Citation: Beddows, K., Bansal, N., Abraham, L., Hsu, D. & Lamour, J. (2022). Success and Challenges of Telemedicine in the Care of Pediatric Heart Transplant Patients During the COVID-19 Pandemic. Online Journal of Nursing Informatics (OJNI), 26(2). https://www.himss.org/resources/online-journal-nursing-informatics
Background: During the COVID-19 surge and shutdown of New York City from March 2020 through May 2020, we transitioned to telemedicine to provide routine and urgent care to our pediatric heart transplant patients. The effectiveness of telemedicine in this population has not been described.
Methods: A retrospective cohort study was conducted at the Children’s Hospital at Montefiore. Electronic health records of all pediatric heart transplant patients who received care from January 3, 2020, to August 31, 2020 were queried. Data collected included frequency of telemedicine visits, in person, and emergency room visits, hospitalizations, immunosuppression levels requiring adjustment, and out-of-window patient follow-up. The proportion of immunosuppression levels out of range was compared among four identified groups by chi-square analysis.
Results: During the shutdown period (March 13, 2020, to May 12, 2020) there were 54 telemedicine visits: 61% routine and 39% urgent. Five (24%) urgent telemedicine visits justified an in-person follow-up: three clinic visits, two ED visits, one patient hospitalized. During the post-shutdown period 1 (May 13, 2020, to June 20, 2020) when in person visits resumed, nine patient visits were out of window for routine follow-up, with a median of six weeks delayed. Immunosuppression levels were not therapeutic in 29% of patients in the pre-shutdown period (January 3, 2020, to March 18, 2020) compared to 46% during the post-shutdown period 1 (p=0.06). By post-shutdown period 2 (June 12, 2020, to August 31, 2020), out of range immunosuppression levels had returned to pre-shutdown out of range levels (25% of patients) with a p=0.6. The percent of immunosuppression levels out of range between post-shutdown period 1 and post-shutdown period 2 was statistically significant (p=0.04).
Conclusion: Telemedicine can be utilized to stay connected to patients when routine in person care is disrupted. The higher percentage of patients with immunosuppression levels out of range seen during post COVID-19 shutdown period 1 reinforces the importance of routine immunosuppression level surveillance.
During the spring of 2020, New York City was a major epicenter for COVID-19 infections in the United States and the Bronx had the highest rates of hospitalization and death (NYC Department of Health, 2020). In March 2020 an executive order directed New York City hospitals to postpone elective procedures and visits. The New York public school system was closed, and residents were advised to stay home. This included the shutdown of the outpatient pediatric heart transplant clinic with efforts to decrease COVID-19 hospital acquired transmission for patients and staff. It also allowed the medical center to reallocate hospital resources to care for the many COVID-19 patients who required ED care and hospitalization. Not only were transplant families reluctant to leave their homes for routine immunosuppression levels, but they were also reluctant to have strangers come into their homes for fear of COVID-19 exposure.
In addition, in-home phlebotomy services were restricted and non-existent for our youngest pediatric heart transplant patients in need of timed blood draw. Most pediatric heart transplant routines and urgent patient visits were transitioned to a telemedicine visit platform. Routine patients who were within one year of receiving their transplant were seen in clinic and had routine blood work monthly. Urgent patient visits were requested by caregivers and identified when a transplant patient had an acute illness or concerning medical symptom. These urgent visits were first triaged via telemedicine visits to determine if an in-person visit was warranted. Medicaid and Medicare expanded reimbursement for telemedicine visits and emergency provisions allowed for rapid adoption of both Health Insurance Portability and Accountability Act (HIPPA) compliant and non-compliant telemedicine platforms (Gadzinski, 2020). The efficacy of telemedicine as a tool to care for children after heart transplant had not been reported.
This retrospective IRB-approved study was conducted at The Children’s Hospital at Montefiore, a tertiary academic institution in Bronx, New York. Patient data from January 3, 2020, through August 31, 2020 was captured through a single electronic health record system, Epic (Epic, Verona, WI). Extracted data variables included telemedicine platform used, frequency of telemedicine, clinic and ED visits, hospitalizations, telemedicine visit type, immunosuppression levels requiring adjustment, and out-of-window patient follow-up. According to institutional protocol, post-transplant routine follow-up care is defined as: weekly following transplant surgery discharge for one month, bi-weekly for one month, monthly for month’s 3-12 post-transplant, every two months following one year post transplant date, then every three months thereafter through the second year post-transplant. Four time periods were compared: Pre-shutdown January 3, 2020, to March 12, 2020; Shutdown March 13, 2020 to May 12, 2020; post-shutdown period 1 from May 13, 2020 to June 20, 2020; and post-shutdown period 2 from June 21, 2020 to August 31, 2020. The post-shutdown period 1 reflects the month immediately following the shutdown when in-person visits resumed, and patients were more likely to be out-of-window for routine follow up. Post-shutdown period 2 reflects the time when patients were more likely to be in-window for routine follow up. Chi square analysis was used to compare out-of-range immunosuppression levels between groups.
Telemedicine platforms used are illustrated in Figure 1. Initially we utilized telephone (17%), WhatsApp (13%), Facetime (2%), Skype (18%), and Microsoft Teams (6%), until our Healthcare Organization initiated Montefiore First, on April 1, 2021, which resulted in 26% of the telemedicine visit platform sessions. This allowed providers and patients to use the platform via the Montefiore First website or an application from a tablet or phone. All Montefiore First video communication was HIPAA-compliant, encrypted and never stored.
During the pre-shutdown period there were 62 in-person transplant visits and no telemedicine visits. All visits were within the routine care follow-up window. Immunosuppression levels were out-of-range in 18 (29%) patients.
During the shutdown, most pediatric heart transplant encounters were transitioned to telemedicine, resulting in 54 encounters: 61% routine and 39% urgent visits. Urgent visits were scheduled at the request of a caregiver due to a concerning issue in the patient. Five of the urgent telemedicine visits warranted in-person follow-up, four patients for fever work-up and one patient for vomiting. Two patients were sent to the ED with one requiring hospitalization, one with parotitis requiring drainage and one admitted from ED with a small bowel obstruction due to post-transplant lymphoproliferative disease. There were two patients transplanted within one year who required in-person routine care during shutdown period 1, no immunosuppression levels were out of range. No telemedicine immunosuppression doses were adjusted during routine telemedicine visits.
Post-Shutdown, all routine encounters were transitioned to in-person. During post-shutdown period 1, routine patient follow-up was out-of-window in 9 of 50 patients (18%) at a median of six weeks and immunosuppression levels were out-of-range in 23 (46%) patients. The percentage of patients with immunosuppression levels out-of-range during post-shutdown period 1 was not significantly higher than pre-shutdown (p=0.06). During post-shutdown period 2, all 43 patient visits were within a routine follow-up window. Immunosuppression levels were out-of-range in 11 patients (25%). (Table 1) Immunosuppression levels were more likely to be out-of-range in the post-shutdown period 1 vs post-shutdown period 2 (p=0.04). The percentage of patients with immunosuppression out-of-range was not significantly different between pre-shutdown and post-shutdown period 2 (p=0.6). Out of range immunosuppression levels for all time periods were equally supratherapeutic and subtherapeutic.
During post-shutdown period 2, we had one patient develop mild cellular graft rejection grade 1R/1B, once in-person clinic visits resumed which was found on a routine scheduled cardiac biopsy, his immunosuppression level was supratherapeutic and he was not out of range for follow-up care, and was treated with an oral steroid boost. During post-shutdown period 2, we had one patient death, who was hospitalized due to complications of post-transplant lymphoproliferative disease unrelated to out of range immunosuppression levels.
The COVID-19 pandemic necessitated a rapid transformation in the delivery of outpatient care. The compliance, legal and financial barriers often cited as challenges to telemedicine were removed at least temporarily and virtual visits provided a platform for real-time interactive telemedicine interactions using commonly available home-consumer devices (Shah, 2020) Brophy (2017) suggested the use of telemedicine in pediatric patients that can be effectively utilized in routine and urgent visit settings, applying this model of care in pediatric sub-specialty settings allows for a sustainable and cost-effective strategy to improve pediatric care. However, maintaining adequate immunosuppression levels remains a barrier to completely transitioning to telemedicine for routine care.
There have been several publications in the adult heart failure literature on the efficacy of telemedicine. Godorski et al. (2020) found the transition to virtual from in-person visits in patients discharged to home after a heart failure hospitalization resulted in a reduction in no show rates from 76% vs. 51%. Vidula et al. (2021) demonstrated that video visits successfully accomplished management decisions in LVAD patients remotely saving over two hours in travel time and achieving high patient satisfaction. Umapathi et al. (2020) demonstrated that during the COVID-19 pandemic most patients in heart failure were successfully managed virtually and only 6% patients required in-person visit for further evaluation. This number is similar to our findings that 9% pediatric heart transplant patients required an unscheduled in-person visit after a telemedicine visit. Decreasing the burden on patients, families, and the hospital system while limiting patient and healthcare provider exposure to COVID were major benefits of telemedicine during the pandemic.
The move to telemedicine during the pandemic was enormous and will not return to pre-pandemic frequency. Therefore, it is important to share lessons learned in order to improve how these tools are used in various populations. There are several barriers to the successful implementation of telemedicine. Using a HIPPA-compliant platform is ideal, however the rapid transition to telemedicine during the shutdown allowed for the brief use of non-HIPPA compliant platforms to stay in touch with patients. Once our healthcare organization initiated a HIPPA compliant, encrypted platform called Montefiore First on April 1, 2020, providers and patients could use video communication via a website or phone/tablet application which resulted in 26% of the telemedicine visit types (Figure 1) to occur safely without privacy concerns.
Limited English Proficiency (LEP) patients require medical translation services which were not integrated into any of the telemedicine platforms utilized in this study. Fortunately, all LEP caregivers and patients were able to attend the televisit since we were able to utilize medical translation services via phone conferencing on provider phone devices during the visit.
The quality of a telemedicine visit can be compromised because of poor internet or WiFi connectivity, and telemedicine cannot be performed if patients do not have devices that allow access to the telemedicine application. Drake et al. (2019) looked at limitations of poor internet access in rural communities, who would benefit from telemedicine services. They concluded these rural areas were likely to have poor broadband internet access, proving to be a barrier for telemedicine in populations who would greatly benefit from it. Internet and WiFi connectivity in our patients was not a barrier we experienced, likely due to the urban areas most of our patients resided in.
Ensuring patient privacy with multiple household members present during the visit can be challenging and loud background distractions impair effective communication. We did not experience barriers with patients unable to obtain medications or insurance coverage. Many of these challenges can be addressed through provider, patient/family education and providing social supports services to aid in accessing devices or WiFi connectivity options.
A universal challenge for telemedicine visits, particularly in the pediatric population, is the inability to perform a physical examination or get objective testing. Nearly half our patients during the COVID-19 period had immunosuppression levels out-of-range, highlighting the need to routinely check levels. We speculated that changes in immunosuppression levels were due to an abrupt change in lifestyle resulting in less activity, different sleep habits, late or missed doses of medication, and dietary changes. Home blood pressure monitoring, scales, and local laboratory testing have been used to augment adult heart failure telemedicine visits (Desai, 2020). These tools can be implemented in pediatric heart transplant patients as well. Dried blood spot sampling has improved and may be an avenue to monitor immunosuppression levels in small children from home (Zwart, 2019).
Limitations of this study include the retrospective design, single patient center, small patient sample size and short duration of patient follow-up after the shutdown. Although not a limitation for this study, home phlebotomy during the shutdown proved to be a limitation to our pediatric population due to laboratory age constraints and timed immunosuppression levels.
In conclusion, telemedicine can be utilized to provide continuity of care to pediatric heart transplant patients, particularly when routine care is disrupted, and is a valuable tool to triage sick patients in need of in-person evaluation. However, routine immunosuppression monitoring either at home or at a local facility should occur concurrently if services are available during care disruption.
Acknowledgments: We acknowledge all healthcare workers involved in the care of our pediatric heart transplant patients during the COVID-19 pandemic.
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Kimberly Beddows, CPNP
Current position: pediatric heart transplant nurse practitioner at The Children’s Hospital at Montefiore (CHAM). I currently hold a master’s in nursing from Columbia University and is enrolled in CUNY School for Professional Studies in their Nursing Informatics program, set to graduate Fall 2022. ORCID: 0000-0002-2563-0477
Neha Bansal, MD
Current position: pediatric heart transplant attending at The Children’s Hospital at Montefiore (CHAM). Completed medical educational training. ORCID: 0000-0001-7026-3058
Lincy Abraham, CPNP
Current position: pediatric ICU nurse practitioner The Children’s Hospital at NYP. Educational training, master’s in nursing at Boston University.
Daphne T. Hsu, MD
Current position: pediatric heart transplant attending at The Children’s Hospital at Montefiore (CHAM). Completed medical educational training. ORCID: 000-002-2654-0430
Jacqueline M. Lamour, MD
Current position: pediatric heart transplant attending at The Children’s Hospital at Mt. Sinai. Completed medical educational training. ORCID: 0000-0002-8829-7325
All authors worked in the Division of Pediatric Cardiology, Children’s Hospital at Montefiore, Bronx, NY, USA during the time this abstract and manuscript was composed.