Quality of Life Research

, Volume 17, Issue 4, pp 613–626

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

  • 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
Article

DOI: 10.1007/s11136-008-9323-8

Cite this article as:
Marino, B.S., Shera, D., Wernovsky, G. et al. Qual Life Res (2008) 17: 613. doi:10.1007/s11136-008-9323-8

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.

Keywords

Children/adolescentsCongenital heart diseaseQuality of life

Abbreviations

CHAT

Congenital Heart Adolescent and Teenager Questionnaire

CHOP

The Children’s Hospital of Philadelphia

CHW

Children’s Hospital of Wisconsin

HRQOL

Health-related quality of life

IC

Internal consistency

PCQLI

Pediatric Cardiac Quality of Life Inventory

QOL

Quality of life

UCSF

University of California San Francisco

Copyright information

© Springer Science+Business Media B.V. 2008

Authors and Affiliations

  • Bradley S. Marino
    • 1
    • 2
    • 3
  • David Shera
    • 4
  • Gil Wernovsky
    • 3
  • Ryan S. Tomlinson
    • 2
  • Abigail Aguirre
    • 5
  • Maureen Gallagher
    • 3
  • Angela Lee
    • 2
  • Catherine J. Cho
    • 2
  • Whitney Stern
    • 2
  • Lauren Davis
    • 2
  • Elizabeth Tong
    • 6
  • David Teitel
    • 6
  • Kathleen Mussatto
    • 7
  • Nancy Ghanayem
    • 7
    • 8
  • Marie Gleason
    • 3
  • J. William Gaynor
    • 9
  • Jo Wray
    • 10
    • 11
  • Mark A. Helfaer
    • 2
  • Judy A. Shea
    • 5
  1. 1.Department of Pediatrics, Divisions of Cardiology and Critical Care Medicine, Cincinnati Children’s Hospital Medical CenterUniversity of Cincinnati College of MedicineCincinnatiUSA
  2. 2.Department of Anesthesiology and Critical Care, Division of Critical Care Medicine, The Children’s Hospital of PhiladelphiaUniversity of Pennsylvania School of MedicinePhiladelphiaUSA
  3. 3.Department of Pediatrics, Division of Cardiology, The Children’s Hospital of PhiladelphiaUniversity of Pennsylvania School of MedicinePhiladelphiaUSA
  4. 4.Department of Pediatrics, Division of Biostatistics, The Children’s Hospital of PhiladelphiaUniversity of Pennsylvania School of MedicinePhiladelphiaUSA
  5. 5.Department of Medicine, Division of General Internal MedicineUniversity of Pennsylvania School of MedicinePhiladelphiaUSA
  6. 6.Department of Pediatrics, Division of Cardiology, University of California San Francisco Children’s HospitalUniversity of California, San FranciscoSan FranciscoUSA
  7. 7.Herma Heart CenterChildren’s Hospital of WisconsinMilwaukeeUSA
  8. 8.Department of Pediatrics, Division of Critical Care Medicine, Children’s Hospital of WisconsinMedical College of WisconsinMilwaukeeUSA
  9. 9.Department of Surgery, Division of Cardiothoracic Surgery, The Children’s Hospital of PhiladelphiaUniversity of Pennsylvania School of MedicinePhiladelphiaUSA
  10. 10.Royal Brompton and Harefield NHS TrustHarefield HospitalHarefieldUK
  11. 11.Great Ormond Street Hospital for Children NHS TrustLondonUK