Richard J Czosek1, Amy E Cassedy2, Jo Wray3, Gil Wernovsky4, Jane W Newburger5, Kathleen A Mussatto6, Lynn Mahony7, Ronn E Tanel8, Mitchell I Cohen9, Rodney C Franklin10, Kate L Brown3, David Rosenthal11, Dennis Drotar12, Bradley S Marino12. 1. The Heart Institute, Department of Pediatrics, Division of Pediatric Cardiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio. Electronic address: Richard.czosek@cchmc.org. 2. Department of Biostatistics, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio. 3. Critical Care and Cardiorespiratory Division, Great Ormond Street Hospital for Children, NHS Foundation Trust, London, United Kingdom. 4. Miami Children's Hospital, Miami, Florida. 5. Department of Cardiology, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts. 6. Herma Heart Center, Children's Hospital of Wisconsin, Milwaukee Wisconsin. 7. Department of Pediatrics, University of Texas Southwestern Medical School, Dallas, Texas. 8. Division of Pediatric Cardiology, UCSF Benioff Children's Hospital, and Department of Pediatrics, UCSF School of Medicine, San Francisco, California. 9. Phoenix Children's Hospital and Arizona Pediatric Cardiology Consultants/Pediatrix, University of Arizona School of Medicine-Phoenix, Phoenix, Arizona. 10. Department of Paediatric Cardiology, Royal Brompton and Harefield NHS Foundation Trust, London, United Kingdom. 11. Department of Pediatrics, Stanford University and Lucile Packard Children's Hospital, Palo Alto, California. 12. The Heart Institute, Department of Pediatrics, Division of Pediatric Cardiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Abstract
BACKGROUND: Treatment of electrophysiologic (EP) disease in pediatric patients has improved; however, the effects on quality of life (QOL) are unknown. OBJECTIVE: The purpose of this study was to compare QOL within EP disease groups and to other congenital heart diseases, to evaluate the effects of cardiac rhythm devices on QOL, and to identify drivers of QOL in EP disease. METHODS: Cross-sectional study of patient/parent proxy-reported Pediatric Cardiac Quality of Life Inventory scores (Total, Disease Impact, Psychosocial Impact) in subjects aged 8 to 18 years from 11 centers with congenital complete heart block (CCHB), ventricular tachycardia (VT), supraventricular tachycardia (SVT), and long QT syndrome (LQTS). QOL was compared between EP disease groups and congenital heart disease groups [bicuspid aortic valve (BAV), tetralogy of Fallot (TOF), and Fontan]. General linear modeling was used to perform group comparisons and to identify predictors of QOL variation. RESULTS: Among 288 patient-parent pairs, mean age was 12.8 ± 3.0 years. CCHB (μ = 83) showed higher patient Total QOL than other EP disease cohorts (P ≤ .02; LQTS μ = 73; SVT μ = 74). SVT (μ = 75) and LQTS (μ = 75) had lower patient Total scores than BAV (μ = 81; P ≤ .008). Patient/parent-proxy QOL scores for all EP disease groups were not different than TOF and higher than Fontan. The presence of a cardiac rhythm device was associated with lower QOL scores in LQTS (μ = 66 vs μ = 76; P < .01). Predictors of lower patient/parent-proxy QOL included EP disease type (P ≤ .03), increased medical care utilization (P ≤ .04), and no parental college degree (P ≤ .001). CONCLUSION: Given the significant variation in QOL in EP disease type, stratification by EP disease type and increased medical care utilization may allow for targeted interventions to improve QOL.
BACKGROUND: Treatment of electrophysiologic (EP) disease in pediatric patients has improved; however, the effects on quality of life (QOL) are unknown. OBJECTIVE: The purpose of this study was to compare QOL within EP disease groups and to other congenital heart diseases, to evaluate the effects of cardiac rhythm devices on QOL, and to identify drivers of QOL in EP disease. METHODS: Cross-sectional study of patient/parent proxy-reported Pediatric Cardiac Quality of Life Inventory scores (Total, Disease Impact, Psychosocial Impact) in subjects aged 8 to 18 years from 11 centers with congenital complete heart block (CCHB), ventricular tachycardia (VT), supraventricular tachycardia (SVT), and long QT syndrome (LQTS). QOL was compared between EP disease groups and congenital heart disease groups [bicuspid aortic valve (BAV), tetralogy of Fallot (TOF), and Fontan]. General linear modeling was used to perform group comparisons and to identify predictors of QOL variation. RESULTS: Among 288 patient-parent pairs, mean age was 12.8 ± 3.0 years. CCHB (μ = 83) showed higher patient Total QOL than other EP disease cohorts (P ≤ .02; LQTS μ = 73; SVT μ = 74). SVT (μ = 75) and LQTS (μ = 75) had lower patient Total scores than BAV (μ = 81; P ≤ .008). Patient/parent-proxy QOL scores for all EP disease groups were not different than TOF and higher than Fontan. The presence of a cardiac rhythm device was associated with lower QOL scores in LQTS (μ = 66 vs μ = 76; P < .01). Predictors of lower patient/parent-proxy QOL included EP disease type (P ≤ .03), increased medical care utilization (P ≤ .04), and no parental college degree (P ≤ .001). CONCLUSION: Given the significant variation in QOL in EP disease type, stratification by EP disease type and increased medical care utilization may allow for targeted interventions to improve QOL.
Authors: Helene Werner; Phaedra Lehmann; Alina Rüegg; Silvia Hilfiker; Karin Steinmann; Christian Balmer Journal: Health Qual Life Outcomes Date: 2019-10-11 Impact factor: 3.186
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Authors: Kate H Marshall; Yves D'Udekem; Gary F Sholler; Alexander R Opotowsky; Daniel S J Costa; Louise Sharpe; David S Celermajer; David S Winlaw; Jane W Newburger; Nadine A Kasparian Journal: J Am Heart Assoc Date: 2020-03-16 Impact factor: 5.501