1. Parent perceptions of various treatment approaches for PANS and PANDAS.
- Author
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Dailey MM, Colombo GM, Pinciotti CM, Sadek SJ, Muscal E, Saxena K, Goodman WK, and Storch EA
- Subjects
- Humans, Female, Male, Child, Adolescent, Adult, Surveys and Questionnaires, Psychotherapy methods, Immunoglobulins, Intravenous therapeutic use, Anti-Bacterial Agents therapeutic use, Anti-Inflammatory Agents, Non-Steroidal therapeutic use, Obsessive-Compulsive Disorder therapy, Parents psychology, Streptococcal Infections therapy, Autoimmune Diseases therapy
- Abstract
Pediatric autoimmune neuropsychiatric disorder (PANDAS) is characterized by sudden, dramatic onset obsessive-compulsive disorder (OCD) following a Group A Streptococcus infection. Pediatric acute neuropsychiatric syndrome (PANS) refers to sudden, dramatic onset OCD and/or restricted eating triggered by infections and other inflammatory reactions. A variety of treatments have been utilized for PANS/PANDAS; however, there is no "gold standard" intervention protocol. Parental expectations of a given treatment have been found to improve a child's overall treatment experience; however, parent attitudes towards PANS/PANDAS treatments are unknown, which was the purpose of this study. An online survey was distributed to 208 parents of children with self-reported PANS/PANDAS. Treatments were grouped together within overarching categories (i.e., psychotherapy, psychiatric/psychotropic, inflammation/infection mitigation, supplements, lifestyle changes, and surgery). Categorically, parents rated inflammation/infection mitigation interventions and lifestyle changes as most appropriate, and psychiatric/psychotropic interventions as least appropriate. At the individual level, treatments including antibiotics, non-steroidal anti-inflammatory drugs, intravenous immunoglobulin, and family counseling received ratings between "appropriate" and "extremely appropriate" Alternatively, treatments including deep brain stimulation, transcranial magnetic stimulation, antidepressant medications, and exposure and response prevention received ratings between "inappropriate" and "extremely inappropriate." Study limitations include a lack of gender and race representation in our sample. Findings indicate a need for dissemination of current, relevant research to the parent population as well as further examination of the parent experience throughout onset, diagnosis, and treatment., Competing Interests: Declaration of competing interest Dr. Muscal sits on the advisory board for SOBI Pharmaceuticals. Dr. Storch reports receiving research funding to his institution from the Ream Foundation, International OCD Foundation, and NIH. He was formerly a consultant for Brainsway and Biohaven Pharmaceuticals in the past 24 months. He owns stock less than $5000 in NView/Proem for distribution related to the YBOCS scales. He receives book royalties from Elsevier, Wiley, Oxford, American Psychological Association, Guildford, Springer, Routledge, and Jessica Kingsley. Dr. Goodman receives royalties from Nview, LLC and OCDscales, LLC and research support from NIH (UH3NS100549), IOCDF and McNair Foundation. Ms. Dailey, Ms. Colombo, Dr. Pinciotti, Ms. Sadek, and Dr. Saxena, have no disclosures to report., (Copyright © 2024 Elsevier B.V. All rights reserved.)
- Published
- 2025
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