Conceptualising and measuring patient experience in the diagnosis of cancer

Introduction

Relatedly, researchers, research funders and policy-makers active in the field of diagnostic innovation often invoke the importance of patient experience of diagnostic testing, or that of ‘acceptability’ of tests (to both patients and healthcare providers). However, and in spite of this general acceptance, there is a current lack of robust conceptual framework of patient experience of testing, and as a result no tools to appropriately measure patient experience.

Aims & objectives

We will develop and publish a conceptual framework to guide the measurement of patient experience of diagnostic testing, and propose new approaches for its measurement.

Methodology

Conceptual framework: Development and evaluation of the framework will encompass literature reviews, interactions with CanTest faculty, and dialogue with stakeholders.

Instrument development: We will follow best practice for survey development. This includes item generation / long-listing (through patient interviews and literature reviews), refining the item pool through discussion with stakeholders (CanTest faculty, user involvement), fieldwork to allow for psychometric testing and ‘shortening’ of the instrument, and further confirmatory fieldwork of a revised and final measure/sub-scale.

Outputs & impact

We will publish both the conceptual framework and the new patient experience measure. The development of the conceptual framework will directly lead to a CanTest methodological paper that we will aim to become the ‘point of reference’ for future research in this area, with implications for researchers and practitioners. The development of instruments facilitating the evaluation of experience could influence policy change, local service improvements, as well as informing patient choice.

Next steps

The conceptual framework is in development.

Publications

• Forster AS, Rubin G, Emery J, Thompson M, Sutton S, de Wit N, Walter FM, Lyratzopoulos G. Measuring patient experience of diagnostic care and acceptability of testing. De Gruyter, 2021, doi: 10.1515/dx-2020-0112