CLEVELAND - A new study from University Hospitals Connor Whole Health found that pediatric patients with long-COVID report high symptom burden that meets or exceeds that of other chronic health conditions. The study describes patient characteristics, care delivery, and provides a novel description of symptom severity. The findings were recently published in Open Forum Infectious Diseases.

In this retrospective study conducted between March 2021 and June 2023, a cohort of 214 patients with long-COVID was identified. Patients completed various questions about their symptoms and quality of life while engaged in care with the Pediatric COVID Recovery Clinic. Within this clinic, patients were evaluated by an infectious disease physician and an integrative medicine specialist for the first 12-18 months. The team collaborated with other specialists and providers to test for possible deficiencies and advocate for patients. Clinicians attempted to correct modifiable nutritional or lifestyle imbalances using various integrative medicine approaches.

"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. 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, the Francoise Adan, MD, Endowed Director in Connor Whole Health Leadership, and first author of the study.

University Hospitals Rainbow Babies & Children's Hospital created the Pediatric COVID Recovery Clinic in March of 2021 to assess and manage children with persistent symptoms following a COVID-19 infection. Patients aged 1 to 26 can enroll in the program. In the clinic, long-COVID was noted as either new symptoms or notably worsened preexisting symptoms associated with a COVID infection. There is currently no national standard for pediatric long-COVID care, nor is there clear understanding of how care is provided in clinics nationwide. The care model implemented at UH Rainbow utilized patient-directed, self-regulation practices such as pacing, diet modifications, sleep hygiene, and physical self-care.

"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. Walking the line of offering optimistic hope and cautious expectation setting was a daily need. Clusters of patterns revealed themselves over time, but in the initial stages, a detailed review of symptoms and life-impact was essential on a patient-by-patient basis," said Amy Edwards, MD, FAAP, Director of the Pediatric COVID Recovery Clinic and senior author of the study.

In "Interdisciplinary Pediatric Long-COVID Care: A Descriptive Study of Interventions and Health-Related Quality of Life," researchers examined clinical data from the electronic health record for patients seen at the Pediatric COVID Recovery Clinic. The investigators found that these patients reported a high symptom burden with elevated sleep disturbance, sleep-related impairment, anxiety, depression, and fatigue. Many of the reported scores were more severe than national norms and those reported by other pediatric chronic disease cohorts (e.g. chronic pain, cancer, sickle cell disease, and autism).

"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 Dr. Miller. "We hope this study expresses how profoundly these young people are affected by this condition, and inspires others to recognize the syndrome, treat it as thoroughly as possible, and have profound compassion for families affected."

The study was funded by the Siemer Family Foundation focused on promoting research benefiting children.

You can read the article, "Interdisciplinary Pediatric Long-COVID Care: A Descriptive Study of Interventions and Health-Related Quality of Life" by clicking here.

Citation:

Miller DW, Rodgers-Melnick SN, Deraz NT, Dusek JA, Segall TL, Edwards AM. Interdisciplinary Pediatric Long-COVID Care: A Descriptive Study of Interventions and Health-Related Quality of Life. Open Forum Infectious Diseases. 2026;13(4):ofag155. Epub 20260410. doi: 10.1093/ofid/ofag155. PubMed PMID: 41978821; PMCID: PMC13070613