Missing not at random in end of life care studies: multiple imputation and sensitivity analysis on data from the ACTION study

Background: Missing data are common in end-of-life care studies, but there is still relatively little exploration of which is the best method to deal with them, and, in particular, if the missing at random (MAR) assumption is valid or missing not at random (MNAR) mechanisms should be assumed. In this paper we investigated this issue through a sensitivity analysis within the ACTION study, a multicenter cluster randomized controlled trial testing advance care planning in patients with advanced lung or colorectal cancer. Methods: Multiple imputation procedures under MAR and MNAR assumptions were implemented. Possible violation of the MAR assumption was addressed with reference to variables measuring quality of life and symptoms. The MNAR model assumed that patients with worse health were more likely to have missing questionnaires, making a distinction between single missing items, which were assumed to satisfy the MAR assumption, and missing values due to completely missing questionnaire for which a MNAR mechanism was hypothesized. We explored the sensitivity to possible departures from MAR on gender differences between

Public health and epidemiological research in palliative care

Palliative care has been declared an important topic for public health. In turn, concepts of public health such as health promotion are highly relevant for populations in need of palliative care. In recent decades, public health and epidemiological research methods have been applied to study the circumstances of dying, including palliative care provision, in large communities or populations. This chapter starts by outlining several characteristics that distinguish public health from clinical research in palliative care. It subsequently gives an illustrative, rather than exhaustive, overview of several different methodological approaches that have been used in public health research in palliative care, as well as their advantages and limitations. The focus is on quantitative, epidemiological methods, which reflects the current dominant approach in public health research. These include population-based survey research and specifically the mortality follow-back design, the use of death certificate data to study place of death, studies of routinely collected administrative data on the population-level, and the use of existing epidemiological monitoring tools. Finally, the chapter describes the importance and contributions of qualitative and mixed methods public health research in palliative care. It does so by describing examples of community-centered palliative care initiatives and research in less visible populations. Acknowledging that no single of these methods can answer all relevant questions about a topic, this chapter argues that it is the combination of a diverse set of research methodologies that will lead to the best possible view on and understanding of the circumstances of dying and provision of palliative care in populations