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Longitudinal outcomes of children with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS)

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Abstract

Little is known about the natural history of children with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS). This study prospectively followed 33 children with PANDAS for up to 4.8 years (mean 3.3 ± 0.7 years) after enrollment in a 24-week randomized, double-blind, placebo-controlled trial of intravenous immunoglobulin (IVIG) (N = 35). Fourteen of eighteen children randomized to placebo received open label IVIG 6 weeks after the blinded infusion, so follow-up results reported below largely reflect outcomes in a population of children who received at least one dose of IVIG. Telephone interviews with the parents of participants found that at the time of phone follow-up, 29 (88%) were not experiencing clinically significant obsessive–compulsive symptoms. During the interim period (6–57 months after entering the clinical trial), 24 (72%) had experienced at least one exacerbation of PANDAS symptoms, with a median of one exacerbation per child (range 1–12; interquartile range 0–3). A variety of treatment modalities, including antibiotics, IVIG, psychiatric medications, cognitive behavioral therapy, and others, were used to treat these exacerbations, and were often used in combination. The outcomes of this cohort are better than those previously reported for childhood-onset OCD, which may support conceptualization of PANDAS as a subacute illness similar to Sydenham chorea. However, some children developed a chronic course of illness, highlighting the need for research that identifies specific symptoms or biomarkers that can be used to predict the longitudinal course of symptoms in PANDAS.

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Acknowledgements

The authors would like to thank all the participants and their families, as well as Karen Amer and Lorraine Lougee for their assistance with data collection. Grifols Laboratories supplied IVIG for the trial, as well as financial support to the Yale investigators. Additional support was provided by the NIH Bench-to-Bedside Program and the Intramural Research Program of the National Institute of Mental Health (NCT 01281969; ZIAMH002666; Protocol 11-M-0058).

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Correspondence to Rebecca Hommer.

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Conflicts of interest

Dr. Leckman has received grant or research support from the National Institutes of Health, the UBS Optimus Foundation, and the Open Road Alliance. He has served on the advisory boards/DSMB of the Brain and Behavior Research Foundation, the National Organization for Rare Disorders, Fondazione Child, the European Muilticentre Tics in Children Studies, and How I Decide. He has authored the Yale Global Tic Severity Scale (YGTSS) assessment tool, which is open access. He has received honoraria from the European Society for the Study of Tourette Syndrome and the Brazilian Psychiatric Association. He has received royalties from John Wiley and Sons, McGraw Hill, and Oxford University Press. He has received travel expenses from the University of Illinois Chicago, Cornell Weill Medical College, the Medical University of South Carolina, Rutgers University, the British Academy, and the Brazilian Psychiatric Association. He has received additional support from Anne Çocuk Eğitim Vakfi (AÇEV; Mother Child Education Foundation) and private donors. Drs. Williams, Swedo, Farmer, Grant, Hommer, and Mss. Leon, D’Souza, and Kessler report no biomedical financial interests or potential conflicts of interest.

Ethical standards

All research was conducted in accordance with the ethical standards described by the Declaration of Helsinki and according to standards established by the National Institute of Health’s Combined NeuroScience Institutional Review Board. All participants gave assent and their parent or guardian provided informed consent prior to study participation.

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Leon, J., Hommer, R., Grant, P. et al. Longitudinal outcomes of children with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS). Eur Child Adolesc Psychiatry 27, 637–643 (2018). https://doi.org/10.1007/s00787-017-1077-9

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  • DOI: https://doi.org/10.1007/s00787-017-1077-9

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