Patient Satisfaction and Treatments Offered to Swedish Patients with Suspected Pediatric Acute-Onset Neuropsychiatric Syndrome and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections

Objectives: Pediatric acute-onset neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) are subtypes of Obsessive-Compulsive Disorder (OCD) with suggested autoimmune etiology. Immunomodulatory treatments have been introduced as treatment options. A recent systematic review concluded that the evidence for all treatment options for PANS and PANDAS is inconclusive. However, case reports and clinical experience suggest that antibiotics and immunomodulatory treatment may be helpful. Treatment may also affect the patients' satisfaction with health care services offered. This study aims to describe the treatments given to a cohort of Swedish patients with suspected PANS and PANDAS, the patient rated treatment effects, and to establish if any specific treatment predicts higher patient satisfaction. Methods: Fifty-three patients (m = 33, f = 20, median age = 14, age range = 4–36) with suspected PANS or PANDAS were enrolled and assessed for PANS and PANDAS caseness, treatments given, treatment effects, global improvement, and patient satisfaction. Cases with confirmed and suspected PANS or PANDAS were compared regarding the frequency of treatments given and treatment effect. A linear regression model was used to see if treatments given or global improvement predicted patient satisfaction. Results: Twenty-four participants fulfilled criteria for PANS or PANDAS and 29 did not. The most common treatments given were antibiotics (88%), nonsteroidal anti-inflammatory drugs (67%), cognitive behavioral therapy (53%), and selective serotonin reuptake inhibitors (42%). There were no major differences between confirmed and suspected cases regarding what treatments they had received or their effect. Patient satisfaction was predicted by overall clinical improvement at the time of assessment. Antibiotics and intravenous immunoglobulin (IVIG) were rated as the most successful treatments by participants and were associated with higher patient satisfaction. Conclusions: It was more common that patients had received antibiotics than common psychiatric treatments for their psychiatric symptoms. Antibiotics and IVIG were experienced as effective treatments by the patients. Patient satisfaction was on average moderately low, and higher patient satisfaction was associated with global clinical improvement.