Tuberculosis patients’ pre-hospital delay and non-compliance with a longstanding DOT programme: a mixed methods study in urban Zambia

Cremers, Anne Lia; Gerrets, René; Kapata, Nathan; Kabika, Austin; Birnie, Emma; Klipstein‐Grobusch, Kerstin; Grobusch, Martin P.

doi:10.1186/s12889-016-3771-9

Cited by 17 publications

(27 citation statements)

References 39 publications

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“…41,43,54 The impact of stigma is therefore not unidirectional and not always negative. For example, stigma can make some patients more adherent 29,55 and some less adherent. 56 Furthermore, stigma's consequences may vary for different groups, individuals, and settings.…”

Section: Resultsmentioning

confidence: 99%

Defining the research agenda to measure and reduce tuberculosis stigmas

2018

Indian Journal of Tuberculosis

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Crucial to finding and treating the 4 million tuberculosis (TB) patients currently missed by national TB programmes, TB stigma is receiving well-deserved and longdelayed attention at the global level. However, the ability to measure and evaluate the success of TB stigmareduction efforts is limited by the need for additional tools. At a 2016 TB stigma-measurement meeting held in The Hague, The Netherlands, stigma experts discussed and proposed a research agenda around four themes: 1) drivers: what are the main drivers and domains of TB stigma(s)?; 2) consequences: how consequential are TB stigmas and how are negative impacts most felt?; 3) burden: what is the global prevalence and distribution of TB stigma(s) and what explains any variation? 4): intervention: what can be done to reduce the extent and impact of TB stigma(s)? Each theme was further subdivided into research topics to be addressed to move the agenda forward. These include greater clarity on what causes TB stigmas to emerge and thrive, the difficulty of measuring the complexity of stigma, and the improbability of a universal stigma 'cure'. Nevertheless, these challenges should not hinder investments in the measurement and reduction of TB stigma. We believe it is time to focus on how, and not whether, the global community should measure and reduce TB stigma. K E Y W O R D S : discrimination; human rights; social justice; respect; equity TUBERCULOSIS (TB) STIGMA is beginning to receive some well-deserved attention at the global level. 1 'Zero suffering' is one of the three goals of the World Health Organization's End TB Strategy, and reference to stigma is common in key implementation documents. 2 The Global Fund has declared TB stigma to be among the most commonly identified barriers to fighting the epidemic, 3 and United Nations agencies have called for an end to discrimination in health care. 1 Many experts believe that it will be difficult to find the estimated 4 million missing TB cases without addressing TB stigma. 1,4 Experts also believe that the full potential of new drugs and regimens for multidrug-resistant TB (MDR-TB), paediatric TB and latent tuberculous infection (LTBI) cannot be realised without addressing TB stigma. Increasingly, countries using Global Fund support are attempting to reduce TB stigma and discrimination across and within elements of their TB programmes. However, Correspondence to: Ellen M H Mitchell, Evidence Team, KNCV Tuberculosis Foundation,

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Section: Resultsmentioning

confidence: 99%

Defining the research agenda to measure and reduce tuberculosis stigmas

2018

Indian Journal of Tuberculosis

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“…Bangladesh [113,114], Brazil [127,128], Cambodia [115], China [133,134], Ethiopia [108], India [113,119], Nigeria [123], Philippines [124], Russia[135], South Africa [137][138][139][140][141][142], Tanzania [112], Zambia [125], Zimbabwe [126] Perceived stigma and discrimination at workplace, within family and the community against women, and associating TB with HIV deterred presumptive TB cases from seeking TB diagnosis and care "When someone says, 'I have TB' others will say that the person has three words [HIV].'' [141] "The person would be scared that she would lose her job and that people and friends would avoid her."…”

Section: Patient Delaymentioning

confidence: 99%

“…The problem for me is the language because I can't speak Thai." [143] Bangladesh [113,114], Brazil [129], Cambodia [115], China [132][133][134], Ethiopia [108][109][110], India [113,[116][117][118][119][120], Indonesia [121,122], Mozambique [111], Nigeria [123], Philippines [124], Russia [135,136], South Africa [137,138,[140][141][142], Tanzania [112], Zambia [125], Zimbabwe [126] Long chains of care seeking through multiple providers and the lack of trust in the health care system providing TB care led to delay in care seeking and TB diagnosis "Government doctor did not show any interest, neither he responded to my questions. They never spoke to me at all.…”

Section: Patient Delaymentioning

confidence: 99%

“…In the morning you wake up, something squeaks, whistles; you groan but go anyway, then you forget about it during work." [136] Cambodia [44], China [132], Nigeria [123], Philippines [124], Competing priorities of livelihood, work, and family led to delay in "They had to earn money for their families and had no time for illness Russia [136], Thailand [143], Zambia [125] care seeking and TB diagnosis and examinations." [136] "I work almost every day except on market days on the farm and Sundays or if there are special occasions.…”

Section: Patient Delaymentioning

confidence: 99%

“…So, if I should go to the hospital in the morning hours as I am told that is when they open and return in the afternoon, that whole day is gone." [123] Brazil [127], China [132,133], Ethiopia [108,110], India [119], Indonesia [121], Philippines [124], Russia [136], South Africa [138,140], Tanzania [112], Zambia [125], Zimbabwe [126] Poor knowledge regarding TB symptoms and treatment, and the availability of free treatment policy were barriers to early healthcare seeking "TB is not yet a disease that people recognize, then any respiratory problem is associated with virus diseases, flu, smoke, dust of the street, all but a disease like TB." [127] "Some participants in rural areas were skeptical whether free treatment actually existed" [121] Bangladesh [113], Cambodia [44,115], Ethiopia [108], India [113,117], Indonesia [122], Mozambique [111], Philippines [124] [115] "For all patients that had initially thought they were cursed, the fact that their disease was diagnosed in the hospital was perceived as a proof that TB is a punishment of God rather than caused by witchcraft forces.…”

Section: Patient Delaymentioning

confidence: 99%

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Determinants of delayed diagnosis and treatment of tuberculosis in high-burden countries: a mixed-methods systematic review and meta-analysis

Teo¹,

Singh

Prem

et al. 2020

Preprint

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Background: Globally, 30 countries with the highest tuberculosis (TB) burden bears 87% of the world’s TB cases. Delayed diagnosis and treatment are detrimental to TB prognosis and sustain TB transmission in the community, making TB elimination a great challenge, especially in these countries. Our objective was to elucidate the determinants and duration of delayed diagnosis and treatment of pulmonary TB in high TB burden countries. Methods: We conducted a systematic review and meta-analysis of quantitative and qualitative studies by searching four databases for literature published between 2008 and 2018 following PRISMA guidelines. For quantitative studies, we performed narrative synthesis of the covariates that were significantly associated with patient, health system, treatment, and total delays. The pooled median duration of delay and effect sizes of covariates were estimated using random-effects meta-analyses. We identified key qualitative themes using thematic analysis. Results: We included 124 articles from 14 low-and lower-middle-income countries (LIC and LMIC) and five upper-middle-income countries (UMIC) in this review. The pooled median duration of patient, health system, and treatment delay were 28 days (95%CI 20–30), 11.5 days (95%CI 3.9–24.7), and six days (95%CI 1–28.4), respectively. We found that the duration of delays was consistently shorter among UMIC compared to LIC and LMIC. There was consistent evidence that being female and rural residence was associated with longer patient delay. Furthermore, patient delay was also associated with other individual, interpersonal, and community risk factors such as poor TB knowledge, long chains of care-seeking through private/multiple providers, perceived stigma, financial insecurities, and poor access to healthcare. Health system and treatment delay were mediated by organizational and policy factors. These factors included the lack of resources and complex administrative procedures and systems at the health facilities. We identified data gaps in 11 high burden countries. Conclusions: This review detailed the determinants of delayed TB diagnosis and treatment in high burden countries. The gaps identified at different socio-ecological levels could be addressed through tailored approaches, education, and at a higher level, through health system strengthening and provision of universal health coverage to reduce delays and improve access to TB diagnosis and care.

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