Summary
Published 2017.
Tuberculosis (TB) is mainly a disease of poor and marginalized people and communities. An already precarious socioeconomic situation can worsen considerably when an individual or household is struck by TB; potentially entrenching them in a vicious poverty-disease circle. Costs related to diagnosis and treatment are often compounded by costs for transport to a place of care, for temporary accommodation and food, as well as the income foregone when seeking and receiving treatment, and/or lost employment due to disability or discrimination. These costs can have catastrophic consequences. A systematic review of available studies on TB patient and household costs has suggested that, on average, losses can be equivalent to more than one year’s income. Patients with multidrug-resistant TB (MDR-TB) and their households tend to face particularly devastating costs. As a result, many affected people are unable to pursue the full journey from TB diagnosis through successful treatment, with consequences for their own health and well-being and at the risk of perpetuating disease transmission. To spur action, the WHO End TB Strategy includes, among its highly ambitious top three impact targets, the elimination by 2020 of catastrophic costs for TB patients and their households. The Strategy lays out approaches to improve people- and patient-centred care, and to pursue bold policies to move rapidly towards universal health coverage (UHC). It also outlines additional approaches within and beyond the health sector to advance social protection and action on the social determinants of TB, and to enable related research and innovation. To measure progress towards the high-level End TB Strategy target, WHO recommends baseline and periodic measurement using an indicator termed “catastrophic total costs due to TB”. Measurement is based on the conduct of surveys examining the costs to patients associated with TB, and can enable the estimation of the proportion of patients experiencing catastrophic costs. In shorthand, these are referred to as “TB patient cost surveys”.
TB patient cost surveys have two primary objectives:
1. To document the magnitude and main drivers of different types of costs incurred by TB patients (and their households) in order to guide policies to reduce financial access barriers and minimize the adverse socioeconomic impact of TB.
2. To determine the baseline and periodically measure the percentage of TB patients (and their households) treated in the national TB programme (NTP) network who incur catastrophic total costs due to TB.
This handbook provides a standardized methodology for conducting health facility-based cross-sectional surveys to assess the direct and indirect costs incurred by TB patients and their households, building on experience gathered using a previous costing tool and an iterated WHO pilot protocol and tool. The primary target audience for the Handbook includes NTPs and partners involved in supporting TB programme planning, implementation, evaluation and associated operational research. This Handbook replaces the field-testing version of a generic protocol that was developed by WHO with experts in a WHO-led TB Patient Cost Task Force in 2015, building on a previous tool. Revision of the protocol was based on experience gained through national TB patient cost surveys conducted in Myanmar (2015), Viet Nam (2016), Timor Leste (2017), Ghana (2016), Mongolia (2017), the Philippines (2017), Uganda (2017), China (2017) and Kenya (2017), as well as additional advice provided by the Task Force. Experience from initial surveys shows that data collection can be completed in less than six months. The Handbook provides further background on the rationale and development of the TB patient cost survey approach. It then describes the situation assessment that is needed before a survey is designed and implemented. This is followed by an outline of the survey methodology, including study design, sampling approach, data collection and management, and data analysis. Finally, the Handbook provides advice on conducting dialogue on the survey results and policy implications and in disseminating findings, thereby enabling action and related research for effective modifications in care delivery models, in patient support, and wider cross-sectoral interventions. WHO envisages that at a minimum, the Handbook will be used for surveys in all high TB burden countries ahead of 2020 – the first milestone year for the End TB Strategy targets – and alongside other key surveillance, monitoring and evaluation, and operational research tools to improve TB care and prevention, and end the epidemic.
