scholarly journals Health-related quality of life and physical activity in children with inherited cardiac arrhythmia or inherited cardiomyopathy: the prospective multicentre controlled QUALIMYORYTHM study rationale, design and methods

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Pascal Amedro ◽  
Oscar Werner ◽  
Hamouda Abassi ◽  
Aymeric Boisson ◽  
Luc Souilla ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Cardiac Arrhythmia ◽  
Polymorphic Ventricular Tachycardia ◽  
Health Related Quality ◽  
Inherited Cardiomyopathy ◽  
Related Quality ◽  
Health Related ◽  
Cardiac Disorders

Abstract Background Advances in paediatric cardiology have improved the prognosis of children with inherited cardiac disorders. However, health-related quality of life (QoL) and physical activity have been scarcely analysed in children with inherited cardiac arrhythmia or inherited cardiomyopathy. Moreover, current guidelines on the eligibility of young athletes with inherited cardiac disorders for sports participation mainly rely on expert opinions and remain controversial. Methods The QUALIMYORYTHM trial is a multicentre observational controlled study. The main objective is to compare the QoL of children aged 6 to 17 years old with inherited cardiac arrhythmia (long QT syndrome, Brugada syndrome, catecholaminergic polymorphic ventricular tachycardia, or arrhythmogenic right ventricular dysplasia), or inherited cardiomyopathy (hypertrophic, dilated, or restrictive cardiomyopathy), to that of age and gender-matched healthy subjects. The secondary objective is to assess their QoL according to the disease’s clinical and genetic characteristics, the level of physical activity and motivation for sports, the exercise capacity, and the socio-demographic data. Participants will wear a fitness tracker (ActiGraph GT3X accelerometer) for 2 weeks. A total of 214 children are required to observe a significant difference of 7 ± 15 points in the PedsQL, with a power of 90% and an alpha risk of 5%. Discussion After focusing on the survival in children with inherited cardiac disorders, current research is expanding to patient-reported outcomes and secondary prevention. The QUALIMYORYTHM trial intends to improve the level of evidence for future guidelines on sports eligibility in this population. Trial registration ClinicalTrials.gov Identifier: NCT04712136, registered on January 15th, 2021 (https://clinicaltrials.gov/ct2/show/NCT04712136).

scholarly journals Health-Related Quality of Life and Physical Activity in Children with Inherited Cardiac Arrhythmia or Inherited Cardiomyopathies: The Prospective Multicentre Controlled QUALIMYORYTHM Study Rationale, Design and Methods.

2021 ◽  
Author(s):  
Pascal Amedro ◽  
Oscar Werner ◽  
Hamouda Abassi ◽  
Aymeric Boisson ◽  
Luc Souilla ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Cardiac Arrhythmia ◽  
Polymorphic Ventricular Tachycardia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Cardiac Disorders ◽  
Inherited Cardiomyopathies

Abstract Background: Advances in paediatric cardiology has improved the prognosis of children with inherited cardiac disorders. However, health-related quality of life (QoL) and physical activity have been scarcely analysed in children with inherited cardiac arrhythmia or inherited cardiomyopathies. Moreover, current guidelines on the eligibility of young athletes with inherited cardiac disorders for sports participation mainly rely on expert opinions and remain controversial. Methods: The QUALIMYORYTHM trial is a multicentre observational controlled study. The main objective is to compare the QoL of children aged 6 to 18 years old with inherited cardiac arrhythmia (long QT syndrome, Brugada syndrome, catecholaminergic polymorphic ventricular tachycardia, or arrhythmogenic right ventricular dysplasia), or inherited cardiomyopathies (hypertrophic, dilated, or restrictive cardiomyopathy), to that of age and gender-matched healthy subjects. The secondary objective is to assess their QoL according to the disease’s clinical and genetic characteristics, the level of physical activity and motivation for sports, the exercise capacity, and the socio-demographic data. Participants will wear a fitness tracker (ActiGraph GT3X accelerometer) for 2 weeks. A total of 214 children are required to observe a significant difference of 7 ± 15 points in the PedsQL, with a power of 90% and an alpha risk of 5%. Discussion: After focusing on the survival in children with inherited cardiac disorders, current research is expanding to patient-reported outcomes and secondary prevention. The QUALIMYORYTHM trial intends to improve the level of evidence for future guidelines on sports eligibility in this population. Trial registration: ClinicalTrials.gov Identifier: NCT04712136, registered on January 15th, 2021 (https://clinicaltrials.gov/ct2/show/NCT04712136).

510 A Profile of Physical Performance Variables in an Out-Patient Adult Population with Narcolepsy

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A201-A201
Author(s):  
Ragy Tadrous ◽  
Julie Broderick ◽  
Niamh Murphy ◽  
Lisa Slattery ◽  
Gillian Quinn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Physical Performance ◽  
Symptom Severity ◽  
Health Related Quality ◽  
Cardiopulmonary Fitness ◽  
Performance Variables ◽  
Related Quality ◽  
Health Related

Abstract Introduction Narcolepsy can significantly impact the physical and mental wellbeing of people with narcolepsy, and has been associated with significant reductions in quality of life and physical performance. People with narcolepsy demonstrate many barriers to being physically fit and active, such as sleepiness and social isolation. Despite physical functioning and vitality being the most affected domains of health-related quality of life in this cohort, little is known about how physical performance variables are affected in people with narcolepsy. Methods This cross-sectional study profiled the physical performance of adults with narcolepsy attending the Narcolepsy Centre located in St. James’s Hospital. Participants underwent a physical performance test battery that investigated cardiopulmonary fitness, physical activity, muscle strength and endurance. Furthermore, health-related quality of life (HRQoL), symptom severity and sedentary behaviour was ascertained through self-report questionnaires. Results A total of 23 participants were recruited in this study. The majority of participants were female (n=13, 56.52%) and the mean age was 31.53 (± 13.17) years. Physical performance was generally found to be lower than age-and-gender matched normative values for cardiopulmonary fitness, physical activity and muscle strength and endurance. Participants’ completed 42.20 ± 21.41 minutes of moderate-vigorous physical activity daily as measured by actigraphy. Considerable sedentary behaviour was objectively measured in this sample (10.21 hours). Symptom severity was high as measured by the Epworth Sleepiness Scale and the Narcolepsy Severity Scale, and participants reported reduced quality of life when compared to general population norms (US, UK, France and Norway). Conclusion Markedly reduced physical performance was identified in this sample of people with narcolepsy, irrespective of participant age, gender and BMI. Future research should explore the role of exercise in improving the physical fitness in people with narcolepsy, and the influence of exercise on HRQoL and symptom severity in this cohort. Support (if any) This study was completed as part of Mr Ragy Tadrous’ Master of Science (MSc) degree in Trinity College Dublin. This degree was co-sponsored by the Physiotherapy Department in St. James’s Hospital, Dublin.

scholarly journals Relationship between Sedentary Time, Physical Activity, and Health-Related Quality of Life in Spanish Children

2021 ◽  
Vol 18 (5) ◽  
pp. 2702
Author(s):  
Manuel Ávila-García ◽  
María Esojo-Rivas ◽  
Emilio Villa-González ◽  
Pablo Tercedor ◽  
Francisco Javier Huertas-Delgado
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Sedentary Time ◽  
Vigorous Physical Activity ◽  
Well Being ◽  
Self Esteem ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Higher sedentary time and lower physical activity (PA) are associated with a poor health-related quality of life (HRQoL) in children. The aims of this study were: (1) to analyze the sedentary time, objectively measured PA levels (light, moderate, vigorous, and moderate-to-vigorous physical activity (MVPA)), and HRQoL dimensions (physical well-being, emotional well-being, self-esteem, family, friends, school, and total score) in children; and (2) to examine the association between sedentary time, PA levels, and HRQoL in children separately by sex. A total of 459 children (8.4 ± 0.4 years old, 50.54% males) from 15 schools in Granada (Spain) participated in the study. A tri-axial accelerometer was used to measure PA levels in the children for 7 consecutive days. The Revidierter KINDer Lebensqualitätsfragebogen (KINDL-R) questionnaire was used to determine the children’s HRQoL dimensions. The results showed that males presented more minutes engaged in MVPA than females. Both sedentary time and PA levels were associated with self-esteem and total score (all p < 0.05). In males, moderate and vigorous PA levels were associated with higher HRQoL, whereas light PA was associated with higher HRQoL in females. Future studies should take into account the use of activities with difference intensities in order to increase HRQoL in males and females.

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