Where is Shared Decision Making in Relapsed/Refractory Multiple Myeloma? A Qualitative Study: Presenter(s): Ilyse Kenis, KU Leuven, Belgium. (April 2023)

• Record Type: Journal Article
• Authors: Foulon, Veerle; Sillis, Laure; Panis, Laura Int; Van Hecke, Ann; Damiaens, Amber
• Is Part Of: Patient education and counseling. Volume 109(2023)Supplement
• Page Start: 9
• Publication Date: 2023-04
• Subjects: Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2022.10.031
• Languages: English
• ISSNs: 0738-3991

Abstract

Abstract : Background: Over the past decade, treatment options for relapsed/refractory multiple myeloma (RRMM) have increased substantially. To find the best therapy for each individual patient, patient preferences should be considered. Therefore, shared decision making (SDM) for RRMM treatments is key. The aim of this study was to explore perceptions of patients, caregivers and healthcare professionals (HCPs) on SDM for RRMM treatment and investigate current SDM practices. Methods: Exploratory qualitative study, including semi-structured interviews with 17 RRMM patients, 8 informal caregivers, and 19 HCPs (haematologists, nurses, onco-coaches, and hospital pharmacists). Participants were recruited in five Belgian hospitals between January and November 2020. An iterative inductive approach was used to analyze the findings. Findings: The concept of SDM seemed to be unknown to most patients and caregivers. Some overestimated their expected role in SDM, thinking it entails making decisions on their own; others saw their role in SDM limited to agreeing or disagreeing upon a treatment proposal. Misconceptions on SDM were also present among HCPs. All HCPs recognized the importance of involving patients in the decision-making process but seem to struggle with the operationalisation of SDM. Some HCPs felt they might burden patients with the task of involvement: they think it is too difficult for patients, and only consider to involve 'strong' patients. The interviews showed that most patients were not actively involved in the decision-making process. Mainly reactive and ad hoc behaviour occurs, driven by patients themselves. Decision making especially lacked the essential exploration of patients' needs and preferences. Discussion: Based on the results, SDM still seems uncommon in RRMM clinical practice. Education of patients and HCPs is needed to make them familiar with the concept of SDM, dispel any misconceptions and help them to look beyond perceived barriers. Moreover, tools to support implementation of SDM practices could be helpful.