We propose two initial areas of work which are urgently needed to prepare health systems and countries for the burden of chronic lung disease that will fall on poor populations in the coming 10-20 years:
A. Rapid scale up of the number and scale of studies of patient costs associated with chronic non-communicable respiratory disease.
The first step should be the conduct of a systematic review of the existing literature in this field. This would serve to better understand the gaps in the knowledge about these costs and the tools that have been used to measure them. Following the systematic review, there should be a series of studies which could use modifications of the data collection tools that have been developed for TB, where the modifications are informed by the findings of the systematic review.
B. Work towards deeper understanding and effective measurement of catastrophic care-seeking costs.
We suggest an alternative approach to the questionnaire-based data collection and analysis approaches which have been used to date and described above. This new approach focuses on the sacrifices households make to finance healthcare expenditure. These may include reduction in consumption, withdrawing children from school, and so on. A common coping strategy is to draw on the financial resources available to the household for consumption smoothing, either by disposing of assets or taking out loans. We refer to this strategy as ‘dissaving’, as it involves reducing the financial resources available to protect the household from further shocks. It is effectively the opposite of ‘saving’, which strengths the financial resources of the household (see Figure 2). Dissaving can easily and quickly be measured by surveys, and is likely to be correlated with excessive costs. A survey of households in 40 developing countries found that 1 in 4 borrowed money or sold assets to fund healthcare costs[21], and that the poorest households were most likely to dissave. However, there is limited research on the exact relationship between dissaving and catastrophic healthcare expenditure, the importance of the type of asset being sold or the source of loan finance, and the impact of dissaving on household wellbeing.
A theoretical model of household decision-making when seeking health care under financial pressure would be a useful guide for the design, evaluation and selection of both social protection and health interventions for patients with chronic respiratory disease. A number of decision-making models have been developed within the economics literature, based on Grossman's work on health capital production [24] Models have been developed that treat households as single entities, as multiple individuals making cooperative decision to jointly produce household health and as multiple decision-makers with independent (and possibly conflicting) goals[14, 15]
While such models have been widely used in high-income country settings to model choices such as smoking, vaccination take-up, and childhood obesity, research on their use and effectiveness in low and middle income settings is limited. The assumption of rational decision-making which underpins these models may turn out to be unrealistic and over-simplistic. Theoretical decision models drawing on other social sciences, that incorporate concepts such as behavioural norms, gender analysis and cultural influence, may provide an approach more consistent with observed behaviour.
We propose a programme of empirical research to collect evidence on the impact on households of costs associated with seeking health care for chronic respiratory disease, the actions taken by household members in response to this financial stress, the consequences of those actions for household health and well-being, and the decision-making process behind household actions. The aims of this research are two-fold. Firstly, we aim to identify and validate indicators (such as dissaving) for catastrophic health care expenditure in its underlying sense – that of resulting in long-term significant impoverishment of those affected. These indicators should be simple enough for use in routine monitoring and evaluation, and validated by our research as indicative of severe and lasting financial distress. Secondly, we aim to evaluate and refine alternative theories of household decision-making to identify models consist with actual behaviour in low-income settings. We anticipate that validated theoretical models will be extremely useful for policy-makers in the selection and design of interventions around social protection, poverty reduction, and universal health care implementation.
The proposed programme of research will draw on a range of qualitative and quantitative methods to provide evidence that is robust and captures the complex decision-making context faced by poor households under health-related financial pressures. It will be carried out in low and middle income countries and integrated with intervention studies aimed at reducing catastrophic costs and improving access to health services. It will draw on relevant applied and methodological expertise across LSTM and the University of Warwick, as well as the network of in-country research organisations where links have already been established. In addition, capacity to undertake this work and use it to influence delivery and policy will need to be strengthened in existing and new in-country collaborating organisations.