Patient and caregiver experiences of barriers to longitudinal care in coccidioidal meningitis in California's central valley: a qualitative study.

BACKGROUND

Coccidioidomycosis (Valley fever) is an endemic fungal infection of the southwestern United States, with an estimated 273,000 symptomatic infections, 23,000 hospitalizations, and 900 deaths annually. Coccidioidal meningitis, the most severe manifestation, requires lifelong antifungal therapy and carries high rates of rehospitalization, nonadherence, and mortality. Quantitative studies have documented poor outcomes, but the barriers driving these outcomes have not been examined from the patient's perspective. This study aimed to characterize structural and systemic barriers to longitudinal care as experienced by patients with coccidioidal meningitis and their caregivers in California's Central Valley.

METHODS

We conducted semi-structured interviews with patients with coccidioidal meningitis and caregivers at a tertiary referral center serving California's Central Valley. Interviews explored pathways to diagnosis, treatment experiences, care coordination, and financial burden. Transcripts were analyzed using thematic analysis informed by the Consolidated Framework for Implementation Research.

FINDINGS: Ten patients and three caregivers participated. Participants were predominantly Hispanic and publicly insured. Five themes emerged: diagnostic delays, with patients requesting coccidioidomycosis testing themselves; gaps in patient awareness and provider communication of disease severity; fragmented care coordination; insurance barriers, including narrow specialist networks and pharmacy-level obstacles; and financial toxicity, with patients unable to work and forgoing care due to cost. Caregivers served as essential advocates, filling gaps in information retention and care coordination.

INTERPRETATION: Patients with coccidioidal meningitis described multiple barriers from initial presentation through ongoing management. These findings suggest that improving outcomes requires attention to the systems patients and their caregivers navigate after diagnosis, not solely to clinical management.

FUNDING: University of California, San Francisco, Fresno, and Inspire Health Medical Group Intramural grant.