John Richter, MD, discusses the findings form the self-reported symptom and psychological survey in patients with multiple myeloma.
Joshua R. Richter, MD
With several new agents entering the treatment landscape, patients with multiple myeloma are facing different toxicity, financial, and psychological burdens. As a chronic disease, additional attention is needed to address these issues and improve patients’ overall quality of life, according to Joshua R. Richter, MD.
In a patient-reported survey, 239 patients with multiple myeloma completed The Living with Cancer patient-reported outcomes (PROs) instrument. Of those, 48% were concerned that they were not able to do the activities they wanted to do, with 33% reporting decreased performance status. Financial toxicity was reported by 44% of patients. Depression was reported by 15% of patients and 41% of patients reported anhedonia.
The 12-month survival rates from the completion of this study were 76% for patients with high distress scores and 87% for patients with low distress scores.
In an interview with OncLive, Richter, a hematologist/oncologist specializing in multiple myeloma at John Theurer Cancer Center, discussed the findings form the self-reported symptom and psychological survey in patients with multiple myeloma.Richter: The landscape of multiple myeloma is changing. There are many new developments. We are pushing the field forward in terms of how we treat the disease and we are improving outcomes in both the upfront and the relapsed/refractory settings. There are a lot of data that were presented recently that look at ways that we can maximize efficacy of different regimens in relapsed/refractory multiple myeloma.
What has become more prevalent is understanding that there are other areas that need to be taken into consideration, including overall symptom management and a variety of different modalities on how the patient has to live with the disease on a daily basis.
This has become an area that we are interested in and it has not been maximizing clinical outcomes in terms of response rates, but maximizing outcomes in terms of the total number of patients who have to live with cancer.
A pilot study was developed to investigate PROs. This was validated across a variety of physicians giving them clinical scenarios of different statuses of patients to determine whether they would recommend either intervention by palliative care, hospice care, or cessation of chemotherapy.
Once the tool was validated, a second study looked at over 1100 patients across a variety of different malignancies to evaluate where patients may benefit from transition to palliative care or hospice care.
Subsequently, we looked at a subset of 239 patients with multiple myeloma. The PROs tool is a survey that involves 4 different domains of personhood. We look at performance status, burden, pain, and depression. We ask questions along the Likert Scale and then the patients individually weigh their responses in terms of how each of those modalities impact their life.The survey turned out to give some surprising results. In terms of all cancers, we found people who had high distress scores and low distress scores. The whole survey, if you put the numbers together, gave a rank score somewhere between 0 and 112. It turns out that anything with 29 or greater was associated with decreased outcomes across all cancers. This was validated in a presentation at the 2017 ASCO Annual Meeting. In terms of multiple myeloma, we found some interesting facts.
In terms of distress score correlating with outcomes, there is a trend suggesting that those with higher distress scores did have worse outcomes. However, that was not statistically significant as it had a P value of .66.
However, there were some interesting things that did come out of our study, including the depression modality. The way that we approach depression was by utilizing a 2-question screening for depression. It asks about feelings of depression and feelings of anhedonia. It turns out that although 15% of patients reported depression, 41% of patients reported anhedonia, which is highly consistent with depression as a larger scale. It was interesting how patients report their symptoms. Ultimately, we gained patient insight in terms of when they are ready to transition towards palliative care or cessation of chemotherapy.
One of the ways we are looking to develop this is to determine how we treat patients and benchmark physicians in terms of the best way to manage patients. Life care discussions can be difficult from the patient and provider standpoint. One of the things that this tool allows is a shift in paternalism, where the physician sits down and gives the power back to the patient. That tool gives us an idea that they are ready for a transition. It puts the power in the hands of the patient to help guide their plan of care.One of the things that plagues many patients with cancer who are managed across a long period of time is the lack of control of their disease and symptoms. Something that is empowering to help patients deal with the day-to-day “horrors of cancer” is the ability to take some ownership of their destiny at some level. They can decide whether they are ready to continue with chemotherapy or if palliative care is a better approach.The next steps are to formulate a standardized way to make this approach more universal. We want to help not only the patients, but the physicians and care teams guide their patients’ care. It is important to explore the possibilities of establishing a standard. Right now, especially in hematologic malignancies, it is difficult to know where the patient is in terms of their disease.
The next steps in the research are taking this concept to the next level. In terms of this initial study, the patients only received the survey once. One of the next steps is to evaluate patients’ responses over time to see if we can get a better model for when these interventions may best take place. The other benefit is trying to expand this into more patients and understanding that patients who achieve a higher distress score based off the tool may need earlier intervention or attention for hospice and palliative care models.
We are looking to develop some degree of standardization, not only for the patients but also help the caregivers to evaluate when the appropriate time is to have these interventions. One of the things that is becoming pervasive in the medical world right now is, “When is the time to stop chemotherapy?”
There are a lot of different reasons why chemotherapy given in the final moments of life might not be the right approach. It can be difficult from a patient standpoint to know what that time is, but it is also difficult from a physician standpoint. We are trying to have some degree of standardization so that both sides can come together and determine whether chemotherapy is going to improve the quality of life. If it is not going to improve the patient as a whole, then it is time to stop.This is something that is critical and is becoming more of an issue. We need to understand where the difficulty comes in with this. We have a lot of new drugs, and these drugs may offer many of our patients tremendous outcomes; however, there is also a significant amount of financial burden that not only comes across to the patient but to their family.
While some of this is perceived by the patient, some patients often plunge themselves into deep financial troubles in order to support the care for their own disease, which may affect their family, as well. This is a critical time to evaluate things on a global standpoint. We need to be concerned about the system as a whole, but we also need to get more granular and focus on what the deleterious effects seen on a patient-by-patient level are in terms of financial burden.
Richter JR, Biran N, Paramanthan D, et al. Incidence and survival impact of self-reported symptom and psychological distress among patients with multiple myeloma. In: Proceedings from the 2017 ASH Annual Meeting and Exposition; Dec 9-12, 2017; Atlanta, Georgia. Abstract 679.