OBJECTIVES: Quantify the level of Leukemia and Lymphoma (L&L) patient involvement in treatment decisions, patient preferences regarding the most valued criteria when choosing a treatment and ascertain the main drivers of such engagement and preferences.

METHODS: An exploratory sequential mixed-methods design was implemented. The initial phase consisted of quantitative data collection through an online questionnaire, followed by focus group meetings. The involvement of L&L patients was performed with the support of three national Patient Associations. Descriptive data analysis was complemented with content analysis, and qualitative insights from the focus groups.

RESULTS: 190 patients (n=75 Leukemia; n=115 Lymphoma) answered the questionnaire (October-December 2022) with 32% report wanting to be more involved in treatment decisions. Of these, 66% considered they were not involved due to “disease’s lack of knowledge” and 26% due to “lack of physicians’ openness”. Among those who did not wish to have been more involved, 36% also claimed “disease’s lack of knowledge”. The most valued criteria when choosing a treatment were: 1.Lifespan increase, 2.Duration of response, followed by 3.Duration of treatment, 3.Route of administration and 3.Adverse events (on the same preference level), 4.Frequency of administration and lastly 5.Time spent on each administration. 57%(n=107) of patients stated oral administration preference over intravenous (increasing to 91% (n=21) in CML; 80% (n=12) in CLL and 79% (n=11) in AML). 10 patients participated in 3 focus groups (June-2023). Overall, qualitative insights were consistent with the main quantitative findings. However, most participants felt fully involved in treatment choice and the desire of not being involved (mostly in 1L-treatment) was essentially due to shock after diagnosis and confidence in physicians’ decision.

CONCLUSIONS: This study reinforces that L&L patient perceptions on lack of knowledge regarding their disease can influence involvement in treatment decisions, and highlights that improving health literacy may contribute to a greater patient involvement during all treatment stages.