Efficacy Of, and Barriers To, Treatment Options for Pans/Pandas

Background: PANS/PANDAS are pediatric autoimmune disorders that cause an acute-onset of OCD-like symptoms and/or severe restricted eating, as well as anxiety, irritation, deterioration of fine motor skills, hyperactivity, and other psychiatric symptoms. An estimated 1-2% of the pediatric population is affected. Currently, there is little research published on the treatment options for PANS/PANDAS and there is no evidence-based consensus on the best treatment option. Purpose: This study aimed to discover the efficacy of, and barriers to, available treatment options for PANS/PANDAS. Methods: A convenience sample of individuals diagnosed with PANS/PANDAS or their parent/caregiver was recruited anonymously through Facebook support groups. Participants completed an 18-item researcher-developed survey via REDCap© and optional open-ended responses to allow elaboration. Items included non-identifying demographic information and questions related to diagnosis, treatment, co-occurring disorders, and barriers to care. Descriptive data were obtained using REDCap© and narrative responses were categorized and analyzed in the context of the descriptive findings. Results: There were a total of 90 responses. The majority of participants utilized antibiotics or NSAIDs as their primary treatment option. However, many participants were interested in trying IVIG or homeopathy. The most common challenges to finding care were a lack of psychiatric providers in a participant’s area, a lack of provider knowledge about PANS/PANDAS, and a lack of financial means to access treatment. Both rural and urban responders stated similar challenges to finding treatment. However, rural residents in this sample experienced fewer delays in diagnosis and treatment initiation. Conclusions/Implications: More research is needed to establish an evidence base related to prevalence, diagnosis, and treatment of PANS/PANDAS, with a goal of future inclusion in the DSM. Content related to PANS/PANDAS should be incorporated in healthcare provider programs to raise awareness of these disorders and facilitate timely diagnosis and treatment.