Family impacts reported by parents raising children with pediatric acute-onset neuropsychiatric syndrome (PANS)
The purpose of this online quantitative study was to explore the impact to families when raising a child diagnosed with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), including the subsets of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal (PANDAS), and Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorder (PITAND) and what variables may mitigate the impact. The demographic variables examined in this study included relationship status of the person completing the survey, parent and child age, parent and child ethnicity, parent level of education, parent relationship status, and household income. Illness factor variables included the diagnosis, date of onset of symptoms, date of diagnosis, history of family autoimmune disorders, restricted food intake, who first suspected PANS, who diagnosed PANS, number of professionals seen before diagnosis, who and how child is currently being or has ever been treated, and if travel over 50 miles is or was necessary for treatment. Obsessive-Compulsive Disorder (OCD) symptom severity was measured with the Children’s Yale-Brown Obsessive-Compulsive Scale – Parent Report (CY-BOCS-PR). Total impact on the family was measured with the Impact on Family Scale (IOFS) (Stein & Jessop, 2003). Parents were recruited through PANDASNetwork.org and were asked to complete the online survey which included the demographic and illness questions, the CY-BOCS-PR, and the IOFS assessment. This study examined the differences between demographic variables, symptom severity, and duration between onset of symptoms and diagnosis and their impact on the family’s total score on the IOFS tool using three research questions. Subscales from the IOFS assessment were also analyzed. Statistical comparisons were completed to analyze what influence different variables had on the total impact on the family and the IOFS subscales. Significant relationships were found to exist between parent’s relationship status and OCD symptom severity when compared to the total impact on the family. No significant relationship was found for duration between onset of symptoms and diagnosis and the total IOFS score but significance was found on the financial and parental strain subscales of the IOFS. OCD symptom severity appeared to have the most profound impact on the family as significant relationships were found on the total impact on the family scores as well as the financial, parental strain, and disruption of social and family relationships subscales. A primary goal derived from the findings of this study aims to help parents and children gain understanding from the professionals who treat and work with those diagnosed with PANS. Although this illness remains controversial and it is still unknown why this devastating disorder develops in some children, it is known that many children and families are affected and are frantically seeking answers. It is hoped that a greater sense of urgency for more research will be roused by this investigation.