The Gatekeeper's Dilemma: Why Sustainable Functional/Dissociative Seizure Care Begins With Referral.

BACKGROUND AND

OBJECTIVES

Functional neurologic disorders (FNDs) are highly prevalent across neurologic service lines, with functional/dissociative seizures (FDSs) being the most common FND symptom. Despite clear diagnostic criteria and evidence-based treatments, people with FDSs are frequently misdiagnosed, stigmatized, or routed through ineffective care. A key driver of these gaps is the referral process. This study evaluates referral patterns into an established ambulatory, multidisciplinary FDS program, identifies reasons for referral ineligibility, and proposes targeted interventions to promote sustainable development.

METHODS

A retrospective analysis was conducted of patients referred to the University of Colorado (CU) FDS treatment program over 6 months. Demographics, referral characteristics, documentation availability, and program enrollment were abstracted from the electronic health record. Multivariable logistic regression identified factors associated with referral ineligibility, fulfillment of International League Against Epilepsy (ILAE) FDS criteria, and successful acquisition of diagnostic records.

RESULTS

Of 318 individuals referred (mean age 38 years; 72% female; 67% White, 15% Hispanic/Latino), 47% were enrolled in the CU FDS program, while 53% were ineligible, primarily because of incomplete diagnostic documentation (30%). While 56% of referrals originated from neurology, only 42% met ILAE-concordant, probable diagnostic criteria. Multivariable logistic regression identified insurance status as the strongest predictor of ineligibility, with uninsured patients (odds ratio (OR) 12.40, p < 0.01) and Medicaid recipients (OR 2.39, p = 0.01) facing higher risk of ineligibility than those with private insurance. Conversely, inpatient status (OR 0.15, 0 < 0.01) and Hispanic ethnicity (OR 0.40, p = 0.04) were protective against ineligibility, and patients referred from inpatient settings were more likely to meet probable ILAE criteria (OR 10.08, p < 0.01).

DISCUSSION: FDS care is a shared clinical responsibility. Health care professionals' referral practices are critical for the feasibility and sustainability of FDS programs, particularly when referring patients who use public insurance (i.e., Medicaid). Of equal importance is understanding the limitations of health care systems' operational processes (e.g., scheduling). Unless purposefully included, FDS is not a default diagnosis. Therefore, when operational processes change, FDS is easily forgotten. As such, active engagement through thoughtful referral practices, use of established diagnostic guidelines (e.g., ILAE recommendations), and maintaining accountability for the patient rather than relying on referral as a final step are essential.