The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease.
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).


CONCLUSIONS
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.
Marino
Bradley S
BS
Department of Pediatrics, Divisions of Cardiology and Critical Care Medicine, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH 45229, USA. bradley.marino@cchmc.org
Shera
David
D
Wernovsky
Gil
G
Tomlinson
Ryan S
RS
Aguirre
Abigail
A
Gallagher
Maureen
M
Lee
Angela
A
Cho
Catherine J
CJ
Stern
Whitney
W
Davis
Lauren
L
Tong
Elizabeth
E
Teitel
David
D
Mussatto
Kathleen
K
Ghanayem
Nancy
N
Gleason
Marie
M
Gaynor
J William
JW
Wray
Jo
J
Helfaer
Mark A
MA
Shea
Judy A
JA
D000223:Adaptation, Psychological; D000293:Adolescent; D002300:Cardiac Care Facilities; D002648:Child; D002669:Child Welfare; D019992:Databases as Topic; D005240:Feasibility Studies; D005260:Female; D006331:Heart Diseases / Q000523:psychology*; D006801:Humans; D008297:Male; D010865:Pilot Projects; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology