Development and Evaluation of a Toolkit for Caregivers of Children Diagnosed with Pediatric Acute-Onset Neuropsychiatric Syndrome

Background: Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a rare pediatric disorder that is characterized by an abrupt onset of obsessive-compulsive tendencies and restrictive eating behaviors. PANS can mirror many other diseases, has an unknown cause, and has symptoms that wax and wane, making it hard to diagnose. All of these contribute to a high caregiver burden which increases parental stress. Burden is rarely assessed in this population and no resources are offered. Toolkits are valuable ways to offer adaptable resources and help expedite getting research into practice. Methods: A toolkit was created using a free online program called Canva. It was patterned after other toolkits from the following national organizations: Alliance to Solve PANS & Immune-Related Encephalopathies (ASPIRE), Neuroimmune and the PANDAS Network. The Transactional Theory of Stress and Coping guided the interventions in the toolkit, which was based on the five categories in the Caregiver Burden Inventory (CBI). The CBI is a validated tool in pediatric and PANS populations. We identified children with a PANS diagnosis in one urban family practice and their caregivers were sent the CBI to complete. Regardless of scores, the toolkit was sent to all caregivers electronically. Two months after the toolkit was sent to the caregivers, the CBI was resent. Feasibility, satisfaction and usability of the toolkit was measured using post surveys of the caregivers and the clinical staff. Results: Of the 43 eligible PANS families, 13 of the caregivers responded and completed the first CBI. One caregiver took the second CBI but due to the low response rate the results were not included. 5 caregivers completed the survey regarding the satisfaction and usability of the toolkit. 7 clinical staff took the survey regarding feasibility of continuing screening for caregiver burden and disseminating the toolkit in the clinic. Post-intervention 80% of families (4/5) felt that the toolkit was easy to access and 60% (3/5) agreed that the toolkit was useful. Only 20% (1/5) of families used the resources in the toolkit and thought that they would use the resources in the future. This family had a child diagnosed less than a year ago. Qualitative feedback from all five families that responded to post-survey, reiterated that had they received the toolkit earlier in the diagnosis period it would have been more useful. Conclusions: Further study is needed to determine whether or not the toolkit would decrease caregiver burden over a longer period of time. The toolkit was found to be most useful for families whose children had been diagnosed in the last year.