Mental Health and Myeloma Research

Mental Health and Myeloma Research

As I mentioned in my previous blog, “What are You Going to Fill Your Glass with?” I reviewed a variety of sessions dealing with various aspects of mental health. Almost all of them were poster sessions, which I personally like because they have such a different feel from oral presentations (at least in my field; I imagine it’s the same at ASH). 

In poster sessions, posters are placed in aisles, and you get to walk around a large room with the presenters standing nearby. You can stop and chat with the presenters to ask questions and make comments. The experience is much different from the typical 3-minute Q&A session done in oral presentations. 

However, virtual poster sessions consist of poster images along with submission abstracts — there wasn’t any opportunity to engage with the researchers. Nonetheless, there were some interesting projects and I’m going to highlight some of those findings in this blog. 

One interesting study examined psychological distress and quality of life, along with prognostic awareness, by line of therapy in those with multiple myeloma. Regardless of the line of therapy, about a quarter of all patients demonstrated clinically significant levels of anxiety, depression, and post-traumatic stress disorder (PTSD).

While a quarter doesn’t represent a majority, it is still a high number. Furthermore, the study did not report the overlap (or lack thereof) among patients. For example, 25% of the patients could have reported all three; 25% could have reported anxiety; while a different 25% could have reported depression, etc. 

This study also looked at prognostic awareness. They found that over 90% of patients felt like prognostic information was helpful in making decisions about treatment. Over 85% said that prognostic information helped with coping, as well as making future plans. While 85% indicated that their oncologist told them that their myeloma was incurable, only 42% thought it was incurable; 30% reported that they had a terminal illness. 

These patients reported significantly higher depression, anxiety, symptom burden, as well as lower quality of life. The authors concluded that intervention is needed to help patients reduce distress, improve quality of life, and develop various coping strategies that can be helpful over the multiple myeloma disease pathway. 

Another project explored interest in and feasibility of a lifestyle intervention program for those with myeloma. These researchers intentionally sought a diverse sample: the 38 myeloma participants consisted of 54% White, 46% Black, 54% Female, and 46% Male. The majority (55%) have not received lifestyle counseling from their healthcare team, but almost 90% were interested in a lifestyle program. Specific areas of interest included social support, guided/personalized exercise, meal preparation support, and flexibility. These results also revealed a significant gender difference in perceived emotional support, informational support, instrumental support (i.e., tangible support, like mowing the lawn or other physical tasks), and companionship, with females reporting higher support in all these areas. 

Taking this intervention program support a step further, another study is in process, and is looking at the effectiveness of digital life coaching during the autologous stem cell transplant (ASCT) process. This study focuses on a specific event in the myeloma pathway (SCT) and thus has a more focused time point. 

Based on a pilot, which consisted of life coaches meeting with patients digitally and connecting every 5-7 days, they are now launching a phase II trial looking at a digital life coaching program compared to typical SCT care. An interesting element of this study is that one of the outcome measures will be the use of sedative-class PIMs, such as lorazepam, temazepam, and similar medications. They will also compare patient-reported outcomes (PROs) including quality of life, emotional distress, and sleep disturbance. 

The last project I want to highlight also doesn’t have results yet but has garnered a lot of attention during ASH – the iStopMM project. This project will be reporting on mental health correlates and outcomes in the future, and that data will be highly anticipated, I think!

Mental health is important. It influences how we handle stress, how we make healthy choices, how we think and feel about our lives and our relationships, and how we rely on our ability to adapt to changes and cope with challenges we encounter in everyday life. It’s encouraging to see research addressing mental health among myeloma patients!

Jessie Daw, on Twitter @Daw6Jessie 

I am Thankful … 

I am Thankful … 

‘Tis the season of gratitude. During these turbulent global times, it is important to embrace the positive aspects of daily living. It is not always easy to identify things to be grateful for, especially if you are facing myeloma, COVID-19, or other personal challenges.  

Sometimes, it takes a conscious effort, but it can have a powerful impact on your outlook. I have plenty to be thankful for while attending the 63rd American Society of Hematology (ASH) annual meeting.

I am thankful for:

  • the support of the International Myeloma Foundation (IMF) and the sponsors to attend the ASH annual meetin virtually, always keeping patient safety in mind.
  • not having to travel! Did you see how much snow Minnesota got?   
  • my significant other who has already cleared 9 inches of snow!    
  • the replay option for ASH presentations. The information presented is at such a high level and at such a rapid pace, with some technical difficulties, so it is challenging to keep up. I will be spending some time watching ASH replays.  
  • the dedicated medical professionals who continue to do research and clinical practice to improve the life of my Myeloma Family. Despite the added challenges of COVID-19, their dedication has not wavered, as evidenced in the more than 500 programs, posters, and oral presentations. They and their families should be proud of their work. 
  • the amazing support group leaders who bring their perspective to this experience. In attendance are some “veterans” and some “newbies, with all impassioned. The excellent selection of SGLs brings an array of knowledge and personal experiences, representing the spectrum of this complex diagnosis. We have people who represent untreated smoldering myeloma, persistent maintenance therapy, relapsed/refractory myeloma treatment, and stem cell transplant, both Auto and Allo. Each person has an area of interest and is sharing what they learn on social media and with their support group members. Remember, “Knowledge is Power,” and this is one powerful group! 
  • every day of health and well-being for myself and my myeloma family.

I continue to be inspired by and be grateful for the dedication of the myeloma community to improve lives and to search for the cure.   

With gratitude, 

Teresa Miceli, RN BSN OCN 

Myeloma Nurse Navigator 

Mayo Clinic Rochester 

IMF Nurse Leadership Board 

Rochester MMSS SGL 

Teresa Miceli, on Twitter: @IMFnurseMyeloma