Attending the 65th Annual Meeting and Exposition of the American Society of Hematology meeting virtually, most presentations discuss the biological intricacies and physical treatments for myeloma. However, some research focuses on the quality of life for patients. As a patient advocate invested in the welfare of those battling myeloma, sessions exploring the psychological dimensions and toxicity associated with this diagnosis resonated with me. While advancements in biological research are pivotal, understanding the psychological factors, financial burdens, and overall well-being of myeloma patients represents an essential pillar in comprehensive care. These insights are illuminating and they’re also a cornerstone to fostering holistic and patient-centered approaches in managing myeloma, making the journey of those affected by this condition more manageable.
Research in psychological factors related to a multiple myeloma diagnosis highlights various coping strategies, with approach-oriented methods like emotional support showing benefits in higher quality of life and lower distress (Richard Newcomb, MD, Coping in Patients with Hematologic Malignancies Undergoing Hematopoietic Cell Transplantation). Efforts to enhance well-being post-transplantation include interventions like the Positive Psychology PATH displaying promising signs of improving distress, quality of life, and physical function (Hermioni L. Amonoo, MD, A Positive Psychology Intervention in Allogeneic Hematopoietic Stem Cell Transplantation Survivors (PATH) to Promote Well-Being: Randomized Controlled Feasibility and Preliminary Efficacy Trial).
Similarly, a virtual assistant, Care.coach AvatarTM, aided in providing support during hematopoietic stem cell transplantation. Care.coach functions available to patients, along with their average use were: social engagement (52%), exercise (20%), transplant education (15%), reminders (8%; examples include hydration, food, and rounds optimizer), and other (5%). Satisfaction was noted in about 72% of cases, suggesting that this approach may help patients with coping during this challenging time (Amar H. Kelkar, MD, Feasibility of Utilizing a Virtual Health Assistant during Inpatient Reduced-Intensity Allogeneic Transplantation).
A caregiver burden study in Portugal highlighted various dimensions, with most reporting low burden, yet specific aspects like personal life implications, familial support, and financial overload affected caregivers significantly, especially women and those dealing with higher disease risk scores (Carlos BT Costa, MD, Assessment of Multiple Myeloma-Related Burden on Caregivers – a Portuguese National Study). Understanding these facets can tailor support for caregivers and patients effectively, addressing their specific needs and challenges.
Financial toxicity in multiple myeloma (MM) presents a significant challenge, impacting 20-25% of patients regardless of disease status, and is linked to income levels and out-of-pocket costs. This strain extends beyond finances, affecting patient well-being across various MM stages, notably impacting relapsed patients the most (Rahul Banerjee, MD, Financial Toxicity and Time Toxicity in Multiple Myeloma: Prevalence, Predictors, and Impact on QOL). Transportation hurdles exacerbate access issues for hematologic cancer patients, affecting over half of Bronx clinic attendees, highlighting the need for alternative solutions like tele-visits (Lauren Laufer, Transportation Cost Is a Significant Barrier to Quality Care for Hematologic Malignancy Patients in a Minority-Rich, Socioeconomically Disadvantaged Population).
Goodman’s Special-Interest session (Aaron Goodman, MD, Financial Toxicity: How to Determine Value of Hematology Treatments for Patients?) highlighted the complexities in cancer care, stressing the critical need to reevaluate treatments offering marginal gains while escalating in cost. Goodman advocated for patient-centric care, emphasizing outcomes vital to patients—longevity and quality of life—challenging the prevailing focus on progression-free survival in clinical trials. Alongside this, Goodman introduced a collaborative initiative, Common Sense Oncology, aimed at reshaping cancer care to prioritize patient-relevant outcomes and equitable access to impactful treatments.
The wide variety of research presented at ASH paints a comprehensive picture of the myeloma landscape. While the bulk of sessions centered on biological facets and treatments, the spotlight on psychological factors, caregiver burden, and financial toxicity is important, as well. These dimensions are central to understanding the holistic challenges faced by myeloma patients and caregivers. Strategies like approach-oriented coping mechanisms and innovative interventions such as the Positive Psychology PATH and Care.coach AvatarTM, shed light on ways to enhance patient well-being. Moreover, the realities of financial strain and transportation hurdles bring attention to the pressing need for targeted support programs. Goodman’s impassioned call for patient-centric care and a recalibration of treatment evaluation criteria further underscores the urgency to prioritize patient-relevant outcomes. As a patient advocate, these sessions solidified the notion that a comprehensive approach, including psychological, financial, and quality-of-life aspects, forms the foundation of effective myeloma care, ensuring a more manageable and compassionate journey for those impacted by this disease.
— Jessie Daw
@Daw6Jessie