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Multicenter Study
. 2023 Nov;33(11):2258-2266.
doi: 10.1017/S1047951122004048. Epub 2023 Jan 19.

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

Melissa K Cousino  1 , Lindsay J May  2 , Lauren Smyth  3 , Melissa McQueen  4 , Katherine Thompson  2 , Tiffany Hunter  1 , Courtney Ventresco  5 , Katrina Fields  3 , Jenna Murray  6 , Desiree S Machado  7 , Muhammad Shezad  3 , Farhan Zafar  3 , David N Rosenthal  6 , Angela Lorts  3 , Elizabeth D Blume  5
Affiliations
Multicenter Study

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

Melissa K Cousino et al. Cardiol Young. 2023 Nov.

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.

Keywords: Patient-reported outcomes; heart failure; ventricular assist device.

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Conflict of interest statement

Conflicts of Interest

None

Figures

Figure 1a.
Figure 1a.
Frequency and severity of patient symptoms as reported by their primary caregiver in the 0–30 days post-implant. Respondents N= 12, total responses N = 23.
Figure 1b.
Figure 1b.
Frequency and severity of patient symptoms as reported by their primary caregiver in the 31–100 days post-implant. Respondents N= 14, total responses N = 23.
Figure 2a.
Figure 2a.
Frequency and severity of family concerns as reported by the primary caregiver in the 0–30 days post-implant. Respondents N= 12, total responses N = 23.
Figure 2b.
Figure 2b.
Frequency and severity of family concerns as reported by the primary caregiver in the 31–100 days post-implant. Respondents N= 14, total responses N = 23.
Figure 3.
Figure 3.
Visual analog scale (VAS) obtained by self-report (a) and parent proxy report (b) for the cohort. Selfreport respondents N = 6, total responses N = 6. Parent proxy respondents N = 15, total responses N = 30.
Figure 4.
Figure 4.
Median PROMIS-25 Parent Proxy T-Scores across time.
See this image and copyright information in PMC

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