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

[SNT Gatchaman]

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)

 

[SNT Gatchaman]

Concluding —

In general, PPCC is approached as a multisystem disease, and diagnosed and treated by multidisciplinary teams. Standard screening tests such as electrocardiogram and spirometry do not sufficiently shed light on PPCC’s pathophysiology, yet they are critical for evaluating its differential diagnosis. The frequency of more in-depth evaluation varied substantially, which was surprising considering existing adult guidelines recommending a wide range of assessments.

This analysis underscores that PPCC care programs lack consensus concerning diagnostics and therapeutics, highlighting a need for further research into etiology, and treatments to inform evidence based guidelines and organization of care. We hypothesize that these differences stem from differences in local policies, the different medical specialist involved at each center and a lack of experience with and understanding of PPCC by the medical community as a whole during the time of data collection.

Our data show a need for standardized, comprehensive evidence-based guidance on diagnostic and therapeutic approaches; and a more nuanced differentiation between patients, to determine which children require what type of diagnostic evaluations, based on symptoms and burden of disease.

Most of the therapeutic interventions prescribed in our cohorts are derived from other post-viral syndromes but lack scientific substantiation and evidence for effectiveness in PPCC. Most were focused primarily on rehabilitation care. Despite the number of children and young people affected by PPCC worldwide, research concerning PPCC is still scarce. IP4C acknowledges lack of evidence as a main reason for lack of uniformity between care programs and the difficulty of developing a PPCC guideline. In adults, Long COVID Europe and WHO Europe have acknowledged this and are advocating governments and health authorities to focus on PCC, by improving recognition and knowledge sharing by fully equipped health systems; well-coordinated research; and evidence-based, safe and effective rehabilitation. PPCC deserves the same priority.

 

[rvallee]

Most of the therapeutic interventions prescribed in our cohorts are derived from other post-viral syndromes but lack scientific substantiation and evidence for effectiveness in PPCC

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

Most of the therapeutic interventions derived from other post-viral syndromes lack scientific substantiation and evidence for effectiveness

And yet:

In adults, Long COVID Europe and WHO Europe have acknowledged this and are advocating governments and health authorities to focus on PCC, by improving recognition and knowledge sharing by fully equipped health systems

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.

 

[Sean]

stubbornly obsess over staying on the same vector,

Vector Based Medicine.

So what you like about it, but at least it isn't Evidence Based Medicine.