Burden of disease management among patients with multiple myeloma and their care partners.
Abstract
e23253 Background: The complexity of current multiple myeloma (MM) treatment (tx) regimens imposes burdens on daily life, impacting quality of life (QoL) for both patients (PTs) and care partners (CPs). This study characterizes the holistic burden with current tx, including challenges with tx logistics and perceptions of novel therapies (eg, bispecific antibody [BsAb]/chimeric antigen receptor [CAR]-T). Methods: Semi-structured interviews were conducted online by a trained qualitative moderator with 12 adult MM PTs who received ≥3 lines of tx (n=4 received BsAb/CAR-T) and 9 CPs in the US. Open-ended discussion guides elicited insights on physical, psychosocial, and financial impacts especially as related to tx frequency and attending appointments. Rapid analysis was conducted by 2 coders per transcript with iterative coding and consensus review to identify themes that will inform design of future studies. Results: Five main themes emerged: (1) diverse physical symptoms from tx causing social impacts, (2) care complexity creating psychological burden, (3) frequent appointments imposing time and financial burdens, (4) lifestyle alterations required to accommodate tx schedule, and (5) openness to novel therapies shaped by personal experiences and external information. Most PTs (10/12) reported major time burden. " I would say that another thing that people probably don't appreciate is how much time I spend going to doctors’ appointments and getting blood work done and all that... It takes up a huge portion of your life. " -PT All CPs (n=9) rearranged their lives around caring for the PTs. Most CPs (8/9) described a loss of independence. " I took a few years off [work] during the really bad years. I think I just didn't have enough emotionally to [work]... And I often had to go off to [his] doctor's appointments. " -CP Financial burden affected most PTs (n=11), and 2 CPs highlighted the financial strain of frequent travel for tx. “ There's days where if the rent is due and I don't have enough money... like just yesterday, even though they arranged for me to pay half, they still brought me an eviction notice ” -PT Physical impacts were reported by PTs receiving the novel BCMA/GPRC5D-targeted BsAbs, including fatigue, inflamed tongue, and difficulty sweating. Patient interest in novel tx centered on tolerability and lifestyle impact. Nearly half expressed interest in tx they would “tolerate well,” with “less side effects”; one-third indicated a desire for tx that is “less intrusive in life” and can be “taken as little as possible," as prioritized tx characteristics. Conclusions: While advances in MM tx improve survival, tx complexity and side effects remain distinct burdens on PTs and CPs. These findings highlight a pressing need for more tolerable and less burdensome therapies, both from physical and socio-economic perspectives, that restore autonomy and QoL beyond clinical outcomes. Further research will aim to quantify this need.
Article Details
Journal Info
Journal of Clinical Oncology
Lippincott Williams & Wilkins
Authors (10)
Shiyin Jiao
1AbbVie Inc., North Chicago, United States
Charlene Tugwete
AbbVie, Inc, North Chicago, IL
Hilary Wilson
AbbVie, Inc, North Chicago, IL
Christian Atkinson
Adelphi Real World, Bollington, United Kingdom
Elizabeth Holdsworth
Adelphi Real World, Bollington, United Kingdom
Morgan Fox
Adelphi Real World, Bollington, United Kingdom
Murat Ceyran
Adelphi Real World, Bollington, United Kingdom
Robin Tuohy
International Myeloma Foundation, Los Angeles, CA
Valarie Traynham
HealthTree Foundation, South Jordan, UT
Saurabh Patel
AbbVie, Inc, North Chicago, IL