International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward

Abstract

Background: Pediatric Post-COVID-Condition (PPCC) clinics treat children despite limited scientific substantiation. By exploring real-life management of children diagnosed with PPCC, the International Post-COVID-Condition in Children Collaboration (IP4C) aimed to provide guidance for future PPCC care.

Methods: We performed a cross-sectional international, multicenter study on used PPCC definitions; the organization of PPCC care programs and patients characteristics. We compared aggregated data from PPCC cohorts and identified priorities to improve PPCC care.

Results: Ten PPCC care programs and six COVID-19 follow-up research cohorts participated. Aggregated data from 584 PPCC patients was analyzed. The most common symptoms included fatigue (71%), headache (55%), concentration difficulties (53%), and brain fog (48%). Severe limitations in daily life were reported in 31% of patients. Most PPCC care programs organized in-person visits with multidisciplinary teams. Diagnostic testing for respiratory and cardiac morbidity was most frequently performed and seldom abnormal. Treatment was often limited to physical therapy and psychological support.

Conclusions: We found substantial heterogeneity in both the diagnostics and management of PPCC, possibly explained by scarce scientific evidence and lack of standardized care. We present a list of components which future guidelines should address, and outline priorities concerning PPCC care pathways, research and international collaboration.

Impact: Pediatric Post-COVID Condition (PPCC) Care programs have been initiated in many countries. Children with PPCC in different countries are affected by similar symptoms, limiting many to participate in daily life. There is substantial heterogeneity in diagnostic testing. Access to specific diagnostic tests is required to identify some long-term COVID-19 sequelae. Treatments provided were limited to physical therapy and psychological support. This study emphasizes the need for evidence-based diagnostics and treatment of PPCC. The International Post-COVID Collaboration for Children (IP4C) provides guidance for guideline development and introduces a framework of priorities for PPCC care and research, to improve PPCC outcomes.

Fig. 1. Organization of care, diagnostics and interventions in 10 PPCC care cohorts.

a Participating countries in study. From most countries 1 university is represented in this study, with the exception of United States of America (3). b Number of patients for each cohort. c Location of care. ^§The cohort from Jena University Hospital included patients from both an academic and general hospital. d Symptoms of PPCC patients in PPCC care cohorts. Data shown as median and range of median values (percentages of patients). ^&E.g., tics, seizures, nonepileptic spells. *No general definition was used. e Percentage of total patients in PPCC cohorts in whom test is performed and in whom test was abnormal (% of test performed). Data available for 9 cohorts. Data shown as median and range of median values of all cohorts, only shown for cohorts where these specific tests are performed. (#) Spirometry + albuterol: spirometry with reversibility testing; spirometry-: spirometry without reversibility testing. (%) Measured during inclusion in cohort. (*) Questionnaires concerning daily functioning, health domains and quality of life. (^) Other, namely research tests, lung SPECT CT. CO carbon monoxide, CPET cardiac pulmonary exercise test (incl. VO₂ max measurement), EEG electroencephalography, ECG electrocardiogram, ESR erythrocyte sedimentation rate, NCF neurocognitive functioning, POTS postural orthostatic tachycardia syndrome, Q questionnaire, QoL Quality of Life. f Therapy prescribed in PPCC cohorts, size of box represents number of cohorts using this type of therapy. Data available for 8 cohorts. CBT cognitive behavioral therapy, (@) ASP activity schedule pacing. g Type of health care providers involved in care programs.

Fig. 2. Requirements for PPCC guideline development.

Minimal required set of topics future international PPCC guideline should address.

Fig. 3. Priorities in PPCC.

IP4C framework: priorities in PPCC care, research and international collaboration.