Background: Advances in CML have improved survival, although many patients still experience resistance and intolerance with tyrosine kinase inhibitors (TKIs), often necessitating a treatment (Tx) change. Data on patient (pt) experiences/concerns regarding outcomes and role in Tx decision-making are lacking. Alignment of pt and healthcare provider (HCP) perspectives is needed to limit unnecessary Tx switching, improve quality of life (QOL), and optimize achievement of goals.
Aims: To understand the unmet needs and concerns around CML from the perspectives of pts and HCPs
Methods: CML SUN was conducted among pts with CML and treating HCPs. Qualitative interviews (published previously) were used to inform questions for the quantitative surveys (unique for pts and HCPs), reported here.
Eligible pts were aged ≥18 years with CML in chronic phase (CML-CP), and were receiving a second or later-line TKI. Eligible HCPs were hematologists and/or oncologists who spent ≥50% of their time caring for pts, treated ≥10 pts with CML-CP over the last year, and switched pts’ Tx.
Results: In this interim analysis, 130 pts and 150 HCPs in 9 countries participated in the quantitative survey.
In newly diagnosed CML, pts and HCPs shared some similar goals. While the top Tx goal for both HCPs and pts was maintaining/improving QOL, HCPs placed higher emphasis than pts on the efficacy of Tx and reaching response milestones, a trend that is seen across lines of Tx. Both pts and HCPs aim to avoid disease progression, but pts put more emphasis on reducing/managing potential side effects (SEs) across lines of Tx (Figure).
In line with Tx goals at diagnosis, pts most wanted to receive information about potential SEs, although only 49% recalled receiving any and 34% of HCPs reported not providing any.
Many HCPs (49%) reported presenting only 1 Tx option to pts at diagnosis for a variety of reasons, including thinking that pts do not understand and cannot make informed Tx decisions or they did not want to overwhelm pts. Across Tx lines, about half of HCPs reported making Tx decisions with little to no input from pts. Only one-third of pts reported that Tx decisions were made jointly with the HCP.
When asked about Tx satisfaction, most pts were satisfied with how their Tx worked to control the disease. However, 41% of pts did not indicate satisfaction with the SE profile of the Tx, highlighting a need for more tolerable Tx options or a better understanding of SE profiles of Tx options. Pts reported switching Tx most often due to SEs, while most HCPs reported resistance as the primary reason. Even when a Tx switch was considered, QOL was the top goal of pts, while HCP focus remained on long-term survival and achieving responses.
One-third of pts waited to report SEs with their first Tx until the HCP asked. Of 35 pts who informed their HCP of SEs and switched their 1st Tx as a result, only 43% felt empathy from the HCP and 23% reported that the HCP did not think the SEs were serious and expected them to continue Tx. Of 27 pts who reported noncompliance with current Tx, SEs were the top reason.
Summary/Conclusion: Pts with CML may have different goals than HCPs, indicating a need for improved communication and shared decision-making. Communication is crucial between pts and HCPs to properly manage SEs and ensure Tx efficacy. Pts should be empowered to have discussions with their HCPs about tolerability; HCPs may benefit from a better understanding of how tolerability impacts pts. Further insights into HCP and pt interactions/expectations will be critical in shaping and improving the management of CML.
Keywords: Tyrosine kinase inhibitor, Patient reported outcomes, Chronic myeloid leukemia