Children with long COVID report higher levels of fatigue and sleep disturbance than those with cancer or autism.
RT’s Three Key Takeaways:
- High Symptom Burden: Pediatric patients with long-COVID report symptom severity that meets or exceeds levels found in other chronic conditions, including cancer, sickle cell disease, and autism.
- Collaborative Care Models: An interdisciplinary approach combining infectious disease and integrative medicine allows for multifactorial care plans that address modifiable lifestyle factors like diet and sleep.
- Self-Regulation Practices: Effective management strategies in pediatric recovery clinics include patient-directed practices such as pacing, sleep hygiene, and physical self-care to address persistent symptoms.
Pediatric patients with long-COVID report a symptom burden that meets or exceeds that of other chronic healthcare conditions, according to a study from University Hospitals (UH) Connor Whole Health published in Open Forum Infectious Diseases.
The retrospective study, conducted between March 2021 and June 2023, identified a cohort of 214 patients engaged in care at the Pediatric COVID Recovery Clinic. Researchers found that these patients reported elevated levels of sleep disturbance, anxiety, depression, and fatigue. Many of these scores were more severe than national norms and those reported by other pediatric chronic disease cohorts, such as patients with chronic pain, cancer, sickle cell disease, and autism.
“The incorporation of the quality-of-life data was critical in truly showing how profoundly affected these kids are. Many had been dismissed by multiple providers previously as having only anxiety and school avoidance, and these metrics revealed their consistent, true lived experience,” said David W Miller, MD, LAc, medical director of pediatric integrative medicine at UH Connor Whole Health, in a news release.
Interdisciplinary Care Approach
The Pediatric COVID Recovery Clinic at UH Rainbow Babies & Children’s Hospital was established in March 2021 to manage children and young adults, aged 1 to 26, with persistent symptoms following a COVID-19 infection. In the clinic, long-COVID was defined as either new symptoms or notably worsened preexisting symptoms associated with a prior infection.
Patients were evaluated by an infectious disease physician and an integrative medicine specialist for the first 12 to 18 months of care. This collaborative team worked with other specialists to test for deficiencies and advocate for patient needs.
“The collaboration between Infectious Disease and Integrative Medicine allowed for an expanded and collaborative approach to the development of care plans. Given the novelty of this condition, interventions needed to be drawn from what is known about treating related conditions such as Chronic Fatigue Syndrome and other chronic post-infectious patterns,” said Miller, in a news release.
Treatment and Management Challenges
The study noted that there is currently no national standard for pediatric long-COVID care. The model implemented at UH Rainbow focused on patient-directed, self-regulation practices, including pacing, diet modifications, sleep hygiene, and physical self-care.
Clinicians aimed to correct modifiable nutritional or lifestyle imbalances using various integrative medicine approaches. However, implementing these plans proved difficult due to their complexity.
“Treatment implementation was challenging as the care plans were multifactorial, often complex, and demanded changes to cornerstones of health such as diet choices and sleep patterning. It was also not known how to advise families on prognosis as the condition was new,” said Amy Edwards, MD, FAAP, director of the Pediatric COVID Recovery Clinic.
While researchers observed that clusters of patterns revealed themselves over time, they emphasized that a detailed review of symptoms and life-impact remained essential on a patient-by-patient basis during the initial stages of care.
“To date, we still do not know the actual mechanisms behind much of the damage that long-COVID causes, nor how to predict who will have a full recovery and who will suffer longitudinally with symptoms,” said Miller.
