References
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.
Chronic lymphocytic leukaemia (CLL) is the most common adult leukaemia in the western world; it is incurable and typically occurs in people aged over 60 years (Mukkamalla et al, 2023). The average age at diagnosis of CLL is 71 years and it is more common in men (American Society of Clinical Oncology (ASCO), 2017). Diagnosis is usually discovered incidentally when lymphocytosis is observed in a complete blood cell count (Muchtar et al, 2020).
Patients with asymptomatic, early-stage CLL are managed with a watch and wait (watch and wait) or active surveillance strategy, and treatment started only with symptomatic disease (Hallek et al, 2018). This follows evidence from clinical trials showing no advantage in survival from treatment of chlorambucil and fludarabine versus placebo in asymptomatic CLL patients (Dighiero et al, 1998; Hoechstetter et al, 2017) or with watch and wait versus early treatment with fludarabine, cyclophosphamide and rituximab (Herling et al, 2020). Moreover, although the recent results from the CLL12 clinical trial, which compared ibrutinib with placebo, show a higher progression-free survival in patients receiving ibrutinib, further results are needed to demonstrate an advantage of ibrutinib over observation in overall survival (Langerbeins et al, 2019).
Register now to continue reading
Thank you for visiting British Journal of Nursing and reading some of our peer-reviewed resources for nurses. To read more, please register today. You’ll enjoy the following great benefits:
What's included
-
Limited access to clinical or professional articles
-
Unlimited access to the latest news, blogs and video content