Clinical characteristics and outcomes of localized versus disseminated nontuberculous mycobacterial disease in people living with HIV, 2004–2025

Abstract Purpose Advanced or untreated HIV remains an important risk factor for opportunistic infections, including nontuberculous mycobacteria (NTM). We assessed disease extent, recurrence, and mortality in adults with HIV and NTM disease over 21 years at University Hospital Düsseldorf. Methods We conducted a retrospective study at University Hospital Düsseldorf of adults with HIV and microbiologically confirmed or clinically diagnosed NTM disease between April 2004 and April 2025. Dissemination was defined as NTM detection at a normally sterile site, involvement of at least two non-contiguous sites, or clinically diagnosed multifocal or systemic disease. Survival was assessed using Kaplan-Meier analysis and Cox regression. Results Fifty patients were included; median age was 42 years, 68% were male, median CD4 count was 27 cells/µL and 52% were receiving ART at the time of NTM diagnosis. The most frequent pathogens were Mycobacterium avium complex (54%), M. genavense (14%) and M. kansasii (8%). Disseminated disease occurred in 31/50 patients (62%) and was associated with lower CD4 counts than localized disease (median 12 vs. 51 cells/µL; p = 0.002). The crude proportion of deaths was higher in disseminated than localized disease (32.3% vs. 5.3%; Fisher’s exact p = 0.035), whereas the survival comparison did not reach statistical significance (log-rank p = 0.052); 5/11 deaths occurred within 3 months of NTM diagnosis. Recurrence occurred only after disseminated disease (25.8% vs. 0%; Fisher’s exact p = 0.018). Conclusion NTM disease was largely a complication of late-diagnosed or untreated HIV. Disseminated disease was associated with higher crude mortality and recurrence, and nearly half of deaths occurred within three months of diagnosis. These findings indicate the need for prospective evaluation of interventions to facilitate earlier HIV diagnosis, rapid ART initiation, adherence support, and close follow-up after NTM diagnosis.