The First International Post-Tuberculosis Symposium was held in Stellenbosch, South Africa, on July 22–23, 2019, to discuss priorities and gaps that need to be addressed in order to provide guidance in this neglected area. The symposium involved 68 delegates across 12 disciplines from five continents, representing more than 27 institutions. Historically, inconsistency and lack of consensus in nomenclature and terminology have hampered work in this field. Using the Delphi process, the Symposium voted to embrace the non-discipline specific adjective “post-tuberculosis”
for future work in this area, with a majority vote of 84% after three rounds.
During this meeting the need for a comprehensive post-tuberculosis research agenda was emphasised and various important aspects were highlighted. First, heterogeneity between patients, in terms of severity and phenotypic outcomes,4 remains largely unexplained and contributes to difficulties in accurate estimation of disease burden. Second to develop prevention strategies,
the mechanisms of damage during tuberculosis require further elucidation. Furthermore, former patients with tuberculosis—which include large numbers of children—are known to have a heightened risk of recurrent tuberculosis,5 highlighting the need for integrated care strategies to prevent and manage both recurrent disease and post-tuberculosis lung damage. Seen through the eyes of several patient representatives, there is a need to advocate for health and wellbeing after completion of tuberculosis treatment, and to address socioeconomic consequences, including post tuberculosis stigma and disabilities. The shadow of tuberculosis is long for many former patients, and in the words of one: “When we started tuberculosis treatment, no-one told us that it would never leave us”.