International Guidelines
January 2023
As of January 2023, two sets of international, peer-reviewed treatment guidelines for PANS and PANDAS have been published. These are Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome (Parts I, II, and III, 2017) and Clinical guidance for diagnosis and management of suspected Pediatric Acute-onset Neuropsychiatric Syndrome in the Nordic countries (2021).
JCAP – Clinical Management of PANS
Part 1 – Psychiatric and Behavioural Interventions- Click here
Thienemann, M., Murphy, T., Leckman, J., Shaw, R., Williams, K., Kapphahn, C., Frankovich, J., Geller, D., Bernstein, G., Chang, K., Elia, J., Swedo, S. (2017) Journal of Child and Adolescent Psychopharmacology. V27(7) pp1-8
Part 2 – Use of Immunomodulatory Therapies – Click here
Frankovich, J., Swedo, S., Murphy, T., Dale, R. C., Agalliu, D., Williams, K., Daines, M., Hornig, M., Chugani, H., Sanger, T., Muscal, E., Pasternack, M., Cooperstock, M., Gans, H., Zhang, Y., Cunningham, M., Bernstein, G., Bromberg, R., Willett, T., Brown, K., Farhadian, B., Chang,K., Geller, D., Hernandez, J., Sherr, J., Shaw, R., Latimer, E., Leckman, J., Thienemann, M., PANS PANDAS Consortium (2017) Journal of Child and Adolescent Psychopharmacology. V27(7) pp1-16
Part 3 – Treatment and Prevention of Infection – Click here
Cooperstock, M., Swedo, S., Pasternack, M., Murphy, T.; for the PANS PANDAS Consortium (2017) Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Journal of Child and Adolescent Psychopharmacology. V27(7) pp1-13
Nordic Guidelines
Clinical guidance for diagnosis and management of PANS in the Nordic Countries – Click here
In 2021 a Nordic-UK working group published peer-reviewed clinical guidelines for the diagnosis and management of suspected PANS in the Nordic countries [39]. These guidelines, co-authored by British Paediatric Neurology Association members, recommend a comprehensive medical history work-up which includes symptom assessment related to infectious, autoimmune and rheumatic diseases as well as psychiatric, neurologic and neurodevelopmental diseases. The treatment aims outlined in the Nordic countries guidelines are threefold: treating ongoing verified infections, suspected inflammation and mental health symptoms.
Pfeiffer, H., Wickstrom, R., Skov, L., Sørensen, C., Sandvig, I., Gjone, I., Ygberg, S., de Visscher, C., Nordstrom, S., Herner, L., Hesselmark, E., Hedderly, T., Lim, M., Debes, N., Acta Paediatrica. 2021;110:3153–3160.
The PANS PANDAS Working Group does not recommend any particular guidelines. However, in the absence of NICE guidelines, if patients want to share the existing international peer-reviewed guidelines with their doctors for them to use at their discretion, they may do so, however there is no current requirement for doctors to follow them.
