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iwCLL 2021 | Improving patient communication in CLL

Zack Pemberton-Whiteley, Leukemia Care, Worcester, UK, discusses how information provision affects the experience of patients with chronic lymphocytic leukemia (CLL). Mr Pemberton-Whiteley discusses the findings of the “Living With Leukemia” survey, which reported that information regarding watch-and-wait treatment strategies was insufficiently communicated to patients and resulted in poorer experiences. The survey found that a lack of information was associated with a significantly greater likelihood of worry; however, poorly explained information produced patients outcomes which were worse than for patients who were given no information. This highlights the importance of clear communication. Mr Pemberton-Whiteley also talks on the role clinical nurse specialists (CNSs) constitute as an important source of information, having a positive impact on patients experience. Despite this, only 56% of patients with CLL in the UK have access to CNSs, which dropped to 29% for those on watch-and-wait. Improving CNS accessibility may improve information provision and thus overall patient experience. This interview was conducted during the 2021 virtual international workshop on CLL (iwCLL) congress.


Zack Pemberton-Whiteley is the CEO of Leukemia Care, UK, the Chair of the Acute Leukemia Advocates Network (ALAN), and has received institutional grant funding and/or honoraria from AbbVie, Agios, Amgen, Astellas, Autolus, Bristol-Myers Squibb, Celgene, Daiichi Sankyo, Gilead, Incyte, Jazz, Janssen, Kite, Kyowa Kirin, Mallinckrodt, Novartis, Pfizer, Roche, Servier and Takeda.