Background There is little agreement about which outcomes are the most important outcomes to use in ACP trials. Previous studies have taken the first important steps to address this challenge by developing a consensus definition of ACP, a list of outcome measures for ACP studies and an organizing framework regarding outcomes that would define successful ACP in research. The extensive work they undertook included consulting multidisciplinary, international experts in Delphi panels. However, these expert panelist mainly consisted by healthcare professionals, lawyers, and researchers. Patients and family caregivers might rate the importance of outcomes for ACP differently. However, little is known about the most important and desired outcomes of ACP from patients’ and family caregivers’ perspective.
Methods/Design In this presentation, we will present the results of 1) a scoping review of the literature to identify desired outcomes of ACP from patients’ and families’ perspective, and 2) expert panels and/or interviews with patients, family caregivers, patient representatives, etc. to define in ranking in the outcomes according to their importance to achieve when engaging in the process ACP.
Conclusion The results of this study will provide an overview and ranking of outcomes that are considered as (most) important when engaging in ACP from patients’ and family caregivers’ perspectives. These results will add to the knowledge base regarding outcomes to measure successful ACP and might help researchers who are considering to perform evaluation studies of ACP interventions to reflect upon appropriate outcomes that are relevant to patients and family caregivers.