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01-05-2008

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

Auteurs: Bradley S. Marino, David Shera, Gil Wernovsky, Ryan S. Tomlinson, Abigail Aguirre, Maureen Gallagher, Angela Lee, Catherine J. Cho, Whitney Stern, Lauren Davis, Elizabeth Tong, David Teitel, Kathleen Mussatto, Nancy Ghanayem, Marie Gleason, J. William Gaynor, Jo Wray, Mark A. Helfaer, Judy A. Shea

Gepubliceerd in: Quality of Life Research | Uitgave 4/2008

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.

vorige artikel Psychometric evaluation of the Taiwanese version of the Kiddo-KINDL® generic children’s health-related quality of life instrument

volgende artikel Identifying response shift statistically at the individual level

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Titel: The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease
Auteurs: Bradley S. Marino
David Shera
Gil Wernovsky
Ryan S. Tomlinson
Abigail Aguirre
Maureen Gallagher
Angela Lee
Catherine J. Cho
Whitney Stern
Lauren Davis
Elizabeth Tong
David Teitel
Kathleen Mussatto
Nancy Ghanayem
Marie Gleason
J. William Gaynor
Jo Wray
Mark A. Helfaer
Judy A. Shea
Publicatiedatum: 01-05-2008
Uitgeverij: Springer Netherlands
Gepubliceerd in: Quality of Life Research / Uitgave 4/2008
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-008-9323-8

Bohn Stafleu van Loghum

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Abstract

Objective

Methods

Results

Conclusion

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