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Supplemental File 2. Patient Interviews and Vignettes
Evidera scientific staff (AD, HC, and SH) with qualitative research experience conducted one-on-one telephone interviews with patients in English and French. Interviews in German were conducted by another experienced qualitative interviewer (see Acknowledgments in the main article text for details). Interviewers were patient- centered research professionals, experienced in conducting qualitative interviews. All had prior training in
qualitative interviewing and received training specific to the purposes and objectives of this study. Interviewers held a minimum of a bachelor’s degree and were fluent in the language spoken by the patients being interviewed.
Participants were told their interviewer’s name, job title/role, and the organization for which the interviewer worked.
Interviews covered disease experience and symptoms of multiple myeloma (MM), benefits of MM treatment, treatment burden of MM, perceived side effects of MM treatment, and understanding of benefit/risk trade-offs.
Participants were presented with two hypothetical vignettes to discuss how they would choose between treatment options. Different versions of the vignettes were used for patients with newly diagnosed MM (NDMM) and relapsed/refractory MM (RRMM), and are shown below.
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Vignette A
Scenario A: An Intravenous Treatment Population: NDMM
Management of the disease
On average, this treatment will extend your life expectancy by 5 years and you would be able to maintain a remission (i.e., your multiple myeloma is under control) for more than 2 years. This means you will feel less fatigue and have very little pain. You will be less prone to infection or kidney
problems. Your general health will improve, and you will be able to return to your day-to-day activities.
How the treatment is administered?
This treatment will require 20 outpatient clinic or hospital visits to receive an intravenous injection (IV) following a treatment schedule for one to two years. Typically, the injection will be administered over a couple of hours, and in total the appointment will take at least five hours in the hospital.
Intravenous injections are used for substances that can cause irritations, but also will require you to take some treatment before and after the IV to reduce the risk of infections.
What are the side effects associated with the treatment?
The risk of experiencing serious or life-threatening side effects is moderate (between 30% and 40%).
The risk of experiencing common side effects (i.e., nausea) that would interfere with your day-to-day life is more than 75%.
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Scenario A: An Intravenous Treatment Population: RRMM
Management of the disease
On average, this treatment will extend your life expectancy by 1 year and you would be able to maintain a remission (i.e., your multiple myeloma is under control) for less than 1 year. This means you will feel less fatigue and have very little pain. You will be less prone to infection or kidney problems. Your general health will improve and you will be able to return to your day-to-day activities.
How the treatment is administered?
This treatment will require 20 outpatient clinic or hospital visits to receive an intravenous injection (IV) following a treatment schedule for one to two years. Typically, the injection will be administered over a couple of hours, and in total the appointment will take at least five hours in the hospital.
Intravenous injections are used for substances that can cause irritations, but also will require you to take some treatment before and after the IV to reduce the risk of infections.
What are the side effects associated with the treatment?
The risk of experiencing serious or life-threatening side effects is moderate (between 30% and 40%).
The risk of experiencing common side effects (i.e., nausea) that would interfere with your day-to-day life is more than 75%.
Monitoring your health
To monitor your health and how you are responding to treatment, you will need to undergo some routine tests, such as regular blood tests, and have imaging tests such as magnetic resonance imaging (MRI), X-rays, or bone- marrow biopsies.
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Vignette B
Scenario B: A Subcutaneous Therapy Population: NDMM
Management of the disease
This treatment will extend your life expectancy by 5 years and you would be able to maintain a remission (i.e., your multiple myeloma is under control) for more than 2 years. This means you will feel less fatigue and have very little pain. You will be less prone to infection or kidney problems. Your general health will improve, and you will be able to return to your day-to-day activities.
How the treatment is administered?
This treatment will require you to visit your GP practice 20 times to receive a subcutaneous injection (a small injection under the skin, usually in the tummy or thigh) following a treatment schedule for one to two years. Typically, the injection will take less than two hours.
Compared to intravenous injections (injections into the vein), subcutaneous injections reduce the frequency and severity of common side effects, such as tingling or pain in the hands or feet, but they are still as effective as IVs.
What are the side effects associated with the treatment?
The risk of experiencing serious or life-threatening side effects is moderate (between 30% and 40%). In these cases, you will need to be admitted to hospital urgently for treatment.
The risk of experiencing side effects (i.e., nausea) that would interfere with your day-to-day life is more than 75%. In these cases, you will need to be admitted into hospital, but your life will not be at risk.
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Scenario B: A Subcutaneous Therapy Population: RRMM
Management of the disease
This treatment will extend your life expectancy by 1 year and you would be able to maintain a remission (i.e., your multiple myeloma is under control) for less than a 1 year. This means you will feel less fatigue and have very little pain. You will be less prone to infection or kidney problems. Your general health will improve and you will be able to return to your day-to-day activities.
How the treatment is administered?
This treatment will require you to visit your GP practice 20 times to receive a subcutaneous injection (a small injection under the skin, usually in the tummy or thigh) following a treatment schedule for one to two years. Typically, the injection will take less than two hours.
Compared to intravenous injections (injections into the vein), subcutaneous injections reduce the frequency and severity of common side effects, such as tingling or pain in the hands or feet, but they are still as effective as IVs.
What are the side effects associated with the treatment?
The risk of experiencing serious or life-threatening side effects is moderate (between 30% and 40%). In these cases, you will need to be admitted to hospital urgently for treatment.
The risk of experiencing side effects (i.e., nausea) that would interfere with your day-to-day life is more than 75%. In these cases, you will need to be admitted into hospital, but your life will not be at risk.
