Analysis Reveals Substantial Communications Gap in Planning Patients’ Treatment Journeys

Research conducted by The Harris Poll, commissioned by Takeda Oncology

March 2020

Multiple Myeloma Patient-Physician Dialogue Index

The Current Landscape of Multiple Myeloma

Patient-Physician Dialogue For people diagnosed with multiple myeloma, there can be an abundance of information, which can

lead to confusion around next steps in their diagnosis and treatment plan. Particularly, there appears

to be a disconnect between what they understand and what they want to know about the treatment

journey that lies ahead. This knowledge gap can manifest feelings of anxiety and uncertainty in people

with multiple myeloma, which is counterproductive to having open dialogues with their physician on

treatment decisions.

In September 2019, Takeda Oncology, in partnership with The Harris Poll, conducted a survey of

51 people with multiple myeloma1 and 151 hematologists/oncologists2 in the United States to gain

insight on the crucial dialogue between patients and their physicians when discussing treatment

plans, expectations and long-term outcomes. This index is the first publicly available report on

multiple myeloma patient-physician communication dynamics. The following analysis shows

physicians and patients often agree on best practices for treatment discussions and raises

awareness for the miscommunications and disconnects that can hinder open dialogue.

1People with multiple myeloma were defined as adults in the U.S. who had ever received a targeted therapy combination, immunotherapy or chemotherapy to treat their multiple myeloma, and were at least somewhat familiar with maintenance therapy.

2Physicians were those in the U.S. who specialize in hematology/oncology and see at least 15 active multiple myeloma patients each year.

1

Setting Expectations Around Treatment

Planning and Outcomes

Physicians saw the patient as a valued partner in making treatment decisions – and patients also

viewed themselves this way. Most patients surveyed said it was important for them to be an active

participant in maintenance therapy discussions with their physician and a majority of physicians also

wished patients were more proactive in treatment discussions.

However, even though physicians wished patients were more proactive and patients themselves felt

it was important to play an active role in treatment decisions, most physicians thought most of their

patients would prefer that the course of treatment be dictated by the physician, rather than making

the decision together. This misunderstanding may be a barrier to further conversations around

treatment options despite the fact that 98% of patients said they were comfortable discussing

treatment options available to them with their physician.

As evidenced by these data, a deeper discussion between physicians and patients around

the full breadth of treatment options and their respective treatment goals might set patients

up for greater success.

81% of physicians shared that they wished patients were more proactive in treatment discussions, but 87% believed their patients preferred that the physician tell them what treatment course to pursue rather than making a treatment decision together.

98% of patients surveyed were comfortable discussing treatment options available to them with their physician.

100% of patients surveyed agreed that it was important for physicians to set the right expectations about outcomes of maintenance therapy, and 90% said it was important for them to be an active participant in maintenance therapy discussions with their physician.

90% of physicians agreed it was important for patients to be active participants in maintenance therapy discussions.

2

Patients Wanted More Information About

Their Treatment Options

The survey results showed that a major opportunity for physicians and patients to improve

communication when discussing treatment options was on what – and how much –

information should be shared over the course of treatment planning.

Multiple myeloma patients wanted to know more about their treatment options, as more than half

reported a desire to have more information about maintenance therapy that might help influence

their decisions, on topics such as the long-term side effects of maintenance therapy and the risk

of relapse without maintenance therapy.

However, without knowing these specific concerns from patients, physicians had to discern what –

and how much – information was appropriate to share during any given office visit. In fact, nearly one

in three shared that they do not most commonly discuss maintenance therapy with patients until after

completion of the first drug therapy treatment. Of those physicians, nearly half said they chose this

timing because they were unsure if the patient would be ready to fully understand these options earlier,

and 46% cited their desire to avoid overwhelming the patient with information about treatments that

may be needed in the future.

As a result, patients often did not have information about maintenance therapy that could help inform

their active participation in discussions about their treatment and about maintenance therapy. Lack

of knowledge about these topics can hinder a patient’s treatment journey. If patients do not have

resources to learn more about their disease and treatment options, they may be less likely to ask

questions that signal to the physician that they’re eager to take a more active role in discussions

about their treatment.

Among hematologists/oncologists who reported they do not most commonly discuss maintenance therapy during early treatment stages with patients prior or during first drug treatment, 49% delayed because they thought patients were not ready to fully understand what maintenance therapy is, and 46% do not want to overwhelm the patient with information about treatments that may be needed in the future.

75% of patients surveyed wished there were more information resources specifically for patients considering maintenance therapy:

Could use more information about long-term side effects of maintenance therapy.

Could use more information about the risk of relapse without maintenance therapy.

Could use more information about the benefits of therapy.

3

Patients Felt Empowered with

Information and Resources

Accurate and validated information may help inform discussions patients have with their physicians

and increase engagement in dialogue. Seven out of 10 patients (71%) surveyed said access to various

information resources made them feel empowered. Most often, patients relied on the internet

(specifically multiple myeloma websites [94%] and general search engines [92%] to find information

about multiple myeloma). However, about half of patients (51%) surveyed reported challenges in

identifying which information sources are trustworthy. That said, patients agreed their physician put

them at ease (100%) and provided understandable explanations (96%).

Eighty-six percent of patients reported that they rely on their physician to help make decisions

about multiple myeloma treatment, more than any other source. Additionally, nearly three out of

four patients shared that they do not have difficulty staying fully engaged during visits with

their physicians.

Sharing resources and information and contextualizing it appropriately may help physicians keep

their patients engaged beyond the appointment and ensure they are empowered during

treatment discussions.

Maximizing the Patient-Physician Dialogue

The purpose of this survey and sharing these results is to raise awareness on misunderstandings that

currently exist between people with multiple myeloma and their physicians about their treatment

journey. Both parties wanted patients to be active participants in discussions about treatment. To

achieve this common goal, physicians can commit to fostering open and transparent dialogue during

patient visits and can share trusted resources to educate patients about their treatment options.

The most common challenges patients surveyed faced in finding the information they needed about multiple myeloma were not knowing which sources are trustworthy (51%) and having so much available information it was sometimes difficult to find exactly what they are looking for (45%).

surveyed do not have difficulty staying fully engaged during visits with their physicians.

surveyed say their physician could help them manage their multiple myeloma; specifically, 59% said their physician helped them better understand their prognosis / what lies ahead, and 51% said their physician could provide them with materials about their disease / treatment.

78% of Patients

86% of Patients

4

Patient organizations such as Myeloma Crowd, Multiple Myeloma Research Foundation, International Myeloma Foundation and Leukemia and Lymphoma Society have robust information pages designed for patients as well as resources and support to help navigate their journey.3

Many physicians offer materials designed to help patients prepare for office visits, including instructional videos, pamphlets and infographics. Preparing for visits can help patients make the most of their time and keep their priorities at the forefront of conversations.

Online platforms like My Mentor Connections, Myeloma Coach and First Connection, among others, that allow patients to connect with each other to share experiences.3

All trademarks are the property of their respective owners.

© 2020 Millennium Pharmaceuticals, Inc., a wholly owned subsidiary of Takeda Pharmaceutical Company Limited. All rights reserved.

Each patient’s multiple myeloma treatment journey is unique, and no single resource will have all the

answers. The key to a deepened engagement in treatment decision-making is an ongoing cycle of

education combined with honest and robust dialogue. Empowered patients are engaged patients,

and more likely to work in partnership with their physician toward shared treatment goals.

3By listing these resources, Takeda Oncology is not endorsing any particular service or group. They are provided here for informational purposes and are not meant to replace healthcare providers’ medical advice

About the ResearchThe survey was conducted online among multiple myeloma patients and hematologist/oncologists within the United

States by The Harris Poll on behalf of Takeda. The patient survey was conducted from August 5 to September 12, 2019

among 51 U.S. adults ages 18 and older who had been diagnosed with multiple myeloma, had ever received targeted

therapy combination, immunotherapy, or chemotherapy to treat their multiple myeloma, and were at least somewhat

familiar with maintenance therapy. Patients were identified and recruited directly by treating physicians through Toluna’s

Point of Care Rare Patient Recruiting. Pre-screened respondents were provided a custom, password protected link and

invited to a secure website to be fully screened, and if qualified, to complete an online self-administered questionnaire

via a personal device. Patient results were not weighted and are only representative of those who participated in the

research. The physician survey was conducted from August 5 to September 13, 2019 among 151 U.S. physicians ages 18

and older who specialize in hematology/oncology, are duly licensed in the state where they practice, and see at least 15

active multiple myeloma patients each year. Physicians practicing in Vermont or Maine were excluded from the research.

Physician results were weighted for years in practice by gender and region to align them with their actual proportions

in the population.

It is important that patients feel engaged, empowered and informed during their visits to take control

of their care, and having a base of knowledge of where to turn can help patients feel confident when

starting these treatment discussions with their physician. Patients may benefit from a discussion with

their physicians specifically about the desire to be involved in treatment decisions and can leverage a

variety of resources to prepare for these discussions, including:

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