The Information Patients Receive During Multiple Myeloma Treatment May Differ From What They Want to Know

There may be discrepancies in the types of information patients want and the information they receive when multiple myeloma treatment decisions are made, a recent study found.

There may be discrepancies between the information patients with multiple myeloma receive throughout treatment and the information they feel is important during the treatment decision-making process, according to a recent study published in Clinical Lymphoma Myeloma and Leukemia.

Multiple myeloma is a form of cancer that often relapses, with patients undergoing multiple lines of therapy in most cases. The study aimed to explore patient confidence and information preferences throughout treatment decision-making through a multinational survey that was co-developed by Myeloma Patients Europe and distributed in 12 countries across Europe, as well as in Israel.

Eligible patients self-reported a multiple myeloma diagnosis and reported that they remembered the decision-making process at the start of their latest line of treatment. Of 1559 patients, 1081 (69%) submitted complete responses. Of these patients, 57% had a treatment decision made within the previous year, and the median patient age range was 53-64 years.

Most patients could report on how many lines of treatment they had received, with 40% in the first line of therapy and 36% in the third line or later. Most respondents (72%) were treated in a hematology clinic and saw a hematologist, and half of the patients had access to a nurse specialist. The majority of patients (57%) reported being “very involved” in their last treatment decision, 28% reported being “somewhat involved,” and 13% reported that they were “not involved at all” in their latest treatment decision. Most patients reported having “very good” or “good” levels of communication very good or good and clinical relationships with their treating physicians.

Patients most frequently reported receiving information on location of treatment, mode of administration, treatment frequency, and common side effects (85%, 83%, 78%, and 72%, respectively) during their most recent treatment decision. The least received types of information included information on health care provider costs, how long until multiple myeloma returns, and overall survival benefit (20%, 31%, and 28%, respectively).

The types of information patients most frequently considered “very important” were overall survival benefit (63%), likelihood that a treatment would work (59%), how safe the treatment is (57%), and quality of life after treatment (57%). Future treatment options, how long until multiple myeloma returns, and common side effects were also considered to be very important from the patient perspective (56%, 56%, and 51%, respectively). While few patients felt any information types were “unimportant,” mode of administration, location of treatment, and health care provider costs were most frequently deemed unimportant by patients.

More than half (54%) of patients reported being “very confident” in the latest treatment decision, and 37% reported being “somewhat confident.” Just 5% of patients of reported that they were “not confident.”

For most patients, their primary physician treating them for multiple myeloma was also their main source for all types of information. Nurses or nurse specialists most often provided information regarding their availability for support and mode of administration, the patients reported. Multiple myeloma organizations and support groups also provided information on availability of support, as well as quality of life after treatment.

Patients reported a desire for additional information at subsequent treatment decisions, including information surrounding future treatment options, treatment efficacy, and quality-of-life implications.

Although more than half of respondents reported feeling very confident in the most recent treatment decision in their course of therapy, discrepancies were identified that provide opportunities for improvement.

“Addressing the discrepancies between information that patients report receiving and information they consider important, may enhance their confidence in decision-making and ultimately improve treatment outcomes,” the authors concluded.


Mellqvist UH, Steinmetz HT, Perrot A, et al. Patient confidence and information preferences during the treatment decision-making process: results from a large multiple myeloma patient survey across 12 countries in Europe and Israel. Clin Lymphoma Myeloma Leuk. Published online March 2, 2023. doi:10.1016/j.clml.2023.02.010

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