Access to Care in Pediatric Acute-Onset Neuropsychiatric Syndrome: A Survey of Families’ Journeys to and Experiences with Intravenous Immunoglobulin Treatment

Abstract

Background:

Pediatric acute-onset neuropsychiatric syndrome (PANS) is characterized by abrupt-onset neuropsychiatric symptoms, often infection-triggered. Intravenous immunoglobulin (IVIG) is recommended by expert guidelines in select cases, yet insurance denials and high out-of-pocket costs have been barriers to access.

Methods:

We surveyed 60 caregivers and adult PANS patients who pursued IVIG therapy, collecting data on insurance coverage, treatment protocols, financial strategies, and quality of life (QoL) before and after treatment.

Results:

Most patients (88%) eventually received IVIG, 10% were still in pursuit, and 2% discontinued trying. Insurance approval without appeal occurred for 24%, often for patients with comorbidities for which IVIG is typically covered. Only 5% of those receiving IVIG for PANS alone were treated within a month of the doctor’s order compared with 38% of those receiving IVIG for comorbidities plus PANS; 14% waited ≥9 months. Financial strain was routine: at least one-third of families without “substantial” insurance coverage (≥70% of expenses) reported extreme stress (10 on scale of 1 to 10), 58% borrowed money, and 21% sold major assets. Even families with substantial insurance coverage commonly depleted savings or took on additional work. Before IVIG, patient QoL ratings were poor (means 2.1–2.9 across domains), with over one-third selecting the lowest possible overall QoL rating. During the 6 months following IVIG initiation, mean ratings rose to 6.2–6.8, with over 60% reporting “good” to “exceedingly good” overall outcomes. Caregivers reported parallel gains, with family QoL ratings rising from 2.4–4.0 pretreatment to 5.7–6.6 posttreatment.

Conclusions:

Families pursuing IVIG for PANS reported prolonged delays, repeated denials, and financial strain, often resorting to loans, asset sales, and additional work. Despite these burdens, IVIG was correlated with marked improvements in perceived QoL for patients and caregivers.