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Demonstrating responsiveness of the pediatric cardiac quality of life inventory in children and adolescents undergoing arrhythmia ablation, heart transplantation, and valve surgery

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Abstract

Purpose

Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific pediatric cardiac health-related quality of life (HRQOL) instrument that is reliable, valid, and generalizable. We aim to demonstrate PCQLI responsiveness in children undergoing arrhythmia ablation, heart transplantation, and valve surgery before and after cardiac intervention.

Methods

Pediatric cardiac patients 8–18 years of age from 11 centers undergoing arrhythmia ablation, heart transplantation, or valve surgery were enrolled. Patient and parent-proxy PCQLI Total, Disease Impact and Psychosocial Impact subscale scores were assessed pre- and 3–12 months follow-up. Patient clinical status was assessed by a clinician post-procedure and dichotomized into markedly improved/improved and no change/worse/much worse. Paired t-tests examined change over time.

Results

We included 195 patient/parent-proxies: 12.6 ± 3.0 years of age; median follow-up time 6.7 (IQR = 5.3–8.2) months; procedural groups − 79 (41%) ablation, 28 (14%) heart transplantation, 88 (45%) valve surgery; clinical status − 164 (84%) markedly improved/improved, 31 (16%) no change/worse/much worse. PCQLI patient and parent-proxies Total scores increased (p ≤ 0.013) in each intervention group. All PCQLI scores were higher (p < 0.001) in the markedly improved/improved group and there were no clinically significant differences in the PCQLI scores in the no difference/worse/much worse group.

Conclusion

The PCQLI is responsive in the pediatric cardiac population. Patients with improved clinical status and their parent-proxies reported increased HRQOL after the procedure. Patients with no improvement in clinical status and their parent-proxies reported no change in HRQOL. PCQLI may be used as a patient-reported outcome measure for longitudinal follow-up and interventional trials to assess HRQOL impact from patient and parent-proxy perspectives.

Plain English Summary

It is important to have quality of life (QOL) measures that are sensitive to change in QOL before and after procedures and to be sensitive to change over time. The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a QOL measure specifically developed for children with cardiac disease. This study assessed the responsiveness of the PCQLI to detect change in QOL over time. QOL in Children and adolescents who were being treated for abnormal heart rhythms, heart transplantation, and aortic, pulmonary, or mitral valve surgery were assessed before and after their procedure. Children and adolescents with improved clinical status post-procedure, and their parents, reported better QOL after the procedure. Patients with no improvement from a cardiac standpoint and their parents reported no change in QOL after their procedure. The PCQLI may be used to assess QOL before and after cardiac procedures or medical treatment and follow QOL over time.

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Notes

  1. No change/worse/much worse category was collapsed due to few cases in the “Worse” (n = 3) and “Much Worse (n = 1) categories.

Abbreviations

CHD:

Congenital heart disease

HRQOL:

Health–related quality of life

PCQLI:

Pediatric cardiac quality of life inventory

RV to–PA:

Right ventricle to pulmonary artery

QOL:

Quality of life

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Funding

This work was supported by: NICHD K23 Grant (5-K23-HD048637-05), American Heart Association Grant (0465467), CHOP Institutional Development Fund, and CCHMC Research Foundation (31-554000-355514. The funders had no role in the design or conduct of the study.

Author information

Authors and Affiliations

  1. Divisions of a Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children’s Hospital of Chicago, 225 East Chicago Avenue, Box 21, Chicago, IL, 60611-2991, USA

    Amy M. O’Connor

  2. Critical Care Medicine, Department of Pediatrics, Ann & Robert H. Lurie Children’s Hospital of Chicago, 225 East Chicago Avenue, Box 21, Chicago, IL, 60611-2991, USA

    Amy M. O’Connor

  3. Divisions of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Amy Cassedy

  4. Division of Cardiology, Department of Pediatrics, Phoenix Children’s Hospital, Phoenix, AZ, USA

    Mitchell Cohen

  5. Division of Cardiology, Department of Pediatrics, Inova Children’s Hospital, Falls Church, VA, USA

    Mitchell Cohen

  6. Division of Cardiology, Department of Pediatrics, C.S. Mott Children’s Hospital, Ann Arbor, MI, USA

    Caren Goldberg

  7. Division of Cardiology, Department of Pediatrics, Mount Sinai Kravis Children’s Hospital, New York, NY, USA

    Jacqueline Lamour

  8. Division of Cardiology, Department of Pediatrics, Children’s Healthcare of Atlanta, Atlanta, Georgia

    William Mahle

  9. Division of Cardiology, Department of Pediatrics, University of Texas Southwestern Medical Center, Dallas, TX, USA

    Lynn Mahony

  10. Division of Cardiology, Department of Pediatrics, Children’s Hospital of Wisconsin, Milwaukee, WI, USA

    Kathleen Mussatto

  11. Division of Cardiology, Department of Pediatrics, Boston Children’s Hospital, Boston, MA, USA

    Jane Newburger

  12. Division of Cardiology, Department of Pediatrics, New York-Presbyterian Morgan Stanley Children’s Hospital, New York, NY, USA

    Marc E. Richmond

  13. Division of Cardiology, Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Maully Shah & Gil Wernovsky

  14. Division of Cardiology, Department of Pediatrics, Children’s National, Washington, D.C, USA

    Gil Wernovsky

  15. Department of Pediatric Cardiology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK

    Jo Wray

  16. Department of Pediatric Cardiology, Pediatric Institute, Cleveland Clinic Children’s, Cleveland, OH, USA

    Bradley S. Marino

Authors
  1. Amy M. O’Connor
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  2. Amy Cassedy
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  3. Mitchell Cohen
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  4. Caren Goldberg
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  7. Lynn Mahony
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  11. Maully Shah
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  14. Bradley S. Marino
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by all authors. The first draft of the manuscript was written by Amy O’Connor, Bradley S. Marino, and Amy Cassedy and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Amy M. O’Connor.

Ethics declarations

Ethical approval

Ann & Robert H. Lurie Children’s Hospital of Chicago was the lead site for this multi-center study. IRB approval was obtained Ann & Robert H. Lurie Children’s Hospital of Chicago (IRB#: 2009–13896). The Institutional Review Boards and Ethics Committees of all other participating institutions approved the study, and parents and patients gave informed consent and assent, as applicable.

Consent to participate

Informed consent and assent, as applicable, was obtained from all individual participants included in the study.”

Written informed consent was obtained from the parents, as applicable.

Consent for publication

This manuscript does not contain any individual person’s data in any form (including any individual details, images, or videos).

Competing interests

Dr. Marino is the creator of the PCQLI. The PCQLI is available for both clinical and research utilization for free. There are no other conflicts of interest to disclose.

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O’Connor, A.M., Cassedy, A., Cohen, M. et al. Demonstrating responsiveness of the pediatric cardiac quality of life inventory in children and adolescents undergoing arrhythmia ablation, heart transplantation, and valve surgery. Qual Life Res (2024). https://doi.org/10.1007/s11136-024-03708-x

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