A mixed methods study exploring the role of perceived side effects on treatment decision-making in older adults with acute myeloid leukemia (AML).
Authors: Maze Dawn , Walter Roland B. , Merino Diana M. , Bell Timothy J. , O'Hara Louise , Peloquin Francois , Morgan Lucy , Hernandez Loriana , Healy Jasmine , Panter Charlotte , Welch Verna L. , Gater Adam , Amer Karim , Hohman Ryan , Stein Julia , Brown Andrew , Russell Nigel H. , LeBlanc Thomas William 
Published: June 2021

7016

Background: AML patients may be treated with intensive chemotherapy (IC), or non-intensive chemotherapy (NIC) or they may receive best supportive care (BSC) or hospice care. Balancing treatment efficacy and toxicities is key in treatment decision-making. IC is efficacious with extensive toxicities, while NIC has lower risk of toxicities but reduced efficacy. This study provides an international, multi-stakeholder perspective on the role of side effects in AML treatment decision-making. Methods: We conducted one-on-one, 60-minute interviews with 28 AML patients (>65 years, not receiving IC), 25 of their family members and 10 independent physicians from the US, UK and Canada. Interviews included open-ended questions to explore the treatment decision-making process. Participants also rated the importance of various factors in AML treatment decision-making from 0 (not important) to 3 (very important). Results: The sample included patients with varying treatment histories (13 no treatment, 11 on NIC, 3 discontinued NIC, 1 BSC). Side effects were rated as a ‘very important’ factor in treatment decision-making by a greater proportion of patients not on treatment (n = 9/13; 69.2%) and their relatives (n = 12/13; 92.3%) compared to those with experience of NIC (n = 5/11 who answered, 45.5%), their relatives (n = 3/11; 27.3%), and physicians (n = 4/10; 40.0%). When discussing side effects in detail, there was a disconnect between perceptions of patients not on treatment, and side effects that patients on NIC actually experienced. Many patients with no treatment experience were worried that side effects would be worse than their current symptoms (n = 6/13), referring to constant vomiting, hair loss, organ failure, or death. Fear of side effects was the primary reason for opting not to take treatment (n = 9/13), though it was not clear if these patients were distinguishing between IC and NIC. In contrast, although two patients’ experiences of side effects resulted in them discontinuing NIC (n = 2/14), a higher proportion (n = 9/14) reported that the side effects had little impact on their life. Side effects most frequently reported by patients with experience of NIC (n = 11/14) were considered mild and included fatigue, reduced appetite, generally feeling unwell, nausea and injection site irritation (all n = 3). It was most commonly reported that the worst aspect of NIC was the time commitment (n = 4/8 asked). When accounting for different treatments paths no international variation in findings was observed. Conclusions: The nature and severity of side effects of AML treatment were perceived to be worse than reality. This incorrect perception may lead to undertreatment of patients and result in worse outcomes. There is a need for more patient education and resources about the lived treatment experience, to enhance understanding and mitigate pre-conceived notions of side effects.