More questions than answers - Investigating questions asked by patients and online, real-world question prompt list tools to realise the benefits for patients, health professionals, and healthcare decision making

Abstract

Background: Patients asking questions in consultations serve a variety of purposes including facilitation of shared decision making (SDM). Safety and quality guidelines in Australia and internationally include the need for person-centred care (PCC) and SDM. Question prompt list (QPL) tools improve the information patients receive from their health practitioners and support SDM. Online QPL tools have been developed to support question asking, however, these have not been evaluated. This thesis explores how these tools are being used, QPL tools available in the online environment and perceptions and experiences of key stakeholders about the use of real world QPLs. Methods: This thesis incorporated different methods to address the research questions, including: a literature review of QPLs; mixed methods analysis of an online QPL; an environmental scan of the QPL tools available online; focus groups and interviews to establish the perceptions of doctors to patients’ questions and QPLs; and finally, a longitudinal qualitative journey study with patients seeking information about their health care was used to explore how QPLs influenced their search. Results: There is an abundance of QPLs available in the online environment and evidence that these are being accessed. Considerable variation exists between tools including the level of literacy required to understand the questions and instructions. Participating doctors saw benefits for QPLs if they are feasible for implementation into practice. QPLs were used in various ways by participants in the journey study. The experience and knowledge of participants with the health system influenced their thoughts and use of the introduced QPLs. Doctor and patient participants both reported many barriers and facilitators to asking questions in health consultations and how QPLs could assist them in overcoming barriers. Themes across the studies in this thesis included the influence of power inequity on question asking by patients in consultations; the influence of health literacy and accessibility of QPLs on their use; and the effect that normalisation of patients’ question and the use of QPLs might have on PCC and SDM. Conclusions: Despite the vast number of QPLs and research findings of their benefits there are no guidelines for their development or implementation such as those which exist for other SDM tools like decision aids. Addressing issues of feasibility, accessibility and normalisation of question asking by patients are crucial next steps in realising the benefits of QPLs in health care.