Background Shared decision making (SDM) and advance care planning (ACP) are two patient-centered concepts that support patients, their relatives and clinicians to engage in a decision-making process in which patient autonomy is better respected. Integrating the two complex interventions into one may support patients with moderate and high treatment complication risks to make well-informed choices. The purpose of this study was a) to determine how the two concepts are currently applied in usual care and b) to build an integrative evidence based decision aid for patients with aortic stenosis (AS).
Methods For evaluating the status quo, a mixed methods approach was applied. We performed direct observations of patient-clinician consultations and analyzed patients electronic records to determine how SDM and ACP is being applied in current decision-making process. The data were analyzed using thematic analysis with focus on ACP and SDM elements. We further developed a decision aid according to the Decision Aid Factory approach.
Results 15 consultations were observed and 22 randomly selected patient records (from 299) were analyzed until saturation of topics occurred. It revealed that clinicians documented single SDM and ACP elements. Yet no integral process of ‘full ACP or SDM procedure’ was observed. The procedure in case of complications was often prescribed by clinicians due to urgency, instead of engaging in an ACP process with the patient. We used the results, supported by input from expert panels and patient representatives to develop a comprehensive decision aid, separated in three parts: overview, detailed information and graphical comparison of three most common treatment options: transcatheter aortic valve implantation (TAVI), surgical aortic valve replacement (SAVR) or palliative care.
Conclusions Meaningful integration of SDM and ACP into a decision aid may help patients make better medical choices regarding their immediate and advance care planning.
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