Myeloma patients’ attitudes and perceived burden of treatment administration routes and locations: insights from a pan-European survey

Introduction: Understanding patients’ experiences of treatment and their attitudes towards different options is critical to enabling patient-centered care. There are increasing numbers of myeloma treatments and patient survival has extended. Patients potentially now undergo multiple treatments over the course of their myeloma. Treatment specific factors, such as frequency, location, and mode of administration, along with the burden they place on the patient, may influence treatment decision-making and patients’ quality of life. The aim of this study is to generate evidence on how myeloma patients feel about how, where, and by whom myeloma treatments are administered, and the burden they experience when receiving different treatment types.

Methods: An online survey was developed and translated into seven languages then disseminated through Myeloma Patients Europe’s network of myeloma patient organizations. Eligible participants included people diagnosed with Myeloma, aged over 18 with experience of at least one treatment or were currently receiving their first treatment.

Results: The survey was completed by 901 patients from 22 countries. Attitudes were most positive for oral treatments at home, yet ‘home-based’ treatment was not universally the most positively rated location. For subcutaneous treatments, out-patient delivery was more positively rated than home-based delivery. Motivation to try new treatments routes was lowest for subcutaneous at home delivered by a relative/friend, and overall highest for oral at home and for delivery through a transdermal patch. Treatment burden was rated highest for intravenous treatments and lowest for oral treatment. The most burdensome domain across all treatment types was the impact on daily activity. Work status was a significant predictor of perceived burden on oral treatment, and age was a significant predictor for oral, subcutaneous and infusion treatment burden.

Conclusions: Results suggest that patients may feel uncertain about home-based treatments and patients will need education and support to ensure they feel confident and comfortable. Health care teams need to have transparent conversations with myeloma patients about treatments that include mode, location, and patients’ views, needs and priorities. Patients empowered with knowledge about their potential treatment experience can engage more meaningfully in shared-decision making about their health care.

1 Introduction

Multiple myeloma (hereafter referred to as Myeloma) is a rare and incurable cancer of plasma cells, found in the bone marrow (1). The median age at diagnosis for myeloma patients is around 70 years, with 37% of patients under 65, 26% between 65–74 years, and 37% are 75 or older (1). Myeloma is a relapsing-remitting cancer, meaning patients usually enter a period of remission in response to initial treatment but are then likely to relapse. During remission phases, patients may continue to take treatment to keep their myeloma at bay, receive a single drug maintenance treatment, and/or undergo regular observation. Relapses can occur several times during the course of myeloma and trigger treatment to start or to change. Over time, myeloma can become more aggressive and drug resistant, with shorter intervals between relapse. There is currently no cure for myeloma but advances in the understanding of the mechanisms of action of the disease have resulted in new treatment options (2). Recent years have seen improvements in patients’ survival due to the introduction of these new treatment options and routine use of high-dose therapy and autologous stem cell transplant (3).

With increasing survival, Myeloma has shifted to being considered a chronic condition with myeloma patients undergoing many treatments, and combinations of multiple treatments over longer periods of time (2). The impact a myeloma diagnosis brings to patients’ physical and emotional health and quality of life can be significant (4). Treatment for myeloma in itself brings further burden to patients. The tasks involved for patients to take their treatments may seem relatively simple on their own, such as taking tablets as directed, organizing and attending medical appointments and making lifestyle changes, but as the number of these tasks rises, so does the impact they have on daily, family and work life. The burden of treatment includes every part of healthcare and treatment that a patient has to undertake including appointments, tests, managing medications, self-monitoring, managing side effects and any lifestyle changes that may be needed. Higher burden from treatment can lead to poorer treatment adherence, and lower well-being and treatment satisfaction (5).

Existing myeloma treatments (such as chemotherapy, targeted therapies such as proteasome inhibitors (PI), bispecifics or cell therapies) are mainly administered intravenously or subcutaneously, except for immunomodulatory therapies (such as thalidomide, lenalidomide or pomalidomide), Selinexor^® and the PI Ninlaro^® (ixazomib) which require oral administration. Potentiators of the active agent such as dexamethasone, side-effects counteracting drugs, and pain relief are also administered orally. Bone strengthening treatments such as zoledronic acid and denosumab are administered intravenously and subcutaneously respectively. With increasing options available for treatment, and the development of new therapies, it is of crucial importance to hear from patients about their preferences on how, where and from whom they receive their myeloma treatments. Decision-making between patient and healthcare professionals on myeloma treatment needs to include these aspects of patient preferences, along with their needs and values (6). A systematic review of myeloma decision aids highlighted that more than two thirds (72%) did not indicate the need to consider these preferences, whilst those that did, failed to list any factors to assist health professionals in guiding discussion with patients (7).

There has been a broad shift of resources across Europe from acute and long-stay hospital to out-patient care within the community (8). Evidence shows that patients (across multiple health conditions) allocated to ‘hospital at home’ initiatives expressed greater satisfaction with care than those receiving in-hospital care (9). Home-based treatments have been advanced in recent times across health settings due to the potential for cost savings and, within myeloma, as a strategy to maintain safe health care for patients during the COVID-19 pandemic (10). Studies with myeloma patients suggest that while patients may perceive less burden with home-based treatments, they also recognize that in-hospital administration brings comfort and reassurance from being in the right place if anything does go wrong (11).

However, the evidence for how European myeloma patients feel about locations and routes of treatment is limited. The aim of this study is to generate evidence on how myeloma patients feel about how, where, and from whom their myeloma treatments are administered. Having evidence from patients on their perspectives on new and existing treatments, and the burden different treatments place on them, is critical for efforts to improve patient-centered care and patients’ quality of life (12).

2 Materials and methods

2.1 Steering group involvement

We appointed a steering group (n=6) of patients, family members and health professionals who we consulted regularly throughout the project. They were involved in helping to shape the research questions, survey content and analysis planning.

2.2 Survey development

A literature review was conducted to develop the survey content. The survey piloted with patients first in English and then translated into German, French, Dutch, Norwegian, Portuguese, Polish, and Hebrew by professional translators before further piloting with native speakers of the translated languages. The ‘GetFeedback’ platform was used to host the survey with all data captured anonymously online with no personal details stored.

2.3 Ethical approval

Ethical opinion was sought from the Comité d’Ethique Hospitalo-Facultaire Saint-Luc – UCLouvain who confirmed that the project was exempt from ethical approval requirements.

2.4 Eligibility and consent

All respondents to the survey were provided with an online version of the participant information sheet and were required to complete eligibility screening questions (to confirm they were over 18 years old, had a diagnosis of myeloma from a health professional, and had received at least one treatment or were currently receiving their first treatment) and a consent form before completing any survey questions.

2.5 Survey content

The final survey is available in the Supplementary Files and included the following sections:

2.5.1 Demographic and socio-economic factors

Items were included on gender, age, rurality, living situation, work status, income and health treatment funding.

2.5.2 Myeloma treatment experience and health state

Participants were asked questions to determine which routes and locations of myeloma treatment they had experienced. Their answers then routed participants to appropriate items later in the questionnaire. Survey respondents were given the instruction “we would like to know specifically about anti-cancer treatments such as chemotherapy and immunotherapy and not about steroids, bisphosphonates, or supportive/adjunctive treatments” and the different modes of treatment were explained as follows: “subcutaneous treatment is injected just under the skin”, “infusion treatment is given directly into the vein via a drip over a period of more than 10 minutes”, and “intravenous injections are given directly into the vein over a period of less than 10 minutes”. Items were also included to assess perceived overall health and overall quality of life ratings (1=very poor to 7=excellent), years since diagnosis, current myeloma state.

2.5.3 Treatment burden

Patients reported the burden of different treatment modalities across eight domains; physical, frequency, effort, precautions, emotional, daily activity, family life and financial. Participants were only asked to report burden for treatment modalities they had experienced. Items were rated on a scale of 0=no burden to 10=considerable burden.

2.5.4 Attitudes to treatments

Patients were asked to report their attitudes to different treatment types and locations whether they had experienced these for myeloma or not. Items were rated on a scale of 1=wholly negative, to 10=wholly positive.

2.5.5 Influences on treatment behavior – COM-B

The Capability, Opportunity Motivation – Behavior (COM-B (13)) framework was applied to explore the potential influences on myeloma patients’ treatment behaviors. COM-B is a framework from psychology that posits that for an individual to engage in a behavior, they must have sufficient capability, opportunity and motivation to engage in the behavior. Capability is defined as the individuals’ psychological and physical capacity to engage in the target behavior, i.e. do they have the knowledge, skills, physical strength. Opportunity refers to the environmental factors that surround the individual including physical and social opportunities, for example, access to resources and social support. Motivation refers to the internal conscious and unconscious processes that direct desire and drive to engage in the behavior and includes beliefs, values and goals. The COM-B has been widely used to understand the nature of behaviors, behavior change and in intervention and policy development. We applied the framework in this survey to explore the influences on treatment modalities and locations that were new to participants (i.e. where participants had reported having had no prior experience of these for their myeloma treatment). Survey items were developed based on existing COM-B questionnaires and participants were asked to rate items on a scale of 1=strongly disagree, 5=strongly agree.

2.5.6 Important features of treatment

Patients rated the most important features of treatment (aside from safety and efficacy) for them by selecting five options from a list of 16.

2.6 Survey distribution

The survey was disseminated through Myeloma Patients Europe’s network of myeloma patient organizations (November 2023 to March 2024). Member organizations in Belgium, Germany, the Netherlands, Norway, Portugal, Poland, Ireland, Israel and France actively distributed the survey out to their own patient networks. Dissemination of survey links occurred through social media, patient organization distribution lists, newsletters, emails, flyers and through word-of-mouth at face-to-face patient support groups.

2.7 Statistical analysis

Survey data are presented as frequencies, medians (with interquartile range, IQR) and percentages. Medians were chosen to describe the data due to non-normally distributed data. Multiple linear regression analyses were conducted to examine the associations between the burden of treatment and four predictor variables; rurality, working status (working or not), living status (living alone or not) and age (grouped into younger than 65 and 65 and older). No regression was completed for intravenous treatments due to the lower number of participants completing this scale (n=47). Mann Whitney U tests were performed to test for differences in treatment attitudes by prior experience of treatment types. A p-value cut off of 0.05 was used for statistical significance. All statistical analyses were performed using SPSS (IBM).

3 Results

3.1 Participant characteristics

The survey was completed by 901 patients from 22 countries. Distribution of responses by country is reported in Supplementary File 1.

The mean age of the patient participants was 61.6 years old (range 32–88 years). More female myeloma patients (53%) participated than male (46%). The largest proportion reported living within a city (45%), 32% were living in a town or suburb and 24% were living rurally. Most participants (82%) reported that they lived with someone else.

A large proportion of patients reported that they were currently retired (47%), however more than a third of the sample were continuing to work in some capacity, either full-time (29%) or part-time (9%).

3.2 Myeloma treatment experience and health state

Over half the participant sample had been diagnosed within the last six years (9.8% less than a year ago, 32.1% within 1–3 years and 27.0% within 4–6 years). Diagnosis was 7–9 years ago for 17.3% and 10 or more years ago for 13.9%. Nearly half of participants (46.9%) had received one line of anti-myeloma treatment, 25.9% had two lines, 10.9% had three lines,13.1% had four or more and 3.2% were unsure.

The largest proportion of the patients reported being currently in remission (59.2%), 20.9% reported they were currently in a period of relapse, 13.0% were currently taking their first treatment for myeloma, 4.9% were not sure and 2% were refractory with their myeloma having stopped responding to available treatment. Participants reported their ratings of their overall health and overall quality of life during the previous week shown in Figure 1.

Figure 1

Figure 1. Patient-reported health and quality of life.

3.3 Treatment burden

The burden for oral treatments was captured for 573, subcutaneous for 374, infusion for 254 and intravenous for 64 patients. The median treatment burden scores by domains for each treatment route are shown in Figure 2 below.

Figure 2

Figure 2. Median treatment burden score by route and burden domain.

As shown in Figure 2, intravenous and infusion treatments had some of the highest ratings across all the domains of burden and oral had the lowest. However, the overall picture of reported burden was relatively low (less than or equal to 5/10 for all domains). The most impacted domain across all treatment types was daily activity and the least impacted was the financial domain.

For oral burden, the regression model was statistically significant overall F(4, 470) =7.31, p<0.001, R² = 0.059 (adjusted R² = 0.051). However, the overall explanatory power of the model is limited, explaining only a small proportion of variance in burden (5.9%). As shown in Table 1, working status and age are significant predictors of oral burden with younger patients and those not working reporting lower burden of oral treatment.

Table 1

Table 1. Regression results for prediction of treatment burden.

For subcutaneous burden, the model explained 9.7% of the variance in burden (F(4, 2993) =7.87, p<0.001, R² = 0.097. Age group was the only statistically significant predictor with younger patients reported a lower burden (Table 1).

For the burden of infusion treatment, the model explained 7.1% of the variance (F(4, 201) =3.847, p=0.005, R² = 0.071). Again, age group was the only statistically significant predictor with patients younger than 65 reporting a lower burden (Table 1).

3.4 Attitudes to treatment

Attitudes to different at-home treatment modes are presented in Figure 3 and Table 2. As shown in the graph, oral at home was strongly preferred with 40.2% of participants rating it the maximum score of 10 (wholly positive), and <6% rating it negatively (<4 on the attitude scale). Ratings for the other at-home treatment modes showed more mixed distributions. There were more negative ratings (<4 on the scale) for at-home subcutaneous treatments delivered by friend/family-administration (25.7%) and self-administration (22.1%) compared to health professional administration (16.2%).

Figure 3

Figure 3. Attitudes to at-home treatment modes.

Table 2

Table 2. Percentage distribution of attitude scores by attitude level.

Attitudes to out-patient treatment modes are presented in Figure 4 with moderately positive attitudes overall and little differences between subcutaneous, intravenous and infusion treatments. Out-patient treatment modes had the lowest percentage of negative attitude ratings across all locations (12.9-14.5 ratings <4 on the scale) with the exception of oral treatment at home.

Figure 4

Figure 4. Attitudes to out-patient treatment modes.

In-patient treatment attitudes are shown in Figure 5. Although attitudes are generally positive, clustering around 8-10, there are more participants ratings within the negative end of the scale (17.0-24.6% ratings <4) than for out-patient treatment modes.

Figure 5

Figure 5. Attitudes to in-patient treatment modes.

Mann-Whitney U tests were carried out to test for any differences in attitudes by experience of treatment type as shown in Table 3. No differences were found for subcutaneous or intravenous treatment attitudes between patients who had prior experience of these treatment types and those who were treatment-naïve. Oral at home attitudes were more positive in the patients who had experienced this treatment than those who had not. Attitudes towards infusion treatment as an out-patient were less positive for the patients who had experienced this than those who had not. Similarly, attitudes towards infusion whilst hospitalized were lower for patients with experience of this than those without.

Table 3

Table 3. Attitudes to different treatments in treatment-naïve and treatment-experienced patients.

Novel treatment modes attitudes are shown in Figure 6. There were more positive attitudes (ratings 8-10) for a transdermal patch (53.3%) than there were for a wearable injection device (33.8% rated 8-10) along with more negativity for the wearable injection device (13.9% ratings <4) compared to the transdermal patch (26.2% ratings <4).

Figure 6

Figure 6. Attitudes to novel treatment modes.

3.5 Influences on treatment behavior – COM-B

As shown in Figure 7, participants reported the lowest motivation to try home-based subcutaneous treatments delivered by a relative/friend (median 2.0, n=704). Motivation was slightly higher to try subcutaneous treatments delivered by self (3.0, n=706) and treatment delivered via a wearable injection device (3.0, n=837) but highest overall for oral at home (4.5, n=111) and for delivery through a transdermal patch (4.0, n=852).

Figure 7

Figure 7. Capability opportunity motivation-behavior (COM-B) influences on novel treatment modes.

3.6 Most important features of treatment

The top ten most selected attributes are presented below in Figure 8. The physical impact of treatment and the impact of treatment on patients’ day-to-day activities were the most selected features. We compared the most important features for those patients who described themselves as working in some capacity (full-time or part-time) and those who were not working (retired, or on sickness absence). The same ten attributes came out as the most selected but in a different order of importance as shown in Figure 9.

Figure 8

Figure 8. The most important attributes of treatment selected by patients.

Figure 9

Figure 9. The most important attributes of treatment for patients who were working compared to those not working.

4 Discussion

This pan-European survey has provided insights into how myeloma patients’ feel about different routes and locations of existing and potential future treatments. Attitudes were most positive for oral treatments at home, however, more invasive treatment modes were rated less positively for at-home administration, particularly when administered by non-health professionals (i.e. self or family/friend). Out-patient delivery of different treatment modes were rated moderately positively, implying that professional administration and clinical settings, lead to more positive attitudes for injection treatments. These results echo existing studies that have shown myeloma patients tend to prefer oral over intravenous (14), subcutaneous (15) and other routes (16–18). Some of the reasons patients may prefer oral treatment can be convenience-related in terms of travel (14, 19) and the ability to fit treatments in with work (14, 19, 20). Patients with experience of infusion treatments rated out-patient and in-patient infusion less positively than those who did not have this first-hand experience. Further qualitative research to delve deeper into patients’ experiences of infusion treatments in these locations could be of benefit to identify ways to further support patients receiving infusion treatments.

In terms of attitudes towards home-based treatments, this study suggests that myeloma patients’ reactions to self-administration and family/friend-assisted administration may be somewhat uncertain, at least initially. A previous study with hematology patients explored what factors drive preferences for home-based treatments (21). The ability to better manage home and personal life, and to continue work commitments were important factors along with the emotional benefits that come with the familiarity and comfort of being at home. However, there is a lack of evidence on how myeloma patients feel about self-administration of any treatments at home. A number of small-scale single-center studies have been conducted all with a focus on a specific drug. A survey of 28 myeloma patients found that around 50% agreed they would be comfortable with self-administration of subcutaneous bortezomib (22), and a qualitative interview study of 10 patients reported generally positive attitudes (23). Another study of home-based administration of subcutaneous bortezomib injections investigated 15 patients via a survey at multiple time points (24). Seven out of fifteen patients reported feeling anxious prior to administering their 1^st dose, but by the fourth cycle this had reduced to 0. These existing studies suggest that uncertainty about self-administration may be an initial challenge for some patients. The results of our study are drug-agnostic and from a substantially larger dataset of myeloma patients contributing to this evidence base.

The questions applying the COM-B framework provide further insights into what factors may be driving the attitudes scores. Subcutaneous delivery by self-administration was rated on the midpoint of the scale (median score of 3 from scale of 5) for the motivation domain indicating uncertainty from patients about whether they would want this option or not. Subcutaneous by a family member or friend was scored lower on the motivation domain (median of 2 from scale of 5) indicating a lack of desire from patients for this option. The physical and social opportunity COM-B domains were also rated lower for home-based subcutaneous from a family member or friend, at around the mid-point of the scale thereby indicating uncertainty about whether there would be the necessary resources or social support to facilitate this administration option. In contrast, oral at home treatments received the highest ratings across the COM-B domains indicating patients felt they had the desire, capabilities and support around them to take these treatments as planned. Any self- or family carer-assisted administration of medicines should be discussed carefully with patients to identify any concerns and what support may be needed for home-based administration to be successful. Patients and families undertaking home-based administration of medicines for the first time are likely to experience some uncertainty and anxiety and it may not be the right option for every patient. Individualized treatment planning is needed to ensure that patients’ preferences and needs are taken into account. Where patients may have the opportunity to self-administer treatments home-based, education and support are crucial to ensure patients can feel confident and comfortable.

The survey results highlighted the burden experienced by patients undergoing myeloma treatment. Burden ratings were on the lower end of the scale across all treatment modalities but the highest ratings across all domains were for intravenous treatments, in concordance with prior research (11). The main drawback to intravenous treatments gleaned from prior studies include the time spent for administration (22, 25). The linear regression models suggests that the burden of all myeloma treatments is higher in patients 65 and older, however only a limited portion of variance in burden was explained by age. These findings suggest that age may influence perceived burden, but other individual factors such as comorbidities, frailty and treatment-related toxicity are likely to also play important roles. A prior study indicated that the burden of treatment is higher for older myeloma patients who have high comorbidities and those with poor performance status (5). Further evidence examining electronic health records data has shown that older patients had stable and slightly increasing treatment burden in the first five years after diagnosis attributable to the treatment of comorbid diseases (26). With age comes the increasing risk of comorbidity and frailty which can produce a cumulative burden for both patients and their families. Furthermore, the susceptibility to some treatment-related toxicity and adverse events is also increased in older myeloma patients (27). Treating clinicians need to appreciate that older patients may well have different treatment priorities and preferences and should consider both age-related vulnerabilities and individual circumstances when discussing treatment options with patients.

4.1 Strengths and limitations

This study has a number of limitations. Our survey respondents were a self-selecting sample due to the dissemination approach. The ratings of health and QoL suggests that our participants were relatively well, which is perhaps not surprising given the need to be well enough to participate in a research survey. As such the results should be interpreted with caution as they may not be representative of very unwell patients. Participants were rating administration types and routes based on short descriptors and preferences for treatments in the real-world will change based on the efficacy and side-effect profiles of specific drugs. However, the previously published literature predominantly has focused on oral treatment at home, or if focused on subcutaneous home-based, has been small single site and single country studies. This study provides evidence from a large sample of patients across Europe and covers treatment routes and locations previously neglected by research, including potential novel delivery mechanisms (wearable injection devices and transdermal patches).

4.2 Conclusions

This pan-European survey provides evidence for myeloma patients’ attitudes towards existing and potential treatment routes and locations. With more myeloma therapies emerging, treatment choices and plans should be tailored to the individual needs, preferences, lifestyle and values of the patient. Healthcare providers should be aware of the impact of treatments beyond clinical efficacy, on patients’ daily living, emotional well-being and quality of life. Understanding the treatment experiences of patients is critical to help healthcare providers achieve holistic care. Preparation for home-based treatments is required to ensure that patients, and their families, can feel confident and able to have home-based treatments. Materials developed to help educate and support patients with home-based treatments should be co-created with patients to ensure the most important aspects are included and that they are understood by all. For patients, knowledge about the potential treatment experiences can help to inform their decision-making and make practical preparations to reduce the burden of treatments.

Author’s note

DL-M and SW are patient authors bringing their lived experience as myeloma patient and family carer to a myeloma patient to this work.

Data availability statement

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

Ethics statement

Ethical opinion was sought from the Comité d’Ethique Hospitalo-Facultaire Saint-Luc –UCLouvain who confirmed that the project was exempt from ethical approval requirements. The study was conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.

Author contributions

ED: Conceptualization, Investigation, Writing – review & editing, Visualization, Writing – original draft, Methodology, Project administration, Formal analysis, Supervision, Data curation. StS: Writing – review & editing, Investigation, Project administration, Conceptualization, Visualization, Methodology, Formal analysis. XL: Writing – review & editing, Conceptualization. DL-M: Resources, Writing – review & editing, Conceptualization. CP: Conceptualization, Writing – review & editing. SW: Writing – review & editing, Conceptualization. KJ: Funding acquisition, Resources, Project administration, Writing – review & editing, Supervision, Conceptualization, Methodology. KM: Resources, Funding acquisition, Project administration, Writing – review & editing, Supervision, Conceptualization, Methodology.

Funding

The author(s) declared that financial support was received for this work and/or its publication. Research funding was provided for this study by Pfizer, Sanofi, and Takeda. Funders had no role in the design, collection, analysis, or interpretation of data.

Acknowledgments

We wish to dedicate this paper in memory of Luc Aelbrecht who contributed insightful feedback and guidance during the early stages of this research project as part of our steering committee. We would like to sincerely thank all the participants who contributed their time to the survey and all MPE’s member organizations who kindly assisted with recruitment. In particular, grateful thanks go to Leukämiehilfe Rhein-Main E. V., AMM-Online, Hematon, The Norwegian Blood Cancer Association, Assoiação Portuguesa Contra A Leucemia, Fundacja Carita im. Wiesławy Adamiec, Multiple Myeloma Ireland, Association Française des Malades du Myélome Multiple (AF3M), and AMEN Israel.

Conflict of interest

Authors ED, StS, KJ, and KM are employees of Myeloma Patients Europe, a non-profit umbrella organization of local and national patient support organizations across Europe. XL has received honoraria and consultancy fees from Janssen, Sanofi, Abbvie, Pfizer, Novartis, Glaxo Smith Kline, BMS, Oncopeptide, Amgen, Takeda, Kite, Ishnios. DL-M has received honoraria from Pfizer. CP has received honoraria for giving educational talks and/or attending advisory boards from Abbvie, Amgen, Astra Zeneca, BMS/Celgene, Glaxo Smith Kline, iTEOS Therapeutics, Johnson and Johnson, Menarini Stemline, Pfizer, Opna Bio. SW declares previous paid employment as Senior Patient Engagement Director in Medical Affairs retired 31-01–25 and receives pension, and currently holds stock options with, F. Hoffmann La-Roche Ltd. Myeloma Patients Europe work is supported by grants from pharmaceutical companies and from public sources. Full disclosure of organizations financing can be found at https://www.mpeurope.org/about-mpe/our-funding/.

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Supplementary material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/frhem.2025.1699930/full#supplementary-material

References

1. Palumbo A and Anderson K. Multiple myeloma. N Engl J Med. (2011) 364:1046–60. doi: 10.1056/NEJMra1011442

PubMed Abstract | Crossref Full Text | Google Scholar

2. Fifer SJ, Ho KA, Lybrand S, Axford LJ, and Roach S. Alignment of preferences in the treatment of multiple myeloma – a discrete choice experiment of patient, carer, physician, and nurse preferences. BMC Cancer. (2020) 20:546. doi: 10.1186/s12885-020-07018-6

PubMed Abstract | Crossref Full Text | Google Scholar

3. Osborne TR, Ramsenthaler C, Siegert RJ, Edmonds PM, Schey SA, and Higginson IJ. What issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life tools. Eur J Haematol. (2012) 89:437–57. doi: 10.1111/ejh.12012

PubMed Abstract | Crossref Full Text | Google Scholar

4. Rubins Z, Gibson BJ, and Chantry A. What can patient narratives reveal to us about the experience of a diagnosis of myeloma? A qualitative scoping review. J Patient Exp. (2022) 9:23743735221079133. doi: 10.1177/23743735221079133

PubMed Abstract | Crossref Full Text | Google Scholar

5. Mian HS, Fiala MA, and Wildes TM. Burden of treatment among older adults with newly diagnosed multiple myeloma. Clin Lymphoma Myeloma Leuk. (2021) 21:e152–9. doi: 10.1016/j.clml.2020.09.010

PubMed Abstract | Crossref Full Text | Google Scholar

6. Orr LD, Lin D, Wu B, LeBlanc TW, Faiman B, Ahlstrom J, et al. Patient, care partner, and physician voices in treatment decision-making for multiple myeloma. Patient Prefer Adherence. (2024) 18:2147–58. doi: 10.2147/PPA.S474722

PubMed Abstract | Crossref Full Text | Google Scholar

7. Choon-Quinones M, Hose D, Kaló Z, Zelei T, Harousseau JL, Durie B, et al. Patient and caregiver experience decision factors in treatment decision making: results of a systematic literature review of multiple myeloma decision aids. Value Health. (2023) 26:39–49. doi: 10.1016/j.jval.2022.04.003

PubMed Abstract | Crossref Full Text | Google Scholar

8. World Health Organization. The Solid Facts: Home Care in Europe. Geneva: World Health Organization (2008).

Google Scholar

9. Shepperd S and Iliffe S. Hospital at home versus in-patient hospital care. Cochrane Database Syst Rev. (2005). doi: 10.1002/14651858.CD000356.pub2

PubMed Abstract | Crossref Full Text | Google Scholar

10. Assessment of the needs of patient organisations during the COVID-19 pandemic. In: Highlight report from the second survey of MPE’s member organisations. Brussels: Myeloma Patients Europe. (2021). Available online at: https://www.mpeurope.org/wp-content/uploads/2024/04/COVID-19-report-2021_v3_web.pdf (Accessed February 11, 2025).

Google Scholar

11. He J, Duenas A, Collacott H, Lam A, Gries KS, Carson R, et al. Patient perceptions regarding multiple myeloma and its treatment: qualitative evidence from interviews with patients in the United Kingdom, France, and Germany. Patient. (2021) 14:613–23. doi: 10.1007/s40271-021-00501-7

PubMed Abstract | Crossref Full Text | Google Scholar

12. Fifer S, Galinsky J, and Richard S. Myeloma patient value mapping: A discrete choice experiment on myeloma treatment preferences in the UK. Patient Prefer Adherence. (2020) 14:1283–93. doi: 10.2147/PPA.S259612

PubMed Abstract | Crossref Full Text | Google Scholar

13. Michie S, van Stralen MM, and West R. The behaviour change wheel: A new method for characterising and designing behaviour change interventions. Implement Sci. (2011) 6:42. doi: 10.1186/1748-5908-6-42

PubMed Abstract | Crossref Full Text | Google Scholar

14. Eek D, Krohe M, Mazar I, Horsfield A, Pompilus F, Friebe R, et al. Patient-reported preferences for oral versus intravenous administration for the treatment of cancer: a review of the literature. Patient Prefer Adherence. (2016) 10:1609–21. doi: 10.2147/PPA.S106629

PubMed Abstract | Crossref Full Text | Google Scholar

15. Leleu X, Mateos MV, Delforge M, Lewis P, Schindler T, Gibson C, et al. Assessment of multiple myeloma patient preferences on treatment choices: an international discrete choice study. Blood. (2015) 126:2086. doi: 10.1182/blood.V126.23.2086.2086

Crossref Full Text | Google Scholar

16. Rabin N, Kotb R, Zomas A, Fernandez-Nistal A, D’Ambrosio R, Bent-Ennakhil N, et al. Patient preferences, treatment satisfaction and quality of life in newly diagnosed and relapsed/refractory multiple myeloma patients receiving injectable-containing or fully oral therapies: The EASEMENT study. Br J Haematol. (2021) 193, 156–7.

Google Scholar

17. Auclair D, Mansfield C, Fiala MA, Chari A, Cole CE, Kaufman JL, et al. Preferences and priorities for relapsed multiple myeloma treatments among patients and caregivers in the United States. Patient Prefer Adherence. (2022) 16:573–85. doi: 10.2147/PPA.S345906

PubMed Abstract | Crossref Full Text | Google Scholar

18. Dombeck C, Swezey T, Gonzalez Sepulveda JM, Reeve BB, LeBlanc TW, Chandler D, et al. Patient perspectives on considerations, tradeoffs, and experiences with multiple myeloma treatment selection: a qualitative descriptive study. BMC Cancer. (2023) 23:65. doi: 10.1186/s12885-022-10458-x

PubMed Abstract | Crossref Full Text | Google Scholar

19. Rifkin RM, Bell JA, DasMahapatra P, Hoole M, Lowe M, Curran C, et al. Treatment satisfaction and burden of illness in patients with newly diagnosed multiple myeloma. Pharmacoecon Open. (2020) 4:473–83. doi: 10.1007/s41669-019-00184-9

PubMed Abstract | Crossref Full Text | Google Scholar

20. Gupta S, Abouzaid S, Liebert R, Parikh K, and Rosenberg AS. Assessing the effect of injectable or oral routes of treatment administration on patient-reported outcomes and out-of-pocket costs among patients with multiple myeloma. Blood. (2020) 136:29–30. doi: 10.1182/blood.V128.22.5931.5931

Crossref Full Text | Google Scholar

21. McGrath P and Holewa H. Reconceptualising relocation for specialist treatment: insights from New Zealand. Supportive Care Cancer. (2012) 20:499–505. doi: 10.1007/s00520-011-1102-3

PubMed Abstract | Crossref Full Text | Google Scholar

22. Barbee MS, Harvey RD, Lonial S, Kaufman JL, Wilson NM, McKibbin T, et al. Subcutaneous versus intravenous bortezomib: efficiency practice variables and patient preferences. Ann Pharmacother. (2013) 47:1136–42. doi: 10.1177/1060028013503122

PubMed Abstract | Crossref Full Text | Google Scholar

23. Kirkegaard J, Lundholm BW, Rosenberg T, Lund T, Gundesen MT, and Dieperink KB. Home is best. Self-administration of subcutaneous Bortezomib at home in patients with multiple myeloma - A mixed method study. Eur J Oncol Nurs. (2022) 60:102199. doi: 10.1016/j.ejon.2022.102199

PubMed Abstract | Crossref Full Text | Google Scholar

24. Beer H, Furphy EJ, Harrison S, Joyce T, Combe N, Downey C, et al. NP-108: Improvement in patient experience with successful implementation of a Velcade at Home program in patients with myeloma. Clin Lymphoma Myeloma Leuk. (2021) 21:S168–9. doi: 10.1016/S2152-2650(21)02361-2

Crossref Full Text | Google Scholar

25. Petrucci MT, Finsinger P, Chisini M, and Gentilini F. Subcutaneous bortezomib for multiple myeloma treatment: patients’ benefits. Patient Prefer Adherence. (2014) 8:939–46. doi: 10.2147/PPA.S38142

PubMed Abstract | Crossref Full Text | Google Scholar

26. Bennink C, van der Klift M, Sonneveld P, Hazelzet JA, and Blommestein HM. High hospital-related burden of treatment for multiple myeloma patients: outcomes of a feasibility study using reimbursement data from electronic health records. Health Policy Tech. (2022) 11:100695. doi: 10.1016/j.hlpt.2022.100695

Crossref Full Text | Google Scholar

27. Wildes TM, Rosko A, and Tuchman SA. Multiple myeloma in the older adult: better prospects, more challenges. J Clin Oncol. (2014) 32:2531–40. doi: 10.1200/JCO.2014.55.1028

PubMed Abstract | Crossref Full Text | Google Scholar