The ‘inbetweeners’: living on a watch and wait approach for chronic lymphocytic leukaemia – a qualitative study

Abstract

Background: Chronic lymphocytic leukaemia (CLL) is an incurable disease; many people with the condition do not require active treatment and are monitored using a watch and wait approach. Aim: The aim of this study was to explore the experiences of people living with a diagnosis of CLL and on watch and wait. Methods: Using a descriptive qualitative approach, seven participants on the watch and wait approach were interviewed. Data analysis was guided by systematic text condensation. Findings: Participants reported anxiety, referring to ‘wait and worry’. Their information needs were not met, and they resorted to seeking information on possible future treatments themselves. They also experienced feeling like an imposter because they were not receiving active treatment like other patients with cancer. Conclusions: A greater understanding of how information provision affects levels of anxiety and worry among people living with CLL on watch and wait is needed. In addition, clinical nurse specialists could deliver education on the watch and wait approach, supplemented by video-based educational materials developed by the haematology team.