Faculty Collaboration Database

The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease. Qual Life Res 2008 May;17(4):613-26

Date

03/19/2008

Pubmed ID

18347927

DOI

10.1007/s11136-008-9323-8

Scopus ID

2-s2.0-43049179995 (requires institutional sign-in at Scopus site)   101 Citations

Abstract

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.

Author List

Marino BS, Shera D, Wernovsky G, Tomlinson RS, Aguirre A, Gallagher M, Lee A, Cho CJ, Stern W, Davis L, Tong E, Teitel D, Mussatto K, Ghanayem N, Gleason M, Gaynor JW, Wray J, Helfaer MA, Shea JA

Author

Kathleen Mussatto Ph.D. Associate Professor in the School of Nursing department at Milwaukee School of Engineering

MESH terms used to index this publication - Major topics in bold

Adaptation, Psychological
Adolescent
Cardiac Care Facilities
Child
Child Welfare
Databases as Topic
Feasibility Studies
Female
Heart Diseases
Humans
Male
Pilot Projects
Psychometrics
Quality of Life