{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T15:58:01Z","timestamp":1787500681212,"version":"build-2736575974"},"reference-count":30,"publisher":"International Union Against Tuberculosis and Lung Disease","issue":"1","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJTLD Open"],"accepted":{"date-parts":[[2025,9,1]]},"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:title>SUMMARY<\/jats:title>\n                  <jats:sec>\n                    <jats:title>BACKGROUND<\/jats:title>\n                    <jats:p>TB and aspects of its treatment are known to impair health-related quality of life, but data are lacking on how pulmonary TB is experienced from the standpoint of affected individuals.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>METHODS<\/jats:title>\n                    <jats:p>We conducted a review of published literature and online content with the goal of conceptualising the personal experience of TB. Using social media sources drawn from the years 2020\u20132022, concepts from the literature review were updated with the perspectives of people with TB and caregivers from multiple countries across different World Bank income categories.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS<\/jats:title>\n                    <jats:p>The literature review identified 110 published articles and 91 stories of people with TB, enabling the generation of a conceptual model representing symptoms, disease impacts, and diagnostic and treatment challenges. Concepts of interest varied by country income level. The social media analysis captured 657 posts across 15 countries; the impacts described included physical (48%), emotional (28%), economic (18%), social (13%), caregiver (10%), and cultural (3%) impacts. Diagnosis was frequently associated with delays, access challenges, and confusion with COVID-19.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSION<\/jats:title>\n                    <jats:p>People affected by TB worldwide report impacts on multiple life dimensions, but the types of impact vary by geography, income, and culture. Additional research sensitive to local experience is needed.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.5588\/ijtldopen.25.0112","type":"journal-article","created":{"date-parts":[[2026,1,15]],"date-time":"2026-01-15T10:26:47Z","timestamp":1768472807000},"page":"38-45","source":"Crossref","is-referenced-by-count":1,"title":["Conceptualising the experience of having TB: a global qualitative study"],"prefix":"10.5588","volume":"3","author":[{"given":"D.","family":"Oberdhan","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"Hill","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"Gillman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"N.","family":"McGale","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J.","family":"Dandy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"T.","family":"Abdullaev","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"Dara","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"3554","published-online":{"date-parts":[[2026,1,1]]},"reference":[{"key":"2026031812065787000_3.1.38.1","unstructured":"World Health Organization . Global tuberculosis report 2024. Geneva: WHO, 2024."},{"issue":"4","key":"2026031812065787000_3.1.38.2","doi-asserted-by":"crossref","first-page":"509","DOI":"10.3390\/idr14040055","article-title":"Health-related quality of life (HRQoL) of patients with tuberculosis: a review","volume":"14","author":"Yasobant","year":"2022","journal-title":"Infect Dis Rep"},{"key":"2026031812065787000_3.1.38.3","doi-asserted-by":"publisher","DOI":"10.3390\/ijms24065202"},{"key":"2026031812065787000_3.1.38.4","doi-asserted-by":"crossref","first-page":"102511","DOI":"10.1016\/j.eclinm.2024.102511","article-title":"Interventions to prevent post-tuberculosis sequelae: a systematic review and meta-analysis","volume":"70","author":"Alene","year":"2024","journal-title":"EClinicalMedicine"},{"key":"2026031812065787000_3.1.38.5","doi-asserted-by":"publisher","DOI":"10.1183\/16000617.0260-2020"},{"key":"2026031812065787000_3.1.38.6","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijid.2016.11.006"},{"issue":"1","key":"2026031812065787000_3.1.38.7","doi-asserted-by":"crossref","first-page":"158","DOI":"10.1186\/s12955-019-1228-4","article-title":"Quality of life of patients on treatment for latent tuberculosis infection: a mixed-method study in Stockholm, Sweden","volume":"17","author":"Shedrawy","year":"2019","journal-title":"Health Qual Life Outcomes"},{"key":"2026031812065787000_3.1.38.8","unstructured":"United Nations General Assembly . Seventy-third session, agenda item 129. New York, NY, USA: United Nations Digital Library, 2018. https:\/\/digitallibrary.un.org\/record\/1645268?ln=en."},{"issue":"12","key":"2026031812065787000_3.1.38.9","doi-asserted-by":"crossref","first-page":"e1272","DOI":"10.1016\/S2214-109X(18)30378-4","article-title":"Message to world leaders: we cannot end tuberculosis without addressing the social and economic burden of the disease","volume":"6","author":"Shete","year":"2018","journal-title":"Lancet Glob Health"},{"issue":"1","key":"2026031812065787000_3.1.38.10","doi-asserted-by":"crossref","first-page":"1717","DOI":"10.1186\/s12889-022-14115-7","article-title":"Living with tuberculosis: a qualitative study of patients\u2019 experiences with disease and treatment","volume":"22","author":"Addo","year":"2022","journal-title":"BMC Public Health"},{"issue":"6","key":"2026031812065787000_3.1.38.11","doi-asserted-by":"crossref","first-page":"929","DOI":"10.1177\/2168479015580384","article-title":"Partnering with patients in the development and lifecycle of medicines: a call for action","volume":"49","author":"Hoos","year":"2015","journal-title":"Ther Innov Regul Sci"},{"key":"2026031812065787000_3.1.38.12","doi-asserted-by":"publisher","DOI":"10.2147\/PROM.S156279"},{"key":"2026031812065787000_3.1.38.13","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2011.06.014"},{"key":"2026031812065787000_3.1.38.14","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-4-79"},{"key":"2026031812065787000_3.1.38.15","unstructured":"European Medicines Agency . Appendix 2 to the guideline on the evaluation of anticancer medicinal products in man -The use of patient-reported outcome (PRO) measures in oncology studies \u2013 scientific guideline. Amsterdam, The Netherlands: European Medicines Agency, 2016. https:\/\/www.ema.europa.eu\/en\/appendix-2-guideline-evaluation-anticancer-medicinal-products-man-use-patient-reported-outcome-pro-measures-oncology-studies-scientific-guideline."},{"key":"2026031812065787000_3.1.38.16","unstructured":"International Council for Harmonization of Technical Requirements for Pharmaceuticals for Human Use (ICH) . ICH harmonized guidance general considerations for clinical studies E8(R1). Geneva, Switzerland: ICH, 2021. https:\/\/database.ich.org\/sites\/default\/files\/E8-R1_Guideline_Step4_2021_1006.pdf."},{"key":"2026031812065787000_3.1.38.17","unstructured":"U.S. Department of Health and Human Services . FDA patient-focused drug development guidance series for enhancing the incorporation of the patient\u2019s voice in medical product development and regulatory decision making. Silver Spring, MD, USA: Center for Drug Evaluation and Research, 2024."},{"issue":"1","key":"2026031812065787000_3.1.38.18","doi-asserted-by":"crossref","first-page":"345","DOI":"10.1186\/s12913-021-06329-z","article-title":"Patients\u2019 perspectives on factors facilitating adherence to tuberculosis treatment in Iquitos, Peru: a qualitative study","volume":"21","author":"Anthoney","year":"2021","journal-title":"BMC Health Serv Res"},{"key":"2026031812065787000_3.1.38.19","doi-asserted-by":"crossref","first-page":"46","DOI":"10.1186\/1471-2458-14-46","article-title":"The importance of providing counselling and financial support to patients receiving treatment for multi-drug resistant TB: mixed method qualitative and pilot intervention studies","volume":"14","author":"Baral","year":"2014","journal-title":"BMC Public Health"},{"issue":"1","key":"2026031812065787000_3.1.38.20","doi-asserted-by":"crossref","first-page":"e0209924","DOI":"10.1371\/journal.pone.0209924","article-title":"Such a long journey: what health seeking pathways of patients with drug resistant tuberculosis in Mumbai tell us","volume":"14","author":"Bhattacharya Chakravarty","year":"2019","journal-title":"PLoS One"},{"issue":"1","key":"2026031812065787000_3.1.38.21","doi-asserted-by":"crossref","first-page":"50","DOI":"10.1186\/s12879-016-2114-x","article-title":"Hospitalized care for MDR-TB in Port Harcourt, Nigeria: a qualitative study","volume":"17","author":"Bieh","year":"2017","journal-title":"BMC Infect Dis"},{"issue":"4","key":"2026031812065787000_3.1.38.22","doi-asserted-by":"crossref","first-page":"436","DOI":"10.1111\/nhs.12362","article-title":"Thai people living with tuberculosis and how they adhere to treatment: a grounded theory study","volume":"19","author":"Choowong","year":"2017","journal-title":"Nurs Health Sci"},{"issue":"1","key":"2026031812065787000_3.1.38.23","doi-asserted-by":"crossref","first-page":"1130","DOI":"10.1186\/s12889-016-3771-9","article-title":"Tuberculosis patients\u2019 pre-hospital delay and non-compliance with a longstanding DOT programme: a mixed methods study in urban Zambia","volume":"16","author":"Cremers","year":"2016","journal-title":"BMC Public Health"},{"key":"2026031812065787000_3.1.38.24","doi-asserted-by":"publisher","DOI":"10.1080\/17441692.2014.934266"},{"issue":"9","key":"2026031812065787000_3.1.38.25","doi-asserted-by":"crossref","first-page":"e0137572","DOI":"10.1371\/journal.pone.0137572","article-title":"Perspectives of patients, doctors and medical students at a public university hospital in Rio de Janeiro regarding tuberculosis and therapeutic adherence","volume":"10","author":"de Andrade","year":"2015","journal-title":"PLoS One"},{"key":"2026031812065787000_3.1.38.26","doi-asserted-by":"publisher","DOI":"10.1186\/s41043-017-0132-y"},{"issue":"10","key":"2026031812065787000_3.1.38.27","doi-asserted-by":"crossref","first-page":"1358","DOI":"10.5588\/ijtld.12.0784","article-title":"Barriers to tuberculosis care for drug users in two provinces of China: a qualitative study","volume":"17","author":"Li","year":"2013","journal-title":"Int J Tuberc Lung Dis"},{"issue":"4","key":"2026031812065787000_3.1.38.28","doi-asserted-by":"crossref","first-page":"300","DOI":"10.2991\/jegh.k.190929.001","article-title":"What constitutes health care seeking pathway of TB patients: a qualitative study in rural Bangladesh","volume":"9","author":"Shatil","year":"2019","journal-title":"J Epidemiol Glob Health"},{"issue":"1","key":"2026031812065787000_3.1.38.29","doi-asserted-by":"crossref","first-page":"23","DOI":"10.5588\/ijtld.16.0433","article-title":"Multidrug-resistant tuberculosis patients\u2019 views of interventions to reduce treatment loss to follow-up","volume":"21","author":"Tupasi","year":"2017","journal-title":"Int J Tuberc Lung Dis"},{"key":"2026031812065787000_3.1.38.30","doi-asserted-by":"publisher","DOI":"10.1177\/1557988314555359"}],"container-title":["IJTLD Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.5588\/ijtldopen.25.0112","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,3,18]],"date-time":"2026-03-18T19:07:27Z","timestamp":1773860847000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.theunion.org\/lookup\/doi\/10.5588\/ijtldopen.25.0112"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,1]]},"references-count":30,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,1,1]]},"published-print":{"date-parts":[[2026,1]]}},"alternative-id":["10.5588\/ijtldopen.25.0112"],"URL":"https:\/\/doi.org\/10.5588\/ijtldopen.25.0112","relation":{},"ISSN":["3005-7590"],"issn-type":[{"value":"3005-7590","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,1]]}}}