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The Functional Outcomes, Lung Health, and Livelihood Outcomes among people With Tuberculosis (FOLLOW-TB)

Tuberculosis (TB) is conventionally framed as an acute illness, but its consequences often extend well beyond the end of treatment. An estimated 155 million TB survivors are alive today, including more than 100,000 Canadians, and growing evidence shows they face elevated risks of respiratory disability, depression, financial insecurity, and early death. Almost all of this evidence comes from high-burden, low- and middle-income countries; far less is known about what happens after TB in a high-income, low-incidence setting like Canada. Much of this burden is also preventable: people with TB infection (the asymptomatic state that can progress to TB disease) can take TB preventive treatment (TPT) to stop that progression, yet TPT remains underused, and the reasons people stop before completing it are poorly understood.

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FOLLOW-TBÌýis a multicentre prospective cohort study in Montreal, Toronto, Edmonton, Calgary, and Vancouver designed to address these gaps. We will enroll and follow three groups of participants aged 6 years and older: at least 365 people with microbiologically confirmed TB disease, 340 people treated for TB infection, and 365 people with neither, who form an unexposed comparison group. Participants with TB disease or infection will be recruited within four weeks of starting treatment. We will follow those with TB disease, and the unexposed comparison group, for 24 months, and those with TB infection for 12 months, with repeated assessments of lung health and function, quality of life, disability, breathlessness, psychological distress, employment, and the direct and indirect costs participants incur because of treatment.

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For participants with TB disease, the primary outcome is the difference in quality-adjusted life years, a combined measure of survival and quality of life, relative to the unexposed group at 24 months. For participants with TB infection, the primary aim is to identify the non-clinical factors, such as the costs people bear or their quality of life, that shape the decision to stop preventive treatment early. Patient partners have shaped the study's design and remain involved as the study continues. The original study protocol is published open access in BMJ Open (doi: 10.1136/bmjopen-2025-103256).

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Questions about the study? Contact us:
Principal Investigator:ÌýDr. Jonathon Campbell |ÌýPhone:Ìý438-258-9277 |ÌýEmail:ÌýFOLLOW-TB [at] rimuhc.ca

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FOLLOW-TB Study

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