“That's not my silo”: Navigating fragmented long COVID care in the mid-Atlantic United States

Long COVID is a chronic illness affecting multiple organ systems, which can be at odds with a highly specialized and siloed U.S. healthcare system. Patients frequently see multiple specialists for diverse symptoms, creating substantial coordination challenges. We conducted a qualitative study using semi-structured interviews with 69 U.S. Mid-Atlantic adults diagnosed with or suspected of having Long COVID, recruited through a Long COVID clinic, MyChart patient-portal outreach, and snowball sampling. Interviews were conducted via Zoom, phone, or in person, audio-recorded, transcribed, and analyzed using the Framework Approach. Participants described significant difficulty navigating a fragmented healthcare system characterized by siloed care, communication breakdowns, long wait times, and unclear provider responsibilities, as well as difficulties obtaining a diagnosis. When coordination failed, patients were often forced to organize and direct their own healthcare, a task that was cognitively and physically taxing, particularly for those experiencing brain fog and fatigue, and, for some, ultimately led to delaying or forgoing care. Strengthening care coordination for Long COVID could reduce patient burden and improve access to care. Needed strategies include standardized diagnostic definitions, enhanced primary care roles, interoperable referral pathways, and institutional case-conferencing to clarify provider responsibilities. Patient navigators, expanded telehealth options, and community-based support, especially culturally tailored services for disproportionately affected groups, may further reduce fragmentation, scheduling strain, and inequities. Addressing these systemic barriers is essential to creating a more efficient, patient-centered care experience in which patients are no longer responsible for coordinating their own complex care. • A highly specialized health system is not set up to address multisystem Long COVID • Patients often see multiple specialists, complicating care coordination • Breakdowns in coordination force patients to manage their own care • Self-managing care is overwhelming for patients with debilitating symptoms • Poor coordination results in missed visits, medical oversights, and patient dropout