Prompted by needs and interests of our Families in ACTION (FACT) Committee, ACTION recently joined forces with a fellow Cardiac Networks United organization, the Cardiac Neurodevelopmental Outcome Collaborative to:
- develop patient and family resources specific to neurodevelopment in pediatric heart failure and VAD patients, and
- better understand current practices among ACTION sites specific to neurodevelopmental care and education.
This cross-network collaboration brought together experts in pediatric psychology, neuropsychology, cardiology, nursing, and more to address this important aspect of care for patients and families.
Resources
Hearts & Minds: Neurodevelopment in Patients with Heart Failure & VADs
“This has been such a meaningful collaboration – an idea (and need!!) identified by parents and caregivers themselves within our ACTION community – brought to fruition through partnership with experts across learning networks, disciplines, and centers. As we continue to focus on promoting the best possible outcomes for our patients with heart failure and/or VAD and their families, we know that neurodevelopment, mental health, and patient/family support will be central to this effort!”
“I was thrilled when ACTION reached out to discuss collaborating with CNOC! We share a goal to optimize outcomes for individuals with pediatric cardiac disease, including heart failure, and it has been a delight to work with ACTION patient/family members and professionals in this effort. We know that increased awareness of neurodevelopmental and mental health risks can lead to earlier intervention and better long-term outcomes – and this starts with providing information to our patients and families in a way that is accessible, supportive, and practical. I would especially like to recognize Dr. Elise Turner, neuropsychologist at Children’s Hospital Colorado, for her leadership of the multidisciplinary group effort to create these patient/family resources. We at CNOC hope that this is the first of many more ACTION + CNOC collaborations to come!”
Disclaimer: The ACTION network is focused on quality improvement efforts such as harmonizing best practice protocols, disseminating them among institutions, and helping centers to improve care practices at the local level. This protocol was developed as a consensus tool for pediatric VAD programs. The information in the protocols are based on center practices, individual opinions, experiences, and, where available, published literature. Centers may choose to adapt this protocol to include in their center-specific protocols with reference to ACTION with the understanding that these are meant as guidelines and not standard of care.
