Patients and healthcare professionals' perspectives on the implementation of shared decision making in multiple myeloma: a multinational qualitative study.

Background

There is a growing emphasis on patient involvement in healthcare decision making, as seen in diverse policy initiatives worldwide promoting patient-centred care [ 1 – 5 ]. Healthcare professionals (HCPs) bear an ethical duty to involve patients in decisions that impact their lives, as patients are uniquely positioned to assess and determine the risks and side effects they are willing to endure [ 6 , 7 ]. Further, patient involvement not only empowers individuals, but also fosters a sense of control over their own disease, leading to improved therapy adherence, autonomy, and personal responsibility [ 1 , 8 , 9 ].

In the last decades, shared decision making (SDM) has emerged as a cornerstone concept of patient-centred care, essential to make a shift towards increased patient involvement in clinical decision-making [ 9 , 10 ]. In this collaborative approach at least two participants, the clinician and the patient, are involved and support each other in reaching a treatment decision [ 7 ]. The most commonly used model for SDM is the three talk model of Elwyn et al. [ 11 ] describing SDM through three key steps: (1) team talk where HCPs place importance on the need to work together with patients to come to a decision, describe choices, offer support, and ask about goals, (2) option talk where HCPs inform patients about treatment options and discuss alternatives, and (3) decision talk where a decision is made based on patients informed preferences and clinical evidence. Additionally, other HCPs such as nurses and psychologists can contribute to the SDM process by offering decisional and emotional support to patients, thereby enhancing its interprofessional nature [ 12 ].

SDM can be facilitated by using patient decision aids (PtDAs). These are pamphlets or web-based tools that make the decision that needs to be made explicit, provide evidence-based information about treatment options, and help patients assess personal values. Research indicates that PtDAs enhance patients’ knowledge and understanding of risk perceptions, reduce decisional conflict, help patients clarify their personal values, and increase the congruence between treatment choices with patients’ values [ 13 ].

While SDM principles apply to many healthcare decisions, they are particularly important in preference-sensitive contexts such as multiple myeloma (MM) treatment decisions [ 14 ]. The treatment landscape of MM has expanded significantly over the past decades, with innovative therapies such as chimeric antigen receptor-T (CAR-T) cell therapy and bispecific T-cell engagers recently being on the market next to chemotherapy, immunotherapy, targeted therapy, radiation therapy, and autologous or allogeneic transplantation. Each of these therapies has their own effects on survival, efficacy, toxicity, long-term uncertainties, treatment regimens, and quality of life [ 15 – 18 ]. This underscores the importance of applying SDM to ensure that patients’ personal preferences and values are aligned with the characteristics of the chosen treatment.

Despite advancements in patient involvement and increasing recognition of the importance of SDM in MM care, there remains limited research on how MM patients and HCPs apply this process in clinical practice. While some qualitative and quantitative research has been conducted, existing studies have primarily focused on specific countries and/or patient populations within certain disease stages [ 19 – 21 ]. As a result, there is a need to explore the experiences of MM patients in different disease stages and HCPs across various countries to gain a broader perspective. Such cross-country studies can reveal how differences in healthcare systems and culture impact SDM implementation, offering insights that may be overlooked in single-country studies. These comparisons can help identify unique challenges in each setting while also highlighting common issues. The implementation of SDM is also co-determined through reciprocal relationships and other influencing factors such as organisational policies. While general barriers like patient and HCP characteristics, lack of training, and time constraints have been well-documented, specific barriers in the MM context remain underexplored [ 22 ]. Identifying these barriers is essential for devising solutions and recommendations that can be tailored to diverse healthcare settings, thereby enhancing the implementation of SDM across countries. Additionally, haematology nurses and other multidisciplinary team (MDT) members are having an evolving role in the MM care pathway, however, their role in SDM is not investigated nor understood [ 23 ]. Therefore, 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.

Methods

Interviews were conducted with MM patients, haematologists, and haematology nurses involved in the care pathway of MM patients across nine countries: Belgium, Germany, Ireland, Israel, Slovenia, Spain, Sweden, the Netherlands, and the United Kingdom. Interviews were held from October 2022 until April 2023. A steering committee (SC) comprising of MM patients ( n = 3), researchers ( n = 2), haematologists ( n = 3), and a carer was involved in all steps of the research including the development of the research questions, the design and methodology, the development of the interview guides, and the review of the study findings. The interviews’ methodology and findings are reported below according to the guidelines of Hollin et al. [ 24 ] and the consolidated criteria for reporting qualitative research (COREQ) checklist (Additional file 1 ) [ 25 ]. Ethical approval was obtained from the Ethical Committee Research UZ/KU Leuven in Belgium ( S66580 ).

Development of the study materials

Based on an exploratory literature review, an English interview guide containing open-ended questions was developed and tailored towards the respective stakeholder group. Further, an online preparatory questionnaire including the informed consent form was created to assess participants’ personal and demographic characteristics prior to the interviews. For patients, the questionnaire also featured disease-specific questions and items to assess their health status next to the three brief screening questions from Chew et al. [ 26 ] to evaluate patients’ health literacy. These questions were included to support purposive sampling by accounting for varying levels of health literacy, ensuring a balanced and diverse patient sample with different abilities to understand and process health information ( see “Participant recruitment” ). Haematologists and haematology nurses completed supplementary questions regarding their professional experience in treating MM patients.

The study materials were piloted with three native speaking English patients from the United Kingdom and Ireland to optimise the comprehensibility and assess potential information needs. Further, additional input was obtained from an academic expert in the theoretical and practical implementation of SDM. Based on the obtained feedback and discussions with the SC, a revised interview guide was created, and minor modifications were made in the online preparatory questionnaire, whereafter the interviews were piloted with three more patients. No further changes were deemed necessary. The final English study materials were translated by a professional translation company or native speaking researcher of this study into Dutch, German, Hebrew, Slovenian, and Spanish and subsequently revised for accuracy and understandability by a native patient advocate.

The final interview guide was structured into three parts, each corresponding to a specific objective of the study. The first part included open-ended questions aimed at exploring the perceived importance and practical implementation of SDM in MM decision-making. These questions were posed before and after introducing the three-talk model of Elwyn et al. [ 11 ]. Additionally, participants were asked to reflect qualitatively, based on their previous experiences, on the application of each of the 12 steps of the OPTION instrument, which assesses the extent to which clinicians actively involve patients in the decision-making process during their previous consultations [ 27 ]. The second part of the interview guide focused on examining the roles of other stakeholders in the SDM process alongside haematologists. Specific inquiries were made regarding their contributions, with follow-up questions as necessary to gain detailed insights into their specific roles. The third part of the interview guide included open-ended questions asking participants to reflect on barriers to SDM implementation at the adopter, decision, innovation, relational, and environmental level, following the Ottawa Model of Research Use [ 28 ]. Further, potential solutions or enhancing factors for SDM were asked using open-ended questions. Furthermore, participants’ knowledge about PtDAs was assessed before and after providing explanations and examples of PtDAs. Subsequent questions explored patients’ perspectives including possible advantages and disadvantages regarding PtDAs.

Participant recruitment

MM patients, haematologists, and haematology nurses, aged 18+, living in Belgium, Germany, Ireland, Israel, Slovenia, Spain, Sweden, the Netherlands, and the United Kingdom were eligible to participate in the study. Participants were recruited via the existing networks of collaborating clinicians and the European umbrella patient organisation Myeloma Patients Europe (MPE) and its member organisations, which initiated contact with potential participants via email or telephone. Individuals who expressed interest were subsequently contacted by the research team, who provided comprehensive information about the study, answered any questions, and arranged a convenient time for participation. Contact details were only shared with the research team once participants had expressed interest in joining the study, ensuring confidentiality and transparency throughout the process. Purposive sampling was used to recruit participants with differing characteristics, backgrounds, treatment experiences, and living in countries with different kinds of healthcare systems and cultures, as these characteristics could have an influence on experiences regarding SDM.

Conduct of the study

Prior to the initiation of the interviews, participants were asked to complete the online preparatory questionnaire, which all participants submitted prior to their interview. The interviews followed a semi-structured format, where a predetermined guide with questions ( see “development of the study materials”) was used. However, based on the topics that emerged, open discussions could arise to explore opinions in-depth.

All interviews with HCPs were performed in English or Dutch by E.S., C.V., or J.B, while interviews with patients were conducted in their native language by a patient organisation representative or a researcher of this study. Each interview lasted around one hour and was organised online or in-person. All interviews were recorded and transcribed verbatim in the original language and translated to English.

Analysis

Data from the online preparatory questionnaire was reported using descriptive statistics. The interviews were analysed in NVivo using the framework analysis method [ 29 ]. Analysis started with the familiarisation of the interviews through reading the transcripts. Deductive codes were created based on the themes of the interview guide. Next, three researchers (E.S., C.V., and J.B.) independently coded the first four transcripts, creating additional deductive codes based on the observed themes next to the inductive codes, and separately created a ‘coding tree’ (Additional file 2 ). The results were extensively discussed and compared to verify whether the themes were interpreted in the same manner and whether the tree was built in the same way. After consensus was reached, the coding tree was uploaded in NVivo and applied to all transcripts, where literal quotations in the transcript were attached to each of the themes (coding). A framework matrix was created, wherein each theme was summarised per code for each interview. This made the interpretation and analysis of the results between stakeholders and countries possible. The analysis was performed by multiple researchers of the study team (E.S., C.V., and J.B.).

Results

Participants’ characteristics

A total of 59 interviews were conducted with MM patients ( n = 39), haematologists ( n = 15), and haematology nurses ( n = 5). General characteristics of participants are depicted in Table 1 , while characteristics specific to each stakeholder group can be found in Additional file 3 .

Most patients received MM care at a university hospital and were undergoing treatment at the time of the interviews. Of the 39 patients, 23 were in remission, while some expressed uncertainty about their remission status or indicated that they were not in remission. Nearly all patients had undergone a stem cell transplant and only a few were not affiliated with a patient organisation. The majority of patients demonstrated adequate health literacy, though a small number exhibited marginal health literacy. On average, patients had been under the care of their haematologist for 4 years and 6 months (min = 6 months, max = 11 years).

The haematologists in the study were from five countries, with 2 to 5 participants from each country. Most haematology nurses were based in Belgium. Haematology nurses reported an average of 14.8 years of experience treating MM patients (min = 5 years, max = 26 years), whereas haematologists possessed on average 16.0 years of experience (min = 5 years, max = 33 years). Haematologists spent on average 25.3 min per consultation, while haematology nurses reported spending on average 21.0 min per contact moment. A significant portion of haematologists and haematology nurses were actively involved in academic research.

Table 1 Interviewees ( n = 59) self-reported characteristics Interviewees ( n = 59) Patients ( n = 39) Haematologists ( n = 15) Haematology nurses ( n = 5) N % N % N % Age , years < 35 0 0 2 13.4 0 0 35–50 10 25.6 8 53.3 5 100 51–65 16 41.0 5 33.3 0 0 66–80 13 33.4 0 0 0 0 Gender Male 18 46.2 8 53.3 1 20.0 Female 21 53.8 7 46.7 4 80.0 Country Belgium 9 23.1 2 13.3 3 60.0 Germany 3 7.7 3 20.0 1 20.0 Ireland 7 17.9 0 0 0 0 Israel 6 15.4 5 33.4 1 20.0 Slovenia 5 12.8 3 20.0 0 0 Spain 2 5.1 0 0 0 0 Sweden 1 2.6 2 13.3 0 0 The Netherlands 2 5.1 0 0 0 0 The United Kingdom 4 10.3 0 0 0 0 Hospital University hospital 25 64.1 9 60.0 3 60.0 Non university hospital 13 33.3 6 40.0 2 40.0 Not sure 1 2.6 0 0 0 0

Implementation of SDM in MM clinical practice

Decision points where SDM is deemed crucial

Participants held mixed viewpoints on the ideal role of patients in decision-making regarding treatment and care in MM, with patients having different preferences regarding their preferred level of involvement. While some MM patients wanted to be involved in the decision-making process and even make the final decision, other patients fully trusted the haematologist and did not want or were not able to be involved. However, all participants unanimously agreed that patients are (to a certain extent) or should be given the opportunity to be involved at specific decision points in the MM treatment pathway (Box 1 ). Only regarding patient involvement in first vs. later line treatments, no consensus was found. Some participants contended how patient involvement right after diagnosis can be harder since patients may be emotionally overwhelmed and do not have the needed know-how and information. Therefore, some participants argued that the value and relevance of patient involvement may increase in later treatment lines because of increasing knowledge and confidence of the patient: “At the beginning , the patient does not have enough information to have a discussion with the haematologist. Therefore , at this stage , the patient should accept the treatment that is offered. However , in later disease stages , patients can become informed and can share their preferences and concerns with the haematologists as such that decisions can be made jointly.” #ISR_Patient_3 . On the contrary, some participants emphasised the significance of early involvement to ensure patients comprehend the treatment plan and remain engaged from the outset.

Box 1 Decisions raised across stakeholders for which SDM is particularly important Decisions concerning… 1. Multiple treatment options 2. (New) therapies with potential severe side-effects and limited (clinical) data 3. Therapy changes (e.g., maintenance treatment, important dose increases or reductions) because of disease progress, remission, or relapse 4. Decision to stop a treatment including end of life and palliative care decisions 5. Stem cell transplantations 6. Participation in a clinical trial

Experiences with the application of SDM

General perception about the application of SDM after explaining the three-talk model of Elwyn et al. [ 11 ]

Patients reported varying experiences with the application of SDM in past treatment decisions. While some felt that the process was already well-established and they were provided with explanations about treatments, the majority mentioned that SDM was not consistently applied during their previous consultations, and they explicitly had to seek for active involvement or specific information. Most of these patients indicated they received information on the recommended treatment from the haematologist who asked the patient’s consent to proceed with the treatment, without being made aware of alternative options or being asked about their personal preferences. Notably, the degree of patient involvement varied based on several factors such as: (i) the decision point, with less involvement at diagnosis compared to later stages of treatment, (ii) the healthcare system and treatment approach in each country— in the United Kingdom, treatment plans were more fixed with fewer options for patient choice, limiting the scope for SDM, whereas the healthcare system in Belgium offered more treatment alternatives, facilitating SDM, (iii) participants’ age, with older patients generally experiencing less SDM, and (iv) the perceived attitude of the treating haematologist, influencing whether they were inclined to involve patients in the decision-making process.

On the contrary, most haematologists believed they routinely attempted SDM. However, haematology nurses held a different perspective. They acknowledged that haematologists attempted SDM to some extent but emphasised that it was not done consistently. For instance, haematology nurses indicated that treatment decisions were often predetermined during multidisciplinary oncology consultations or other staff meetings. The recommended treatment option was later communicated to the patient, leaving limited opportunity to explore and incorporate patients’ preferences in the decision-making process.

Application of the 12 steps of the OPTION instrument [ 27 ]

Upon more in-depth conversations about the application of SDM using each of the 12 steps of the OPTION instrument [ 27 ], it became evident that while some steps were consistently attempted according to haematologists (step 1,2,5,8,9,11,12 – green), patients unanimously agreed that step 3 “ The clinician assesses the patient’s preferred approach to receiving information to assist decision making” , was never applied during their previous consultations (red) (Table 2 ). Patients and haematologists also reported varying experiences (yellow) with respect to the implementation of other steps.

Table 2 Experiences of patients vs. haematologists on the application of SDM using the steps described in the OPTION instrument [ 27 ]

Role of other stakeholders next to haematologists in the SDM process

The role of the haematology nurse

The role of haematology nurses in the SDM process emerged prominently during the interviews. Participants frequently described how haematology nurses inquired about the type of information patients wanted to have to support the decision-making process. They provided printed materials, links to social media, or online information upon request. As haematology nurses follow the patient continuously from diagnosis throughout the disease trajectory, participants highlighted that they develop close connections with patients, lowering the barrier for patients to approach them with questions during hospital visits while also offering ongoing support for inquiries that may arise at home: “The clinical nurse specialist is the person who is checking in with me , kind of regularly to see how I’m doing. So they’re the person talking to me , and they’re the person seeing who I am. They’re the person wondering if I do have any questions.” #IRE_patient _ 5 .

Both patients and HCPs stressed the role of haematology nurses in ensuring that patients understood the information provided during the consultation. Participants noted that, due to time constraints during appointments, patients often turn to haematology nurses for more detailed discussions and clarifications. Consequently, haematology nurses were seen as central in reiterating the information shared by haematologists about the advantages and disadvantages of treatment options, as well as the practical implications of various choices, in easily understandable terms. Participants also described how, when desired, they provided patients with more detailed information.

Moreover, participants observed that certain patients find it more comfortable to discuss their expectations and fears with haematology nurses rather than with haematologists. Haematology nurses themselves confirmed their key role in probing about patient’s expectations, addressing fears, and providing guidance on managing concerns – sometimes even before the consultation with the haematologist. These preparatory interactions were seen as instrumental in setting the stage for the subsequent consultation with the haematologist, helping to prioritize key points and fostering more focused discussions. Consequently, haematology nurses provided valuable feedback to haematologists, enhancing the overall care experience and supporting a holistic approach to patient management.

The role of the multidisciplinary team

Participants underscored that also other MDT members such as general practitioners, psychologists, and social workers play a supportive role in the SDM process by offering specialised information and assistance within their areas of expertise. For instance, psychologists were described by participants as instrumental in addressing fears and concerns that patients might hesitate to express with their haematologists, providing vital emotional and psychological support: “Psychologists hear very different things and concerns than we do. Patients often don’t share these concerns with us directly. Instead , I hear about them from psychologists in primary care.” #BE_Haematologist_2 . The role of general practitioners in SDM was also emphasised, noting that they often know the patient better and are more aware of personal situations. A patient shared that their family doctor had been the first to provide information about MM and continued to be a key figure for questions and guidance. Participants also mentioned that general practitioners can help bridge language barriers and cultural gaps, facilitating clearer communication and understanding between patients and haematologists. However, participants stressed the importance of effective communication and cooperation among MDT members. They observed that seamless information transfer within the team was essential to avoid patients needing to repeatedly explain their problems to different healthcare professionals. Participants viewed this cohesive exchange of information as crucial for the SDM process, ensuring that patient preferences and values are consistently communicated and integrated into care decisions.

The role of family members

Both HCPs and patients noted the role played by family members in the decision-making process. Some perceived their role primarily as supportive, aiding in understanding disease-related information and providing emotional support. Others recognised a larger role, noting that family members often function as caregivers: “I really think that family members are very important because they are the caregivers. If they decide to give treatment every week in the hospital , they are the one who will have to bring the patient.” #ISR_Haematologist_2 . Consequently, certain haematologists acknowledged the importance of including family members in the decision-making process alongside patients, given their integral role in patient care. However, participants also noted that preferences regarding family involvement varied. They indicated that some carers may prefer a more active role in decision-making, while others may prefer a more supportive role, respecting patient autonomy.

Some participants also cautioned that the presence of family members might hinder SDM, as this could lead to patients withholding information or communicating less honestly due to conflicting opinions. Furthermore, it was highlighted that family members might sometimes dominate the conversation and prioritise their own perspectives over the preferences of the patient.

The role of patient organisations

The unanimous sentiment among patients was that patient organisations played an important role in facilitating the decision-making process in various ways. First, engaging with fellow patients via connections forged through these organisations offered an opportunity to share experiences between peers facing similar challenges. However, some patients preferred not to participate in support groups due to concerns about the potential emotional impact of hearing others’ stories. Second, patients highlighted the psychological support available within these organisations, emphasising the multifaceted assistance they offer: “Associations help a lot with psychological issues by providing psychological help. They call me , organize online meetings , help me exchange experiences , …” #SP_Patient_1 . Third, patients valued the disease-specific information and practical advice for daily living provided by patient organisations. The delivery of information through written materials or symposia in lay language empowered patients to become well-informed advocates for their health. Haematologists also affirmed the importance and reliability of these information sources, supporting patients in their quest to educate themselves through these channels. Lastly, some patients utilised the hotlines provided by patient organisations, enabling them to ask probing questions outside of the hospital setting.

Barriers and potential solutions to SDM implementation in MM care

Barriers hindering the application of SDM in MM clinical practice

During open discussions, participants identified context-specific barriers (Table 3 ) to SDM implementation in the MM setting for each of the levels described in the Ottawa Model of Research Use: adopter, decision, innovation, relational, and environmental level [ 28 ].

Table 3 Barriers for SDM identified by participants and categorised into five levels according to the Ottawa Model of Research Use [ 28 ] Barrier Explanation Adopter level (= barriers related to the personal characteristics of patients and HCPs) Characteristics of patients Not understanding everything properly because of the complexity of MM (due to e.g., old age, mental/physical capacity), being too emotional/overwhelmed because of the impact of the MM diagnosis or the impact thereof on their life, or not being aware that it is an option to be involved. Characteristics of HCPs HCPs may be afraid to overload patients with information or may not have the needed communication abilities. The volume of information required can be daunting and difficult for patients to absorb, which may lead some HCPs to avoid sharing it. Additionally, HCPs may also not be willing to engage patients in the decision-making process and share information. Decision level (= barriers related to the decision that needs to be made) Quick decisions Because of the speed and the pressure under which some decisions have to be made for MM e.g., in an emergency setting, it can be hard to find the time to delve deeper into all information with the patient and to give them time to think. This often leaves patients uninformed and haematologists with limited opportunity to explore patient preferences. Treatment decisions at moment of diagnosis MM patients, grappling with distressing news and lacking prior knowledge about their condition, find it challenging to absorb the information presented to them at the time of diagnosis. This together with the emotional weight of the diagnosis of MM, coupled with the urgency to decide on a treatment plan, creates a difficult environment for SDM application. Too many available treatment options The abundance of information about each of the options can overwhelm patients and be too much to grasp, making it challenging for them to actively participate in decision-making. As a result, patients may have the tendency to defer decisions to the medical team, trusting on their expertise. Innovation level (= barriers related to the lack of patient-focussed information and knowledge about shared decision making) Limited patient-focussed information for MM patients The information available on MM is often too complex, overly detailed and/or not accessible in the native language of patients. This lack of accessible and comprehensible resources can make it challenging—or even impossible—for MM patients to fully understand critical information about their disease and treatment options. Reliability of the available information MM patients often face challenges in identifying and accessing reliable sources of information. Many MM patients are unaware of where to find trustworthy resources, leading them to consult unreliable information online or struggle to locate the information they need. Relational level (= barriers related to the relations between patients , their family , caregivers , and HCPs) Poor collaboration of multidisciplinary team In MM, there is a multidisciplinary approach with a team consisting of various HCPs. Therefore, lack of effective communication and cooperation within the team was deemed detrimental for SDM, with bad communication hindering the process. Absence of haematology nurses In the absence of haematology nurses, the healthcare system is too much centred on the haematologist. Haematology nurses play an important role in providing the patient with detailed information, answering remaining questions and offering (emotional) support that may not always be provided by the haematologist. As such, they complement haematologists in the SDM process. Environmental level (= barriers related to environmental factors outside of the shared decision making process that can have an influence on it) Time constraints The application of SDM can take time which is not always available. Implementation of SDM could result in haematologists seeing less patients per day and thus longer waiting times, treatment delays, referral to other centres, and quick decisions. Patients also feel time pressure during consultations and often have the feeling that not all of their questions can be answered. The standard fifteen-minute consultation time is inadequate for patients seeking active involvement and extensive questioning. Organisational limitations Lack of infrastructure and separate rooms for team discussions and patient counselling. Lack of guidelines for treatment protocols In certain countries, approved treatment protocols mandate that haematologists adhere to specific guidelines due to reimbursement constraints. This may restrict the availability or reimbursement of certain treatments, thereby complicating discussions about treatment options with patients. HCPs; healthcare professionals, MM; multiple myeloma, SDM; shared decision making

PtDAs as a potential solution to enhance the implementation of SDM in MM clinical practice

Opinions about PtDAs

After explaining the concept of PtDAs and presenting an example from another disease area, opinions regarding the potential use varied among participants. While most HCPs expressed a willingness to explore the implementation in their practice, some displayed hesitancy and were sceptical. These HCPs expressed a preference for personally posing questions integrated into the PtDA, fearing that PtDAs might replace the consultation: “My problem is , if I can ask the question for myself , I can go more into depth and ask follow-up questions. Maybe it’s more individual if we can do this personally.” #DE_Haematologist _ 1 . In contrast, other HCPs, along with all patients, demonstrated a more open and positive attitude towards PtDAs, envisioning numerous opportunities under specific conditions (Table 4 ). Participants pointed out the importance of these specific conditions, which are fundamental to the definition and effective use of PtDAs.

Table 4 Possible benefits, drawbacks, and preconditions to the use of PtDAs in MM raised by participants Statements Mentioned by P H HN Possible benefits of PtDAs in MM Can make the decision more objective, focussed, and less biased towards the predetermined choice of the haematologist. ✓ Can prepare patients for the consultation; patients will get insights into the topic of the consultation and will get educated about their disease and treatment options. ✓ ✓ Can help healthcare professionals to discuss the benefits, side- effects, risks, and uncertainties of the different treatments with the patient and enables patients to easily compare the options. ✓ Can save time, as the patient can go through it before the consultation, getting aware what is important to them and enabling healthcare professionals to get insights about patients' preferences, fears, and concerns. This ultimately prepares all parties for the decision making process. ✓ ✓ ✓ Can empower patients. ✓ ✓ Can ensure patient involvement and the correct application of shared decision making. ✓ ✓ Possible drawbacks of PtDAs in MM Can compromise the individual approach with patients, making conversations more rigid and less open. ✓ Can be seen as an additional task for patients and haematologists to complete. ✓ ✓ Preconditions on the use of PtDAs in MM Must be developed in collaboration with patients, nurses, and haematologists. ✓ Must contain data that is objectively and neutrally presented, with references to support the information. ✓ ✓ ✓ Must be updated every X months as the therapeutic landscape of multiple myeloma is rapidly evolving and the PtDA needs to be up to date. ✓ ✓ Must be easy to use and structured with patient-tailored language as such that people with low health literacy can complete it. ✓ ✓ H; heamatologists, HN; heamatology nurses, P; Patients, PtDAs; patient decision aids, MM; multiple myeloma

Layout, format, and content requirements for a PtDA in MM

Participants discussed the requirements for the layout, format, and content of a PtDA. In terms of layout, a consensus emerged that a PtDA should incorporate visual elements such as graphics to make it schematic and attractive. Further, participants emphasised the need for a well-structured design with minimal text. Opinions on format types were divided; some participants expressed no particular preference, while others leaned towards digital formats, paper-based materials, or a combination of both. Preferences were often linked to when participants envisioned patients engaging with the PtDA; some suggested at home for self-paced exploration, while others recommended joint sessions with a haematology nurse or during the consultation with the haematologist.

The decision point which could be included in the PtDA received some discussion and thoughts. Haematologists noted the challenge of developing a PtDA for MM, given the rarity of situations where two or more nearly equal treatments are available. The consensus among participants was that the utility of such tool would increase with highly impactful decisions, which are depicted in Box 2 . Additionally, stakeholders highlighted the relevance of a PtDA to inform practical, albeit minor, decisions such as the choice to undergo therapy as an outpatient.

Box 2 Decision points raised across participants for inclusion in a PtDA for MM Whether or not … 1. To lower the treatment dose 2. To undergo chemotherapy 3. To stop (maintenance) treatment and have palliative care 4. To undergo stem cell transplantation 5. To undergo CAR-T cell therapy 6. To participate in a clinical trial

Regarding content, participants underscored the importance of incorporating evidence-based, lay-language information in the patient’s native language, with a comprehensive focus on all aspects of MM that could impact patients’ quality of life. There was a consensus that the PtDA should begin with general information about MM, followed by details on the treatment options and their effects, including overall survival benefit and prognosis. Details on treatment options should encompass the potential advantages, disadvantages, risks, and uncertainties on both the short and long term as well as the potential outcomes of not undergoing a treatment. Participants also emphasised the importance of including practical information such as treatment modalities (e.g., in-hospital or at home) and treatment regimens (e.g., route and frequency of administration). Additionally, information on the initiation, progress, and results of clinical trials was deemed valuable for inclusion.

Discussion

This qualitative study conducted across nine countries in Europe and Israel with MM patients, haematologists, and haematology nurses shed light into the implementation of SDM in MM care. Our findings underscore the significance of SDM in decisions concerning clinical trials and the cessation of treatments, while revealing limited discussions regarding end-of-life and palliative care decisions. Patients frequently reported that their preferences, concerns, and desired levels of involvement were inadequately addressed during clinical encounters. Additionally, the study highlights diverse patient preferences regarding treatment decision-making, ranging from some patients desiring ultimate decision-making authority to others preferring to place full trust in their haematologist’s decisions without active involvement.

Haematology nurses, the multidisciplinary team, family members, and patient organisations were identified as pivotal contributors in the SDM process, each fulfilling distinct and complementary roles. Our study further identified significant barriers at the adopter level (e.g., haematologists’ hesitancy to engage patients), decision level (e.g., emotional factors influencing patient decisions), innovation level (e.g., inadequate patient-centred information), relational level (e.g., limited access to haematology nurses), and environmental level (e.g., time constraints) which pose challenges to effective SDM implementation in MM care.

Involving MM patients in SDM requires an individualised approach

MM patients’ preferred level of involvement in discussing and selecting treatments was found to be highly individualised. While some patients did not wish to make the final treatment decision themselves, the majority was still motivated to receive information, engage in discussions about treatment options, and wanted to be asked about their opinions, as also identified in prior research [ 30 – 32 ]. However, research has revealed that HCPs tend to underestimate patients’ preferences for involvement and rely heavily on their expertise and knowledge of treatment options and their implications to make treatment decisions [ 33 , 34 ]. Therefore, it is imperative for HCPs to approach the treatment decision in an individualised manner. They should provide comprehensive information about available treatment options and their consequences, engage patients in discussions, and assess each patient’s desired role in the decision-making process [ 35 ]. If after these steps, a patient chooses to delegate the final decision to the haematologist without wanting to be involved, the decision-making process remains a shared endeavour.

Divergent experiences regarding the application of SDM exist

Various factors, including the decision point, the country where patients receive treatment, and the mindset of the treating haematologist and the patient, seemed to influence patient involvement in decision making. This variability may stem from cultural differences, limited treatment options and reimbursement schemes in certain countries, and a lack of awareness about SDM, as noted in previous research by Steenbergen et al. [ 36 ] and Aguado Correa et al. [ 37 ]. However, a subsequent quantitative study is needed to establish the association between these factors and the implementation of SDM.

Our findings also highlight divergent experiences in the practical application of SDM among patients and HCPs, consistent with findings from other oncology studies, with overall patients reporting poorer SDM experiences compared to haematologists [ 36 , 38 , 39 ]. Some patients reported to receive information on the recommended treatment from the haematologist who asked the patient’s consent to proceed with the treatment, without being made aware of alternative options. These findings are in line with results from Karnieli-Miller et al. [ 40 ] and Engelhardt et al. [ 41 ], stating that physicians often employ implicit persuasive strategies to align patient decisions with their recommendation rather than making decisions unilateral. Moreover, patients argued that haematologists hardly elucidate patients’ preferences, fears, concerns, or address remaining questions about treatment alternatives. Notably, discussions about the no-treatment option and palliative care were often neglected, despite patient preferences for an open dialogue on these topics when such decisions become relevant. These findings align with previous studies in oncology, which highlight a tendency to focus predominantly on treatment options while often overlooking the possibility of no treatment [ 42 – 46 ]. For instance, Kuijpers et al. [ 42 ] found that only 28% of patients reported that the option of no (further) treatment was addressed, despite 84.5% of patients rating the importance of this discussion highly. It would therefore be recommended that future clinical practice guidelines explicitly integrate these elements to enhance patient-centred care and support meaningful SDM.

Enhancing the role of the haematology nurses to foster SDM in MM care

One of the primary barriers highlighted by participants in consistently applying all steps of SDM was related to time constraints, a barrier also identified in previous studies [ 22 ]. To overcome the time constraint challenge and improve SDM implementation in MM care, it is essential to enhance the role of haematology nurses and MDT members, as they complement haematologists in the SDM process. Both patients and HCPs recognized the critical role of haematology nurses in probing about patient expectations, addressing fears, and providing guidance on managing concerns, a step in the SDM process that haematologists did not consistently attempt. However, MM patients highlighted a need to talk about these aspects, as some struggled with psychosocial issues. While haematologists and nurses can address patients’ fears and concerns, they should refer patients to other HCPs, such as psychologists or social workers, for specialised social and emotional support. Further, haematology nurses emerged as central points of contact for patients, offering clarifications and additional information on treatment options. Our findings align with previous research, indicating that haematology nurses serve as decision coaches, patient advocates, and liaisons, crucial for maintaining continuity of care for MM patients [ 47 , 48 ]. However, in line with our results, a survey from Liptrott et al. [ 49 ] revealed variations in haematology nurses’ roles depending on the hospital and the country, with one third of the nurses feeling they should be involved in decision making while this was not being part of their practice. Thus, increasing awareness of haematology nurses’ potential, along with enhanced educational resources and support, is essential to maximise their contribution to SDM in MM care. Currently, most haematology nurses are not present during decision-making discussions, limiting their impact to post-decision support. To fully optimize their potential, it is crucial for them to actively participate in these discussions, ensuring comprehensive patient-centred care throughout the decision-making journey.

Creating PtDAs to support patient involvement in decision-making

Next to our results, research reveals that patients’ knowledge gaps about their condition and treatment, compounded by communication barriers with HCPs, significantly hinder effective SDM [ 22 ]. To address the knowledge gap, our study reveals that research should prioritise the development of evidence-based educational materials in lay-language, in collaboration with patient organisations, to support the decision-making process. While some decision aids exist, they predominantly target HCPs and often do not integrate patient preferences and values, thereby falling short of meeting the criteria for PtDAs outlined by the international patient decision aid standards (IPDAS) [ 50 – 53 ]. Therefore, it is essential to adapt existing tools or develop new ones that align with these standards, focussing specifically on treatment decisions of significant impact on patients, such as adjusting treatment doses, deciding on chemotherapy, transitioning to palliative care, considering stem cell transplantation, opting for CAR-T cell therapy, or participating in clinical trials. These tools should allow patients to articulate their concerns, questions, treatment preferences and should explicitly include the no-treatment option; key elements of SDM highlighted during the interviews that were lacking in practice.

Additionally, decision aids may influence the overall time dynamics of the decision-making process by improving the efficiency of discussions and providing patients with information before consultations, allowing them to come prepared with informed questions. While evidence from a Cochrane review of Stacey et al. [ 13 ] indicates that PtDAs do not significantly reduce the length of initial consultations, their broader impact on the decision-making process should also be considered. By fostering better-informed patients and promoting more structured decision-making, PtDAs can reduce the need for repeat consultations and requests for second opinions [ 14 ]. To maximize their impact, PtDAs must remain free from commercial biases, understandable for patients with limited health literacy, easily and publicly accessable, and available in both digital and print formats, as these factors have shown to influence their adoption in clinical practice [ 54 ].

However, PtDAs alone may not address all the challenges identified in our study, such as patients’ emotional responses at the time of diagnosis, lack of awareness of their role in SDM, and perception of insufficient time during the decision-making process, which affect their readiness to engage in decision-making [ 55 ]. These findings highlight the need for multi-level support that combines decision aids with additional interventions to better equip patients for active participation. Integrating PtDAs into a broader patient-centered framework can significantly improve SDM implementation, enhancing both patient knowledge and engagement in healthcare decisions [ 22 ].

Recommendations for increased implementation of SDM in MM

Based on the study results, key areas for improvement were identified, resulting in six key recommendations for optimising SDM in MM care (Box 3 ).

Box 3 Recommendations for an optimal implementation of SDM in MM care. HCPs; healthcare professionals, MM; multiple myeloma, PtDAs; patient decision aids, SDM; shared decision making 1. Personalised approach of patient involvement . Haematologists and haematology nurses should assess MM patients’ desired level of (active) involvement. This assessment should be repeated throughout the patients’ disease trajectory as this might change over time and is especially important when taking critical treatment decisions. 2. Open dialogue about no treatment . Haematologists and haematology nurses should engage MM patients in open discussions about the option of not undergoing treatment and having palliative care as an alternative option when these decisions become relevant. During these conversations, patients should be fully informed about both options, such as the respective (dis)advantages and practicalities. 3. Psychosocial support . Haematologists and haematology nurses should go further than merely placing emphasis on the information-sharing component during the decision-making process. They should pay attention to, and explicitly ask about, MM patients’ feelings, fears, and concerns. If necessary, HCPs should refer patients to psychologists, social workers, or other persons that understand the disease and can provide emotional or social support. 4. Creating awareness . Awareness around SDM should be created and enhanced for all stakeholders involved. For HCPs this can for example be done by increasing the presentation of SDM research at haematology conferences. Concerning patients, patient organisations should support MM patients to become active participants in the decision-making process. Therefore, they should educate MM patients about the concept of SDM, the different steps it entails, and its evidence-based practices. 5. Educational resources . Educational materials should be provided in lay language for MM patients outlining information on different treatment options and related characteristics alongside the development of PtDAs. These materials should be made in partnership with patients as this ensures understandability. 6. Enhanced role of haematology nurses . The involvement of haematology nurses in the SDM process should be increased by providing additional resources and training to maximise their impact. Moreover, potential roles of other members of the MDT (e.g., psychologists, general practitioner, cardiologist, nephrologist, geriatricians) should be considered.

Strengths and limitations

This interview study presents a comprehensive exploration of SDM implementation within MM care, offering in-depth insights of patients, haematologists, and haematology nurses. By including 59 participants from nine different countries with diverse healthcare systems and cultures, alongside MM patients with varying treatment experiences, we ensured that participant heterogeneity was introduced to mitigate biases towards specific characteristics and experiences. The plausibility, quality, and comprehensiveness of both the material and the study, as the interpretation of the results, was ensured by collaborating with a steering committee including patients and patient organisation representatives along all the different steps of the study. Further, the analysis was performed by multiple researchers, enabling cross-verification of the results, aiming to minimise subjective interpretations and potential individual biases towards the data.

The study, however, is not without limitations. The voluntary nature of participation may have resulted in HCPs and patients who were interested in SDM and were already familiar with the concept, and therefore might have been more likely to participate. Consequently, HCPs and patients with limited SDM knowledge, yet possessing valuable insights, might have been underrepresented. Moreover, there is a possibility that more vulnerable MM patients with extensive treatment histories, who could offer valuable perspectives, were less included in our study. Lastly, while our study involved a considerable number of interviews ( n = 59), the generalisability of findings beyond the interviewed population remains uncertain. Therefore, future quantitative research is essential to yield more broadly applicable results and further enhance our understanding of SDM in MM care.

Conclusion

While this study reveals that SDM is partially applied in MM care, there exists room for improvement. HCPs should adopt a more explicit approach in soliciting patients’ preferences, fears, and concerns, and openly discuss treatment alternatives, including the no-treatment option. It is crucial that haematologists recognise that patients’ desired level of involvement in decision-making may differ and should be explicitly addressed. Strengthening SDM implementation necessitates further acknowledgment and enhancement of the pivotal role of haematology nurses and other members of the multidisciplinary team. Additionally, patient organisations can play a significant role in raising awareness about SDM and empowering patients to actively participate in the decision-making process. The recommendations derived from this study along with the insights for PtDA development, serve as an initial stride towards increasing SDM implementation in MM care, ultimately leading to improved patient outcomes and elevated quality of care.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary Material 1

Supplementary Material 2

Supplementary Material 3

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Acknowledgements

The authors sincerely thank the individuals who participated in the interviews for their participation and for sharing their experiences and valuable contributions. Special gratitude is extended to Myloma Patients Europe for their essential role in organising the study, recruiting participants through their networks and member organisations, and facilitating the translation process of the study materials. In addition, we would specifically like to thank the national patient organisations involved in participant recruitment and study material review. Lastly, we would like to acknowledge the members of the steering committee for sharing their valuable insights, expertise, time, and dedication to shaping the design and organisation of the study.

Author contributions

Elise Schoefs: Conceptualisation, Methodology, Investigation, Formal analysis, Writing - Original Draft, Writing - Review & Editing, Funding acquisition. Charlotte Verbeke: Conceptualisation, Methodology, Investigation, Formal analysis, Writing - Review & Editing. Jolien Broekmans: Conceptualisation, Methodology, Software, Investigation, Formal analysis, Writing - Original Draft, Writing - Review & Editing. Silène ten Seldam: Methodology, Resources, Writing - Review & Editing, Supervision, Project administration, Funding acquisition. Kate Morgan: Methodology, Resources, Writing - Review & Editing, Funding acquisition. Katie Joyner: Methodology, Resources, Writing - Review & Editing, Funding acquisition. Ariel Aviv: Methodology, Resources, Writing - Review & Editing. Varda Shoham: Methodology, Resources, Writing - Review & Editing. Anneleen Vanhellemont: Resources, Writing - Review & Editing. Michel Delforge: Resources, Writing - Review & Editing. Chantal Van Audenhove: Methodology, Writing - Review & Editing. Rosanne Janssens: Conceptualisation, Methodology, Writing - Review & Editing, Supervision, Funding acquisition. Isabelle Huys: Conceptualisation, Methodology, Writing - Review & Editing, Supervision, Funding acquisition.

Funding

Elise Schoefs is supported by an SB PhD fellowship from the Research Foundation Flanders, Belgium [1SE9425N]. Financial support for this study was provided by Myeloma Patients Europe, who received funding for this project from Takeda. The funding bodies played no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript.

Data availability

The datasets presented in this article are not publicly available because they contain information that could compromise participants’ privacy and consent. Requests to access the datasets should be directed to [elise.schoefs@kuleuven.be] (mailto: elise.schoefs@kuleuven.be).

Declarations

Ethics approval and consent to participate

This study was reviewed and approved by the Ethical Committee Research UZ/KU Leuven [Belgium; reference S66580 ]. All participants provided their informed consent to participate in this study prior to the conduct of the interviews.

Consent for publication

Not applicable.

Competing interests

Rosanne Janssens is currently employed by Evidera, London, UK. Rosanne Janssens was not working at the respective organisation during the research period, and this organisation played no role in the conduct of the study, nor did it contribute to this manuscript.

Abbreviations

Chimeric antigen receptor-T

Consolidated criteria for reporting qualitative research

Healthcare professional

Multidisciplinary team

Multiple myeloma

Myeloma Patients Europe

Patient decision aid

Steering committee

Shared decision making

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