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Patient and parent-reported outcomes in paediatric ventricular assist device support: a multi-center ACTION learning network feasibility and pilot experience

Published online by Cambridge University Press:  19 January 2023

Melissa K. Cousino
Affiliation:
Department of Pediatrics, University of Michigan, C.S. Mott Children’s Hospital, Ann Arbor, MI, USA
Lindsay J. May*
Affiliation:
Department of Pediatrics, Primary Children’s Hospital, Salt Lake City, UT, USA
Lauren Smyth
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Melissa McQueen
Affiliation:
Phoenix Children’s Hospital, Phoenix, AZ, USA
Katherine Thompson
Affiliation:
Department of Pediatrics, Primary Children’s Hospital, Salt Lake City, UT, USA
Tiffany Hunter
Affiliation:
Department of Pediatrics, University of Michigan, C.S. Mott Children’s Hospital, Ann Arbor, MI, USA
Courtney Ventresco
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Katrina Fields
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Jenna Murray
Affiliation:
Department of Pediatrics, Stanford University, Palo Alto, CA, USA
Desiree S. Machado
Affiliation:
Department of Pediatric Cardiac Critical Care, Congenital Heart Center, University of Florida, Gainesville, FL, USA
Muhammad Shezad
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Farhan Zafar
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
David N. Rosenthal
Affiliation:
Department of Pediatrics, Stanford University, Palo Alto, CA, USA
Angela Lorts
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Elizabeth D. Blume
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
*
Author for correspondence: Dr L. J. May, Department of Pediatrics, Primary Children’s Hospital, 100 N Mario Capecchi Drive, Salt Lake City, UT 84113, USA. Tel: 801-213-7613; Fax: 801-213-7778. E-mail: Lindsay.may@hsc.utah.edu

Abstract

Background:

Patient- and proxy-reported outcomes (PROs) are an important indicator of healthcare quality and can be used to inform treatment. Despite the widescale use of PROs in adult cardiology, they are underutilised in paediatric cardiac care. This study describes a six-center feasibility and pilot experience implementing PROs in the paediatric and young adult ventricular assist device population.

Methods:

The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) is a collaborative learning network comprised of 55 centres focused on improving clinical outcomes and the patient/family experience for children with heart failure and those supported by ventricular assist devices. The development of ACTION’s PRO programme via engagement with patient and parent stakeholders is described. Pilot feasibility, patient/parent and clinician feedback, and initial PRO findings of patients and families receiving paediatric ventricular assist support across six centres are detailed.

Results:

Thirty of the thirty-five eligible patients (85.7%) were enrolled in the PRO programme during the pilot study period. Clinicians and participating patients/parents reported positive experiences with the PRO pilot programme. The most common symptoms reported by patients/parents in the first month post-implant period included limitations in activities, dressing change distress, and post-operative pain. Poor sleep, dressing change distress, sadness, and fatigue were the most common symptoms endorsed >30 days post-implant. Parental sadness and worry were notable throughout the entirety of the post-implant experience.

Conclusions:

This multi-center ACTION learning network-based PRO programme demonstrated initial success in this six-center pilot study experience and yields important next steps for larger-scale PRO collection, research, and clinical intervention.

Type
Original Article
Copyright
© The Author(s), 2023. Published by Cambridge University Press

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Footnotes

Melissa K. Cousino and Lindsay J. May contributed equally to the manuscript.

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