Telehealth Use and Access to Services for Children with Special Healthcare Needs

Summary

Early in the COVID-19 pandemic, many subspecialty medical clinics were canceled, including those at Wake Forest Baptist Health System. This threatened to limit access to needed health services. However, the pandemic provided a unique opportunity to broaden access to medical care by increasing the use of telehealth services. Telehealth is equal to in-person care in clinical effectiveness and patient satisfaction.¹ Our initial pilot project, funded through the Clinical and Translational Science Institute (CTSI) Pilot Program, sought to understand how telehealth services can affect access to healthcare and impact health outcomes of vulnerable children, specifically children with special health care needs (or CSHCN). CSHCN need long-term medical and non-medical services from multiple providers.^2-3 However, almost half of families of CSHCN report unmet healthcare needs for their children.^4-5

This study 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 versus in-person outpatient clinic visits in improving health outcomes among children with medical complexity (CMC), a subgroup of CSHCN; and 3) gain perspectives of caregivers of children with medical complexity on the benefits and challenges of telehealth. Children 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. With this data, we compared completion, cancelation, and no-show rates between telehealth users and telehealth non-users, and between pre-pandemic and pandemic periods. Next, we specifically evaluated whether access to pediatric neurology services varied by visit type among Black children,¹ given the historical barriers to healthcare services experienced by this group. 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 (15 in English and 8 in Spanish) with caregivers of children with medical complexity about their perspectives on the benefits and challenges of utilizing 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, representing 15% of all children nationwide.⁶ CSHCN have considerably more school absences than children without special health care needs.⁷ Care of CSHCN impacts emotional, mental, financial, and social health and interpersonal relationships within families.^8-9 There is an over-representation of racial and ethnic minority groups among CSHCN: 17% of CSHCN identify as Hispanic and 16% as Black, non-Hispanic.⁶ This project provided a unique opportunity to understand how telehealth services affect access to health and health outcomes among vulnerable children. The results of this study have helped clinicians like Drs. Nageswaran and Grefe address the barriers they face in delivering care to their patients and allowed them to effectively guide families and advocate for necessary services.

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 previous work indicates that one factor contributing to poor healthcare access is difficulty transporting children to a tertiary-care children’s hospital, such as Brenner’s Children’s Hospital (BCH), for clinic appointments.¹² With this in mind, one of the main questions this research sought to answer was: Does telemedicine provide more equitable access to healthcare services than in-person clinical visits for vulnerable children?

Our research suggests that there are still concerning differences in the use of telehealth services based on children’s race/ethnicity and insurance status. This could potentially widen disparities in access to neurology services for these vulnerable groups. One possible reason for this is limited access to the technology needed for telehealth, including broadband internet access.¹³ However, our study does show that children in vulnerable groups are more likely to use audio visits than video visits, highlighting that flexibility in the type of appointments offered (audio, video, or in-person) could reduce these disparities in access to care.

Benefits

Demonstrated benefits are those that have been observed and are verifiable.

Potential benefits are those logically expected with moderate to high confidence.

Formal recommendations for telehealth use in CSHCN. potential.

Clinical

Guidelines

Telehealth users had lower cancelation and no-show rates during the pandemic compared to non-users for pediatric neurology services. demonstrated.

Community

Health care accessibility

Telehealth, especially audio visits, has the potential to help address disparities in access to care. potential.

Community

Health care accessibility

Telehealth mitigated challenges children faced related to hospital policies and requirements for in-person visits during the pandemic. demonstrated.

Community

Health care delivery

Telehealth may reduce financial burden on families with CSHCN, through reduced transportation costs and reduced time away from work for parents/caregivers. potential.

Economic

Cost savings

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.

Policy

Policies

Study results can be used as evidence that lower insurance reimbursement for audio visits compared to video visits will have a negative impact on healthcare access for children belonging to vulnerable groups. potential.

Policy

Policies

This research has clinical, community, economic, and policy 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 or through telehealth services. Our goal is to develop 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.

Community

Caring for CSHCN, especially those with medical complexity, poses significant challenges for families and healthcare providers. Telehealth appointments are a critical component of outpatient care for CMC. Our study explored caregiver experience with in-person visits and telehealth services for CMC. Our findings highlight the need for healthcare providers to consider the unique needs of CMC and their families to provide better access to outpatient care. Our findings also emphasize the importance of working with families to offer choices that can minimize the challenges and disruptions associated with in-person healthcare visits. Additionally, telehealth options allayed caregivers’ fears about their children’s exposure to COVID-19 and other germs and mitigated challenges with in-person visits during the pandemic. This shows an option for telehealth improves healthcare accessibility. 

Economic

Telehealth options contributed to reduced travel time, cost, delays, and appointment cancelations. This cost is an undue burden on families of children needing specialty care.

Policy

Our study highlights the importance of addressing the burden associated with attending outpatient appointments for CSHCN, especially the subgroup of CMC. As health insurance companies consider scaling back provisions for telehealth offered during the pandemic, policymakers should take into account our findings, which demonstrate the positive effect of telehealth in improving pediatric specialty access and health outcomes of children.

Lessons Learned

Our study suggests that Learning Health Systems children’s hospitals should establish processes and systems to support telehealth services for children, thereby improving their access to specialty care. Additionally, when providing outpatient specialty services, providers and hospital systems should adapt their structures and processes to consider the unique needs of children with medical complexity.