Patient Perceptions Regarding Multiple Myeloma and Its Treatment: Qualitative Evidence from Interviews with Patients in the United Kingdom, France, and Germany

Abstract

Background The current standard of care for multiple myeloma requires several regimens of treatment, with patients experiencing high symptom burden and side effects, which negatively impact health-related quality of life (HRQoL). Thus, it is crucial to understand patient perceptions of multiple myeloma and how patients value different treatment options. Objective The purpose of this study was to conduct an exploratory investigation into concepts that could form attributes that influence treatment choices for patients with multiple myeloma and to identify trade-offs that patients are willing to make between treatment attributes. Methods In total, 30 patients with newly diagnosed or relapsed/refractory multiple myeloma from the UK, France, and Germany participated in semistructured interviews talking about their disease experience and symptoms, treatment benefits, treatment burden, perceived side effects, and benefit/risk trade-offs in treatment. The interview audio recordings were transcribed and analyzed using content analysis to identify treatment and disease aspects relevant to patients. Results Symptoms of fatigue and bone pain and treatment side effects of peripheral neuropathy, diarrhea, and constipation were cited by patients as the most disruptive to their HRQoL. Treatment duration was reported most frequently as a major treatment burden, and patients emphasized the importance of increased life expectancy as a treatment benefit. All patients showed good understanding of benefit/risk trade-offs in treatment, and some patients expressed a preference for more convenient modes of treatment administration. Conclusions Qualitative interviews identified key aspects of multiple myeloma treatment that are most important to patients. These findings will inform a wider patient-preferences study, which could improve treatment choice and HRQoL for patients with multiple myeloma.

Characterizing the Patient Journey in Multiple Myeloma: Qualitative Review

“…This study provides valuable and up-to-date information on patient experiences and perspectives regarding the impact of MM and its treatment. Our findings are consistent with recent publications investigating patient perceptions of MM and its treatment [28,48]; patients are affected by side effects and uncertainties in treatment benefits, resulting in psychological and physical burden [48], yet they value some aspects such as the convenience of at-home versus hospital administration [28]. Patient-reported information shared on social networking platforms is unsolicited, publicly available data that can provide insight on the priorities of both patients and caregivers that may not always be captured by more traditional research methods such as interviews or surveys [49].…”

“…Cognitive side effects, such as "chemo fog," losing their "train of thought," and struggling to retrieve information, were also prominent features of treatment experience with chemotherapy [3,26]. In the patient-reported information, a range of treatments were discussed, including chemotherapy ( Since the literature review was conducted, numerous articles have been published discussing patient experience with disease-modifying MM treatment; in these articles, the negative effects attributed to treatment are still being reported [27,28]. In an exploratory investigation into concepts that influenced treatment choices for patients with MM and that analyzed patients (N=30) receiving proteasome inhibitors (66.7%), immunomodulatory drugs (56.7%), chemotherapy (30%; bendamustine, cisplatin, cyclophosphamide, doxorubicin, etoposide, and melphalan), steroids (70%), and CD38 inhibitors (16.7%), peripheral neuropathy (90%) was the most reported symptom attributed to treatment, followed by diarrhea (83%) and cognitive impairment (83%) [28].…”

“…In an exploratory investigation into concepts that influenced treatment choices for patients with MM and that analyzed patients (N=30) receiving proteasome inhibitors (66.7%), immunomodulatory drugs (56.7%), chemotherapy (30%; bendamustine, cisplatin, cyclophosphamide, doxorubicin, etoposide, and melphalan), steroids (70%), and CD38 inhibitors (16.7%), peripheral neuropathy (90%) was the most reported symptom attributed to treatment, followed by diarrhea (83%) and cognitive impairment (83%) [28]. Patients also stated that there was an overlap between symptoms of MM and potential treatment side effects, meaning that they were sometimes unsure if symptoms were caused by treatment or MM [28]. A qualitative study by Nathwani et al [29] investigated adult patients with relapsed and refractory MM (RRMM) who had a life expectancy of ≥3 months and had at least one treatment regimen with a proteasome inhibitor and immunomodulator or a steroid in addition to either a CD38 monoclonal antibody or an alkylating agent.…”

“…Furthermore, social media data are limited by the availability of patient demographic and clinical characteristics. Age was not reported for all patients included in the study; therefore, it is unknown whether potential age-related aspects of patients' MM and treatment experience may have influenced some of the key themes that emerged from the patient-reported information [28,48].…”

The impact of COVID-19 on autologous stem cell transplantation in multiple myeloma: A single-centre, qualitative evaluation study

“…Healthcare professionals providing inadequate clinical information to MM patients were previously reported [34] and also emerged in our study. The benefits of adequate information provision are well described [35].…”