Strategies to assist with adverse event management and patient-led decision making

Thursday, 3 Dec 2020

Shared decision making and adverse event (AE) management are important for haematologists to consider in their day to day management of patients with multiple myeloma. As part of the Amgen Multiple Myeloma webinar series Dr Brian Durie, Chairman of the Board of the International Myeloma Foundation, International Myeloma Working Group and specialist at the Cedars-Sinai Medical Center and Dr Joseph Tariman, Associate Professor and Program Director for the Doctor of Nursing Practice NP Tracks at DePaul University in Chicago talk about why adopting these strategies as part of a treatment approach are so important in the MM space.

Management options for patients with MM

Dr Durie summarised the current approach to managing MM as, “we’ve seen so many new treatment options become available for relapsed MM, some of which are so successful they have shifted into the frontline setting.” Dr Durie noted he was, “lucky enough to be a principal investigator assessing triplet versus doublet therapy in newly diagnosed patients. While the efficacy profiles are important drivers of treatment choice, the adverse event profile is similarly important to consider and can be quite different amongst the treatment choices available.”

Dr Durie offered the following strategies to manage these differing AE profiles:

  • Be proactive in selecting the dose and making schedule adjustments depending on the individual needs of the patient
  • Be aware of the toxicities of new treatments as they may need specific supportive care.

“With a treatment like VRd you can adjust various aspects of the treatment,” explained Dr Durie, “from changing how many days are in the cycle, to the dosages of each drug. These adjustments can be made to suit the needs of the patient, for example a ‘lite’ or ‘ultra-lite’ regimen may be more suitable for an elderly patient as it allows recovery time in between dosing.”

What is shared decision making?

Dr Tariman outlined shared decision making (SDM) as “made up of four parts; it requires the participation at least two people (the patient and a healthcare professional), both parties must share information, both parties must take steps to build a consensus about preferred treatment and a mutual agreement between the patient and the healthcare professional must be reached on the treatment approach.” He went on to explain that “the patient and the provider are equal partners in this – the provider sharing what they know about the disease and the treatment options available and the patient sharing what they are feeling, have experienced and what they have concerns or fears about. Research I have conducted found that nearly all patients want a say in their treatment, and it is the responsibility of the oncology clinician to inform patients that their preferences and context could influence treatment decisions.”

Key drivers of SDM have been the increased healthcare consumerism, particularly in the USA, Canada, UK and Australia.1–5 The more patients pay for healthcare the more of a say they want to have in how it’s delivered. This coincides with the growing focus on patient-centred care.1–5

How shared decision making relates to MM

Dr Tariman described MM as “an incurable yet highly treatable disease. Multiple relapses are inevitable and the majority of care is in the outpatient setting. There is a lot of complex information, often delivered quite rapidly and patients are expected to engage in self-management of many complex processes, including management of AEs.” Because of this, he explained, “patients in the MM space are very well informed and have a lot of experience, with many of them having strong feelings about their treatment, what AEs they can handle and what they want to avoid.”

Managing AEs through shared decision making in MM

Because these patients often have a high level of experience of managing AEs, Dr Tariman recommended using them as the valuable resource that they are, “Always ask the patient about what they have experienced, how they managed it and what concerns them. You should always take this information into consideration when deciding on the next line of therapy. At the same time it’s important to know the different safety profiles of each treatment option and use that knowledge to match a treatment option to the history and concerns of the individual patient. This is where SDM is so important in the MM space – the best treatment option for any one patient can only be uncovered when there is an exchange of information between the patient, practitioner and oncology team.”

A way to achieve this is to “identify the side effects profile of a treatment and match that to the patient’s fragility score and what you know of their major concerns from the past.”

Nurses can help – the role of the nurse in MM

Nurses play a key role in managing patients with MM, said Dr Tariman, including “patient education – clinical nurse specialists are reliable sources of accurate and evidence-based information and often are the most trusted source of information by the patient. They offer psychological support, even if it’s only being there and listening to the patient, assessment, monitoring and education on self-management both for the treatment plan and AEs and importantly are often the biggest patient advocates – empowering patients to say what they need to say to decision makers to ensure they get the treatment best suited to them. Of course they also evaluate outcomes of treatment and inform the patient as well as being a key person in information sharing amongst a multidisciplinary team.”

Dr Tariman concluded his presentation of the role of the nurse in MM with the observation that “their role is complex and influenced by many variables such as relationships, hierarchy, power, leadership, education, experience and responsibility. But ultimately, nurses are not bystanders in the decision-making process. Nurse practitioners and nurse clinicians are very much actively involved, in fact patients always have the luxury of time to discuss their fears with the nurses, so it’s important that nurses are truly knowledgeable, have the correct information and can help the patient access additional information from trusted sources.”



  1. Tariman & Szubski(2015). Evolving Role of Nurse in TDM: Lit Rev. Clin J Oncol Nur, 19(5),  548-556.
  2. Tariman et al. (2014). Factors in TDM in Multiple myeloma. Ca Treat Comm, 2, 34-37. Agency for Healthcare Research and Quality.
  3. Institute of Medicine Committee on Quality of Health Care in America.
  4. Patient Protection and Affordable Care Act.
  5. AACN Competencies for Baccalaureate and Graduate Nurses.

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