Balancing Treatment Intervals and Quality of Life in Multiple Myeloma Patients: Patient Perspectives and Recommendations
Authors: Fleischer Anna , Barakat Mohammad , Kadel Sofie-Katrin , Mersi Julia , Waldschmidt Johannes , Einsele Hermann , Kortüm K. Martin , Maatouk Imad , Rasche Leo 
Published: December 2024

Background: According to guidelines, patients with symptomatic multiple myeloma (MM) require continuous long-term treatment, starting at diagnosis and stopping in the refractory palliative setting. Although in the real world the onset of serious adverse events such as infectious complications or high-grade polyneuropathy, or simply a strong patient preference, often leads to some treatment-free intervals (TFIs), systematic studies or recommendations on de-escalation and treatment holidays are largely lacking. The advent of novel T-cell redirection therapies such as CAR-T and bispecific antibodies has brought this issue back to the table, as CAR-T offers for the first time a relevant treatment-free interval of up to several years, whereas bispecific antibodies represent a continuous treatment modality given until progression. Understanding patients' preferences regarding TFIs is crucial for tailoring treatment plans that align with their desires and needs, potentially enhancing adherence and overall outcomes.
This study aimed to explore MM patients' preferences for TFIs, identify barriers to attending frequent hospital appointments, and determine the most significant stressors during inpatient stays. By assessing these factors, the study seeks to inform patient-centered care approaches that could improve the overall treatment experience and quality of life for MM patients.
Methods: A mixed-methods survey was conducted over twelve months, involving 100 patients with MM at the University Hospital Würzburg. Data collection included both demographic and clinical information, alongside open questions and validated questionnaires to assess various biopsychosocial parameters influencing the perceived significance of TFIs. The assessment tools utilized were the Somatic Symptom Scale (SSS-8) for physical symptom burden, Distress-Thermometer (DT) for psychological distress, Patient Health Questionnaire 4 (PHQ-4) for depression and anxiety screening, EORTC QLQ-C30 for health-related quality of life, SSUK-8 for perceived social support, UCLA 3-item Loneliness Scale (UCLA 3) for perceived loneliness and social isolation, and the Questionnaire on Fear of Progression (PA-F-KF) for fear of disease progression.
Results: The survey revealed that a significant 49% of MM patients place an extremely high value (10/10 points on a rating scale) on having extended TFIs, especially between inpatient hospital stays, while only 9.1% rated them “not important” (0/10). No differences in this preference were found between demographic groups. Long TFIs allow patients to recover physically and mentally, engage in social activities, and maintain their quality of life. Patients emphasized the importance of spending time with family and friends and participating in regular activities like vacations and hobbies. Extended TFIs also reduce the mental burden of constant illness focus, providing autonomy and planning security. For outpatient treatments, 30.3% of patients rated long intervals as “very important,” while 16.2% viewed them as “not important.” Frequent outpatient visits were less disruptive but still posed a burden for patients with mobility issues or long travel distances. Regular monitoring was valued for providing reassurance and timely medical oversight. Only a minority of patients (7,0%) would accept a higher risk of relapse in favor of extended TFIs.
Conclusion: The results of this survey underscore the critical importance of considering patient preferences for TFIs in MM treatment plans. Long TFIs are highly valued by patients for their role in facilitating physical and mental recovery, social engagement, and maintaining a high quality of life. Addressing barriers such as mobility issues and long travel distances for outpatient visits, while ensuring regular monitoring for reassurance, is essential. By incorporating these patient-centered insights, healthcare providers can develop support systems and treatment strategies that align with the specific needs of MM patients, leading to more effective disease management and improved patient outcomes.