INT J TUBERC LUNG DIS 24(1):43–47 Q 2020 The Union http://dx.doi.org/10.5588/ijtld.19.0207 A novel approach for eliciting adolescent MDR-TB treatment tolerability: qualitative data from South Africa K. Zimri, R. Casper, G. Hoddinott, H. S. Schaaf, A. J. Garcia-Prats, P. C. Rose, A. C. Hesseling, L. Viljoen Desmond Tutu TB Centre, Department of Paediatrics and Child Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Tygerberg, South Africa SUMMARY SETTING: Treatment tolerability among adolescents diagnosed with multidrug-resistant tuberculosis (MDR- TB) is underexplored. We present qualitative study data from adolescents participating in an observational cohort in the Western Cape, South Africa. OBJECTIVE: To elicit adolescent experiences of MDR- TB diagnosis and treatment with qualitative body- mapping activities and discussions. DESIGN: Adolescents in an observational MDR-TB cohort received routine toxicity and audiology screen- ings from clinicians. We enrolled eight participants (age 10–16 years) to participate in additional body-mapping activities and in-depth interviews. A thematic deductive analysis was conducted. We present a comparison of the clinical assessments and qualitative discussions. RESULTS: Adolescent participants reported few adverse effects on standard toxicity and audiology reports. Only nausea and vomiting were reported in .10% of cases, all of which were grade 1 (causing no/minimal interference) adverse effects (AEs). However, when comparing toxicity reports with qualitative body-mapping activities and interviews, we found previously unreported AEs (neuro- sensory alteration, neuromuscular weakness, pain); un- derestimated severity of AEs (nausea, itching); and missed psychosocial symptoms (signs of depression). CONCLUSION: Adolescents receiving treatment for MDR-TB experienced treatment-related AEs that were not reported during routine clinical assessments. Psy- chosocial experiences of adolescents are not taken into account. More research is needed to understand the experiences of this vulnerable group. We recommend that drug safety monitoring be adapted to include more creative and patient-driven reporting mechanisms for vulnerable groups, including children KEY WORDS: multidrug-resistant tuberculosis; body mapping; pharmacokinetics; paediatric TUBERCULOSIS (TB), including multidrug-resistant tuberculosis (MDR-TB) is a global concern. It was reported that 1.78 million, or 17%, of all new TB cases were adolescents and young adults (age 10–24 years) in 2012, 1 and 18% of all new TB notifications in 2013. 2 An estimated 25 000 to 32 000 children are diagnosed with MDR-TB disease annually (3% of all paediatric TB cases). 3 The MDR-TB burden in South Africa is particularly high. 4 Between 2011 and 2013, 4.7% of 323 children (0–13 years) with culture- confirmed TB, who were at one referral hospital in the Western Cape, had MDR-TB. 4 While studies have shown that adolescents are at risk for drug-suscepti- ble and MDR-TB, the lack of epidemiological knowledge about this group persists. 5 Adolescents have been referred to as the ‘missing cohort’ in TB research. 6 Systematic reviews and World Health Organisation (WHO) reports on MDR-TB treatment outcomes often report only on children (,15 years of age) and adults (.15 years). 7,8 Some South African studies focusing on adoles- cents with TB or MDR-TB have shown that they have poor treatment outcomes in terms of high rates of mortality, treatment failure and loss to follow-up. 2,5 Even successful MDR-TB treatment includes expo- sure to toxicity, and sometimes, irreversible adverse effects (AEs), particularly those related to anti- tuberculosis injectable drugs. At least 25% of children acquire ototoxicity in the form of sensori- neural hearing loss; some acquire hypothyroidism and arthralgia and experience significant injection site pain and complications. 9–11 Schaaf et al. noted that MDR-TB treatment AEs are challenging to assess among children. 10 Limited research has been con- ducted on the MDR-TB treatment experiences of adolescents and the potential associated psychologi- cal effects. 12,13 Sotgiu and Loddenkemper recently Correspondence to: Klassina Zimri, Desmond Tutu TB Centre, Department of Paediatrics and Child Health, Faculty of Medicine and Health Sciences, Stellenbosch University, PO Box 241, Cape Town 8000, South Africa. e-mail: Klassinaz@ sun.ac.za Article submitted 29 March 2019. Final version accepted 28 May 2019.