---
title: "Shared decision-making and patient involvement in multiple myeloma: cross-country survey findings"
id: "plos-one-20-enhancing-patient-involvement-through-shared-decision-making-are-we-there-yet"
canonical_url: "https://medichelpline.com/clinical-feed/plos-one-20-enhancing-patient-involvement-through-shared-decision-making-are-we-there-yet"
content_type: "clinical_feed_article"
specialty: "Oncology"
source_name: "PLOS ONE (Medicine)"
source_url: "https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0356989"
published_at: "2026-08-28T14:00:00.000Z"
evidence_level: "Journal Feed"
license: "CC-BY-NC-4.0 / Informational Use"
---
# Shared decision-making and patient involvement in multiple myeloma: cross-country survey findings
## Provenance & Clinical Metadata
- **Canonical URL:** https://medichelpline.com/clinical-feed/plos-one-20-enhancing-patient-involvement-through-shared-decision-making-are-we-there-yet
- **Specialty:** [Oncology](https://medichelpline.com/clinical-feed/oncology.md)
- **Primary Source:** PLOS ONE (Medicine)
- **Source URL:** [Original Journal Publication](https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0356989)
- **Published At:** 2026-08-28T14:00:00.000Z
- **Evidence Rating:** Journal Feed
## Executive GIST (TL;DR)
- This cross-country survey assessed awareness and practice of **shared decision-making (SDM)** among patients with **multiple myeloma (MM)** and healthcare professionals (HCPs). 558 patients and 89 HCPs completed the online survey launched in late 2023. - Respondents were international, with many patients from the Netherlands, Israel and Belgium and many HCPs from France and Israel; the survey was developed in English and distributed via Myeloma Patients Europe and collaborating networks. - Knowledge gaps about SDM were identified: 56.6% of patients and 28.1% of HCPs reported they had not previously heard of the term SDM. - Almost all patients (96.1%) reported that they want to be involved in treatment decisions. Only 3.9% stated they did not want involvement, citing concerns about insufficient knowledge to decide or habitually leaving decisions to clinicians. - All responding HCPs indicated that MM patients should be involved in decision-making if they wish to be involved, suggesting clinician willingness to support involvement. - Patients reported higher levels of involvement in recent consultations but expressed a desire to be more involved in initial decisions made shortly after diagnosis. - Statistical analysis found no significant associations between participants’ characteristics (for example, age, gender or health literacy as reported in the survey) and levels of involvement or willingness to participate. - The authors highlight implementation challenges: understanding what SDM entails, operationalizing involvement in consultations, and assessing individual patient preferences and needs in practice. - Data availability and funding: the minimal dataset is provided in the paper and supporting files; further data available on request from Myeloma Patients Europe. The study was funded by Myeloma Patients Europe, which received project funding from Takeda; the funder did not influence study design, analysis or manuscript writing. - The study situates findings within existing guidance (ASCO, ESMO) and the evolving, preference-sensitive treatment landscape in MM (including emerging therapies) to argue that SDM is particularly relevant for MM care.
## Clinical Analysis & Structured Key Points
Enhancing patient involvement through shared decision-making: Are we there yet in multiple myeloma? Findings from a cross-country survey | PLOS One Browse Subject Areas ? Click through the PLOS taxonomy to find articles in your field. For more information about PLOS Subject Areas, click here . Article Authors Metrics Comments Media Coverage Reader Comments Figures Figures Abstract Introduction Shared decision-making (SDM) can enhance patient involvement in treatment and care decisions. Still, questions remain on how multiple myeloma (MM) patients perceive and evaluate their current and desired roles in these decisions and whether characteristics influence their willingness to be involved. This study aimed to identify I) the current knowledge of the concept SDM among MM patients and healthcare professionals (HCPs) involved in MM care, II) how MM patients are and want to be involved in decisions, and III) differences in the willingness to be involved in view of participants’ characteristics (e.g., age, gender, health literacy). Methods An online survey for MM patients and HCPs involved in MM care was launched in October and December 2023, respectively. The data was statistically analyzed. Results 558 patients and 89 HCPs completed the survey. Most patients lived in the Netherlands (28.7%), Israel (23.5%) and Belgium (15.8%), and most HCPs lived in France (39.3%) and Israel (24.7%). 56.6% of the patients and 28.1% of the HCPs had not previously heard of SDM. Almost all patients (96.1%) indicated wanting to be involved in treatment decisions. 3.9% of patients indicated not wanting to be involved, because they did not know whether they would have enough knowledge to decide or because they were used to the HCP deciding. All HCPs believed that MM patients should be involved if they want to. Patients had higher involvement scores at recent consultations and desired to be more involved in initial decisions following diagnosis. The survey revealed no significant differences in participants’ involvement and their characteristics. Conclusion MM patients want to be involved in decisions and HCPs are willing to involve MM patients. However, challenges remain concerning the practical implementation of involvement and SDM. This highlights the importance of understanding SDM and patient involvement and assessing the individual needs and preferences of MM patients. Citation: Verbeke C, Broekmans J, Schoefs E, ten Seldam S, Morgan K, Joyner K, et al. (2026) Enhancing patient involvement through shared decision-making: Are we there yet in multiple myeloma? Findings from a cross-country survey. PLoS One 21(8): e0356989. https://doi.org/10.1371/journal.pone.0356989 Editor: Mehmet Baysal, Tekirdag Namik Kemal University: Tekirdag Namik Kemal Universitesi, TÜRKIYE Received: May 12, 2026; Accepted: August 8, 2026; Published: August 28, 2026 Copyright: © 2026 Verbeke et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability: The minimal data set is available in the paper and the supporting information files. Further data can be shared on request by contacting MPE ( research@mpeurope.org ). Funding: Financial support for this study was provided by Myeloma Patients Europe, who received funding for this project from Takeda. The funder (Takeda) played no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript. Competing interests: Rosanne Janssens contributed to this study while previously working at KU Leuven. Rosanne Janssens is currently no longer working at KU Leuven. Introduction Involving patients in their treatment and care is considered a fundamental goal of modern healthcare, as it has been associated with several benefits, including improved satisfaction and therapy adherence, as well as greater patient empowerment and a strong sense of control [ 1 , 2 ]. Shared decision-making (SDM) can support and facilitate patient involvement in treatment and care decisions. Within the SDM process, patients and treating physicians make treatment decisions together, ensuring that choices reflect both patient preferences (e.g., regarding mode and location of administration, side effects management, and work and family priorities) and clinicians’ expertise [ 3 ]. Several models have conceptualized SDM and the roles of those involved [ 4 – 7 ]. One widely recognized is the three talk model of Elwyn et al. [ 7 ], which describes SDM between patients and healthcare professionals (HCPs) as a three-step process: I) ‘team talk’ in which the clinician emphasizes that a decision needs to be made and that patient and clinician work together as a team, while offering support and exploring the patient’s goals and preferred level of involvement, II) ‘option talk’, in which available treatment and care options are discussed, and III) ‘decision talk’, in which a treatment decision is made based on patients-informed preferences. Applying SDM is particularly important in preference-sensitive contexts (i.e., a context where multiple treatment options exist, where evidence supporting one option is uncertain or variable, or where patients’ views about the most important benefits and risks differ [ 8 ]), such as oncology and more in particular multiple myeloma (MM) [ 8 – 11 ]. MM is a rare hematological cancer that is currently considered incurable. Many treatments exist, and the treatment landscape keeps evolving with upcoming new treatments (e.g., CAR-T cell therapy and bispecific antibodies) and treatment combinations, each with their own characteristics (e.g., effects on survival, efficacy, toxicity) [ 12 – 15 ]. Guidelines (e.g., ASCO and ESMO guidelines) list treatment options that HCPs and patients can further discuss [ 13 , 15 ]. In the ASCO guidelines the necessity of SDM, given the many effective treatment options available for both newly diagnosed and relapsed and refractory MM patients, and the importance of active participation of patients in decision-making, is highlighted [ 13 ]. In some countries where treatment options are limited [ 16 ], SDM can still be of added value in psychosocial care or other care aspects [ 17 , 18 ]. Some research has been conducted among MM patients and/or HCPs involved in the treatment of MM, investigating elements of SDM or patient involvement. One interview study focused on the development of trust between MM patients and clinicians, showing that communication training and SDM tools can enhance this trust development [ 19 ]. Other interview studies aimed to get insights into the perspectives of HCPs [ 20 ] and MM patients [ 21 , 22 ], regarding SDM, revealing that patients want to be involved in different ways and to different extents [ 22 ]. The studies also identified challenges, barriers and facilitators for the implementation of SDM in MM care [ 20 , 21 ]. A survey study among relapsed/refractory MM patients and HCPs in the USA investigated their perspectives on the treatment process, more particular the extent and nature of SDM and how patients and physicians communicate during treatment selection [ 23 ]. Although some research has been performed showing important elements and the relevance of SDM and involving patients in MM care, questions remain regarding how MM patients perceive and evaluate both their current and desired involvement and their roles in treatment and care decision-making. Moreover, patients’ characteristics that may influence willingness to participate in these decisions seem underexplored. To investigate these gaps, a project was set up together with the patient organization Myeloma Patients Europe (MPE), consisting of different steps including our prior interview study with MM patients and HCPs in diverse countries in Europe and Israel. Findings of the study showed willingness towards SDM in MM care. However, patients reported a lack of assessment of their desired involvement and their preferences and needs. The interviews also revealed that the preferred level of involvement in the SDM process seemed to be highly individual among MM patients [ 21 ]. Following the interview study, this survey study was conducted aiming to quantify elements of patients’ involvement and SDM and to provide insights on I) the current knowledge of the concept SDM among MM patients and HCPs involved in MM care, II) current and desired involvement of MM patients in clinical decision-making, and III) possible differences in the willingness to be involved related to participants’ characteristics. Methods Survey development An English survey was created for MM patients and HCPs involved in MM care. The surveys for both groups were largely similar, with specific questions adapted where needed for each target group. The patient organization MPE and a steering committee (consisting of MM patients (n = 3), researchers (n = 2), haematologists (n = 3), and a caregiver (n = 1)) provided feedback on the survey. The survey was translated into different languages (Dutch, French, Spanish, German, Swedish, Slovenian, Hebrew) to give MM patients and HCPs the opportunity to answer in their preferred language and was reviewed by native speaking patients and HCPs. The questions were implemented in Qualtrics software. To ensure clarity and understandability, the survey was piloted with MM patients (n = 3) and HCPs involved in MM (n = 3) and further refined based on the received feedback. The survey consisted of different parts. An introduction and background information section were provided followed by the survey explanation and questions. The survey questions were created around four main themes: I) participant characteristics, II) patient involvement, III) sources of information, and IV) roles in decision-making ( S1 Appendix ). In this paper the main focus will be on the questions related to patient involvement. The survey included a combination of closed-ended multiple choice questions and validated instruments next to survey-specific questions. For the patient survey, the validated questions included: the SDM-Q-9 [ 24 ], Chew’s Health Literacy Screening questions [ 25 ] and the visual analogue scale [ 26 ] while the HCP survey included the SDM-Q-Doc [ 27 ]. These SDM questionnaires (SDM-Q-9 and SDM-Q-Doc) consist of nine statements reflecting on different steps of the SDM process. Both questionnaires use the same scale and can be compared. The SDM-Q-9 and SDM-Q-Doc are transformed to a 0–100 score, with a higher score indicating that the SDM steps were applied to a higher extent. The Chew’s Health Literacy Screening questions aim to assess the health literacy of patients, with a higher score indicating a lower healthy literacy [ 25 ]. The visual analogue scale in the patient survey, measured the self-rated health: “How would you currently rate your health on a scale from 0 to 100?”, where 0 represented “poor health” and 100 represented “excellent health”. Participants and recruitment The MM patient survey was distributed online from October 2023 to February 2024. This survey targeted patients over 18 years old, with a self-reported MM diagnosis. The HCP survey was distributed online from December 2023 to March 2024, targeting HCPs involved in MM care (e.g., hematologist, oncologist, hemato-oncologist, nurse specialist, nurse). The link to the online surveys was disseminated via the network of the patient organization MPE (e.g., website and social media). Ethical approval was obtained from the Ethical Committee Research UZ/KU Leuven in Belgium (S66580). The data collection in the survey was anonymous. As advised by our Ethical Committee, participants were informed via an information letter, and no informed consent was requested. Survey analysis The data of the anonymous survey was processed, and all answers were summarized as group characteristics. Participants’ characteristics were summarized in SPPS using descriptive statistics. Continuous variables were summarized using mean and standard deviation, or median and interquartile range, as appropriate. Categorical data were summarized using count and percentages. The data from the open survey questions was analyzed thematically using the framework analysis [ 28 ]. Associations between participants’ responses and several relevant characteristics were investigated. Furthermore, associations between patients’ and HCPs’ responses regarding involvement and receiving information were also investigated. Associations between two continuous variables were tested using the Pearson correlation when the relationship was linear, and the Spearman correlation otherwise. Associations between two categorical variables were tested using the Chi Square Test, or Fisher’s exact test when some cells had a count lower than five. Finally, associations between a continuous variable and a categorical variable were tested using a t-test when the continuous variable was normally distributed, and Wilcoxon rank sum test otherwise. If the categorical variable had more than two categories, a one-way ANOVA was used to compare the group means when the assumptions of normality and homoscedasticity were met, and the non-parametric Kruskal-Wallis test was used otherwise. All tests were two-sided and performed at a significance level of 0.05. Since the study is exploratory, no correction for multiple testing was applied. All p-values should then be interpreted cautiously and be considered hypothesis-generating. All analyses were conducted using R [ 29 ]. Results Participants’ characteristics 558 MM patients and 89 HCPs fully answered the survey. Patients had a mean age of 65.39 years (SD = 9.31) and included 269 females (48.2%) and 268 males (51.3%). The largest group of patients came from The Netherlands (n = 160, 28.7%), Israel (n = 131, 23.5%) and Belgium (n = 88, 15.8%). The majority reported that they did not have a medical background (e.g., doctor, nurse, pharmacist, health care personnel) (n = 472, 84.6%) and that their native language was spoken at the hospital (n = 537, 96.2%).139 of the patients (24.9%) had more than three treatment lines. HCPs had a mean age of 47.17 years (SD = 11.15) and included 56 females (62.9%) and 31 males (34.8%). The largest group of HCPs came from France (n = 35, 39.3%) and Israel (n = 22, 24.7%). The majority of the HCPs (n = 49, 55.1%) were haematologists ( Table 1 and Table 2 ). Download: PNG larger image TIFF original image Table 1. Patient characteristics (n = 558). https://doi.org/10.1371/journal.pone.0356989.t001 Download: PNG larger image TIFF original image Table 2. HCPs characteristics (n = 89). https://doi.org/10.1371/journal.pone.0356989.t002 Knowledge of the SDM concept A total of 316 patients (56.6%) and 25 HCPs (28.1%) had not previously heard of the SDM concept. Patients (n = 242, 43.4%) and HCPs (n = 64, 71.9%) that had previously heard of the concept, were asked to describe SDM in their own words. Most common terminology by both patients and HCPs were related to ‘providing and receiving information’ (patients: n = 89, 36.8%; HCPs: n = 25, 39.1%) and ‘joint decisions’ (patients: n = 86, 35.5%; HCPs: n = 25, 39.1%). Other elements of SDM and statements of the SDM questionnaires [ 24 , 27 ], such as ‘making clear that a decision needs to be made’ and ‘assessing patients’ preferred role in the decision-making process’, were not spontaneously written up (S2 Fig 1 in S2 Appendix ). Associations between patients’ awareness of the SDM concept and their characteristics (i.e., age, health literacy, gender, country, level of education, health status, treatment location, treatment duration, treatment lines, medical background and native language spoken in the hospital) were tested. For the following characteristics a strong association was found: a) gender (p = 0.007): more women had heard of the SDM concept, b) country (p < 0.001), c) level of education (p = 0.009), d) health status (p = 0.004): participants with a better health status indicated to have heard more of the SDM concept, and e) medical background (p = 0.001). Percentages between categories of these variables are presented in S2 Tables 1–6 in S2 Appendix . For HCPs, no strong association between their knowledge of SDM and their characteristics (i.e., age, gender, HCP type, workplace, years of experience, minutes per consultation, currently involved in research and currently involved in clinical guideline development) were found (S2 Table 7 in S2 Appendix ). Current patient involvement Involvement during consultations. The SDM-Q-9 and SDM-Q-Doc questionnaires [ 24 , 27 ] were used to assess patients’ and HCPs’ experiences of patients’ current involvement in the decision-making process, respectively. All HCPs agreed that the advantages and disadvantages of treatment options are explained and that as HCP, they help their patient to understand all the information (i.e., step 4 and step 5 of the SDM questionnaires). On the other hand, around 30% of the participating patients disagreed that these steps were applied during their consultation ( Fig 1 ). When comparing the questionnaires, SDM-Q scores were significantly higher in HCPs than in patients (t-test, p < 0.001), with patients having a lower median score (58, IQR: 42–71) than HCPs (78, IQR: 71–84), meaning that HCPs believe that during consultations they are applying the steps of the SDM process to a higher extent, than how it is perceived by patients (S3 Table 1 in S3 Appendix ). Download: PNG larger image TIFF original image Fig 1. Visualization of the SDM-Q-9 and SDM-Q-Doc results. HCP: Healthcare professional. Patients were asked to reflect on a recent consultation with their treating physician where a decision had to be made and to what extent they agree with the statements (SDM-Q-9). HCPs were asked to reflect on a recent consultation where a decision had to be made for a multiple myeloma patient and to what extent they agree with the statements (SDM-Q-Doc). Both treating physicians and other members of the multidisciplinary team (e.g., nurse specialists) could participate, therefore, the answer option N/A was added in the SDM-Q-Doc questionnaire. https://doi.org/10.1371/journal.pone.0356989.g001 Patients were asked to what extent they felt involved during a) initial consultations following diagnosis and b) recent consultations. Most of the patients reported that they felt ‘somewhat’ to ‘extremely’ involved, both during initial (n = 368, 65.9%) and recent (n = 413,74.0%) consultations. More patients scored higher involvement at recent consultations ( Table 3 ). Download: PNG larger image TIFF original image Table 3. Extent patients feel involved during consultations. https://doi.org/10.1371/journal.pone.0356989.t003 Most patients described the relationship with their treating physician as ‘very good’ (n = 317, 56.8%) or ‘good’ (n = 173, 31.0%). Some patients rated their relationship ‘neither bad nor good’ (n = 61, 10.9%). Few patients believed their relationship was ‘bad’ (n = 4, 0.7%) or ‘very bad’ (n = 3, 0.5%). This relationship was tested against involvement in recent consultations, SDM-Q-9 score and whether the HCP asked for the preferred way of receiving information or not, as described below. Fisher’s exact test gave a significant p-value (p < 0.001), showing a difference in involvement in recent consultations depending on the relationship with the physician. When removing the ‘I do not know’ option, both variables can be considered ordinal, allowing the Spearman correlation to be calculated. The correlation was + 0.36 (associated p-value <0.001), indicating that patients who perceived more involvement also tended to report a better relationship with their physician (S3 Table 2 in S3 Appendix ). A one-way ANOVA showed a significant difference in SDM-Q-9 score across categori
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