Tang, A. W., Appel, H. J., Bennett, S. C., Forsyth, L. H., Glasser, S. K., Jarka, M. A., Kory, P. D., Malik, A. N., Martonoffy, A. I., Wahlin, L. K., Williams, T. T., Woodin, N. A., Woodin, L. C., Miller, I. K. T., & Miller, L. G. (2021). Treatment barriers in PANS/PANDAS: Observations from eleven health care provider families. Families, Systems, & Health. Advance online publication. DOI: 10.1037/fsh0000602
Despite published diagnostic and treatment guidelines for this condition, there are long delays in obtaining appropriate care. We sought to identify health care system barriers to timely treatment by examining cases of PANDAS/PANS occurring in children of health care professionals.
- Parents included 11 physicians, 2 mental health professionals, 2 nurses, and a PharmD.
Nine cases (82%) had “very delayed” diagnosis and treatment (>4 weeks after onset).
- The most commonly encountered causes for treatment delay were clinician lack of awareness (82%), clinician skepticism (82%), overdependence on diagnostic testing (91%), and out-of-pocket expenses >$100 US (82%).
- Other common challenges included difficulties finding a provider to spearhead care (64%), psychological misdiagnosis (55%), and children’s suppression of behaviors during assessments (55%).