Co-Chair: Stephany Cox PhD
Co-Chair: Renee Sananes PhD
The Innovative Approaches to Outpatient Neurodevelopmental Care SIG was formed by several of the original members of CNOC’s Telehealth Task Force (TTF). The TTF was formed in the Summer of 2020 in response to the COVID-19 pandemic to provide rapid guidance on best practices for remote neurodevelopmental screening, evaluation, and care of individuals with pediatric and congenital heart disease. This task force was highly productive, generating guidelines for CNOC clinicians and peer-reviewed publications.
As in-person clinical care largely resumed in 2022, our group shifted focus to explore how we might harness lessons learned during the pandemic to improve and innovate cardiac outpatient neurodevelopmental (ND) care. We soon realized the benefits of expanding the group to include input from a wider range of specialties and felt this would be best accomplished through a SIG.
- Expand our SIG to have representation across disciplines, including patients and family members.
- Facilitate discussions of current practices and approaches to cardiac ND care across our represented CNOC centers. This will include, but is not limited to:
- How to manage increasing demand and patient volumes. Specifically, how we prioritize and triage patients and how we can support families while they wait for a more comprehensive evaluation or visit.
- Models for providing care, including incorporation of telehealth, as well as discussions of how outcomes and other key metrics are tracked across centers.
- How to harness innovative care models to address health disparities and improve access to outpatient cardiac ND care across diverse populations.
- Discussions about best practices and strategies to optimize cardiac ND care may be informed by reviewing challenges and approaches that have been successful in promoting ND care in other at-risk pediatric populations and sharing our experiences beyond the cardiac population.
- Identify basic principles, processes, and guidance for how to establish and maintain a cardiac neurodevelopmental program, whether this be starting a new program or expanding an existing program.
- Create shared resources and tools for programs and their teams, which we envision will be especially useful for new CNOC members. We also aim to provide resources for families on the purpose and processes of a cardiac neurodevelopmental clinic and the role of these programs in supporting optimal neurodevelopmental care.
- Over time, our goal is to establish best practices for supporting outpatient cardiac neurodevelopment program growth, including triage, screening, care, and funding approaches. We will also identify recommended metrics or other methods of tracking patient follow-up, outcomes, and overall clinical care.
Please contact Co-Chairs Stephany Cox or Renee Sananes if you are interested in joining this SIG or have questions.
Internal CNOC Resources from the TTF: https://www2.cardiacneuro.org/members/telehealth/
Cox, S., Butcher, J., Sadhwani, A., Sananes, R., Sanz, J.., Blumenfeld, E., Cassidy, A., Cowin, J., Ilardi, D., Kasparian, N., Kenowitz, J., Kroll, K., Miller, T., & Wolfe, K. Integrating Telehealth Into Neurodevelopmental Assessment: A Model From the Cardiac Neurodevelopmental Outcome Collaborative (2022). Journal of pediatric psychology, 47(6), 707-713.
Kasparian, N., Sadhwani, A., Sananes, R., Blumenfeld, E., Butcher, J., Cassidy, A., Cox, S., Kenowitz, J., Miller, T., Sanz, J., Wolfe, K., & Ilardi, D. (2022). Telehealth services for cardiac neurodevelopmental care during the COVID-19 pandemic: a site survey from the Cardiac Neurodevelopmental Outcome Collaborative. Cardiology in the young, 1-8.