ASH 2023: Caregiver Distress – How Are You, REALLY?

“How are you?” This should not be a hard question. Yet, if you are a caregiver, there are times that question likely stumps you, and other times, it may lead to a sobbing breakdown or a fit of laughter. 

“How am I?” I have no idea! I know how my husband is. I rattle off his date of birth, allergies, medications, and medical history for the last six years faster, and more accurately, than mine, but truly taking an assessment of how I “am” – that is a Pandora’s box I, and many caregivers, are afraid to open. 

Yet, caregivers play an increasingly essential role at critical intervals in myeloma patients’ treatments (stem cell transplant, CAR-T, and BiTE therapies), and assessing and meeting their psychological needs is crucial.   

At the 2023 ASH Conference, Abstract 3335, “Assessment of Multiple Myeloma-Related Burden on Caregivers - a Portuguese National Study”, was presented by lead investigators Carlos BT Costa, MD, and Manuel Neves, MD, and their colleagues from 11 Portuguese centers. 

As part of an ongoing multicentric, national, cross-sectional study, they gathered data on 313 myeloma patients, their disease, and their caregivers (167) who matched the inclusion criteria of being identified as the sole significant caregiver. The median age of the caregivers was 59.4 years, and 74% were women. 

Researchers used QASCI, a Portuguese questionnaire for the evaluation of the burden of caregiving, to assess the identified primary caregivers of patients with multiple myeloma. 

The seven dimensions of burden evaluated include

• Emotional Burden
• Personal Life Implications
• Financial Overload
• Reactions to Demands
• Mechanisms of Efficacy and Control
• Familiar Support and
• Satisfaction with the Role

Taken as a whole, the median overall score for the burden of caregiving amongst the participants was 23, which fell on the high end of the “Low” range (0 to 25). 

Deeper analysis, however, revealed interesting results. “The rate of “High” or “Extreme” burden was higher for Personal Life Implications (19.9%), Familial Support (15.8%), and Mechanisms of Efficacy and Control (14.4%); it was lower for Reaction to Demands (3.6%).” 

The study identified that for caregivers of patients with two or more lines of treatment, the burden was significantly higher for the dimension of Personal Life Implications.

For the patients younger than 60 years of age, the burden of Financial Overload was significantly higher, and for high-risk patients, the score for Mechanisms for Efficacy and Control was higher. 

The study concluded, “Despite most caregivers reporting an overall low burden, this study shows a higher score for women and a significant relation between higher burden of caregiving and later lines of treatment and higher disease risk scores. Specific dimensions, such as personal life and familial dynamics, as well as the financial aspect in professionally active caregivers, display a higher impact and should be addressed specifically when dealing with multiple myeloma patients and their caregivers.”

Given that multiple myeloma is currently an incurable disease, the majority of patients are on continued treatment, and some of those treatments (stem cell transplants, CAR-T, and BiTE therapies) require significant active caregiver involvement, it is crucial to understand the burden-level and stress caregivers experience at different stages of disease in order to better identify needs and offer support.

Both the patient and the caregiver should be ready, willing, and able to proceed, or the patient’s safety is at risk. 

Another relevant study of caregivers, conducted at Dana-Farber/Harvard Cancer Center Network between June 2020 and January 2021 by lead investigator Dr. Elizabeth K. O’Donnell and colleagues, was published in the September 13, 2022 issue of the journal Blood Advances, “Quality of life, psychological distress, and prognostic perceptions in caregivers of patients with multiple myeloma”.

That Dana-Farber study found that “caregivers of patients with multiple myeloma undergoing treatment experience impaired quality of life and elevated psychological distress across the disease continuum, irrespective of the line of therapy. Further, caregivers of patients with multiple myeloma reported higher levels of anxiety than the patients themselves.”  

Both the Portuguese National Study presented at ASH 2023, and the Dana-Farber/Harvard Cancer Center Study published in 2022 admit that more research is needed. 

As quoted in the journal Blood Advances, “Although caregivers of patients with multiple myeloma play a critical role in supporting their loved ones throughout the illness course, studies examining caregiver quality of life, psychological distress, and prognostic awareness are lacking.”

With research and subsequent resources lagging, it is important for both patients and caregivers to speak up and advocate for their needs. 

Just as flight attendants instruct passengers to put their own oxygen mask on first before assisting others, it is time for caregivers (me included) to truly assess, and accurately answer, the question, “How are you?” – to make sure we are mentally and physically capable of meeting our caregiving responsibilities.   

Watch the video below for more information on this important subject. 

Resources 

Caring for the Caregiver (Article)

Myeloma Caregiver Webinars

Myeloma Coach Program (Connect 1:1 with other myeloma caregivers)

ASH 2023 Resources

Would you like to watch ASH 2023 myeloma research interviews from the investigators themselves? Click "ASH 2023" here: HealthTree University Conference Coverage

To read other ASH 2023 articles, click here: HealthTree 2023 ASH Articles