Определение сексуальных потребностей и потребностей в интимности у пациентов с множественной миеломой: межсекторальное обследование.

Introduction

Multiple myeloma (MM) is a chronic hematologic malignancy [ 1 ] clinically characterized by substantial symptom burden (fatigue, weakness, and pain) which contributes to impaired physical functioning and reduced quality of life (QoL) across the disease course [ 2 ]. These disease- and treatment-related effects occur in domains highly relevant to sexuality and intimacy, including mobility, comfort, energy, mood, and self-image.

Sexual health is an integral component of overall well-being and health-related QoL [ 3 ]. In oncology, sexual concerns are widely recognized as clinically important yet frequently under-assessed in routine care, particularly when clinical encounters are dominated by disease monitoring and treatment decisions [ 4 ]. MM-specific disease burden including pain, fatigue, peripheral neuropathy, and hormonal disruption from anemia, steroids, and renal impairment may compound age-related sexual dysfunction through multiple pathways, yet structured data in this population remain limited [ 3 , 5 ].

Several pathophysiological mechanisms plausibly underlie sexual dysfunction in MM, including bone pain limiting physical activity, fatigue reducing libido, treatment-related peripheral neuropathy affecting sexual comfort and sensation, and hypogonadism arising from the interplay of chronic anemia, corticosteroids, and renal disease [ 2 , 6 , 7 ]. Despite these clinically relevant links, sexual health remains inconsistently assessed in MM practice, barriers include limited clinic time, patient reluctance, and the absence of a validated MM-specific assessment tool [ 3 – 5 , 8 ].

To address these gaps, the current study used an anonymous questionnaire administered to patients with MM aiming to describe the frequency and types of patient-reported sexual dysfunction and intimacy concerns in MM, assess perceived changes before MM diagnosis versus at the time of survey completion, and characterize patients’ interest in supportive resources and services. This work is intended to inform more patient-centered supportive care in hematology clinics and to provide a foundation for future research and targeted interventions.

Methods

Study Design

This was an observational, cross-sectional, anonymous questionnaire study designed as a prevalence and needs assessment of sexuality and intimacy concerns among patients with MM.

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 No: BNZ-24-0064). Written informed consent was waived due to the anonymous nature of the questionnaire. Participants were informed that completion of the questionnaire implied consent to participate. No identifying information was collected.

Study Population

Participants were recruited from Israeli hematology services at Bnai Zion Medical Center, Soroka Medical Center, and Kaplan Medical Center, as well as from the patient advocacy AMEN – The Israeli Association of Myeloma Patients. Eligible participants were adults aged ≥18 years with a diagnosis of MM made between January 2015 and May 2024 and were able to complete the questionnaire in Hebrew. No exclusion criteria were applied.

Questionnaire and Data Collection

Data were collected using an anonymous questionnaire in Hebrew adapted from a validated survey assessing reproductive health issues and sexual dysfunction in men and women with cancer. The instrument incorporates items originally described and used in the context of Parkinson’s disease [ 9 , 10 ]. The questionnaire included domains addressing: sociodemographic characteristics, relationship status and sexual activity, sexual dysfunction concerns, and needs and preferences for counseling/support services. MM-specific items were added to capture symptom-related barriers to intimacy (pain, weakness/fatigue, bleeding concerns, fracture concerns, and neuropathy-related concerns), rated on a 1–5 Likert scale. The survey was distributed both in person and electronically via Google Forms (online suppl. 1; for all online suppl. material, see https://doi.org/10.1159/000553645 ).

Outcomes

The primary endpoint was the perceived change in patient-reported sexual dysfunction and intimacy concerns with the diagnosis of MM, measured by paired comparison of prevalence of sexual issues before MM diagnosis and at survey completion as reported by patients. Outcomes assessed included erectile dysfunction and premature ejaculation (men), low desire, vaginal dryness during intercourse (dyspareunia) (women), arousal difficulty, orgasm difficulty, pain with intercourse, low confidence, and difficulty moving during intercourse (all respondents). These were dichotomous (yes/no) questions with respondents reporting onset before or after MM diagnosis. Subanalyses of the impact of sociodemographic and clinical characteristics were evaluated by multivariable analysis. Secondary endpoints included: characterization of MM-specific sexuality concerns, reasons for sexual inactivity, and patients’ interest in supportive resources and services, evaluated by Likert-type willingness to use different counseling/services (1 = not at all, 5 = definitely), separately for services available free of charge and with payment.

Sample Size Calculation

As the objective was exploratory, the sample size was determined based on the precision of a single-proportion estimate rather than formal hypothesis testing. Assuming a two-sided 95% confidence interval (CI) and a conservative prevalence estimate, a sample size of 30 participants yields an expected margin of error of approximately ±18%. This level of precision was considered sufficient to generate an initial characterization of unmet needs in this understudied domain and to inform the design of future, adequately powered studies.

Statistical Analysis

Analyses were performed using IBM SPSS Statistics version 22. Categorical variables were summarized as counts and percentages, and continuous variables as mean ± standard deviation (SD) or median with interquartile range (IQR), as appropriate. Paired comparisons of outcome prevalence before MM diagnosis versus at survey completion were performed with McNemar test for categorical variables. All reported p values are nominal and unadjusted for multiple comparisons; given the exploratory aim and the number of domains compared, they should be interpreted cautiously and as hypothesis-generating rather than confirmatory. Multivariable logistic regression was used to evaluate associations between baseline characteristics and binary outcomes, with results reported as odds ratios (OR) with 95% CI. Because of the small sample size, the limited number of events, and substantial missingness in the sex-specific items, these regression models are statistically underpowered and potentially unstable; they were therefore regarded as exploratory and are reported only to screen for candidate associations, not to provide stable effect estimates. All tests were two-sided and a p < 0.05 was considered statistically significant. Missing data were handled using available-case summaries for descriptives and complete-case analyses for inferential/regression models, no imputation was performed.

Results

Baseline Characteristics

A total of 53 patients completed the survey. Most participants were older than 60 years (62%), were married or partnered (79%), and had children (91%). The mean time from MM diagnosis was 3.83 years (SD 3.41). Common comorbidities included hypertension (36%) and diabetes mellitus (19%). Regarding MM therapy exposure, most had received proteasome inhibitors (81%), steroids (68%), and immunomodulatory agents (66%) and approximately half had received daratumumab (51%). Sex classification was available for a subset of respondents based on the sex-specific section of the questionnaire. Among those with interpretable responses, 12 (35%) were classified as women and 22 (65%) as men ( Table 1 ).

Table 1. Baseline demographic and clinical characteristics of patients with MM Characteristic
n (%) or mean (SD) Age group  41–50 years 5 (9.4)  51–60 years 15 (28)  61–70 years 17 (32)  >70 years 16 (30) Sex (among those classifiable) – female 12 (35) Relationship status  Single 2 (3.8)  Married/partnered 42 (79)  Divorced/separated 6 (11)  Widowed 3 (5.7) Education  Elementary 1 (1.9)  High school 24 (45)  Academic 23 (43) Number of children  0 3 (5.7)  1–3 41 (77)  4+ 7 (13) Comorbidities  None 24 (45)  Hypertension 19 (36)  Diabetes mellitus 10 (19)  Ischemic heart disease 4 (7.5)  Chronic kidney disease/renal failure 5 (9.4)  Other cancer (active/past) 4 (7.5)  Depression 2 (3.8) Time from MM diagnosis, mean (SD), years 3.83 (3.41) MM treatments – ever received  Proteasome inhibitors 43 (81)  Immunomodulatory agents 35 (66)  Daratumumab 27 (51)  Steroids 36 (68)  Bispecific antibody 1 (1.9)  CAR-T-cell therapy 2 (3.8) MM, multiple myeloma.

Baseline demographic and clinical characteristics of patients with MM

MM, multiple myeloma.

Sexual Dysfunction and Intimacy Concerns

Frequencies of sexual dysfunction domains before MM diagnosis compared with at survey completion are shown in Figure 1 . Because McNemar test requires complete paired data, each comparison was restricted to respondents who answered the same item for both time points; the resulting denominators therefore differ slightly across domains and reflect available paired observations rather than the full cohort. In men, the proportion reporting difficulties was higher at survey completion (after MM diagnosis) across all domains; erectile dysfunction reached nominal statistical significance, increasing from 3/19 (16%) to 10/19 (53%) ( p = 0.016 by exact McNemar test), while the remaining domains did not reach significance ( Fig. 1 a). In women, low/no desire showed an increase from before diagnosis to survey completion, rising from 3/14 (21%) to 10/14 (71%) among the 14 women with complete paired responses for this item (nominal p = 0.016 by exact McNemar test). No other domain in women reached nominal statistical significance. Given the very small numbers of paired observations and the absence of correction for multiple comparisons, both significant findings (low/no desire in women and erectile dysfunction in men) should be regarded as exploratory and interpreted with caution ( Fig. 1 b). Multivariable logistic regression did not identify any patient sociodemographic or clinical characteristic significantly associated with sexual dysfunction, either before diagnosis or at survey completion; however, these models were underpowered and are reported as exploratory only.

Frequencies of sexual dysfunction domains before MM diagnosis versus at survey completion: in men ( a ) and women ( b ). Exact McNemar test (paired); * p < 0.05, nominal and unadjusted for multiple comparisons. Before MM diagnosis, at survey completion.

Reasons for Sexual Inactivity

The most commonly reported reasons for sexual inactivity were lack of desire or passion for sex ( n = 11), not currently having a partner ( n = 10), and erectile dysfunction or lack of enjoyment ( n = 10). Additional reasons included not feeling sexually attractive ( n = 5), sex becoming accompanied by discomfort or pain ( n = 3), and partner sexual dysfunction ( n = 2) ( Fig. 2 ). Overall, 27 (51%) respondents reported being sexually active before MM diagnosis compared with 25 (47%) at the time of survey completion, while 1 patient did not answer this question. The reasons summarized in Figure 2 refer to the 25 patients who reported being sexually inactive at survey completion.

Reasons for not being sexually active among patients with MM.

Support Needs and Preferred Services

Services that participants reported they may use in the coming year are shown in Figure 3 , separated by willingness to use services only if free vs. willingness to use services even with payment. For each service, respondents indicated the strongest level of willingness they endorsed, and the 2 categories in Figure 3 were therefore constructed to be mutually exclusive: “willing to pay” comprises patients who indicated they would use the service even if it required payment, while “free only” comprises patients who would use it only if provided free of charge. Patients who endorsed willingness to pay were classified in the “willing to pay” category only and were not also counted as “free only,” so the 2 counts do not overlap. The reported total for each service is the sum of these 2 nonoverlapping groups and represents all patients expressing any interest in that service. Interest was the highest for complementary medicine therapy for sexual dysfunction (free-only n = 17, willing to pay n = 10; total 27), followed by consultation with a hematologist regarding sexual dysfunction (free-only n = 11; willing to pay n = 10; total 21) and sexual counseling services (free-only n = 15; willing to pay n = 6; total 21). Consultation with a mental health professional was also frequently endorsed (free-only n = 13; willing to pay n = 7; total 20). A support group for patients with sexual dysfunction was endorsed by 16 participants (free-only n = 8; willing to pay n = 8).

Supportive services that participants reported they may use in the coming year. Blue represent ”free only” and orange represent “paid.”

MM-Related Fears Affecting Sexuality and Intimacy

MM-related fears that could affect sexual activity and intimacy were common ( Fig. 4 ). The most frequently endorsed fears (score ≥2, indicating at least “sometimes”) were fear of neuropathy (19/53, 36%) and fear of weakness/fatigue (18/53, 34%).

MM-related fears affecting sexual activity and intimacy. Score ≥2 on a 1–5 Likert scale (1 = not at all, 5 = very much) .

Discussion

This cross-sectional anonymous survey provides an initial characterization of sexuality and intimacy needs among patients with MM. Sexual dysfunction is common in the general adult population, with prevalence increasing substantially with age. In a nationally representative US survey of adults aged 57–85 years, approximately half of sexually active participants reported at least one bothersome sexual problem [ 11 ]. In our MM cohort, where 62% were older than 60 years, observed dysfunction frequencies were broadly consistent with age-related population estimates, suggesting that MM and its treatment impose additional burden beyond aging alone. This is consistent with existing literature: a systematic review of hematological malignancies reported sexual dysfunction prevalence of 18–50% across diagnoses [ 8 ], and a recent review similarly highlighted the contribution of physiological factors (fatigue, neuropathy, gonadal dysfunction), psychological distress, and treatment toxicities [ 12 ].

Most sexual dysfunction domains showed numerical increases from before MM diagnosis to survey completion, and 2 reached nominal statistical significance: low/no desire in women (21%–71%; p = 0.016) and erectile dysfunction in men (16%–53%; p = 0.016). The lack of significance for the remaining domains likely reflects limited statistical power rather than a true absence of change, and all results should be considered exploratory and hypothesis-generating. Additionally, lower response rates among women in studies on sexual difficulties are a recognized phenomenon [ 10 ], and the present findings may therefore reflect only a portion of the true burden. These findings warrant replication in larger cohorts.

A novel finding is the characterization of MM-specific fears as potentially addressable barriers to intimacy. We use “potentially addressable” deliberately: although these concerns are clinically meaningful and plausibly amenable to intervention, the present data do not establish that they act independently of other factors or that they respond to specific interventions, as neither independence nor modifiability was formally tested. Fear of neuropathy, weakness/fatigue, and bone pain were each endorsed by approximately one-third of respondents; fear of fractures by about one-quarter; fear of bleeding was uncommon. In an international survey, patients with MM similarly described concerns related to fractures, infection risk, and vaginal bleeding, yet only a minority had received sexual health guidance [ 5 ]. The present pattern plausibly reflects MM’s distinct disease profile: 81% of our participants had received proteasome inhibitors, which cause peripheral neuropathy that can manifest as dyspareunia in women and genital hypersensitivity in both sexes [ 13 , 14 ]. Autonomic neuropathy may also directly impair erectile function [ 14 ]. The significant increase in erectile dysfunction we observed in men (16%–53%) is consistent with these mechanisms, although the small paired sample and exploratory design preclude attributing it specifically to treatment-related neuropathy. Clinicians aware of these manifestations are better placed to ask targeted questions and normalize them as treatment-related phenomena. Critically, unlike traditional sexual dysfunction domains (desire, arousal, and orgasm), these MM-specific fears may drive avoidance of intimacy even when physiological function is preserved. This extends the field beyond conventional assessment categories and supports the case for developing an MM-specific evaluation tool that captures these disease-specific concerns alongside conventional domains.

The most commonly reported reasons for sexual inactivity (decreased desire, absence of a partner, and erectile dysfunction or lack of enjoyment) underscore that sexual health in MM is not purely physiological. Psychosocial factors, relationship dynamics, and emotional context play a substantial role. Prior literature consistently recommends framing sexual difficulties as a couple’s issue rather than a purely individual one, since partner-inclusive approaches are more effective and partners are independently affected [ 9 , 10 ]. Supportive services in MM should therefore explicitly offer couple-oriented counselling options alongside individual consultation. Pain as a contributor is separately clinically actionable: guidance on positioning, pain control, and expectations counselling can be integrated into routine care. Notably, direct patient self-report of sexual concerns has been shown to align well with responses to validated questionnaires [ 10 ], suggesting that a brief, focused screening conversation feasible even within a busy hematology clinic, may be sufficient to identify patients in need of referral, without requiring lengthy formal assessment.

Patient interest in supportive services was substantial: complementary medicine (27/53), hematologist consultation (21/53), and sexual counselling (21/53) were most frequently endorsed, with meaningful interest also in mental health consultation and peer support. The high interest in complementary medicine is consistent with the broader cancer survivorship literature, which shows growing patient interest in integrative approaches [ 15 ]. However, robust disease-specific evidence for complementary interventions targeting sexual dysfunction in hematologic malignancies remains limited and should be further evaluated. Importantly, sexual dysfunction, sexual inactivity, and interest in supportive services represent related but distinct constructs: a patient may report reduced sexual function without seeking treatment, while another may express high interest in supportive services without meeting classical dysfunction criteria. This distinction is supported by prior needs-assessment studies in which willingness to seek help was not directly predicted by dysfunction prevalence but was shaped by psychological distress, relational concerns, and patient preferences [ 9 , 10 ]. The clinical case for sexual health services in MM therefore cannot rest on dysfunction rates alone.

The distinction between willingness to use free services versus services requiring payment conveys 2 parallel signals: first, genuine demand exists, since a meaningful proportion would engage even at personal cost; second, cost and insurance coverage are real-world barriers, as uptake was consistently higher when services were free. This pattern mirrors findings from oncology and chronic disease needs-assessment studies [ 9 , 10 ] and underscores that building accessible services requires attention to economic models, not only clinical content.

Despite this clear patient interest, sexual health remains insufficiently addressed in routine clinical care, a gap documented not only in haemato-oncology but also across chronic disease settings, including neurological conditions where high patient need and willingness to seek help coexist with rarely initiated clinical discussion [ 4 , 10 ]. Positioning our findings within this broader pattern strengthens the argument that systematic under-addressing of sexual health is a cross-disease phenomenon in survivorship and supportive care, not specific to hematology. The ASCO clinical practice guideline recommends that healthcare team members proactively initiate sexual health discussions at diagnosis and reassess periodically [ 4 ], and our data reinforce this imperative: patient-initiated discussion alone is unlikely to capture the full extent of unmet need.

Taken together, our findings go beyond describing a problem, like the needs-assessment study by Huyghe et al. [ 9 ], and provide an empirical rationale for developing a structured, multidisciplinary sexual health pathway within MM care. The demonstrated patient interest across service modalities including hematologist consultation, sexual counselling, mental health support, and complementary medicine maps directly onto the components of such a pathway. Future implementation efforts should prioritize proactive screening, accessible referral systems, partner-inclusive services, and affordable access models, addressing both the physiological and psychosocial dimensions of sexual health that this study has shown to be clinically relevant.

Limitations

Several limitations should be acknowledged. First, the cross-sectional design with retrospective recall of pre-diagnosis sexual function is vulnerable to recall bias and prevents causal inference. Second, the convenience sampling strategy and anonymous voluntary participation may introduce selection bias. Third, missingness was substantial for sex-specific items, resulting in varying denominators and small effective sample sizes which limits statistical power. Consequently, the multivariable logistic-regression models, built on a small sample with few outcome events, are likely underpowered and unstable; their results should be regarded as exploratory and hypothesis-generating only, and the absence of significant associations does not exclude clinically relevant effects. All p values are nominal and unadjusted for multiple comparisons, so the 2 significant findings (low/no desire in women and erectile dysfunction in men) require confirmation in larger studies. Fourth, sex classification was inferred from questionnaire responses rather than collected as a standalone demographic variable; 19 of 53 respondents (36%) could not be classified, restricting the generalizability of sex-stratified analyses. Fifth, the questionnaire, although adapted from previously used instruments, has not been formally validated as a myeloma-specific tool. Sixth, important confounders including baseline sexual health, partner health, depression, concomitant medications (e.g., antidepressants, opioids), and endocrine status were not comprehensively captured. Finally, the study was conducted in a single country and language, which may limit generalizability.

Conclusion

Sexual dysfunction, intimacy concerns, and MM-specific fears are prevalent among patients with MM and represent distinct clinical constructs while the need for supportive services cannot be inferred from dysfunction rates alone. MM-specific fears (fatigue, pain, neuropathy) are potentially addressable barriers to intimacy that extend beyond traditional dysfunction domains, supporting the need for disease-specific assessment tools. Patient interest in supportive services, especially complementary medicine, is substantial though cost remains a real-world barrier. These findings provide an empirical rationale for developing structured, multidisciplinary, and economically accessible sexual health pathways within MM clinical practice.

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-24-0064). 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 there were no conflict of interest.

Funding Sources

The research received no funding.

Author Contributions

Ilana Levy Yurkovski, Sharon Peleg-Nesher, and Natalia Kreiniz contributed to constructing the study design, patient recruitment, and article writing and reviewing. Gabriel Pazooky, Miri Zektser, Ekaterina Votinov, Ekaterina Frosinsky, Iuliana Vaxman, Varda Shoam, and Tamar Tadmor contributed to patient recruitment, and article writing and reviewing.

Funding Statement

The research received no funding.

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.

References

Associated Data

Supplementary Materials

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.