Discrete Choice Experiments to Elicit Patient Preferences for Decision Making in Transplantation

Abstract

Providing care for transplant recipients is challenging given the need to maintain optimal graft function and survival while managing the debilitating side effects and complications associated with immunosuppression including infection, cancer, new-onset diabetes mellitus, and cardiovascular disease. Given the complexity of treatment options and the uncertainty about long-term benefits and harms of treatment, understanding patient preferences and values are key to ensuring that clinical decisions take into consideration patient priorities to support shared decision making and self-management. Choice experiments are increasingly used to quantify patient and community preferences, including in the field of transplantation. Discrete choice experiments (DCEs) are a well-established, validated methodology used to elicit preferences for decision making in health and other settings. In transplantation, for example, DCEs have been used to elicit patient preferences for outcomes following kidney transplantation, to identify community preferences factors for organ allocation and in establishing core outcomes. This article provides an overview of the concepts and methods used in the design of DCEs and how patients’ preferences can be applied in shared decision making in transplantation.

Physical Activity Preferences of People Living with Brain Injury: Formative Qualitative Research to Develop a Discrete Choice Experiment

“…Using the attributes and levels identified in stages 1–3, we developed scenarios (DCE question ‘blocks’) containing different combinations that would be used randomly in the online survey [ 33 ]. These scenarios were inserted into a wider survey prototype that included the participant information statement, consent form, screening questions, questions about pre- and post-injury physical activity, current function and demographics.…”

“…Discrete choice experiment results can also support the implementation of guidelines by providing much-needed information about optimal resource allocation. Formative research to develop DCEs often generates rich data about the views and experiences that underpin patients’ preferences, which can be used to inform patient/clinician consultations [ 31 – 33 ].…”

The challenge of eliciting opinions of gene therapy for SCD

“…James et al describe the role of eliciting patient preference information with solid organ transplants. 11 DCEs can, thus, be used in the context of gene therapy for SCD to facilitate shared decision-making, strengthen patient-centered research, and determine priorities for outcomes after transplantation. The SCD population is eager to learn more about gene therapy technology.…”