Summary
Early in the COVID-19 pandemic, many subspecialty medical clinics were canceled, including at our institution. This threatened to limit access to needed health services. However, the pandemic provided a unique opportunity to increase the use of telehealth services and provide broader access to those seeking medical care. It has been shown that telehealth is equal to usual care in clinical effectiveness, and in patient satisfaction and quality of life.1 Our initial pilot project, funded through CTSI Pilot Program, sought to understand how telehealth services can affect access to health and health outcomes of vulnerable children, specifically children with special healthcare needs (or CSHCN). CSHCN need long-term medical and non-medical services from multiple providers.2-3 Access to healthcare services for CSHCN is important for their well-being, however, almost half of families of CSHCN report unmet healthcare needs for their children.4-5
This study, supported by funding from the Clinical and Translational Science Institute Pilot Program, aims to 1) evaluate whether children who used telehealth services had greater access to outpatient pediatric neurology services compared to those who did not use telehealth services; 2) compare telehealth vs. in-person outpatient clinic visits for children with medical complexity (a subgroup of children with special healthcare needs); and 3) gain perspectives of caregivers of children with medical complexity on the benefits and challenges of telehealth. Those seeking pediatric neurology services may include children with epilepsy, migraine, and other genetic and acquired neurologic disorders. Using Electronic Health Record (EHR) data, we collected information about children who had outpatient neurology appointments in a tertiary care children’s hospital in North Carolina from March 2019 to March 2021. From this data, we compared completion, cancelation, and no-show rates between telehealth user and telehealth non-user, and between pre-pandemic (3/10/2019-3/9/2020) and pandemic periods (3/10/2021-3/9/2021). In a second paper, we specifically evaluated whether access to pediatric neurology services varied by the type of visit and how this varied for Black children. For the second aim, we analyzed whether hospitalizations, ER visits and mortality rates for children with medical complexity changed based on their use of telehealth. Additionally, we completed 23 semi-structured interviews with caregivers (15 in English and 8 in Spanish) of children with medical complexity about their perspectives on the benefits and challenges of telehealth for their children. These interviews were conducted from February to April 2022.
Significance
About 11.2 million children in the United States have special health care needs –15% of all children nationwide.6 CSHCN have considerably more school absences than children without special health care needs.7 Care of CSHCN impacts the emotional, mental, financial, and social health, and interpersonal relationships in the family.8-9 There is an over-representation of racial/ethnic minority groups among CSHCN: 17% of CSHCN identify as Hispanic and 16% as Black, non-Hispanic.6 This project provided a unique opportunity for understanding how telehealth services can affect access to health and health outcomes of vulnerable children. The results of the study have helped clinicians like Drs. Nageswaran and Grefe in addressing the real problems they face in delivering clinical care to their own patient populations and to effectively guide families and advocate for services for children.
Translational Science Benefits
Demonstrated benefits are those that have been observed and are verifiable. Potential benefits are those logically expected with moderate to high confidence.
| Guidelines | Formal recommendations for telehealth use in CSHCN. Potential. |
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| Health Care Accessibility |
Telehealth users had lower cancelation and no-show rates during the pandemic compared to non-users for pediatric neurology services. Demonstrated. |
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| Health Care Accessibility |
Telehealth, especially audio visits, has the potential to help address disparities in access to care. Potential. |
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| Health Care Delivery |
Telehealth mitigated challenges children faced related to hospital policies and requirements for in-person visits during the pandemic. Demonstrated. |
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| Cost Savings |
Reduced financial burden on families with CSHCN, including reduced transportation costs and reduced time away from work for parents/caregivers. Potential. |
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| Policies |
Study results can be used as evidence when evaluating the continuation of telehealth flexibilities offered during the pandemic. NC Medicaid has recently made telehealth flexibilities permanent. Demonstrated. |
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| Policies |
Study results can be used as evidence that lower reimbursement for audio visits compared to video visits will have a negative impact on access for children belonging to vulnerable groups. Potential. |
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This research has community and economic implications. The framework for these implications was derived from the Translational Science Benefits Model created by the Institute of Clinical & Translational Sciences at Washington University in St. Louis.
Clinical: Guidelines promote quality and effectiveness of health care services. Through our set of aims, we were able to learn more about how our patients are engaging with visits, whether in-person, telehealth video or audio visits. Our goal is to make a final guideline recommendation for telehealth use in Atrium Health hospitals. Additionally, we plan to disseminate this guideline as a best practice to other health systems.
Economic: Telehealth options contributed to reductions in travel time, cost, delays and appointment cancellations. This cost is an undue burden on families of children needing specialty care.
Community: Caring for children with medical complexity (CMC) poses significant challenges for families and healthcare providers. Telehealth appointments are a critical component of outpatient care for CMC. Our study was able to describe caregiver experience with in-person visits and telehealth for CMC and our findings highlight the need for healthcare providers to consider the unique needs of CMC and their families when providing access to outpatient care, and to work with families to offer choices that can minimize the challenges and disruptions associated with in-person visits. Additionally, telehealth allayed caregivers’ fears about their children’s exposure to COVID-19 and other germs, and mitigated the challenges with in-person visits during the pandemic. This shows an option for telehealth improves health care accessibility.
Policy: Our study highlights the importance of addressing the burden associated with attending outpatient appointments for CSHCN and CMC. As health insurance companies are considering scaling back provisions of telehealth offered during the pandemic, policy makers can consider our evidence showing the positive effect of telehealth in improving pediatric specialty access and health outcomes of children.
Equity Impact |
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Access to healthcare is particularly problematic for children of minority race/ethnicity, those living in poverty and in rural areas, and those with severe functional limitations.10-12 Our prior work showed that one factor contributing to problematic health care access is transporting children to a tertiary-care children’s hospital, such as BCH, for clinic appointments.12 As such, one of the main focuses for this research was the following question: Does telemedicine provide more equitable access to healthcare services than in-person clinical visits for vulnerable children? We found that differences in telehealth use based on children’s race/ethnicity and insurance status is still concerning and the use of telehealth services could potentially widen the disparities in access to neurology services for these vulnerable groups. One possible reason for this is the problems in access to the technology needed for telehealth, including broadband internet access.13 However, our study does show that children of vulnerable group are more likely to use audio visits than video visits, highlighting that flexibility in type of appointments offered (offering audio, video and in-person) could reduce these disparities in access to care. |
Lessons Learned
We learned that children’s hospitals within Learning Health Systems should create processes and systems, so that telehealth services are offered more consistently to children to improve their access to specialty care. In addition, we learned that, when providing outpatient specialty services, providers and hospital systems should adapt their structures and processes taking into account the unique needs of children with medical complexity.