Can a home-based cardiac physical activity program improve and sustain quality of life and exercise capacity in children with Fontan circulation?. (September 2018)

• Record Type: Journal Article
• Authors: Jacobsen, Roni; Danduran, Michael; Mussatto, Kathleen; Hill, Garick D.; Ginde, Salil
• Is Part Of: Progress in pediatric cardiology. Volume 50(2018)
• Page Start: 12
• Page End: 16
• Publication Date: 2018-09
• Subjects: Congenital Heart Disease, CHD -- Fontan -- Exercise -- Physical activity -- Rehabilitation -- Quality of life; Pediatric cardiology -- Periodicals; Cardiovascular Diseases -- Periodicals; Infant; Child; Cardiologie pédiatrique -- Périodiques; 618.9212005
• DOI: 10.1016/j.ppedcard.2018.06.003
• Languages: English
• ISSNs: 1058-9813

Abstract

Abstract: Objective: Fontan survivors report reduced health-related quality of life (HRQOL) and have decreased exercise tolerance compared to healthy peers. We recently demonstrated that a 12-week home-based physical activity program was safe, feasible, and improved parent proxy-reported HRQOL and objective measures of exercise capacity in patients with Fontan circulation. We sought to determine if these improvements in HRQOL and exercise capacity are sustained at 6-month follow-up. Design: Patients, 8–12 years old, with Fontan circulation that completed a 12-week moderate-to-vigorous intensity home-based physical activity program were invited to attend a 6-month follow-up session to complete objective assessments of HRQOL and exercise capacity. HRQOL was measured with validated questionnaires. The 20-meter Shuttle Run (PACER Test) was used to measure exercise capacity. Results: Of the 13 patients who completed the original 12-week physical activity program, 11 (85%) attended the 6-month follow-up. There were no adverse events during the follow-up period. Improvements in parent proxy-report for HRQOL at completion of the 12-week program were sustained at 6-month follow-up. Patients reported a significant decrease in HRQOL assessed by PedsQL at 6-month follow-up. However, there was a non-significant trend of improvement in patient PCQLI total and psychosocial impact scores at completion of the 12-week program, which was sustained at 6-month follow-up. The significant improvements in objective measures of exercise capacity seen from baseline to completion of the 12-week program were sustained at 6-month follow-up. Conclusion: Improvements in parent-proxy report HRQOL and objective measures of exercise capacity after completion of a home-based 12-week physical activity program were sustained at 6-month follow-up. Despite improvements in exercise capacity, patients did not report improved HRQOL. A larger, controlled study of this home-based physical activity program is needed to assess the impact of physical activity and improved exercise capacity on HRQOL in children with Fontan circulation. Highlights: Patients demonstrated sustained improvement in objective measures of exercise capacity 6 months following completion of our innovative 12-week home-based physical activity program. Improvements in parent-proxy reports of patient's HRQOL and exercise capacity following a 12-week home-based moderate-to-vigorous physical activity program are sustained at 6-month follow-up. Patients reported a decline in all domains of HRQOL, with exception of social functioning, from baseline and completion of the 12-week program to 6-month follow-up. However, the PCQLI total and psychosocial impact scores did not reflect this same decline, which is a more disease-specific tool. Our study unveiled the complexities associated with assessing the effect of such a physical activity program on HRQOL in this patient population. A larger, controlled study of a multidisciplinary home-based structured, physical activity program is needed to assess the impact of increased physical activity on HRQOL and exercise capacity in children with Fontan circulation.