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Acta haematologica · 2026

Выявление потребностей пациентов с множественной миеломой: исследование на основе вопросника для израильских пациентов.

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Levy Yurkovski I, Ben-Dov S, Shoam V, Yuz M, Lavi N

Аннотация

Ввод: Множественная миелома — неизлечимое хроническое злокачественное заболевание. Сама болезнь и ее лечение ухудшают качество жизни (QoL), однако нет данных о биопсихосоциальных потребностях пациентов в эпоху новых методов лечения. В текущем исследовании мы стремились определить биопсихосоциальные потребности пациентов с множественной миеломой. МЕТОДЫ: Это описательное исследование пациентов с множественной миеломой в Израиле. 2024. Эта информация была основана на вопроснике, в котором рассматривались физические, психологические и социальные потребности пациентов миэломы. Мы проанализировали основные дефекты QoL и то, что их затронуло, главного пособника в борьбе с этим заболеванием, психосоциальные потребности, о которых сообщили пациенты, и трудности в преодолении таких трудностей. Основным симптомом, о котором сообщили многие пациенты миэломы, была усталость. Число патрубков лечения ухудшилось QoL (нестандартный коэффициент: 0.987, 95% CI: 0.284; 1.691, p = 0.006). Партнёр пациента в основном помогал справиться с этим заболеванием.72.7%). Наиболее желательным видом поддержки была помощь в получении доступа к правам (средняя) 5, междуквартальный диапазон 3-5); однако one- Третья не использовала предоставляемые им вспомогательные услуги. Всего 48% Пациенты поговорили со своим врачом о борьбе и сопутствующих трудностях. ЗАКЛЮЧЕНИЕ: Пациенты из племени миелома сообщают о различных дефектах в биопсихосоциальных компонентах QoL. Несмотря на то, что предоставляются вспомогательные услуги, необходимо внести коррективы для оптимального удовлетворения потребностей пациентов. Дальнейшие исследования должны быть направлены на проверку эффективности различных мероприятий по биопсихосоциальным компонентам QoL этих пациентов в эпоху новых лекарств </p>.
Оригинал публикации

Identification of Needs of Patients with Multiple Myeloma: A Questionnaire-Based Study in Israeli Patients.

UNLABELLED: <p>Introduction: Multiple myeloma is an incurable chronic malignant disease. The disease itself and its treatment impair quality-of-life (QoL), yet there is no data regarding the biopsychosocial needs of patients in the era of new treatments. In the current study, we aimed to identify the biopsychosocial needs of patients with multiple myeloma.

METHODS: This is a descriptive study on patients with multiple myeloma in Israel in 2024. The information was based on a questionnaire examining physical, psychological, and social needs filled out by myeloma patients. We analyzed the main impairments of QoL and what affected them, the main supporter in dealing with the disease, psychosocial needs reported by the patients and the difficulties in dealing with such difficulties.

RESULTS: The main symptom reported by multiple myeloma patients was fatigue. The number of treatment lines worsened QoL (unstandardized coefficient: 0.987, 95% CI: 0.284; 1.691, p = 0.006). The patient's partner mostly helped in dealing with the disease (72.7%). The most desired type of support was assistance in accessing rights (median 5, interquartile range 3-5); however, one-third did not use the support services offered to them. A total of 48% the patients talked to their doctor about the struggle and the accompanying difficulties.

CONCLUSION: Myeloma patients report various impairments in the biopsychosocial components of QoL. Although supportive services are offered, adjustments must be made to optimally meet patients' needs. Further studies should test the effectiveness of different interventions on the biopsychosocial components of the QoL of these patients in the era of new drugs. </p>.

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Introduction

Multiple myeloma is a plasma cell malignancy characterized by excessive monoclonal antibody production. It accounts for approximately 2% of all cancers, with a higher prevalence among older adults and men [ 1 , 2 ]. Despite advances in treatment, the 5-year survival rate remains around 61% [ 3 ].

The disease affects various body systems, causing complications such as bone damage in over 75% of patients, fractures, and pain [ 4 ]. Treatments like bisphosphonates and radiation often provide inconsistent relief [ 5 ]. Hypercalcemia and renal impairment are also common, with interventions often failing to fully alleviate symptoms [ 6 ]. Complications such as infections and neuropathy further reduce quality-of-life (QoL) [ 6 ].

Therapies including proteasome inhibitors, immunomodulatory drugs, monoclonal antibodies, and autologous stem cell transplantation, have transformed multiple myeloma into a manageable chronic condition [ 7 ]. However, they come with significant side effects, including neuropathy, cognitive impairment, gastrointestinal symptoms, and cardiovascular complications [ 8 ]. Novel immunotherapies like antibody-drug conjugates, bispecific antibodies, and chimeric antigen receptor T-cells (CAR-T) have shown promise in targeting myeloma cells and improving prognosis [ 9 ]. However, these therapies have introduced severe side effects, such as prolonged immunosuppression leading to recurrent infections [ 10 ]. Moreover, they may cause persistent symptoms greatly impacting QoL [ 11 ]. For example, fatigue is a major burden of myeloma treatment, reducing functional capacity and social engagement. Management strategies include blood transfusions, depression treatment, and exercise programs, though their effectiveness is limited [ 12 , 13 ]. Cognitive-behavioral therapy is effective for sleep disorders, but economic barriers limit its use [ 14 ].

Hence, the combination of disease symptoms and treatment side effects significantly impairs QoL of myeloma patients and is linked to increased depression, anxiety, and reduced social satisfaction [ 15 ]. Although much research has been done on the physiological effects of myeloma and its treatment on patients, there is not enough data on their impact on psychosocial wellbeing. Therefore, the current study aims to identify the biopsychosocial needs of multiple myeloma patients, in order to develop interventions that may address both their physical and psychosocial wellbeing in the era of novel therapies.

Methods

Study Design

This is a prospective descriptive questionnaire study conducted in 2024 in Israel. The information was collected based on a questionnaire examining physical, psychological, and social needs that was distributed to patients with multiple myeloma throughout the country.

Ethical Approval

The study was reviewed and approved by the Bnai Zion Medical Center Institutional Review Board in accordance with the Declaration of Helsinki (approval number BNZ-24–0045). Since it was a questionnaire study and the survey was anonymous, written informed consent was not required by the Ethics Committee. It was made clear in the questionnaire opening that the data will be used for statistical analyses and research purposes and that filling in the questionnaire constitutes informed consent to the study.

Study Population

Inclusion criteria included patients with a diagnosis of multiple myeloma, over the age of 18, living in Israel, and able to complete a questionnaire in one of the following languages – Hebrew/Arabic/Russian. There were no exclusion criteria.

Study Process

A questionnaire was developed by 5 physicians, 2 nurses, one psychologist and one social worker involved in the treatment of patients with multiple myeloma in Israel (online Supplement 1; for all online suppl. material, see https://doi.org/10.1159/000547025 ). It included 20 questions in the following areas: sociodemographic background, medical condition, prevalence of symptoms, and support needs and factors. The questionnaire was translated into Hebrew, Arabic, and Russian and distributed via the Microsoft Forms platform to patients with multiple myeloma in several ways: through patient associations, in hematology units by staff members and on the social networks of myeloma patients. Filling out the questionnaire constituted informed consent to participate in the study.

Outcomes

The primary endpoint was the prevalence of main symptoms experienced by multiple myeloma patients in Israel, including correlations with sociodemographic and medical indicators. Secondary endpoints included the type of desired interventions and various services that help patients cope with the difficulties, including correlations with dominant symptoms as well as the patient’s sociodemographic and medical characteristics.

Sample Size Calculation

The 5-year prevalence of multiple myeloma in Israel according to the World Health Organization data is 1,523 people [ 16 ]. The required sample size was calculated using Raosoft software to ensure adequate representation of this patient population. Specifically, assuming a 95% confidence level (two-sided confidence interval, α = 0.05) and a power of 80% (β = 0.2), a margin of error of 7.5% was chosen to balance feasibility with statistical rigor to allow for an adequately precise estimation of key biopsychosocial needs while considering practical constraints in patient recruitment and study resources. Using these parameters, a minimum sample size of 149 respondents was determined to reliably reflect the needs and characteristics of the broader multiple myeloma patient population in Israel.

Statistical Analysis

The data was statistically processed using SPSS software. Means with standard deviations as well as medians with interquartile ranges (IQRs) were calculated for all continuous variables. A frequency table was presented for the discrete, nominal, and ordinal variables. Correlations between the study variables were calculated using Pearson and Spearman tests, and comparisons were made using t test and χ 2 or Fisher exact tests. Finally, multivariate linear regression analyses were performed between the dependent and independent variables to examine the effect of the patients’ baseline characteristics on their QoL and types of support that were beneficial to them. The significance level was defined as p value <0.05.

Results

Baseline Characteristics

Among the 622 screened patients, a total of 158 patients completed the research questionnaire (response rate 25%). As outlined in Table 1 , there was an even gender distribution (50% women). The majority of participants were over the age of 60 (74%), born in Israel (80.4%), Jewish (93.7%), secular (61.4%), treated in central Israel (55.1%), and had private health insurance (70.9%). More than half of the participants were diagnosed within the past 5 years (55%), with a median of two treatment lines. Additionally, 55.7% of the responders had undergone bone marrow transplantation and 12% had received CAR T-cell therapy.

Table 1.
Baseline characteristics
USSR, Union of Soviet Socialist Republics; CAR-T, Chimeric antigen receptor T cells.

CharacteristicsFrequency (%)
Age
<50 years12 (7.6)
50–59 years29 (18.4)
60–69 years62 (39.2)
70–79 years44 (27.8)
≥80 years11 (7.0)
Gender (female)79 (50)
Country of birth
Israel127 (80.4)
Former USSR5 (3.2)
Europe10 (6.3)
Other11 (7.0)
Religion (Jewish)148 (93.7)
Religious affiliation
Secular97 (61.4)
Traditional33 (20.9)
Religious27 (17.1)
Private insurance112 (70.9)
Time since myeloma diagnosis
<1 year31 (19.6)
1–5 years56 (35.4)
5–10 years24 (15.2)
>10 years28 (17.7)
Medical center for myeloma treatment
Central Region87 (55.1)
Haifa and Northern Region32 (20.3)
Southern Region15 (9.5)
Jerusalem23 (14.6)
Number of treatment lines
Mean (standard deviation)2.56 (2.84)
Median (range)2.0 (0–16)
“Special” treatments
Autologous stem-cell transplant88 (55.7)
CAR-T therapy19 (12.0)

Biopsychosocial Domains Impairing QoL

The study assessed the domains in which patients experienced an impact on their QoL including severity rated from 1 (no impact) to 5 (severe impact). As detailed in Table 2 , the most severe symptom was fatigue (median 4, IQR 3–4), followed by pain, sleep disturbances and gastrointestinal issues (all median 3, IQR 2–4). Social impacts included significant disruption in work and leisure activities (median 3). The cumulative score, comprising ten components ranging from 1 to 5, provided an overall QoL score between 10 (no impairment) and 50 (severe impairment). The median cumulative score was 26 (IQR 20–33). No significant correlation was observed between patients’ baseline characteristics and either the severity of QoL impairments or the overall score (Spearman correlation coefficients < 0.3). Multivariate linear regression analysis identified that the number of treatment lines was the sole factor significantly worsening overall QoL (unstandardized coefficient: 0.987, 95% CI: 0.284; 1.691, p = 0.006).

Table 2.
Severity of biopsycho-social domains impairing QoL: from 1 (no impact) to 5 (severe impact)
IQR, interquartile range.

DomainsMedian (IQR)
Fatigue4.0 (3.0–4.0)
Pain3.0 (2.0–4.0)
Sleep disturbances3.0 (2.0–4.0)
Gastrointestinal problems3.0 (2.0–4.0)
Leisure activities and hobbies3.0 (2.0–4.0)
Work and career3.0 (1.0–5.0)
Neuropathy2.0 (1.0–4.0)
Depression and anxiety2.0 (1.0–3.0)
Social interactions2.0 (1.0–3.0)
Relationships and intimacy2.0 (1.0–4.0)

Support and Assistance

A total of 51% the patients indicated that a partner (husband/wife) was the main source of support, 19% mentioned a child, and 11% indicated a friend. Patients were also asked to rate the perceived usefulness of various forms of support from 1 (not useful) to 5 (most useful). Assistance in accessing patient rights was rated as the most helpful (median 5, IQR 3–5), followed by support from the Israeli Medical Association for Myeloma Patients, complementary medicine treatments, and information on treatment options for myeloma and pain management (all median 4).

According to a multivariate regression linear analysis, female patients were significantly more likely to seek complementary medicine (unstandardized coefficient: −0.858, 95% CI: −1.387 to −0.329, p = 0.002) and emotional support services (unstandardized coefficient: −0.896, 95% CI: −1.427 to −0.366, p = 0.001) compared to men. Additionally, patients treated at noncentral hospitals showed a higher tendency toward using complementary medicine services (unstandardized coefficient: 0.987, 95% CI: 0.089–0.520, p = 0.006). Younger age (unstandardized coefficient: −0.325, 95% CI: −0.640 to −0.010, p = 0.043) and greater treatment exposure (unstandardized coefficient: 0.171, 95% CI: 0.002–0.340, p = 0.048) significantly correlated with a greater desire for treatment-related information.

Utilization of Support Services

The study also examined which supportive services patients used. Among respondents, 33.5% reported not using any support services, while 24.1% used nursing services, 19.6% used virtual services (social networks, etc.), and 17.7% accessed complementary medicine clinics ( Fig. 1 ).

Fig. 1. Support services used by patients with multiple myeloma.
Fig. 1. Support services used by patients with multiple myeloma.

Communication Barriers with Medical Staff

While nearly half (48%) of patients reported discussing emotional and coping issues with their physician, a substantial portion (19%) did not discuss these concerns with any medical professional. Main barriers included patient discomfort discussing emotional issues (22.8%) and perceived time constraints during medical consultations (20.3%).

Discussion

The current study focuses on exploring the biopsychosocial needs of patients diagnosed with multiple myeloma, aiming to adapt future therapeutic approaches accordingly. The findings highlight several key areas of concern regarding QoL, the types of support needed, and gaps in the existing healthcare services available to these patients.

Impairments in QoL

The study identified fatigue as the most severe QoL concern among patients with multiple myeloma, consistent with findings in previous research conducted before the advent of novel therapies [ 17 ], emphasizing the necessity for targeted interventions such as mind-body therapies and virtual reality, which have demonstrated effectiveness for reduction of fatigue in other oncology settings [ 18 ]. Other reported persistent physical symptoms including pain, sleep disturbances, and gastrointestinal issues, as well as psychosocial challenges, indicate ongoing gaps between symptom management practices and patient needs. Hence, effective supportive care must prioritize interventions explicitly addressing both physical and psychosocial challenges in the era of novel treatments. Indeed, the GRIFFIN trial highlighted that even highly effective frontline quadruplet therapies, while improving clinical outcomes, still necessitate robust survivorship care addressing persistent treatment-related symptoms and psychosocial impacts [ 19 ]. Moreover and similarly to our study results, real-world data emphasize that despite therapeutic advances in the management of multiple myeloma, actual patient experiences often diverge from clinical trial outcomes [ 20 ], especially among patients with relapsed or refractory disease who continue to encounter substantial symptom burdens, highlighting unmet psychosocial needs despite therapeutic improvements [ 21 ]. Therefore, integrative medicine including nutrition and complementary approaches, which demonstrated some benefits in biopsychosocial supportive care of patients with multiple myeloma [ 22 ], should be widely used in this population, while more comprehensive studies are needed to evaluate its efficacy in the context of novel therapies.

Preferred Supportive Care Types

The most requested form of support was assistance in navigating rights and entitlements, which likely reflects the unique characteristics of multiple myeloma as a chronic, incurable disease requiring long-term treatment. Many patients experience economic challenges, including high treatment costs and difficulty obtaining health insurance, and they may also face employment instability [ 23 ]. Furthermore, female patients and those treated at hospitals outside central regions showed a greater interest in complementary medicine. Previous studies have indicated that women are more likely to use complementary therapies compared to men [ 24 ] and the availability of such treatments is generally higher in northern medical centers in Israel. This disparity underscores the need to expand access to integrative oncology services uniformly across all regions. Although this study focused on the Israeli healthcare setting, similar challenges likely occur in other countries. Globally, healthcare systems may experience similar dynamics: fragmented systems (e.g., USA) could face substantial regional variations, while highly centralized systems (e.g., United Kingdom) might more effectively achieve equitable integration. Therefore, public health systems worldwide, both fragmented and centralized, should prioritize expanding integrative oncology services, considering their incorporation into national health baskets to ensure equitable patient access and standardized quality of care.

Barriers to Utilization of Support Services

A critical finding was the significant gap between the perceived utility of available supportive services and their actual uptake. This discrepancy likely arises from barriers such as low patient awareness, geographic constraints, and mismatches between services offered and patient expectations. Effective translation of clinical trial insights into real-world practice necessitates targeted educational initiatives, improved service accessibility, and tailored patient support aligning closely with patient-specific needs and preferences [ 20 ].

Communication with Medical Staff

Most patients reported discussing their challenges with their physician, but around 20% did not, often due to discomfort or lack of time. However, the majority indicated they would prefer discussing these issues with their doctor if given the opportunity. This underscores the dual role physicians’ play as both medical and emotional support figures. To overcome identified barriers, potential solutions could include integrating routine psychosocial screening tools into clinical workflows, enabling earlier identification of emotional distress, and systematically facilitating such discussions. Additionally, expanding multidisciplinary care teams with trained psychosocial specialists such as oncology nurses, social workers, or clinical psychologists could enhance patient support and alleviate the emotional and practical burdens placed solely on physicians. Future research should evaluate the effectiveness of these integrated approaches in improving patient-provider communication and psychosocial outcomes.

Limitations

This study included patients who were physically and mentally able to complete the survey, which may have led to selection bias, excluding those most severely affected. Furthermore, despite national outreach, respondents predominantly came from central regions of Israel and exhibited a relatively homogeneous demographic profile (primarily Jewish, Israeli-born, and secular). These characteristics limit the generalizability of our findings, particularly regarding patients from minority ethnic and religious backgrounds, individuals living in rural or peripheral regions, and those receiving care in under-resourced facilities. These groups may have distinct biopsychosocial needs, barriers to accessing care, and different support preferences. Future studies should specifically aim to include more diverse populations to ensure that interventions developed from such findings are culturally sensitive, equitable, and effectively tailored to the needs of all patients with multiple myeloma. Eventually, the questionnaire was missing sociodemographic data such as degree of schooling, as well as medical data including sickness status, current and previous therapies, that could not therefore be correlated with biopsychosocial impairments. However, since this questionnaire study meant only to identify patients’ needs, correlations with sociodemographic and medical backgrounds should be evaluated in follow-up studies.

Conclusions

As hypothesized, multiple myeloma patients reported numerous physical, social, and psychological impairments affecting their QoL. Assistance with navigating rights, complementary medicine, oncology nursing support, and treatment-related information were identified as valuable forms of support, with preferences varying by patient characteristics. Additionally, the critical role of the physician in providing emotional support was highlighted. Future research should investigate the effectiveness of complementary and integrative treatments in addressing the biopsychosocial components of QoL among multiple myeloma patients, particularly in the context of novel therapies. Should these approaches prove effective, expanding access through the public health system to different patient groups around the world will be essential.

Statement of Ethics

The study was reviewed and approved by the Bnai Zion Medical Center Institutional Review Board in accordance with the declaration of Helsinki (Approval No. BNZ-24–0,045). Since it was a questionnaire study and the survey was anonymous, written informed consent was not required by the Ethics Committee. It was made clear in the questionnaire opening that the data will be used for statistical analyses and research purposes and that filling in the questionnaire constitutes informed consent to the study.

Conflict of Interest Statement

The authors declare that there were no conflicts of interest.

Funding Sources

The research received no funding.

Author Contributions

Ilana Levy Yurkovski contributed to constructing the study design, patient recruitment, article writing, and reviewing. Shira Ben-Dov contributed to patient recruitment, article writing, and reviewing. Varda Shoam and Micha Yuz contributed to patient recruitment and article reviewing. Noa Lavi contributed to constructing the study design, and article reviewing.

Data Availability Statement

The data that support the findings of this study are not publicly available due to limitation of the manuscript’s length but are available from the corresponding author upon reasonable request.

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ИП Урсолов Владлен Сергеевич

ИНН 500118482352 · ОГРНИП 314500117700049

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