L. Cohen ◽  
David S. Tulsky ◽  
Aaron J. Boulton ◽  
Pamela A. Kisala ◽  
Hilary Bertisch ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Short Form ◽  
Item Bank ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Communication Item ◽  
Parent Proxy

Meta-analysis of quality of life in children and adolescents with ADHD: By both parent proxy-report and child self-report using PedsQL™

2016 ◽  
Vol 51-52 ◽  
pp. 160-172 ◽  
Author(s):  
Yi-chen Lee ◽  
Hao-Jan Yang ◽  
Vincent Chin-hung Chen ◽  
Wan-Ting Lee ◽  
Ming-Jen Teng ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Meta Analysis ◽  
Self Report ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Parent Proxy

scholarly journals Quality of life among obese and non-obese early adolescents

2017 ◽  
Vol 57 (4) ◽  
pp. 216
Author(s):  
Putu Vivi Paryati ◽  
I. G. Lanang Sidiartha ◽  
I. G. Ayu Trisna Windiani ◽  
I. G. A. N. Sugitha Adnyana
Keyword(s):  
Quality Of Life ◽  
Early Adolescents ◽  
Mean Difference ◽  
Total Quality ◽  
Proxy Report ◽  
Child Report ◽  
Parent Proxy Report ◽  
Parent Proxy ◽  
School Function

Background Obesity in adolescents adversely affects both their psychological as well as their physical health.Objective To compare the quality of life between obese and non-obese early adolescents, using the PedsQL inventory.Methods A cross-sectional study was carried out on early adolescents aged 10-12 years among several elementary schools in Denpasar, Bali. Body mass index (BMI) percentiles for age and sex were categorized as obese (BMI ≥95th percentile) and non-obese (BMI <95th percentile). Data on quality of life were collected using PedsQL Generic Core Scales version 4.0 inventory, filled by the children and their parents separately.Results Total PedsQL score in obese and non-obese group were significantly difference in both reports [child report: mean difference of 9.59 (95%CI 7.14 to 12.05; P<0.05) and parent-proxy report: mean difference at 8.95(95%CI6.64 to 11.26; P<0.05)]. After classifying subjects into impaired and not impaired quality of life based on a total score cut-off <78 as well as other cut-off points for each domain, the individual domains of physical, social, and school function were also significantly associated with obesity (child report: P=0.02, P< 0.001, P=0.018, respectively, and parent-proxy report:P=0.007, P<0.001, P<0.001, respectively). However, emotional function was not significantly associated with obesity (P>0.05). After adjusting for age, gender, and parental education, obesity was significantly associated with PedsQL scores in the child report (OR 7.25; 95%CI 2.94 to 17.89; P<0.05) and the parent-proxy report (OR 10.87; 95%CI 3.83 to 30.84; P<0.05).Conclusion Obese early adolescents reported significantly poorer quality of life with regards to the physical, social, school function domains and total quality of life than those who were classified into non-obese.

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

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Qisheng Gao ◽  
Shanshan Wang ◽  
Jianping Ren ◽  
Xin Wen
Keyword(s):  
Quality Of Life ◽  
Rare Diseases ◽  
Physical Functioning ◽  
Psychosocial Health ◽  
Self Report ◽  
School Functioning ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Parent Proxy

Abstract Background It has become 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 a 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 understand 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-report version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0). 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 subdomain scores. Results The total PedsQL scores of Patent ductus arteriosus (PDA), Infantile agranulocytosis, Autoimmune thrombocytopenia (ITP), 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 scores. The household registration place was significantly related to the total score. The most urgent desire of patients was to reduce the overall medical costs. Conclusions This study showed that patients with PDA had the lowest physical functioning score, while patients with ITP scored the lowest in the emotional functioning, social functioning, school functioning, psychosocial health, and total scores. Incentive policies should be further adopted to improve orphan drug availability and reduce the economic burden of rare diseases.

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