OBJECTIVE: Mortality after surgery for congenital heart disease (CHD) has decreased. Quality of life (QOL) assessment in survivors has become increasingly important. The purpose of this project was to create the Pediatric Cardiac Quality of Life Inventory (PCQLI). METHODS: Items were generated through nominal groups of patients, parents, and providers. The pilot PCQLI was completed by children (age 8-12), adolescents (age 13-18), and their parents at three cardiology clinics. Item reduction was performed through analysis of items, principal components, internal consistency (IC), and patterns of correlation. RESULTS: A total of 655 patient-parent pairs completed the pilot PCQLI. Principal components identified included: impact of disease (ID); psychosocial impact (PI); and emotional environment (EE). After item reduction ID and PI had excellent IC (ID = 0.88-0.91; PI = 0.78-0.85) and correlated highly with each other (0.81-0.90) and with the total score (TS) (ID = 0.95-0.96; PI = 0.87-0.93). EE was not correlated with ID, PI, or TS and was removed from the final forms. Two-ventricle CHD patients had a higher TS than single-ventricle CHD patients across all forms (P < 0.001). CONCLUSION: The PCQLI has patient and parent-proxy forms, has wide age range, and discriminates between CHD subgroups. The ID and PI subscales of the PCQLI have excellent IC and correlate well with each other and the TS.
OBJECTIVE: Mortality after surgery for congenital heart disease (CHD) has decreased. Quality of life (QOL) assessment in survivors has become increasingly important. The purpose of this project was to create the Pediatric Cardiac Quality of Life Inventory (PCQLI). METHODS: Items were generated through nominal groups of patients, parents, and providers. The pilot PCQLI was completed by children (age 8-12), adolescents (age 13-18), and their parents at three cardiology clinics. Item reduction was performed through analysis of items, principal components, internal consistency (IC), and patterns of correlation. RESULTS: A total of 655 patient-parent pairs completed the pilot PCQLI. Principal components identified included: impact of disease (ID); psychosocial impact (PI); and emotional environment (EE). After item reduction ID and PI had excellent IC (ID = 0.88-0.91; PI = 0.78-0.85) and correlated highly with each other (0.81-0.90) and with the total score (TS) (ID = 0.95-0.96; PI = 0.87-0.93). EE was not correlated with ID, PI, or TS and was removed from the final forms. Two-ventricle CHD patients had a higher TS than single-ventricle CHD patients across all forms (P < 0.001). CONCLUSION: The PCQLI has patient and parent-proxy forms, has wide age range, and discriminates between CHD subgroups. The ID and PI subscales of the PCQLI have excellent IC and correlate well with each other and the TS.
Authors: David Wypij; Jane W Newburger; Leonard A Rappaport; Adre J duPlessis; Richard A Jonas; Gil Wernovsky; Ming Lin; David C Bellinger Journal: J Thorac Cardiovasc Surg Date: 2003-11 Impact factor: 5.209
Authors: Susan Macran; Yvonne Birks; Jonathan Parsons; Patricia Sloper; Geoff Hardman; Paul Kind; Carin van Doorn; David Thompson; Robert Lewin Journal: Cardiol Young Date: 2006-04 Impact factor: 1.093
Authors: Erin L Culbert; David A Ashburn; Geraldine Cullen-Dean; Jay A Joseph; William G Williams; Eugene H Blackstone; Brian W McCrindle Journal: Circulation Date: 2003-08-04 Impact factor: 29.690
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: Bradley S Marino; Dennis Drotar; Amy Cassedy; Richard Davis; Ryan S Tomlinson; Katelyn Mellion; Kathleen Mussatto; Lynn Mahony; Jane W Newburger; Elizabeth Tong; Mitchell I Cohen; Mark A Helfaer; Anne E Kazak; Jo Wray; Gil Wernovsky; Judy A Shea; Richard Ittenbach Journal: Qual Life Res Date: 2010-12-25 Impact factor: 4.147
Authors: Sarah B Mulkey; Christopher J Swearingen; Maria S Melguizo; Rachel N Reeves; Jacob A Rowell; Neal Gibson; Greg Holland; Adnan T Bhutta; Jeffrey R Kaiser Journal: Pediatr Cardiol Date: 2013-09-03 Impact factor: 1.655
Authors: Michael L O'Byrne; Laura Mercer-Rosa; Huaqing Zhao; Xuemei Zhang; Wei Yang; Amy Cassedy; Mark A Fogel; Jack Rychik; Ronn E Tanel; Bradley S Marino; Stephen Paridon; Elizabeth Goldmuntz Journal: Am Heart J Date: 2013-07-16 Impact factor: 4.749
Authors: Jeffrey A Feinstein; D Woodrow Benson; Anne M Dubin; Meryl S Cohen; Dawn M Maxey; William T Mahle; Elfriede Pahl; Juan Villafañe; Ami B Bhatt; Lynn F Peng; Beth Ann Johnson; Alison L Marsden; Curt J Daniels; Nancy A Rudd; Christopher A Caldarone; Kathleen A Mussatto; David L Morales; D Dunbar Ivy; J William Gaynor; James S Tweddell; Barbara J Deal; Anke K Furck; Geoffrey L Rosenthal; Richard G Ohye; Nancy S Ghanayem; John P Cheatham; Wayne Tworetzky; Gerard R Martin Journal: J Am Coll Cardiol Date: 2012-01-03 Impact factor: 24.094
Authors: Gonzalo Garcia Guerra; Ari R Joffe; Charlene M T Robertson; Joseph Atallah; Gwen Alton; Reg S Sauve; Irina A Dinu; David B Ross; Ivan M Rebeyka Journal: Pediatr Cardiol Date: 2013-10-26 Impact factor: 1.655
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: M Niemitz; D C M Seitz; M Oebels; D Schranz; H Hövels-Gürich; M Hofbeck; R Kaulitz; C Galm; F Berger; N Nagdymann; B Stiller; T Borth-Bruhns; I Konzag; C Balmer; L Goldbeck Journal: Qual Life Res Date: 2013-04-22 Impact factor: 4.147