Parent perceptions of various treatment approaches for PANS and PANDAS

SUMMARY

“Parent perceptions of various treatment approaches for PANS and PANDAS” investigates parent perceptions of various forms of treatment that may be implemented by the PANS/PANDAS multidisciplinary care team.

The survey conducted for this study found that inflammation/infection mitigation strategies (e.g., antibiotics, NSAIDs, IVIG) was the most endorsed form of treatment by parents and caregivers, followed by supplements (e.g. probiotics and Vitamin D) and lifestyle interventions (e.g., diet and exercise changes). Conversely, psychiatric/psychotropic interventions, including antidepressants, antipsychotics, and brain stimulation techniques, were rated the least appropriate, possibly due to concerns about invasiveness or side effects.

Psychological treatments such as exposure and response prevention (ERP), despite being an evidence-based intervention for OCD, were also viewed unfavorably. This may be because parents and caregivers may perceive a disconnect between psychological interventions and the biological nature of PANS and PANDAS even though evidence shows ERP may be efficacious in treating the residual OCD symptoms during or after acute treatment for PANS/PANDAS.

The results highlight that treatment perceptions are influenced by factors such as prior use, OCD severity, and potentially, unmet expectations or lack of knowledge about treatment efficacy. This study emphasizes the need for clinicians to actively engage with families in treatment planning and underscores the importance of disseminating evidence-based research to families managing these conditions.

LINK TO PAPER: https://doi.org/10.1016/j.jad.2024.10.100