OBJECTIVES: Children with congenital heart disease may experience significant psychosocial morbidity related to impaired quality of life (QOL). The aim of this study was to evaluate the clinical utility of health-related QOL assessment in a pediatric cardiology outpatient clinic. DESIGN: The Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales were completed by a convenience sample of 176 patients, aged 8-18 years, being seen in a pediatric cardiology clinic. Three cardiologists enrolled in this study reviewed the completed PedsQL during the clinic visit and recorded their responses to items reported to be a problem "Often" or "Almost Always." This utilization of the instrument was compared to standardized scoring and the practicality and perceived usefulness of the practice was evaluated by physician interview. RESULTS: PedsQL responses showed 38% of patients reporting significant (Often or Almost Always) problems on at least one domain (19% Physical Functioning, 18.2% Emotional Functioning, 11.4% Social Functioning, and 22.3% School Functioning problems). Using standardized scoring, the prevalence of scores below the cutoff score for clinically significant impaired QOL in each domain ranged from 10% to 20%, with agreement between scoring methods ranging from 89% to 93%, sensitivity 68% to 86%, and specificity 89% to 97%. Cardiologists reported interventions in 30.1% of patients. They found that the PedsQL was easy to use, did not interfere with clinic operations, required minimal time (1-5 minutes), and provided information that had an important impact on their practice in some patients. CONCLUSIONS: This study demonstrates the clinical utility of health-related QOL assessment using the PedsQL in a pediatric cardiology outpatient setting. Identification of significant impairments in QOL can impact clinical decision making and may change psychosocial outcomes in children with congenital heart disease.
OBJECTIVES:Children with congenital heart disease may experience significant psychosocial morbidity related to impaired quality of life (QOL). The aim of this study was to evaluate the clinical utility of health-related QOL assessment in a pediatric cardiology outpatient clinic. DESIGN: The Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales were completed by a convenience sample of 176 patients, aged 8-18 years, being seen in a pediatric cardiology clinic. Three cardiologists enrolled in this study reviewed the completed PedsQL during the clinic visit and recorded their responses to items reported to be a problem "Often" or "Almost Always." This utilization of the instrument was compared to standardized scoring and the practicality and perceived usefulness of the practice was evaluated by physician interview. RESULTS: PedsQL responses showed 38% of patients reporting significant (Often or Almost Always) problems on at least one domain (19% Physical Functioning, 18.2% Emotional Functioning, 11.4% Social Functioning, and 22.3% School Functioning problems). Using standardized scoring, the prevalence of scores below the cutoff score for clinically significant impaired QOL in each domain ranged from 10% to 20%, with agreement between scoring methods ranging from 89% to 93%, sensitivity 68% to 86%, and specificity 89% to 97%. Cardiologists reported interventions in 30.1% of patients. They found that the PedsQL was easy to use, did not interfere with clinic operations, required minimal time (1-5 minutes), and provided information that had an important impact on their practice in some patients. CONCLUSIONS: This study demonstrates the clinical utility of health-related QOL assessment using the PedsQL in a pediatric cardiology outpatient setting. Identification of significant impairments in QOL can impact clinical decision making and may change psychosocial outcomes in children with congenital heart disease.
Authors: John M Costello; Kathleen Mussatto; Amy Cassedy; Jo Wray; Lynn Mahony; Sarah A Teele; Kate L Brown; Rodney C Franklin; Gil Wernovsky; Bradley S Marino Journal: J Pediatr Date: 2015-03 Impact factor: 4.406
Authors: Lynn A Sleeper; Jeffrey A Towbin; Steven D Colan; Daphne Hsu; Endel J Orav; Matthew S Lemler; Sarah Clunie; Jane Messere; Darlene Fountain; Tracie L Miller; James D Wilkinson; Steven E Lipshultz Journal: J Pediatr Date: 2015-12-22 Impact factor: 4.406
Authors: Ashley E Neal; Christian Stopp; David Wypij; David C Bellinger; Carolyn Dunbar-Masterson; David R DeMaso; Jane W Newburger Journal: J Pediatr Date: 2014-10-28 Impact factor: 4.406
Authors: Sarah Jane Schwarzenberg; Simon C Ling; Yona Keich Cloonan; Hsing-Hua S Lin; Donna M Evon; Karen F Murray; Norberto Rodriguez-Baez; Philip Rosenthal; Jeffrey Teckman; Kathleen B Schwarz Journal: J Pediatr Gastroenterol Nutr Date: 2017-05 Impact factor: 2.839
Authors: Victoria K Robson; Christian Stopp; David Wypij; Carolyn Dunbar-Masterson; David C Bellinger; David R DeMaso; Leonard A Rappaport; Jane W Newburger Journal: J Pediatr Date: 2018-09-28 Impact factor: 4.406
Authors: Melanie R Friess; Bradley S Marino; Amy Cassedy; Ivan Wilmot; John L Jefferies; Angela Lorts Journal: Pediatr Cardiol Date: 2014-10-07 Impact factor: 1.655