Kiona Allen, MD
Michelle Steltzer, CPNP-AC/PC
Like many Interstage Single Ventricle Programs, our team at Ann & Robert H. Lurie Children’s Hospital of Chicago utilizes Interstage Home Monitoring (IHM) to provide an additional safety net for our most fragile infants. While IHM has been shown to improve survival during the interstage period, adverse events (including sudden death at home) still happen1, 2. In fact, some centers utilize a strategy of hospitalization until the Stage 2 bidirectional Glenn procedure to reduce interstage mortality, particularly for the highest risk patients 3, 4.
For our team, this approach cannot sufficiently account for the critical balancing measures of neurodevelopmental, psychosocial, and quality-of-life outcomes for the patient and the entire family. A 4-6 month inpatient hospitalization in the age of COVID visitor restrictions, lack of childcare options for older siblings, and job insecurity takes an unmeasurable toll on these families. Furthermore, the disruption of this critical period of bonding in early childhood can have a lasting effect on the long-term neurodevelopmental outcome 5-10. Even before COVID, our team’s primary goal has been to get these patients home where they belong and to keep them there as much as possible.
Beginning in 2017, we transitioned from a paper and pencil binder system to a tablet-based digital platform (LocusHealth ®, Charlottesville, VA) with integrated video visits (VVs) via a secure video-conference application available in English and Spanish. Under this system, adult caregivers document multiple daily measures and parental concerns. In order to ensure that all patients receive the same services regardless of resources, data-enabled tablets are provided for those without reliable home WiFi. This home data collection is complemented by weekly VVs with additional VVs on-demand as needed. Physical and Speech Language Therapists participate in the VVs, which allows them to interact with patient and family in their home environment working around their normal home routine. Using this system, in-person clinic appointments have been reduced from weekly to monthly. While the trips to clinic are less frequent, they are jam-packed in order to accommodate all the members of the cardiology, nutrition, and developmental team in addition to any necessary testing (Echo, EKG, etc).
This system has enabled us to stay afloat during COVID with only minimal changes to our workflow. In fact, thanks to COVID we are actually billing for these services for the first time. We have also been able to expand our integrated digital platform past the interstage period to facilitate the creation of a structured enteric tube weaning program for interstage graduates. We have successfully weaned 20 patients to date. As we move into this new age of telemedicine, the lessons learned from nearly 20 years of IHM will be invaluable to clinicians managing a host of other fragile populations. It is critically important that clinicians continue to advocate for both the technology and the reimbursement once we move past the pandemic if we want to provide our patients with the safe and convenient care they deserve.
1. Ghanayem NS, Hoffman GM, Mussatto KA, et al. Home surveillance program prevents interstage mortality after the Norwood procedure. J Thorac Cardiovasc Surg. Nov 2003;126(5):1367-77. doi:10.1016/s0022-5223(03)00071-0
2. Rudd NA, Ghanayem NS, Hill GD, et al. Interstage Home Monitoring for Infants With Single Ventricle Heart Disease: Education and Management: A Scientific Statement From the American Heart Association. J Am Heart Assoc. Aug 2020;9(16):e014548. doi:10.1161/JAHA.119.014548
3. Michielon G, DiSalvo G, Fraisse A, et al. In-hospital interstage improves interstage survival after the Norwood stage 1 operation. Eur J Cardiothorac Surg. Jun 1 2020;57(6):1113-1121. doi:10.1093/ejcts/ezaa074
4. Ahmed H, Anderson JB, Bates KE, et al. Development of a validated risk score for interstage death or transplant after stage I palliation for single-ventricle heart disease. J Thorac Cardiovasc Surg. Nov 14 2019;doi:10.1016/j.jtcvs.2019.11.001
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6. Ryan KR, Jones MB, Allen KY, et al. Neurodevelopmental Outcomes Among Children With Congenital Heart Disease: At-Risk Populations and Modifiable Risk Factors. World J Pediatr Congenit Heart Surg. 11 2019;10(6):750-758. doi:10.1177/2150135119878702
7. Farley LM, DeMaso DR, D’Angelo E, et al. Parenting stress and parental post-traumatic stress disorder in families after pediatric heart transplantation. J Heart Lung Transplant. Feb 2007;26(2):120-6. doi:10.1016/j.healun.2006.11.013
8. Geoghegan S, Oulton K, Bull C, Brierley J, Peters M, Wray J. The Experience of Long-Stay Parents in the ICU: A Qualitative Study of Parent and Staff Perspectives. Pediatr Crit Care Med. 11 2016;17(11):e496-e501. doi:10.1097/PCC.0000000000000949
9. Wray J, Cassedy A, Ernst MM, Franklin RC, Brown K, Marino BS. Psychosocial functioning of parents of children with heart disease-describing the landscape. Eur J Pediatr. Dec 2018;177(12):1811-1821. doi:10.1007/s00431-018-3250-7
10. Lawoko S, Soares JJ. Psychosocial morbidity among parents of children with congenital heart disease: a prospective longitudinal study. Heart Lung. 2006 Sep-Oct 2006;35(5):301-14. doi:10.1016/j.hrtlng.2006.01.004