International Care programs for Pediatric Post-COVID Condition Long COVID and the way forward, 2024, Brackel et al.

International Care programs for Pediatric Post-COVID Condition Long COVID and the way forward
Brackel, Caroline L. H.; Noij, Lieke C. E.; Vijverberg, Susanne J. H.; Legghe, Camille L.; Maitland-van der Zee, Anke H.; van Goudoever, Johannes B.; Buonsenso, Danilo; Munblit, Daniel; Sigfrid, Louise; McFarland, Sammie; Anmyr, Lena; Ashkenazi-Hoffnung, Liat; Bellinat, Ana P. N.; Dias, Nathália L. S.; Edwards, Amy; Fashina, Tomini; Juraški, Romana Gjergja; Gonçalves, Ana L. N.; Hansted, Edita; Herczeg, Vivien; Hertting, Olof; Jankauskaite, Lina N.; Kaswandani, Nastiti; Kevalas, Rimantas; Krivácsy, Péter; Lorenz, Michael; Malone, Laura A.; McVoy, Molly; Miller, David W.; Morrow, Amanda K.; Nugawela, Manjula D.; Oliveira, Carlos R.; Oliveira, Pablo R. S.; Osmanov, Ismael M.; Overmars, Isabella M.; Paintsil, Elijah; Pinto Pereira, Snehal M.; Prawira, Yogi; Putri, Nina Dwi; Ramos, Regina C. F.; Rasche, Marius; Ryd-Rinder, Malin; De Rose, Christina; Samitova, Elmira; Jovanović, Tatjana Savić; Say, Daniela; Scott, Janet T.; Shachar-Lavie, Iris; Shafran, Roz; Shmueli, Einat; Snipaitiene, Ausra; Stephenson, Terence; Ténai, Nikolett; Tosif, Shidan; Turkalj, Mirjana; Valentini, Piero; Vasconcelos, Luydson R. S.; Villard, Li; Vilser, Daniel; Hashimoto, Simone; Terheggen-Lagro, Suzanne W. J.

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.

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. 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. 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.

Link | PDF (Nature Pediatric Research)

 

Concluding —

 

And yet they have been widely used from day 1. Evidence is not needed here, this is evidence-based medicine. Because in truth:

And yet:

I haven't seen any of this. The patients have been there all along, screaming into the void, but the systems are still stubbornly clinging to the failed biopsychosocial ideology and useless-or-harmful rehabilitation.

So close to getting it. Yet still as far as ever. When you refuse to change direction, when you stubbornly obsess over staying on the same vector, it doesn't matter how close you are to getting it, every step will take you further from it. It's like a black hole of knowledge, where space and time dimensions reverse. Here the future is always further away from getting it.