Enhancing Pediatric Long COVID Care Through Telementoring: Insights From an ECHO Program

Abstract

Long COVID affects a significant number of children, yet clinician knowledge gaps and limited access to specialized care hinder effective management. With fewer than 20 pediatric long COVID clinics in the United States, many families must travel long distances for care. To address these challenges, a pediatric long COVID ECHO (Extension for Community Healthcare Outcomes) program was developed to educate health care professionals on evidence-based care. The program engaged 94 participants from the United States and Canada via weekly tele-education sessions, recruited through word of mouth and professional listservs. Pre-surveys (41% response rate) and post-surveys (29% response rate) were sent to attendees. Participants reported statistically significant improvements in knowledge, confidence, competence, and self-efficacy (P < 0.001). This program represents a valuable initiative to facilitate timely interventions and empower primary care and community providers in diagnosing, treating, and managing long COVID in pediatric populations.

Introduction

Long COVID, or post-acute COVID-19 syndrome (PACS), presents a significant public health concern, particularly for children and adolescents. According to the Centers for Disease Control and Prevention (CDC), long COVID is characterized as a chronic condition that persists for at least 3 months after SARS-CoV-2 infection, encompassing a wide range of symptoms that can fluctuate in severity.¹ Children who experience mild initial COVID-19 infections may still face enduring effects, such as fatigue, cognitive difficulties, respiratory symptoms, sleep disturbances, heart palpitations, post-exertional malaise, and mood disorders.^2,3 These long-term symptoms can significantly impair a child’s school attendance and daily functioning and have been correlated with decreased quality of life.² For children with pre-existing mental health conditions, allergies, or developmental delays, long COVID may exacerbate symptoms such as appetite loss, mood disturbances, fatigue, dizziness, and vertigo compared to children without these conditions.² Patients with physical, intellectual, or developmental disabilities (IDDs) also represent a particularly vulnerable population, facing higher mortality rates from COVID-19 and a greater likelihood of experiencing long COVID symptoms following infection.⁴ Although hospitalization during the acute phase of COVID-19 infection is a risk factor for the development of long COVID, the majority of children and adolescents experience a mild acute infection.⁵ COVID-19 vaccination, and in some cases boosters, reduce the risk of severe illness and hospitalization both in children and adults,^6–8 and vaccination has been shown to reduce the risk of further development of long COVID.^9–11 While COVID-19 vaccination reduces these risks, unfortunately, it does not eliminate them completely. Both children and adults can still develop long COVID despite COVID-19 vaccination and boosters.

Estimates of the prevalence of long COVID among children ages 0 to 17 vary widely. Data from the CDC indicate a lower prevalence of 1% to 2%, with 1.3% of children having previously experienced long COVID and 0.5% currently affected as of 2022.¹² However, some studies suggest a higher prevalence, affecting 10% to 20% of pediatric patients and potentially impacting up to 5.8 million children in the United States.³ The diverse and multisystemic nature of symptoms makes diagnosis and management of pediatric long COVID challenging, particularly in resource-constrained environments where awareness and subspeciality providers may be insufficient.^2,13 Patients and caregivers may encounter skepticism from health care providers and family members about the legitimacy of their symptoms, compelling them to become advocates and medical experts for their children. Children with long COVID experience stigma in various forms, including feeling embarrassed about their physical limitations, being judged as weak or dishonest, and experiencing negative social interactions with peers and others.¹⁴ Collecting information about symptoms and timelines can also be challenging, especially when medical histories are incomplete. Patients may struggle to differentiate new symptoms related to long COVID from pre-existing health issues, especially when unfamiliar with it as a distinct health condition.¹⁵ Furthermore, ongoing racial and ethnic disparities, cultural and language barriers, as well as economic and geographical challenges, significantly impact health equity in the treatment of long COVID and the ability to receive a diagnosis.^15–18 With fewer than 20 specialized pediatric COVID clinics available nationwide and long waitlists for those that do exist,¹⁹ there is a need to educate and support community providers (eg, primary care clinicians, educators, and therapists) on the diagnosis, care, and management of long COVID in both typically developing children and those with IDDs.

Project ECHO (Extension for Community Healthcare Outcomes) is an innovative model for mentoring community providers in diagnosing and treating complex medical conditions in the medical home that bridges the gap to accessing care in resource-limited communities.^20–22 The program utilizes video conferencing technology to connect multidisciplinary expert teams, referred to as the “hub,” with community providers, known as “the spokes,” to enhance their ability to provide high-quality care, increase efficiency, and reduce health disparities in underserved communities.²³ Core principles include case-based learning, strategy exchange for improving care standards, and outcome evaluation using digital tools.²³ This model enables health care providers to deliver specialized care in their communities and bridge gaps in care for various conditions such as hepatitis C, autism, diabetes, and cancer care.^20,23 It has also been used in pediatric populations in education and to aid in managing children with pain, medical complexity, and mental health disorders.^24–28

Health care providers participating in ECHO programs experience improved knowledge, self-efficacy, clinical confidence, and satisfaction in treating the medical condition of interest.²⁹ Specifically, ECHO participants have reported statistically significant improvements in knowledge and confidence compared to waitlist controls.³⁰ Recognizing the growing need for pediatric long COVID management expertise, our team designed a novel ECHO series for this purpose. Here, we describe our innovative approach, underpinned by the ECHO model’s core principles of case-based learning and collaborative community building. We aim to demonstrate how this accessible telementoring intervention can significantly empower primary care and community providers to diagnose, treat, and manage the emerging crisis of long COVID in children and adolescents.

Methods

Course Content and Development

The Pediatric Long COVID ECHO program was created using a structured 3-phase approach: planning, preparation, and delivery. It builds on the development principles of previous ECHO initiatives.²⁵ In the planning phase, the program’s objective was to enable earlier interventions and empower primary care and community providers to diagnose, treat, and manage long COVID. A core team of experts was assembled, comprised of a pediatric neurologist, neuropsychologist, psychologist, and physical therapist, along with invited experts from various subspecialties such as Integrative Medicine, Otolaryngology, and Pulmonology. The series focused on the diagnosis and treatment of both typically developing children and children with pre-existing intellectual, physical, and developmental disabilities.

The preparation phase involved the hub team developing session materials, receiving ECHO orientation and training, and recruiting community partners. Templates and tools for data collection were also created, including case forms, surveys, registration, and needs assessment forms. Standardized self-report questionnaires utilized in prior ECHO programs were adapted to specifically ask about pediatric long COVID in children with and without intellectual, physical, or developmental disabilities. ^25,31,32 Various organizations, such as the state chapters of the American Academy of Pediatrics, School Nurse Associations, the National Register of Health Service Psychologists, and the American Academy of Clinical Neuropsychology, among others, provided support throughout the recruitment process. The final phase, preparing for delivery, entailed reviewing participant learning priorities, finalizing the course schedule, and conducting a mock ECHO session before the formal launch.

The ECHO sessions were conducted weekly over 1-hour intervals from February to May 2024 and organized into 2 separate cohorts. Throughout the series, participants had the weekly opportunity to present a de-identified patient case, leading to interactive discussions that prompoted questions and fostered a collaborative learning environment. In the absence of participant-submitted cases, the hub team would introduce a mock case to stimulate discussion and engagement. Case reviews provided opportunities to discuss clinical diagnoses and medical interventions to improve symptom management and implement best practices while reinforcing key curriculum concepts. The hub team supplied pertinent recommendations regarding diagnostic and assessment considerations, resources, and medication or non-medical interventions to enhance the learning experience. Didactic presentations, approximately 20 minutes long, were delivered by hub team members or external experts with relevant expertise. The didactics covered the prevalence and manifestations of long COVID in children and adolescents, evidence-based practices in managing the condition, and resources to address physical, social, and mental health concerns. Continuing medical education credits were made available to registered participants to incentivize participation and encourage continuous learning. The complete listing of topics covered and their presentation order are detailed in Table 1.

Table 1.

Course Curriculum.

Session	Number and Title
1.	Introduction: What is Pediatric Long COVID?
2.	Mental Health Considerations
3.	Dizziness
4.	Postural Orthostatic Tachycardia Syndrome (POTS)/ Dysautonomia
5.	Physical Therapy and Specialized Exercise Program
6.	Shortness of Breath and Other Respiratory Complaints
7.	Fatigue and Post-Exertional Malaise
8.	Integrative Health Treatments
9.	Neurocognitive Sequela: What is Brain Fog?
10.	Headaches

Measures

Participant evaluation.

Participant data collected included demographics such as race/ethnicity, gender, profession, and organization/practice details. In addition, participants were asked to rank a list of lecture topics based on their learning priorities from greatest to least to ensure that the content of the lectures was relevant to their practices. This study was designated as exempt research by the Johns Hopkins Institutional Review Board.

Pre- and post-surveys.

Participants were emailed and asked to complete a self-report pre-survey via Qualtrics using a 5-point Likert scale (1—very low, 2—below average, 3—average, 4—above average, 5—very high) to assess their self-reported confidence, competence, knowledge, professional self-efficacy, and capacity to manage children with long COVID (see Supplementary Material).

The post-survey replicated the same questions from the pre-survey to measure any changes in the participants’ confidence, competence, knowledge, professional self-efficacy, and capacity to manage after completing the program. The post-survey also included open-ended questions, where participants were asked to share their top 3 commitments to change in their practice as a result of their experience in the ECHO, how the program had impacted them, and general feedback. The self-report questionnaires utilized in prior ECHO programs were adapted to specifically address pediatric long COVID.²⁵ In addition, a separate feedback survey was distributed, where participants were asked to rate their overall satisfaction with the program on a scale of 1 to 5 (with 5 indicating the highest satisfaction). The feedback questions covered the overall experience, satisfaction with the didactic sessions and case presentations, opportunities for contribution, and the overall sense of safety, support, and welcome they felt throughout the program. Prior to data analysis, all survey responses were de-identified using study IDs to ensure anonymity and were blinded to the research team.

Statistical analyses.

Both paired and independent t-tests were utilized to analyze the difference between pre- and post-testing to determine the effect of the intervention. Pre- and post-course assessment differences across 5 domains were analyzed: self-reported confidence, competence, knowledge, self-efficacy, and capacity to manage patient cases with long COVID. A P-value of < 0.05 was considered statistically significant. Statistical analysis was performed using SPSS. Additional results are presented as means or percentages for descriptive purposes.

Results

The study included a total of 94 participants from across the United States and Canada (Figure 1). The demographic breakdown was as follows: 87 females (92.6%), 5 males (5.3%), 1 non-binary participant (1.1%), and 1 participant who preferred not to disclose their gender (1.1%). Of the 49 participants who reported their race or ethnicity, 31 were white (63.3%), 7 were black/African American (14.3%), 4 were Hispanic/Latino (8.2%), 3 were Multiracial or biracial (6.1%), 2 were Asian (4.1%), 1 was American Indian or Alaskan Native (2.0%), and 1 individual reported another race or ethnicity (2.0%). The cohort included a diverse mix of professionals from various health care disciplines and different practice or organizational backgrounds, as outlined in Table 2.

Figure 1.

Map of study participants practice location. Darker colors indicate a higher number of participants from the state or territory.

Table 2.

Breakdown of Professions and Practices/Organization Type.

Professions	Frequency (n = 94) %
Nurse	38 (40%)
Psychologist/Neuropsychologist	26 (28%)
Physician (eg, Pediatrician, Hospitalist)	10 (11%)
Psychiatrist	3 (3%)
Social Worker	3 (3%)
Occupational Therapist	1 (1%)
Nurse Practitioner	1 (1%)
Other (eg, teacher, student, chief executive, administrator)	9 (10%)
Not Responded/Unknown	3 (3%)
Practice/Organization Type	Frequency (n = 50) %
School-Based Health Center	14 (28%)
Multiple Practices/Organizations	8 (16%)
Private Practice	6 (12%)
Academic Medical Center	4 (8%)
Hospital	4 (8%)
Military Treatment Facility	1 (2%)
Community Health Center	1 (2%)
University/College-Based Clinic	1 (2%)
Other	11 (22%)

Regarding the entire ECHO series, the overall satisfaction score was 4.7, indicating that participants were very satisfied with the program (n= 13, M = 4.69, SD = 0.48). Pre-surveys were sent to all program registrants (n = 150), while post-surveys were sent to attendees of at least 1 ECHO session (n = 94). Any participants who completed the pre-survey but did not attend any of the ECHO sessions were removed from the final data set. Among the 94 professionals that participated in the program, 39 completed the pre-survey (41% response rate), 27 completed the post-survey (29% response rate), and 17 participants completed both. Table 3 presents the self-reported pre- and post-survey results for the entire sample across the 5 domains of interest. To evaluate the effectiveness of the intervention, we conducted a 2-sample t-test for the total number of participants who completed the program surveys and a paired t-test to assess within-group changes for those who completed both surveys.

Table 3.

Self-reported pre- and post-survey domain results for the entire sample (n = 39 for pre-survey, n = 27 for post-survey) in regard to caring for children with long COVID.

	1. Very low		2. Below average		3. Average		4. Above average		5. Very high
	Pre-survey	Post-survey	Pre-survey	Post-survey	Pre-survey	Post-survey	Pre-survey	Post-survey	Pre-survey	Post-survey
Confidence	3 (8%)		12 (31%)		20 (51%)	9 (33%)	3 (8%)	14 (52%)	1 (3%)	4 (15%)
Competence	4 (10%)		12 (31%)	1 (4%)	19 (49%)	9 (33%)	3 (8%)	13 (48%)	1 (3%)	4 (15%)
Knowledge/Skills	2 (5%)		15 (38%)	2 (7%)	19 (49%)	7 (26%)	2 (5%)	14 (52%)	1 (3%)	4 (15%)
Self-efficacy			8 (21%)	1 (4%)	23 (59%)	7 (26%)	7 (18%)	15 (56%)	1 (3%)	4 (15%)
Capacity to Manage	3 (8%)	2 (7%)	15 (38%)	5 (19%)	18 (46%)	10 (37%)	2 (5%)	7 (26%)	1 (3%)	3 (11%)

Figure 2 demonstrates the spread of total scores on the pre- and post-surveys (max score of the 5 items is 25). There was a significant improvement in the total score from pre-survey (n = 39, M = 13.48, SD = 3.55) to post-survey (n = 28, M = 18.26, SD = 3.63) (t(64) =5.32, P < 0.001). The difference between total scores was, on average, 4.78 points higher in the post-test (95% confidence interval [CI] = 2.98–6.56). The mean difference across each individual domain showed the greatest change in the participants’ confidence to diagnose and treat long COVID patient cases (1.15) and the lowest change in capacity to manage cases (0.58). To ensure that our 2-sample t-test was not driven solely by the paired participants, we also conducted a second confirmatory analysis after removing the paired samples and found that there was a significant improvement in the total score from pre-survey (n = 22, M = 13.36, SD = 4.0) to post-survey (n = 10, M = 20, SD = 2.36) (t(30) =4.88, P < 0.001).

Figure 2.

A distribution of total scores from 0 to 25 of the perceived confidence, competence, knowledge, self-efficacy, and ability to manage before (blue) and after (red) the intervention. There is a noticeable increase in scores after the intervention, indicating that participants had improved capability and knowledge to diagnose and treat pediatric long COVID.

Given that we had different numbers of participants complete the pre- and post-surveys, we also wanted to ensure that we found improvement in a provider’s ability to diagnose and treat pediatric long COVID within individual participants. Figure 3A demonstrates the mean and individual total scores of the 17 participants who completed both the pre-survey (M = 13.65, SD = 3.01) and post-survey (M = 17.25, SD = 3.91). There was a significant improvement in total scores after the ECHO series (t(16) =3.38, P = 0.004). The domain-specific analysis revealed that confidence in managing long COVID patient cases had the greatest mean difference (0.88), while capacity to manage cases had the lowest mean difference (0.24). For reference, prior studies have reported around a 0.5 to 1-point improvement on a Likert scale from ECHO interventions.^30,31,33 We found a significant increase in participant confidence (t(16) = 3.92, P = 0.001), competence (t(16) = 3.67, P = 0.002), knowledge (t(16) = 3.57, P = 0.003), and self-efficacy (t(16) = 4.19, P < 0.001); however, the capacity to manage did not reveal a significant improvement (t(16) = 0.70, P = 0.50) (Figure 3B). The lack of change in the capacity to manage children and adolescents with long COVID might be more reflective of infrastructure and availability of resources in the community, whereas specific provider-related domains (eg, knowledge, self-efficacy) that were targeted by the ECHO series showed significant improvement.

Figure 3.

(A) The mean ± standard error (SE) of the total scores from 0 to 25. Individual subjects (n = 17) are shown in gray circles connected by a line before (left column) and after (right column) the intervention. Statistical significance is denoted by a * (P < 0.05). (B) Number and percentage distribution of the perceived confidence, competence, knowledge, self-efficacy, and capacity to manage scores on the 1 to 5 Likert score (1 = lowest, 5 = highest) in the pre-survey (first column) and post-survey (second column) for the paired subset of participants. Statistically significant differences are shown by a * (P < 0.05).

Discussion

With this study, we aimed to develop and implement a pediatric long COVID telementoring ECHO program to support primary care providers and allied health professionals in long COVID education and management, with specific considerations for children with IDD. A 2022 poll found that only 11% of U.S. physicians are “very confident” in either treating or diagnosing long COVID, suggesting that many health care providers lack the necessary preparedness and training to effectively care for these patients.³⁴ We found that the 10-week Pediatric Long COVID ECHO program effectively increased the self-reported confidence, competence, knowledge, and self-efficacy of a diverse group of health care professionals. However, no significant change was observed in the overall capacity of participants to manage patients with long COVID. This may be attributed to the limited availability of established treatments, clinical trials, and evidence-based management protocols for pediatric long COVID. In contrast, other ECHO programs addressing medical conditions like diabetes and depression have enhanced providers’ ability to manage and treat patients due to the presence of established treatment guidelines and clinical assessment tools for these conditions.^29–31 In addition, the incomplete understanding of long COVID pathophysiology, the scarcity of evidence-based treatments, and infrastructure limitations in health care settings may prevent health care providers from translating their increased knowledge into enhanced treatment capacity. ³⁵ However, the statistically significant improvements noted in both the overall cohort and the subset of participants who completed both pre- and post-program assessments underscore the promising effectiveness of the ECHO model structure in addressing this important gap in knowledge and skills and facilitating professional growth. In addition, the self-reported score increases from this program align with similar improvements observed in other pediatric-focused ECHO initiatives that measure knowledge and confidence across various content areas, such as mental health, behavioral and developmental disorders, and adolescent depression.^25,31,32 In particular, 1 study on pediatric feeding disorders management demonstrated an increase of approximately 15% (15 points on a 100-point scale of provider’s self-reported confidence after the ECHO series).³⁶ Here, we demonstrate a 21% increase on average of self-reported total scores for the management of pediatric long COVID after the ECHO series.³⁶ These results highlight the program’s potential to develop local expertise and improve equitable care for vulnerable and underrepresented populations of children with long COVID, particularly those with IDD, in rural communities, and those who are uninsured or underinsured.

While the program demonstrated positive outcomes in provider-based measures, the study also has several limitations that should be considered. The relatively small sample size and uneven distribution of participants by profession type, particularly the higher number of nurses and neuropsychologists/psychologists who completed the pre- and post-surveys compared to physicians, may have hindered a more comprehensive comparison of outcomes across different health care disciplines. This could potentially introduce bias, as the perspectives and experiences of underrepresented professions may be insufficiently captured. In addition, nonrespondent bias poses a broader concern, as individuals who did not complete surveys may differ systematically from respondents, potentially limiting the generalizability of the results. The lower post-program survey response count of 27 compared to 39 pre-program responses also suggests potential challenges with participant retention commonly seen in longitudinal studies,³⁰ but these survey response rates are similar to what has been reported in prior studies.³⁷ In addition, variability in attendance was observed, and the absence of a control group limits the ability to attribute the observed improvements solely to the program itself. Although the results showed statistically significant improvements in the participants’ self-reported domains as measured on a 5-point Likert scale, it is important to further assess the clinical significance of these changes using patient-reported outcomes and objective clinical assessments.

A critical observation from this study is the relative scarcity of resources and support specifically targeting pediatric patients with long COVID within existing ECHO programs, which often focus predominantly on adult populations. Notably, to the best of our knowledge, among other global long COVID-focused ECHO initiatives, this program stands out as the sole initiative that offers mentorship and evidence-based care tailored specifically for pediatric patients. This ECHO program is also designed to adapt to emerging science by incorporating findings from large national initiatives, such as the National Institutes of Health (NIH)-funded RECOVER pediatric observational cohort study and forthcoming clinical trials. To ensure its content remains current, ECHO materials are reviewed bi-annually and updated as new research becomes available and the understanding of pediatric long COVID continues to evolve. To enhance the management of long COVID, it is crucial to improve recognition, diagnosis, and public education about the condition. Improving clinical management could be supported by resources such as lengthier appointments for complex patients, improved pediatric access to physical therapy services, and expanded mental health services, which remain critical to addressing the multifaceted needs of children with long COVID. Increasing awareness among health care providers and the general public can lead to earlier identification of symptoms and timely interventions. Educational initiatives targeting health care professionals can empower them to guide and encourage their patients to advocate for suitable care and support.

Conclusion

This Pediatric Long COVID telementoring ECHO program integrated case-based learning and targeted didactic sessions to educate health care providers and establish a community of skilled professionals capable of diagnosing, treating, and caring for children with long COVID. Although participants demonstrated significant improvements in provider-based measures, addressing the limitations in the capacity to manage patient cases remains a critical challenge. Future efforts should focus on enhancing health care infrastructure, increasing resource availability, and raising public awareness to ensure that providers can effectively translate their knowledge into practice for the benefit of children and adolescents experiencing long COVID.

Supplementary Material

Supplemental Material

Supplemental material for this article is available online.

Data Availability

Data are available on reasonable request to the corresponding author.