Building resilience needs to be central to treating drug-resistant tuberculosis

The arrival of new medications, such as bedaquiline and delamanid, to treat the half million individuals who develop drug-resistant tuberculosis (DRTB) globally each year has raised hope that both treatment access and individual patient outcomes can be improved. However, together with increasing discourse around providing more patient-centred care in tuberculosis,1Odone A Roberts B Dara M van den Boom M Kluge H McKee M People- and patient-centred care for tuberculosis: models of care for tuberculosis.Int J Tuberc Lung Dis. 2018; 22: 133-138Crossref PubMed Scopus (27) Google Scholar there is a growing body of literature describing the experiences of individuals going through DRTB treatment.2Furin J Loveday M Hlangu S et al.“A very humiliating illness”: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa.BMC Public Health. 2020; 20: 76Crossref PubMed Scopus (21) Google Scholar, 3Baral SC Aryal Y Bhattrai R King R Newell JN The importance of providing counselling and financial support to patients receiving treatment for multi-drug resistant TB: mixed method qualitative and pilot intervention studies.BMC Public Health. 2014; 14: 46Crossref PubMed Scopus (53) Google Scholar In The Lancet Global Health, Amrita Daftary and colleagues4Daftary A Mondal S Zelnick J et al.Dynamic needs and challenges of people with drug-resistant tuberculosis and HIV in South Africa: a qualitative study.Lancet Glob Health. 2021; 9: e479-e488Summary Full Text Full Text PDF PubMed Scopus (4) Google Scholar add to this literature by describing distinct stages through DRTB diagnosis and treatment from the point of view of patients with DRTB and HIV in KwaZulu-Natal province, South Africa. The study emphasises that despite improvements in treatment, including shorter, all-oral regimens that include bedaquiline,5WHORapid Communication: Key changes to the treatment of drug-resistant tuberculosis. World Health Organization, Geneva2019Google Scholar DRTB treatment remains lengthy, difficult, and life-changing for individuals. Tuberculosis programmes, including those for DRTB, continue to focus on strategies that emphasise case detection and treatment adherence, with cure as the goal. The realities of coming to terms with a diagnosis, coping with stigma, and maintaining family and economic responsibilities throughout lengthy treatment are rarely acknowledged and seldom feature in health service responses. By contrast, patient-centred or person-centred care emphasises holistic and individualised care that acknowledges and addresses individual preferences and their context.1Odone A Roberts B Dara M van den Boom M Kluge H McKee M People- and patient-centred care for tuberculosis: models of care for tuberculosis.Int J Tuberc Lung Dis. 2018; 22: 133-138Crossref PubMed Scopus (27) Google Scholar How then, can we make this holistic approach happen in practice? We believe that the study by Daftary and colleagues and other studies highlight three key areas where person-centredness for all patients with tuberculosis, particularly those with DRTB, can be improved. These areas are treatment literacy, psychosocial support, and most importantly, social protection provisions or economic support for patients, all of which need to extend beyond the end of treatment and include measures to reintegrate individuals into their communities, both socially and economically. Daftary and colleagues conducted focus group discussions with patients with DRTB, all of whom were HIV positive, at various stages of their treatment journey. At treatment initiation, when most patients were hospitalised, participants described inadequate information compared with that received previously for HIV and wanted information in their first language to allay their fears. Diagnosis with a disease that has consistently been linked with poor adherence to treatment was also stigmatising and difficult to comprehend. The need to discuss these and other issues throughout treatment with dedicated and sympathetic staff was clearly apparent. There are few examples where systematic, standardised treatment literacy, and counselling services, with dedicated human resources, have been integrated into tuberculosis and DRTB treatment provision at a national programmatic level. However, small pilot projects have provided evidence that such services can improve both patient experiences and treatment outcomes.3Baral SC Aryal Y Bhattrai R King R Newell JN The importance of providing counselling and financial support to patients receiving treatment for multi-drug resistant TB: mixed method qualitative and pilot intervention studies.BMC Public Health. 2014; 14: 46Crossref PubMed Scopus (53) Google Scholar, 6Snyman L Venables E Trivino Duran L et al.‘I didn't know so many people cared about me’: support for patients who interrupt drug-resistant TB treatment.Int J Tuberc Lung Dis. 2018; 22: 1023-1030Crossref PubMed Scopus (7) Google Scholar A central theme running through the participant narratives described in Daftary and colleagues was the financial impact of DRTB diagnosis and treatment; initial hospitalisation necessitating the transfer of household responsibilities and travel, and continued poor health inhibiting earning capacity when patients were the main providers of household income. Government grants, received by few participants, were limited and did not extend throughout treatment or beyond. There is considerable evidence suggesting that a tuberculosis diagnosis can force individuals and households further into poverty and financial crisis.7Reid MJA Arinaminpathy N Bloom A et al.Building a tuberculosis-free world: The Lancet Commission on tuberculosis.Lancet. 2019; 393: 1331-1384Summary Full Text Full Text PDF PubMed Scopus (146) Google Scholar Poverty alleviation strategies, aimed at households affected by tuberculosis, can prevent tuberculosis survivors from further deterioration in health including recurrent tuberculosis disease, as well as affecting the social determinants of health more broadly, with consequent effects on tuberculosis incidence.8Ukwaja KN Social protection interventions could improve tuberculosis treatment outcomes.Lancet Glob Health. 2019; 7: e167-e168Summary Full Text Full Text PDF PubMed Scopus (6) Google Scholar However, despite the 2014 WHO End Tuberculosis strategy embracing ending catastrophic costs as a target, and evidence showing that socioeconomic interventions are feasible and impactful, social protection mechanisms are not integrated into the tuberculosis response. Indeed, patient-centred approaches have not been embraced by national tuberculosis programmes. What, then, are the barriers? First, unlike the global HIV response, there has been little civil society input or activism or involvement of tuberculosis survivors in policy formulation. Civil society input, from the outset, moulded the HIV response into a more patient-focused, individualised approach, whereas tuberculosis programmes are traditionally rooted in the biomedical model of disease prevention and treatment.9Daftary A Calzavara L Padayatchi N The contrasting cultures of HIV and tuberculosis care.AIDS. 2015; 29: 1-4Crossref PubMed Scopus (15) Google Scholar Although this is gradually changing, it is only recently that WHO has included patient advocates or tuberculosis survivors in guideline development processes. Second, tuberculosis is highly stigmatised, and DRTB is associated with considerable patient blaming, particularly among health-care workers.10Daftary A Frick M Venkatesan N Pai M Fighting TB stigma: we need to apply lessons learnt from HIV activism.BMJ Glob Health. 2017; 2e000515Crossref PubMed Scopus (34) Google Scholar Changing this perception will require a fundamental shift in deeply entrenched programmatic approaches. Finally, tuberculosis is a disease of poverty and there have been consistent gaps in funding existing tuberculosis programmes both globally and at national levels,7Reid MJA Arinaminpathy N Bloom A et al.Building a tuberculosis-free world: The Lancet Commission on tuberculosis.Lancet. 2019; 393: 1331-1384Summary Full Text Full Text PDF PubMed Scopus (146) Google Scholar despite the enormous costs associated with tuberculosis and DRTB treatment in particular to economies in high burden countries.7Reid MJA Arinaminpathy N Bloom A et al.Building a tuberculosis-free world: The Lancet Commission on tuberculosis.Lancet. 2019; 393: 1331-1384Summary Full Text Full Text PDF PubMed Scopus (146) Google Scholar Ensuring that tuberculosis care is supportive and individualised, and does not leave cured individuals worse off, requires an approach that builds resilience at individual, household, and community levels. Strategies need to be multisectoral, locally appropriate, sufficiently funded, and sustainable. Involving patients, and taking heed of their individual struggles, will be central to making the tuberculosis response more patient-centred. HC reports grants from the European and Developing Countries Clinical Trials Partnership, the US National Institutes of Health, and the South African National Research Foundation, outside the submitted work. ML declares no competing interests. Dynamic needs and challenges of people with drug-resistant tuberculosis and HIV in South Africa: a qualitative studyPeople with DRTB and HIV undergo disruptive, life-altering experiences. The lack of information, agency, and social protections in DRTB care and treatment causes wider-reaching challenges for patients compared with HIV. Decentralised, community, peer-support, and differentiated care models for DRTB might be ameliorative and help to maximise the promise of new regimens. Full-Text PDF Open Access