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05-07-2024

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

Auteurs: Amy M. O’Connor, Amy Cassedy, Mitchell Cohen, Caren Goldberg, Jacqueline Lamour, William Mahle, Lynn Mahony, Kathleen Mussatto, Jane Newburger, Marc E. Richmond, Maully Shah, Kiona Allen, Brian Wolfe, Gil Wernovsky, Jo Wray, Bradley S. Marino

Gepubliceerd in: Quality of Life Research | Uitgave 9/2024

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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.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Voetnoten
1
No change/worse/much worse category was collapsed due to few cases in the “Worse” (n = 3) and “Much Worse (n = 1) categories.
 
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Metagegevens
Titel
Demonstrating responsiveness of the pediatric cardiac quality of life inventory in children and adolescents undergoing arrhythmia ablation, heart transplantation, and valve surgery
Auteurs
Amy M. O’Connor
Amy Cassedy
Mitchell Cohen
Caren Goldberg
Jacqueline Lamour
William Mahle
Lynn Mahony
Kathleen Mussatto
Jane Newburger
Marc E. Richmond
Maully Shah
Kiona Allen
Brian Wolfe
Gil Wernovsky
Jo Wray
Bradley S. Marino
Publicatiedatum
05-07-2024
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 9/2024
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-024-03708-x

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