The effect of care team-patient relationship on decision-making in relapsed/refractory multiple myeloma.
Authors: Chmielewski Cynthia , Flores Pérez Patricia Alejandra , Hurtado Martínez Jorge Arturo , Franco Hernandez Eduardo , Castro Bórquez Karla Mariana , Flores Quiroz Felipe , Orlowski Robert Z. , Strain Julie , Iadeluca Laura L. , Delwart Virginie , Solomon Rachel , Jensen Rachel M. , Ahlstrom Jennifer M. , Hydren Jay R. 
Published: June 2024

e19530

Background: Understanding patient involvement in shared decision making is critical for informed decision-making for relapsed/refractory multiple myeloma (RRMM) patients. This study explored the relationships between care teams and patients, who patients talk to and quantify the level of involvement, satisfaction, and comfort in the process of reaching a final change in treatment decision. Methods: HealthTree Cure Hub (PMID: 35271305) was used to conduct a survey for RRMM patients for their first change of therapy decision. Five-point Likert scales were used (1-Not at All Influential to 5-Extremely Influential; 1-Very Satisfied to 5-Very Dissatisfied), along with dichotomous and categorical choices. Results: 294 patients with RRMM were included with a mean age of 66±9, 53% were female, and 49% had graduate level education. Of 219 demographics respondents, 91% were white. Of the people patients talked to, the most influential individuals ranked by somewhat to extremely influential were: 1) myeloma specialist (84%), 2) community hematologist/oncologist (69%), and 3) spouse, partner or significant other (56%). Additionally, 67% of patients talked with nurses, PAs, or RNAs, with 49% finding them somewhat to extremely influential. Seeking a second opinion from a myeloma specialist was reported by 34% of patients and 50% of patients reported talking to other patients about treatment decisions. Patients varied in their description of their relationship/communication approach with their doctor: the doctor makes recommendations, the patients ask questions and they discuss preferences, then 1) patient proposes ideas and the decision is made together (37%), 2) then the patient makes the final decisions (21%) and 3) then the patient follows the doctor’s suggestions (14%). Importantly, a weak positive relationship existed between these levels of patient involvement in the treatment decisions and their involvement-satisfaction in choosing a treatment (r = 0.251, p < 0.001). About half of patients (51%) followed their care team recommendations without changes, while 31% opted for significant alterations, and 19% chose a modified option. Most patients reported making the final decision (59%), followed by their doctor (40%), and the minority reported a caregiver or partner (1%). Conclusions: This study identified that about half of patients engage in a collaborative and active decision-making process, which was related to their involvement-satisfaction of the treatment decision. Patients actively engaged with various individuals, including myeloma specialists, community hematologists/oncologists, and spouse/partners. Notably, discussions with nurses, PAs, and RNAs played a significant role, along with interactions with peers. Taken together a multifaceted engagement highlights the active role of patients in determining their treatment paths within a complex healthcare network.