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Background  It is unclear how to best measure the complex symptom presentation of pediatric acute-onset neuropsychiatric syndrome (PANS).    Methods  Well-characterized participants of a 2–5 year follow-up study ( n  = 34; 56% male) underwent clinical evaluations and completed scales assessing global symptom severity, functional impairment and specific psychiatric symptoms. We explored inter-correlations between the measures and used intraclass correlation coefficients to evaluate the agreement between clinician-, parent- and child ratings of the same constructs.    Results  Ratings on symptom-specific measures varied largely between participants. Agreement between informants was excellent on functional scales, fair-to-moderate on global severity scales and mixed on symptom-specific scales. Clinician-rated global and functional measures had stronger inter-correlations with parent- and child-rated functional measures than with symptom-specific measures.    Conclusions  General instruments assessing global severity and functioning are well suited for the assessment and follow-up of PANS, but should be complemented by symptom-specific scales representative of core symptoms.    Supplementary Information  The online version contains supplementary material available at 10.1186/s12888-021-03450-5.

Measuring clinical outcomes in children with pediatric acute-onset neuropsychiatric syndrome: data from a 2–5 year follow-up study