Discussing Cost and Value in Patient Decision Aids and Shared Decision Making: A Call to Action

Abstract

Direct and indirect costs of care influence patients’ health choices and the ability to implement those choices. Despite the significant impact of care costs on patients’ health and daily lives, patient decision aid (PtDA) and shared decision-making (SDM) guidelines almost never mention a discussion of costs of treatment options as part of minimum standards or quality criteria. Given the growing study of the impact of costs in health decisions and the rising costs of care more broadly, in fall 2021 we organized a symposium at the Society for Medical Decision Making’s annual meeting. The focus was on the role of cost information in PtDAs and SDM. Panelists gave an overview of work in this space at this virtual meeting, and attendees engaged in rich discussion with the panelists about the state of the problem as well as ideas and challenges in incorporating cost-related issues into routine care. This article summarizes and extends our discussion based on the literature in this area and calls for action. We recommend that PtDA and SDM guidelines routinely include a discussion of direct and indirect care costs and that researchers measure the frequency, quality, and response to this information.

The impact of adding cost information to a conversation aid to support shared decision making about low‐risk prostate cancer treatment: Results of a stepped‐wedge cluster randomised trial

“…Most decision aids and decision aid standards do not include cost information, 9,50 even though patients report that costs impact their choices and the implementation of those choices. 12,51,52 Despite extensive engagement with the clinical teams and high enthusiasm from both clinicians and patients using the intervention, the intervention was not significantly associated with the hypothesised outcomes, though we were unable to robustly test outcomes due to recruitment challenges. There were early indicators of a positive association between the intervention and cost conversation frequency in adjusted analyses, though these results…”

“…This study evaluated an intervention to improve cost discussions between urologic surgeons and patients when deciding how to manage low‐risk prostate cancer. Most decision aids and decision aid standards do not include cost information, 9,50 even though patients report that costs impact their choices and the implementation of those choices 12,51,52 . Despite extensive engagement with the clinical teams and high enthusiasm from both clinicians and patients using the intervention, the intervention was not significantly associated with the hypothesised outcomes, though we were unable to robustly test outcomes due to recruitment challenges.…”

“…Communicating the relative or specific costs of options is an important part of patient-centred decision-making. 12 Patients want to know about cost information 13,14 and clinicians acknowledge its importance and impact on patients' choices and adherence to care. 15 Yet clinician communication and patient decision aids rarely include costs of treatment options to support decisions.…”

“…In addition to the direct costs of healthcare, patients experience indirect cost burdens such as lost wages from missing work for appointments or illness‐related disability. Communicating the relative or specific costs of options is an important part of patient‐centred decision‐making 12 . Patients want to know about cost information 13,14 and clinicians acknowledge its importance and impact on patients' choices and adherence to care 15 .…”

“You Have to Rob Peter to Pay Paul So Your Kid Can Breathe”

“…Policies should consider the cost burden to families and not just individuals to avoid situations like the ACA’s “family glitch” where thresholds for eligibility for subsidized coverage in the ACA Marketplaces was based on individual, not family, premiums 44 . Improving health insurance literacy and promoting cost discussions with providers could lead to more informed shared decision-making that anticipates the costs and intrafamilial spillover effects of different treatment plans 45,46 . Public programs that provide assistance with necessities like food and housing could reduce the competing priorities in family budgets that force trade-offs with health care needs 47,48 …”