A Survey of Demographics, Symptom Course, Family History, and Barriers to Treatment in Children with Pediatric Acute-Onset Neuropsychiatric Disorders and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections

SUMMARY

“A Survey of Demographics, Symptom Course, Family History and Burden Among Children Diagnosed with PANS and PANDAS” examines the demographics, symptom progression, family history, and barriers to treatment in children diagnosed with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).

A survey of 441 primary caregivers responded to the survey, covering 490 PANS/PANDAS children under the age of 18, revealed that the majority of children (83.4%) exhibited obsessive-compulsive disorder (OCD) symptoms at the onset of illness, followed closely by severe separation anxiety, motor tics, and mood changes. Children exhibited a range of co-occurring, abrupt onset psychiatric and somatic symptoms such as irritability, emotional lability, food restrictions, and urinary frequency. In addition, the survey found comorbid conditions such as ADHD, anxiety, and sleep disturbances were common. 89% of respondents reported that symptoms fluctuated over time, often worsening during flare-ups. In the survey sample, a total of 83% of children received a diagnosis of PANS or PANDAS from a medical or behavioral professional. Most cases were reportedly preceded by strep infections
Family history revealed a high prevalence of autoimmune and inflammatory disorders, particularly among mothers, indicating a potential hereditary or environmental predisposition. Diagnoses such as Hashimoto’s thyroiditis, rheumatoid arthritis, and lupus were frequently reported in first-degree relatives. The most frequent medical diagnoses in first- and second-degree relatives were allergies and asthma.

Over half of children represented in the survey had taken antibiotics, about one-quarter had undergone intravenous immunoglobulin (IVIG) treatment, and nearly half of the children had received CBT and SSRIs. Additionally, 31.15% had ER visits related to PANS/PANDAS symptoms. In order to obtain treatment, 62.3% traveled more than 50 miles, with 15.6% reportedly traveling more than 500 miles. Burdens related to travel and costs may have impacted the type of treatment received.
Caregivers, particularly mothers, reported high levels of stress, anxiety, depression, and burden, with the average burden score exceeding the threshold for caregiver burnout. Additionally, families faced serious barriers to care, including delays in diagnosis, limited access to knowledgeable providers, and out-of-pocket costs for treatment.

LINK TO PAPER: https://doi.org/10.1089/cap.2022.0063