Patient- and proxy-reported outcomes (PROs) are an important indicator of healthcare quality but are underutilised in paediatric cardiac care. This ACTION study, Patient and parent-reported outcomes in paediatric ventricular assist device support: a multi-center ACTION learning network feasibility and pilot experience, describes a six-center feasibility and pilot experience implementing PROs in the paediatric and young adult ventricular assist device population. Of the thirty-five eligible patients, thirty (85.7%) were enrolled in the PRO programme pilot experience, with clinicians and participating patients and parents reporting positive experiences. Of the participating patients, the most common symptoms reported in the first month post-implant included limitations in activities, dressing change distress, and post-operative pain. After the first month post-implant, poor sleep, dressing change distress, sadness, and fatigue were the most common reported symptoms. For parents, sadness and worry were commonly reported throughout the entirety of the post-implant experience. This multi-center pilot study experience demonstrates initial success and offers important next steps for further and larger-scale research on PRO collection and clinical intervention.
This ACTION study was published in Cardiology in the Young on January 2023. Congratulations to the authors:
- Melissa K. Cousino
- Lindsay J. May
- Lauren Smyth
- Melissa McQueen
- Katherine Thompson
- Tiffany Hunter
- Courtney Ventresco
- Katrina Fields
- Jenna Murray
- Desiree S. Machado
- Muhammad Shezad
- Farhan Zafar
- David N. Rosenthal
- Angela Lorts
- Elizabeth D. Blume
CITATION
Cousino, MK, May, LJ, Smyth, L, et al. Patient and parent-reported outcomes in paediatric ventricular assist device support: a multi-center ACTION learning network feasibility and pilot experience. Cardiol Young(2023). DOI: https://doi.org/10.1017/S1047951122004048.
