Patients and healthcare professionals’ perspectives on the implementation of shared decision making in multiple myeloma: a multinational qualitative study
摘要
Shared decision making (SDM) is highly relevant in oncology and cancer care, yet its application within multiple myeloma (MM) remains underexplored. This study aims to (1) investigate SDM implementation in MM clinical practice, (2) assess the role of various stakeholders next to haematologists in the SDM process, and (3) identify barriers and potential solutions to SDM implementation in MM care.
MethodsThis qualitative study consisted of semi-structured interviews with patients (n = 39), haematologists (n = 15), and haematology nurses (n = 5) from nine countries in Europe and Israel. Interviews were analysed thematically.
ResultsMM patients expressed diverse preferences for involvement in treatment decisions, emphasising the importance of receiving information, engaging in discussions, and having their opinions considered. However, participants reported varied experiences regarding the application of SDM. While most haematologists believed SDM was consistently attempted, patients frequently indicated that their preferences, concerns, and desired level of involvement were not explicitly solicited. Discussions about the option of no treatment were notably under-discussed, as observed by patients and acknowledged by haematologists. Patients uniformly reported that the assessment of their preferred information-seeking approach was consistently overlooked, a critical step in SDM. Haematology nurses, the multidisciplinary team, family members, and patient organisations were found to play an invaluable role in the SDM process, each having their own complementary role alongside haematologists. Barriers to SDM implementation included haematologists’ reluctance to inform or involve patients, patients’ emotional status, lack of reliable patient-focused information, absence of haematology nurses, and time constraints. Patient decision aids (PtDAs) were perceived as tools to facilitate SDM, with a majority of participants expressing positive attitudes towards them, recognising their value in specific contexts.
ConclusionWhile SDM is partially applied in MM care, there remains room for improvement. This can be done by amplifying the role of haematology nurses and other multidisciplinary team members in the SDM process. Additionally, efforts should focus on increasing the role of patient organisations in raising awareness about SDM and empowering patients to actively participate in SDM. The recommendations derived from this study along with the insights for PtDA development can serve as an initial stride towards increasing SDM implementation in MM care.