A retrospective survey of patient experiences during hospital-based isolation for tuberculosis in new York City

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BACKGROUND To prevent tuberculosis (TB) transmission, individuals with presumed or confirmed respiratory TB are isolated until they are no longer considered infectious. Minimal research exists on the impact of prolonged isolation on persons with TB (PWTB). We surveyed PWTB following hospital discharge when hospital-based isolation (HBI) occurred. DESIGN From September 2023 to June 2024, adult PWTB who had experienced HBI were invited to participate in a survey at a New York City Health Department Chest-clinic. The survey was administered by project coordinators or self-administered by patients. Survey questions were adapted from validated instruments, and assessed mental adjustments to TB, access to tangible support, and incurred economic costs during HBI. RESULTS Fifty PWTB completed the survey. Participants were in HBI for a median of 23 [IQR: 13-38] days. Survey items assessing cognitive adjustment indicate fighting spirit was the most reported (91% average, range 80%-96%) cognitive strategy used. However, patients also reported feeling hopeless and helpless (28% average, range 20%-44%) and using cognitive avoidance strategies (69% average, range 62%-82%) while in HBI. Sixty-two percent of participants reported lacking at least one form of tangible support (e.g., inability to easily find someone to stay with during an emergency). Thirty-seven (74%) participants reported a loss of employment income and thirty-nine (78%) reported difficulties paying for usual expenses. CONCLUSION Participants reported financial, social, and cognitive adjustment challenges during HBI for TB. Pathways to reduce HBI duration and approaches to provide or direct patients to sources of support are needed.