By Scott Campbell, Director, Patient Advocacy & Engagement Oncology, Takeda
This article originally appeared in Clinical Leader on April 16, 2020
Multiple myeloma is a complex blood cancer with many treatment pathways, including different medications, stem cell transplants, and potentially enrolling in a clinical trial. To a patient, the possible treatment pathways can seem endless.
One thing that unites everyone impacted by multiple myeloma is a shared objective: achieving the best outcomes for each person with multiple myeloma. Unfortunately, miscommunication between patients and physicians can be a barrier to understanding and achieving shared treatment goals, ultimately impeding patient care.
To gain insight on the crucial dialogue between patients and their doctors when discussing treatment goals, expectations, and long-term outcomes, Takeda Oncology developed the Multiple Myeloma Patient-Physician Dialogue Index, the first publicly available report on multiple myeloma patient-physician communication dynamics. The index was informed by a survey of 51 people with multiple myeloma and 151 hematologists/oncologists in the United States. The survey — which was commissioned by Takeda Oncology and conducted by The Harris Poll — revealed the disconnects that may hinder the open dialogue necessary to achieving ideal treatment outcomes.
While each patient’s treatment journey is unique, the Multiple Myeloma Patient-Physician Dialogue Index revealed four key findings that may help improve patient-physician dialogue:
1. Help set expectations around treatment planning.
It is important that patients and their physicians are aligned on how they will work together to achieve individualized treatment goals. Setting expectations can help ensure both parties are aware of each other’s priorities and preferences.
Some of the key outcomes included in the Multiple Myeloma Patient-Physician Dialogue Index revealed a disconnect regarding patient involvement in treatment decisions. Most patients and physicians agreed it is important for the patient to play an active role in treatment decisions; however, 87 percent of physicians thought most of their patients would prefer that the course of treatment be dictated by the physician. This suggests that having discussions about a patient’s expected role in treatment planning could help improve their overall satisfaction with their care.
2. Empower patients through information.
For people diagnosed with multiple myeloma, there can be an abundance of information, which can lead to confusion about next steps in a treatment plan. Information about the multitude of available medications, clinical trial opportunities, and the latest treatment trends is imperative for patients and physicians to align on a path forward and give patients the tools to engage in their treatment journeys. Seven out of 10 patients surveyed said access to various sources of information made them feel empowered, though about half also reported challenges in identifying which resources are trustworthy. Many patients show a strong desire to understand their disease and say it is important for their physician to recommend resources to help educate them on matters related to their care. These findings demonstrate that patients want information about multiple myeloma, as well as guidance from their physician to help them feel empowered.
On the contrary, the data within the Multiple Myeloma Patient-Physician Dialogue Index revealed many physicians had to discern what — and how much — information is appropriate to share during any given office visit without knowing patients’ specific concerns. This demonstrates a clear disconnect between the two groups about patients’ interest in learning more about their disease and treatment options. Doctors have an opportunity to empower those living with multiple myeloma by pointing them toward resources that they can review in a time and space suitable to their preferences.
Sharing information about available treatment options and their unique considerations may also ensure that patients understand the full range of available paths forward and help them make informed decisions with the support of their physician.
3. Ensure patients understand the available treatment options.
From early days in medical school and throughout their careers, many physicians gain experience with several multiple myeloma treatment options — including chemotherapy, proteasome inhibitors, immunomodulatory imide drugs, stem cell transplant, and myriad combinations of these options. Subsequently, physicians possess a deep trove of information based on their learnings — be it through treatments they’ve administered in a hospital or a clinical trial they’ve investigated — that can be tapped to help improve patients’ understanding.
Eighty-six percent of patients surveyed said their physician could help them manage their multiple myeloma; specifically, 59 percent said their physician helped them better understand their prognosis/what lies ahead, and 51 percent said their physician could provide them with materials about their disease/treatment. Evidently, people with multiple myeloma know that their physicians have prior experience treating the disease and are looking to them to help make informed decisions.
4. Continue to build upon the strong relationship.
Nearly all patients surveyed said they were comfortable discussing treatment options available to them with their specialists and overall, they rely on their physician to help make treatment decisions more than any other source. Additionally, nearly all surveyed patients agreed their physicians put them at ease and provided understandable explanations during office visits.
These statistics are encouraging and reinforce physicians as one of the key sources of information and support for a person living with multiple myeloma. Patients without prior knowledge of multiple myeloma therapies, such as maintenance therapy or clinical trial enrollment opportunities, rely on their physicians to guide them.
The findings also underscore the importance of fostering positive patient-physician relationships. Knowing physicians and patients both lead incredibly busy lives, this is no small feat. However, making time to encourage transparent conversations and sharing trusted resources to educate patients may be helpful in improving communication.
Empowered Patients Are Engaged Patients
A simple conversation can often be life-changing. The goal of sharing these findings is to shed light on the mindset of patients, physicians, caretakers, and advocates, to help raise awareness for how open communication may lead to more robust conversations, and allow people with multiple myeloma to fully understand their treatment journey. This improved understanding may help patients receive the care they need.
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 they are more likely to work in partnership with their physician toward shared treatment goals.
Our hope is that this will lead to better outcomes for people living with multiple myeloma, the highest priority for the entire multiple myeloma community.