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Tomeny, Ewan 
ORCID: https://orcid.org/0000-0003-4547-2389
(2024)
THE TUBERCULOSIS JOURNEY — Symptoms to Sequelae:
Evaluating diagnostic pathways and improving the measurement of
the tuberculosis patient experience, Thesis (Doctoral), Liverpool School of Tropical Medicine.
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Abstract
Advancing evaluation methodologies for TB-interventions by facilitating the improved capture and integration of patient experiences into the decision-making process.
BACKGROUND AND RATIONALE: Tuberculosis poses a significant challenge to global health, causing substantial morbidity and mortality worldwide. Given the limited funding, it is crucial that resource allocation is guided by robust evidence on the likely health outcomes resulting from alternative investments. The TB experience and journey present challenges and complexities for patients. In care-seeking, patients can spend considerable time and money before receiving a diagnosis. Many diagnostic centres still rely on microscopy, which can result in missed cases or inappropriate treatment. Treatment itself is lengthy at six months, and is often unpleasant, especially so for those undergoing MDR-TB regimens, which are considerably longer. Treatment typically requires frequent visits to healthcare facilities, imposing a significant financial burden through both out-of-pocket expenditure and substantial loss of productive time. Drug-susceptibility testing is not universally conducted, despite growing prevalence of drug-resistant TB in many areas. Standard TB treatment cannot cure patients with these strains, leading to prolonged illness, worse outcomes, and higher costs. Furthermore, among patients who are microbiologically cured of TB, many experience long-term sequelae or complications. Despite growing evidence and awareness of these factors, their incorporation into cost-effectiveness analyses of TB interventions, particularly those employing disability-adjusted life-years (DALYs) as the measure of health effect, is not common. Incorporation presents challenges, however, largely due to a lack of accepted methodologies. A core component of this thesis is concerned with how such factors can be
addressed, and presents the work of a cost-effectiveness analysis which incorporates such inclusion.
OVERALL THESIS AIM: To advance evaluation methodologies for TB-interventions by facilitating the improved capture and integration of patient experiences into the decision-making and policy formulation.
PHD STRUCTURE: This PhD thesis contains five papers.
RESEARCH METHODS: A patient costing study follows a cluster-sampled cross-sectional design, estimating the cost of lost time through the human capital approach. Further pathway modelling considered alongside patient responses allows for comparison and commentary. A study of post-TB disability utilises a novel approach of mapping symptoms to derive post-TB weights, and subsequently estimate global post-TB burden. The third study is a comprehensive review of TB-related disability weights used in DALY cost effectiveness analyses of TB interventions. A Virtual Health System Model is utilised in the fourth study, to evaluate diagnostic strategies as part of a cost-effectiveness analysis. A final study investigates the effect on TB cost-effectiveness conclusions when broader evidence on longer-term economic and health burden is considered.
SUMMARY OF FINDINGS: Aspects of the tuberculosis experience which evidence suggests are fundamental to patients’ wellbeing and the successful implementation of care strategies are potentially being overlooked in economic analyses. This research provides evidence for ways in which we can restructure TB diagnostic pathways, to improve the experience for patients while increasing health system efficiency. Additionally, the research develops new metrics for capturing the effects of the TB experience on patients, valuable for informing future economic evaluations of TB interventions and demonstrating the extent of effect on calculations when such inclusions are not made.
CONCLUSIONS:
Current methodologies for depicting, modelling, and evaluating the TB-experience are, in places, outdated and the current practice of assigning disability weights in analyses based on a limited disease description should be adapted to include wider considerations of the TB patient experience. We must additionally ensure that the substantial costs faced by people affected by TB receive due attention, and that evaluation perspectives aiming to account for these costs do so in a manner that properly reflects both individual and societal burdens. Virtual health system modelling provides an effective way to incorporate patient costs incurred along the TB pathway, demonstrating that the cost-effectiveness of new diagnostic tools varies considerably by underlying context specific factors, and further requires an understanding of clinician behaviour. Collectively, this research suggests that a revision in some current approaches could lead to more efficient allocation of resources, and reinforces the need for patient-centred TB management strategies and policies.
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