MMpowerment: Empowering patients with multiple myeloma for shared decision-making by developing an intervention to integrate personal preferences into digital care pathways

Abstract

ObjectiveAs part of a quality improvement initiative in the context of value-based health care we aimed to optimize the shared decision-making (SDM) process in the care pathway for Multiple Myeloma as part of a digital care pathway (DCP). For this, more insight was needed in health care professionals’ (HCPs’) perspectives on SDM, and how SDM elements could be addressed in a DCP for MM to facilitate HCPs’ performance of SDM. MethodsHCPs were interviewed as per the theory of planned behaviour and the model of organizational context and SDM (phase 1). Multidisciplinary development sessions were organized to discuss concepts of the solution with HCPs (phase 2). The solution was evaluated with two patients from the quality improvement team. ResultsIn phase 1, ten interviews were held. HCPs’ attitudes and the subjective norm towards SDM were positive, and the intention to perform SDM was high. The clinical environment (physical context, disease characteristics, assumptions about patient characteristics, and workflows) for MM posed challenges on the actual SDM behavior. Education and use of the DCP to create awareness of SDM were seen as possible facilitators for SDM. A prepared and active patient would facilitate the SDM process. In phase 2, three concept solutions were developed before arriving at the final solution. The final solution consisted of three elements to incorporate SDM steps in the DCP: 1) creating patient awareness and activation with two questions about their preferences prior to a consultation, 2) visualisation of preferences centrally in the DCP to trigger HCP to discuss them, 3) monitoring and improving SDM with patient-questionnaires after decision-making. Patients and HCPs were willing to implement it. ConclusionHCPs intention to engage in SDM was high, but their actual behaviour was challenged by the clinical environment. A 3-element DCP-based intervention was developed to increase SDM. Patient or public contributionInput on the solution was obtained from end-users including two patients and ten healthcare professionals.