Epistemological goals and the use of health-related quality of life and patient-reported outcome measures

Activity: Talk or presentation typesOral presentation

Description

Part of the Symposium "Redefining Boundaries: Applying philosophy to Health-Related Quality of Life" organised by Leah McClimans, U South Carolina.

Aims: Research and practices focusing on health-related quality of life (HRQL) sit on the boundaries between professions and disciplines. Such boundary work, often described with terms such as inter-/multi-/trans-disciplinarity, brings different and potentially conflicting epistemologies together. Therefore, stakeholders may share a similar mission, such as ISOQOL’s ‘improving (HR)QL for people everywhere by creating a future in which their perspective is integral in health research, care and policy’. But underlying assumptions may lead to different priorities in research and care. The top-down perspective on this problem is often part of research training: working with a particular investigative or assessment goal in mind suggests which methods are appropriate to generate informative data. The situation in applied research and health care practice is usually reversed, with a range of stakeholders presenting and discussing operationalizations (i.e., methods), but their underlying assumptions and consequences for answering a research or practice question are not always unpacked. The aim of this presentation is to discuss competing epistemologies with relevance to HRQL research and practice, focusing on three key areas.

Methods: Wilson and Cleary's model is used to describe health outcomes and contextualizes the three selected areas (perspectives, stakeholder epistemologies, detecting change) which are used to contrast epistemologies and their consequences when considering HRQL outcomes.

Results: First, the presentation re-iterates arguments around different perspectives on assessing HRQL (e.g., patient, clinician, proxy) and their consequences for “patient-centeredness”. Building on these arguments, the second part will focus on the knowledge goals of stakeholders: whether an assessment is planned (and by whom) with the goal to learn for example about an individual patient, a group of patients or an organization is particularly suited to illustrate the role of the context in which HRQL-related practice is embedded. The third area focuses on a concrete example, the role of epistemology in deciding whether statistical indicators of change serve knowledge goals of stakeholders.

Conclusions: The examples illustrate that epistemological assumptions crucially depend on goals pursued by particular stakeholders in a particular situation. Focusing on the commensurability and connectivity of such assumptions offers information about which concrete methods to use and their potential for integration or triangulation.
Period22 Oct 2022
Event titleInternational Society for Quality of Life Research (ISOQOL) 29th Annual Conference: Redefining boundaries – breaking new ground in patient-centered outcomes research
Event typeConference
LocationPrague, Czech RepublicShow on map